HIV AIDS and Information

HIV/AIDS AND INFORMATION This edition published in the Taylor & Francis e-Library, 2005. “To purchase your own copy o...

Author: Maria de Bruyn

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HIV/AIDS AND INFORMATION

This edition published in the Taylor & Francis e-Library, 2005. “To purchase your own copy of this or any of Taylor & Francis or Routledge's collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” This publication contains papers from Issue No. 6 of the FID Review, the official membership journal of the International Federation for Information and Documentation. Editor Theresa Stanton Manager, Public Relations and Publishing FID Secretariat Scientific Editor Professor Yuri Arski, Director All-Russian Institute of Scientific and Technical Information (VINITI) Moscow, Russia Published by: ASLIB-IMI on behalf of the International Federation for Information and Documentation (FID). Bulk orders and agencies in DEVELOPING COUNTRIES MAY APPLY FOR DISCOUNTS to ASLIB-IMI Publications Staple Hall, Stone House Court, London EC3 A 7PB, United Kingdom Tel: +44 (0)20 7903 0000, Fax: +44 (0)20 7903 0011 or Email: [email protected] ISBN 0-203-40388-6 Master e-book ISBN

ISBN 0-203-41252-4 (Adobe e-reader Format) ISBN 0-85142-465-1 (Print Edition)

© 2000 International Federation for Information and Documentation (FID), Theresa Stanton and the contributors. All rights reserved. Provided that FID, ASLIB and the author(s) in question are informed in writing beforehand, articles from this publication may be freely translated into other languages for further (free) dissemination in the developing world.

CONTENTS

Editor’s Note

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Editorial: Health and the Right to Information: The Case of HIV/AIDS Maria de Bruyn, Policy Analyst, IPAS, USA Learning Across Regions: The Role of the Sexual Health Exchange International Newsletter Joost Hoppenbrouwer, Executive Editor, Sexual Health Exchange, Royal Tropical Institute (KIT), Amsterdam, the Netherlands International AIDS Conferences: Extending Information Exchange Beyond the Session Halls Manju Chatani and Tim France (co-founder), Health and Development Networks, http://www.hdnet.org The ExtraMED Biomedical Periodicals Library and HIV/AIDS Chris Zielinski, Director, Health Information for Development project/ CEO, Informania Ltd./ExtraMed, United Kingdom HIV/AIDS and Information: Region Specific Information for Journalists Aulora Stally, Media Manager, SafAIDS, Harare, Zimbabwe How Safe are People’s Interpretations of Safer Sex? Health Education Messages in the Context of HIV/AIDS S.Veenapani and Meenakshi Gupta, Indian Institute of Technology, Mumbai, India Breaking the Silence: The Role of HIV-positive Speakers in AIDS Education and Information Susan Paxton, Social Researcher/AIDS activist, Key Centre for Women’s Health, The University of Melbourne, Australia Copyright Restrictions and Non-English AIDS Information Chris W.Green, AIDS Activist, Jakarta, Indonesia Training on Gender and Reproductive Health: Placing HIV Prevention in the Broader Context Maria de Bruyn, Policy Analyst, IPAS, USA and Nadine France, Technical Officer, World Health Organization (WHO), Switzerland.

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Selected Resources on HIV/AIDS

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89 96

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EDITOR’S NOTE Theresa Stanton, Editor, FID Review

Having obtained a BA (Hons) in South Asian Studies from the School of Oriental and African Studies, SOAS, University of London, Theresa Stanton moved to the Netherlands from the United Kingdom in 1985. She quickly immersed herself in the field of editing, translating and desk top publishing and worked in both the academic and commercial sectors. In 1990, Theresa joined the staff of the International Federation for Library Associations and Institutions (IFLA) and shortly afterwards the International Federation for Information and Documentation (FID) as Editor of the FID Bulletin (now the FID Review ) and Head of Publications. She was employed by both organisations simultaneously throughout the 1990s. After a brief absence from FID at the end of 1997, Theresa was invited to rejoin her colleagues at the FID Secretariat as Editor of the FID Review and Manager, Public Relations and Publishing in September 1998. Since leaving IFLA in 1998, she now devotes all her time to FID activities. It gives me great pleasure to present you with this special issue of the FID Review on ‘HIV/AIDS and Information’. The issue has been compiled and edited by Guest Editor, Ms Maria de Bruyn, IPAS, United States and contains 9 papers, each one examining a different issue regarding the right to information on HIV/AIDS. A useful HIV/AIDS information resources list has also been compiled by the Guest Editor and is featured at the back of the issue. It contains additional data on current HIV/ AIDS websites, listservs and publications. FID would like to take this opportunity to express its thanks to Ms de Bruyn for compiling such a diverse and impressive collection of papers for the FID Review. We are also indebted to each one of the contributing authors and thank them for giving a different and often unique perspective on the subject of information as it relates to HIV/AIDS. FID’s mission is ‘Information in the Service of Society’ and the papers

featured in this issue have certainly helped us to further realise this aim. In keeping with the spirit of the issue, and in particular with the points raised in the paper entitled ‘Copyright Restrictions and Non-English AIDS Information’ by contributing author, Chris W.Green (Indonesia), FID will allow papers from this issue to be translated into other languages for further dissemination in developing countries. However, please first inform FID (Email: ) and the contributing author(s) in question so that we can keep an updated record of all the translations available and make this information available through other HIV/AIDS websites and networks. This issue has been printed and distributed to FID members and subscribers to the FID Review thanks to the generous sponsorship of Aslib, the Association for Information Management, United Kingdom . Additional copies should therefore be ordered directly from Aslib-IMI, Publications, Staple Hall, Stone House Court, London EC3A 7PB, UK. Tel.: +44 (0)20 7903 0000, Fax: +44 (0) 20 7903 0011, Email: [email protected]. One single copy costs: NLG 80/GBP 20/EUR 30/USD 30. Again, in keeping with the spirit of this issue, Aslib has also agreed to give discounts on bulk orders and to agents in DEVELOPING COUNTRIES. In July 2000, Mr J.Stephen Parker retired from his position as Executive Director of FID and in November 2000, Ms Sarah Cummings, Manager, Professional Activities and Liaison, returned to the Royal Tropical Institute in Amsterdam having completed a twoyear secondment at FID. Sarah is currently active in a number of development projects, particularly with regard to the Internet and gender. She can be contacted at <[email protected]> As a follow-up to decisions taken at the last FID Council meeting in November 2000 in Lisbon, Portugal, FID is currently going through a major reorganisation process. This has inevitably had an impact on the publication schedule of the FID Review and outside sponsorship is therefore currently being sought for the next scheduled issue of the FID Review on ‘Water Information Issues’. Interested parties are invited to contact FID directly for further details. Finally, a statement will be sent by email to FID Members and subscribers to the FID Review at the beginning of May with more details of the future direction of FID as well as the FID Review. Please therefore ensure that the FID Secretariat has details of your current email address, contact person for FID matters, and fax number if you do not possess an email address. We hope that you enjoy this issue.

EDITORIAL: HEALTH AND THE RIGHT TO INFORMATION: THE CASE OF HIV/AIDS Maria de Bruyn, Policy Analyst Ipas, USA

Maria de Bruyn received an MA degree in West European Studies from Indiana University in the USA and an MA degree in Cultural Anthropology/Non-Western Sociology with a specialization in medical anthropology from the Vrije Universiteit in Amsterdam, The Netherlands. She is currently a Policy Analyst with the US office of Ipas, an international NGO working on women’s reproductive health. From 1989-January 2000 she was a project manager for reproductive health projects (mainly HIV/AIDS) at the Royal Tropical Institute in Amsterdam; there she was an Executive Editor of the international newsletter Sexual Health Exchange and manager of the AIDS Coordination Bureau resource centre. She is currently active as Policy Analyst at Ipas and may be contacted at: Ipas, 300 Market Street, Suite 200, Chapel Hill, NC 27516, USA. Email: [email protected] website: http://www.ipas.org Abrochure published by the International Federation for Information and Documentation (FID) states that ‘FID endorses and supports the principles of freedom of access to information embodied in the Universal Declaration of Human Rights. It aims to… promote and protect the interests of information users’ This issue of the FID Review provides an example of that approach by highlighting how information plays a key role in dealing with the HIV/AIDS epidemic. In the Review’s first issue, Renaldas Gudauskas, Vice-Minister for Information and Informatics in Lithuania, noted that ‘The basic economic resource is no longer capital, nor natural resources, nor labour; it is and will be knowledge.’ The primacy of knowledge—information provided by one person to another—is certainly the pivot around which efforts revolve in ensuring that the world’s populace is protected against HIV and sexually-transmitted infections (STIs) and enabled to deal with the consequences of AIDS. This importance of information has been reiterated in various international instruments that deal with human rights. For example, in 1995, governments were called upon at the World Summit for Social Development to: ‘Recognize that the new information technologies and new approaches to access to and use of technologies by people living in poverty can help in fulfilling social development goals; and therefore recognize the need to

HIV/AIDS and information

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facilitate access to such technologies’. In the same year information needs related to one of those social development goals— health—were addressed in the Platform for Action, adopted by governments worldwide at the Fourth World Conference on Women, held in Beijing, China. The Platform calls upon governments to collaborate with non-governmental organizations (NGOs) in paragraph 107e to: ‘Prepare and disseminate accessible information, through public health campaigns, the media, reliable counselling and the education system, designed to ensure that women and men, particularly young people, can acquire knowledge about their health, especially information on sexuality and reproduction, taking into account the rights of the child to access to information, privacy, confidentiality, respect and informed consent …’ Most of the contributors to this special issue of the FID Review illustrate how information is being used in the field of HIV/AIDS in accordance with recommendations such as those above. Their experiences come from diverse geographical regions—Australia, India, Indonesia, Zimbabwe—as well as from internationally-oriented projects. Together they show that the right to health-related information has varied aspects. Information must be collected and made available, be timely and support efforts to deal with the health problem effectively and take into account how information consumers will receive it. The final contributor addresses a remaining challenge: making information equally available in our multilingual world.

How information can be gathered and disseminated The first three papers examine both traditional and newer ways in which information is being gathered and disseminated to ‘stakeholders’ in the field—researchers, policymakers, the media, programme designers and implementers, and people living with HIV/AIDS. The traditional approach is exemplified by the numerous NGOs in different parts of the world that are maintaining AIDS Documentation Centres. Such centres can enable those working in the field to access data, ideas and resources so that their policies and interventions are informed by what has already been learned and achieved. Documentation centres are common in the field of HIV/ AIDS. In 1994, for example, AIDS Infoshare opened the first community HIV/AIDS library in Russia. Library materials have been donated by or purchased from hundreds of organizations, publishers and individuals throughout the world. In addition to making the foreign-language resources available free of charge, materials are translated into Russian by AIDS Infoshare in conjunction with UNAIDS, Médicins Sans Frontières Holland, USAID and others; professionals in the field help with the editing. To make the library accessible, materials are distributed in different ways including: a mail order catalogue that is updated and sent with the AIDS Infoshare’s quarterly newsletter Round Table, on diskette through a user-friendly DOS-compatible computer programme called Infodis, via the

Editorial: Health and the right to information: The case of HIV/AIDS

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Internet, and to walk-in visitors. Joost Hoppenbrouwer writes about a traditional approach that is being adapted to the new possibilities offered by the Internet. For those working on HIV/AIDS, it is a given that all interventions related to prevention and care must be adapted to local cultural and social contexts. While this is true, it is also true that people implementing programmes can benefit from learning about ideas and interventions carried out elsewhere— interventions can be adapted so that people don’t need to keep ‘reinventing the wheel’. The international Sexual Health Exchange newsletter has been serving as a platform for such information exchange since 1989, placing experiences within the health promotion approach. Health promotion provides a framework that implicitly reinforces people’s rights since its five areas of action are all dependent on information access and use: developing personal and organizational skills, strengthening community action, creating supportive environments, reorienting health services to clients’ needs and building healthy public policy. Given that many of the newsletter’s subscribers live in technology-poor settings, the newsletter’s publisher is resisting the tendency to abandon the print format in favour of an electronic version; rather, the newsletter is being made available in both forms. An example of innovation that takes advantage of information technology is given by Tim France and Manju Chatani, who explain how information collection and dissemination can be accelerated. The field of HIV/AIDS is noted for its large international conferences that draw thousands of participants (12,000 in 1998). In the early years, international conferences were held annually; they later came to be held every two years, with regional conferences taking place in the alternate years. A criticism of these regional and global AIDS conferences is that they cost too much relative to the numbers of people who can benefit from them. An attempt was made to address this during the international conference held in Amsterdam in 1992, when a group of delegates were asked to participate in a special project whereby they committed themselves to disseminating conference information upon their return home through special seminars, meetings, newsletters and media interviews. However, in 1998, a concerted effort began to make conference proceedings available to people around the globe through e-mail discussion fora. Teams of reporters—including professional media workers but also NGO representatives, physicians and activists—put major conference presentations into electronic form, summarize important points made at sessions and gather comments on important issues. These reports are then sent to e-mail forum subscribers during and after the conferences. In subsequent years, the fora have also been used by conference organizers to generate input and feedback on conference themes so that these are incorporated into conference planning. Of course, such innovative projects do not serve people without access to the Internet, either because funds are lacking, service providers are not available locally, or the support needed is unreliable (e.g., frequent electricity outages). Chris Zielinski reports on an ‘intermediate’ service that is making the latest research data from developing countries more widely available: the ExtraMED Biomedical Periodicals Library on CD-ROM. Though it does not overcome the problem of inadequate funding, it does help address the lack of worldwide web access because an increasing number of libraries in developing countries do have computers. It is also playing a role in South-South and South-North


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communication.

Helping the media keep AIDS on the public agenda The second aspect of the right to health-related information concerns information’s timeliness and its supportive role in efforts to safeguard health. When AIDS was first recognized as a worldwide epidemic, it received a great deal of attention. The media wrote about it extensively though not always accurately or objectively and an increasing number of organizations developed prevention and care programmes to begin dealing with its consequences. With the advent of antiretroviral therapies (ART), which make it possible for people living with HIV/ AIDS (PHAs) to live longer, media attention began to waver AIDS no longer seemed to be a fatal disease, at least in the industrialized nations, and therefore not so newsworthy. Those dealing with the effects of the epidemic in the developing countries and Eastern Europe have been attempting to counteract this tendency for various reasons. First, ART does not represent a cure for AIDS but is a new form of treatment; people who have received ART are still dying of AIDS. Second, ART is still not available to the vast majority of PHAs in the world; for them, the consequences of the disease are therefore even more severe than for PHAs in industrialized nations. The idea that AIDS is no longer such a serious problem can moreover lead to ‘complacency’ on two levels. Individuals may begin to believe that preventing HIV infection is no longer urgent or necessary, while international donors to HIV/ AIDS programmes may decide that their financial contributions can be reduced or withdrawn. ‘Keeping AIDS on the public agenda’ has therefore become a necessity and the media have a major role in this regard. Various efforts are being taken to achieve this goal. On the international level, the Panos Institute based in London, United Kingdom, produces briefing documents for the media so that they have access to basic information on AIDS and reproductive health issues, examples of interventions that work and contact information for experts in the field. Journalists for the print and broadcast media can use the briefings as background and resource material for producing articles, opinion pieces, and radio and television programmes. Panos further gives small grants to partner organizations to adapt and translate AIDS information for the media in their own countries and has established AIDSNet, an electronic information network of African journalists reporting on HIV and AIDS. The Institute has also drawn up a code of conduct for reporting on HIV/AIDS. 1 Aulora Stally describes how one of the Panos Institute partners in Zimbabwe, SAfAIDS, is assisting media personnel in Southern Africa to ensure responsible coverage and accurate communication about HIV/AIDS. This involves: changing journalists’ attitudes (e.g., AIDS is hopeless); helping them give AIDS a ‘human face’ (e.g., reporting that helps reduce stigmatization of PHAs); challenging them to inform and motivate, rather than try to impress their readers (e.g., through sensationalistic stories); and providing them with background information so that their reports can alleviate confusion about AIDS among the public. SAfAIDS’ Media Unit serves as a resource base for training journalists, creating information packs and management of an e-mail forum through which media workers can share views, ask questions, etc. 2


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Reactions to information Information management does not, of course, simply involve the collection and dissemination of information. Attention must also be paid to how recipients of information react to it, especially when it is related to health issues. Do they find the information credible? How do they incorporate it into their belief systems? Does it inform their decisions? Does it ultimately contribute to their health? HIV/STI prevention programmes have long been investigating how their health information messages are received so that messages can best be tailored to have an impact. The complexity of this effort is illustrated by S. Veenapani and Meenakshi Gupta in their report on how four groups in India have reacted to prevention messages about the risks of HIV/AIDS male truck drivers, gay men, female brothel keepers and commercial sex workers, and female and male students. Their findings show that people interpret information according to their own particular circumstances, sometimes to their own detriment because they perceive others and not themselves to be at risk. A concomitant of this perception is a tendency to ‘blame others’ for HIV/AIDS, which can contribute to increased stigmatization of PHAs. Susan Paxton’s report shows how involving PHAs in prevention efforts can help overcome this tendency. Her research with 75 PHAs who work as health educators on AIDS in various countries has found that these public speakers not only can contribute to lessened stigmatization and discrimination; they also can persuade people to think anew about their personal vulnerability to infection. Her separate study on school students’ responses to PHA educators affirmed this; health education discussions led by PHAs caused the youth to re-examine their responsibilities regarding the prevention of HIV infection.

The role of information in responding to challenges A noteworthy point in the contributions by Veenapani & Gupta and Paxton is that offering information ‘face-to-face’ may be the prerequisite for persuading people to make behavioural changes that can protect their health. The media can help keep the issue ‘alive’, while documentation centres and conference reports can provide programme implementers and their target audiences with the facts. If people are to perceive information as being relevant to their own personal lives, however, they must see how it affects them or those close to them directly. Training programme implementers to use information in this way has consequently become a common strategy to address HIV/AIDS. A ‘problem-solving’ approach often underlies such training as it does not simply convey information but encourages participants to relate the information to their own circumstances. The international NGO Ipas is collaborating with the World Health Organization to develop such a workshop curriculum for training youth workers and adolescents to address HIV/ AIDS together with other aspects of reproductive health: HIV/STI infection, violence, unwanted pregnancy and unsafe abortion. The rationale is that the same types of risk behaviours


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and situations can contribute to all four health problems; discussing them together better reflects what happens in people’s lives. The workshop is based on a participatory rather than ‘didactic’ approach; participants engage in discussions and analysis to understand how gender-based factors influence their lives and reproductive health problems. Basic information is transmitted during discussions and shared through handouts during the workshop. Participants also receive the entire curriculum (in English, Spanish or French), background materials and publications produced by Ipas, WHO and other organizations. To ensure its replicability in different regions of the world, the workshop is being offered at regional and global AIDS and sex education conferences; in addition, NGOs in different countries are testing it and providing feedback for revisions. A key element in the project is the sharing of workshop reports and the curriculum through Internet sites and e-mail discussion fora.

Barriers to information access The field of HIV/AIDS is notable for the fact that it generates a great deal of information; moreover, efforts to disseminate and use that information are varied, innovative and becoming increasingly ‘democratic’ with the further use of the Internet. Much of the information that becomes available, however, is in English—a problem for the millions of interested parties who do not have command of the language. Chris Green uses the example of evolving treatments for HIV infection as a basis for addressing this issue. A tremendous amount of research is being carried out and both health-care providers and PHAs need to remain constantly aware of the newest developments. But if the information required is not available free of charge, how can they do this? Green therefore leaves us with a question: how can copyright laws be adapted so that translation possibilities are facilitated?

So what can information specialists do? Efforts to safeguard people’s health begin with their being able to exercise the right to ‘receive and impart information and ideas through any media and regardless of frontiers.’ 3 Efforts in the field of HIV/AIDS demonstrate the importance of that principle. How can librarians and information specialists support that right? In their own countries, they can seek ways to provide tailor-made information to selected groups. For example, university libraries can provide regular updates to researchers and physicians on the latest research and treatment advances or to training institutes on new resource materials. As José-Marie Griffiths has pointed out (FID Review (1999) Vol. 1. No. 1, p. 13–20): ‘users need help to extract the information they need and to interpret it in the context of the immediate need’. This is especially the case for journalists—librarians could emulate the outreach to media workers carried out by Panos and SAfAIDS, so that the public is better informed. And librarians can use their skills to serve PHAs by liaising with self-help groups and associations of people living


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with HIV/AIDS to help them gain access to the information that is most relevant to their concerns. International collaboration can be envisioned as well. Traditional means of providing information and documentation—printed literature, libraries and documentation centres—will long remain in place, either because people prefer them or because they simply do not have access to the latest information technology. Many NGOs managing AIDS Documentation Centres have extremely limited budgets. Donations of relevant materials from libraries that no longer need them would certainly be appreciated. Technical assistance in library management would also be of great help. Information specialists can assist NGOs that serve the media through partnerships that focus on ways of ‘repackaging’ information to make it media-friendly and keeping the NGOs up-to-date on new information sources. Do librarians and information specialists usually see themselves as advocates of human rights? FID is encouraging you to do so and the field of HIV/AIDS is offering at least one opportunity. With some thought, the action suggestions given above can undoubtedly be expanded.

Notes: 1. The Panos Institute website can be accessed at: http://www.oneworld.org/panos 2. Similar efforts with the media are being undertaken on the national level as well. An example is the AIDS Media Centre & Training for Journalists (PMP-Aids) in Indonesia (e-mail: [email protected]) Sabrawi, S.R. (1996). Indonesia: AIDS Media Centre for Journalists, AIDS/STD Health Promotion Exchange, 4:7–8 3. Article 19, Universal Declaration of Human Rights

LEARNING ACROSS REGIONS: THE ROLE OF THE SEXUAL HEALTH EXCHANGE INTERNATIONAL NEWSLETTER Joost Hoppenbrouwer Executive Editor, Sexual Health Exchange Royal Tropical Institute (KIT) Amsterdam, The Netherlands

Joost Hoppenbrouwer (1963) is a public health specialist, who has been working in several areas of health promotion and education for the last few years. He is currently the co-ordinator of the Dutch AIDS Co-ordination Bureau, in which six Dutch international development organizations work together in the field of HIV/AIDS and sexual health. He is also executive editor of the Sexual Health Exchange, an international quarterly newsletter on HIV/AIDS and sexual health issues. From 1996–98 he worked for the World Health Organization in the Zambian National AIDS/STD/TB & Leprosy Programme (NASTLP), where he was involved in policy development, intersectoral collaboration and programme implementation. From 1992–96 he worked as a Health Promotion adviser at the National University of El Salvador (UES) in curriculum development, research and community health programmes. Joost can be contacted at the following address: Joost Hoppenbrouwer, Executive Editor, Sexual Health Exchange, AIDS Co-ordination Bureau (ACB), c/o Royal Tropical Institute (KIT), P.O. Box 95001, 1090 HA Amsterdam, The Netherlands. E-mail: [email protected] Tel. +31–20–5688428, Fax: +31–20–6654423. Websites: http://www.kit.nl/ibd/html/acb.htm (Aids Coordination Bureau) http://www.kit.nl/ibd/html/exchange.htm (Sexual Health Exchange newsletter)

The role of the sexual health exchange international newsletter

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Introduction In a world where information is ever more important, information exchange is essential for promoting community development and the empowerment of people. The international newsletter Sexual Health Exchange (S/HE) contributes to such exchange of information on sexual and reproductive health issues, including all aspects of HIV/AIDS. With some 12,000 subscribers in more than 200 countries and covering issues from around the world, the newsletter allows people and organisations to learn from each other’s experiences across regions. While the social, cultural, economic and political contexts of countries and continents are very different, the problems people face in the field of sexual health, including HIV/AIDS, are often similar. Learning how others deal with these problems in similar or different ways can strengthen the confidence in one’s own approach or provide ideas for change. Because the HIV/AIDS epidemic is at different stages in different countries, learning across regions allows individuals, communities and organisations to be more efficient in preventing the further spread of HIV. They can adapt models of education, care and support that have proved to work in practice.

The background of the newsletter In 1987, with HIV/AIDS already well on its way to becoming a major health problem, the World Health Organization realised the need for exchanging information and programme experiences among health educators and communicators. They commissioned the Royal Tropical Institute (KIT) in Amsterdam, The Netherlands, to produce an international newsletter, the AIDS Health Promotion Exchange, in English, French and Spanish. The objective was to facilitate the ‘exchange of innovative ideas and materials and the sharing of evaluation results from programmes’ among countries of the world, thereby contributing to the quality of health promotion programme planning. These objectives are as valid today as they were then. Unfortunately, after a few years, the French and Spanish versions of the Exchange ceased publication as funding for those versions was withdrawn. In 1991, WHO decided to concentrate its own efforts on other publications in the HIV/AIDS field and overall management of the newsletter moved to KIT. KIT decided to continue offering the newsletter free of charge to persons and institutions in developing countries and Eastern Europe; subscribers in North America, Western Europe, Australia, New Zealand and Japan are asked to pay a low subscription fee. This contributes about 5% of the budget; in recent years, the German development co-operation organization GTZ (Gesellschaft für Technische Zusammenarbeit) provided most of the funding and made it possible to produce special issues in French and Spanish. As of January 2000, financial support comes from the Royal Dutch Embassy in Zambia. Since funding is limited, little ‘marketing’ can be done. Most new subscribers have seen the newsletter (e.g., at a conference or another organization) or have heard about it. Nevertheless, the estimated number of new subscriptions is 500–600 per year.


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In 1995, the newsletter continued under a new name, AIDS/STD Health Promotion Exchange, recognising the importance of sexually transmitted diseases (STDs), both as health threats on their own and as a risk factor for HIV transmission. The same year also saw a new partnership between the Royal Tropical Institute and the Southern Africa AIDS Information Dissemination Service (SAfAIDS), based in Harare, Zimbabwe, in producing the newsletter. This new collaboration not only embodied the spirit of exchange and collaboration across continents; it also took advantage of the considerable knowledge and experience which SAfAIDS had built up. In 1998 the newsletter’s name changed again to Sexual Health Exchange (S/HE) so that other sexual and reproductive health issues could also be addressed. The impact of HIV/AIDS on different sectors of society, and care and support strategies to respond to this impact, have nevertheless clearly remained within the newsletter’s scope. Since the start of the Exchange, people and organisations working in the field have been invited to actively participate in producing the newsletter by sharing their programme experiences with others. The aim is to promote a global exchange since HIV/AIDS was a global rather than a regional problem. Lessons learned in one country can be shared with areas where the effects of the epidemic have not yet become so visible or where programmes to address them have been slower getting off the ground. The newsletter also points out approaches that had not worked or ways in which problems in programme implementation had been overcome. Today, 13 years later, the Exchange is still based on these same principles, which have proved to be successful in appealing to an ever-growing number of subscribers.

A focus on health promotion As clearly shown by its original name AIDS Health Promotion Exchange, the concept of health promotion forms the basis for the newsletter’s orientation. This concept is rooted in a holistic conception of health which acknowledges its physical, mental and social dimensions and not ‘merely the absence of disease’. The concept of health promotion was defined in the Ottawa Charter, adopted at WHO’s 1986 International Conference on Health Promotion in Ottawa, Canada. Its key concepts are community participation, intersectoral collaboration and integrated approaches to health services that recognise that no health problem can be solved by one sector (e.g., the health sector) alone, nor with one strategy: curative, preventive and promotive approaches need to be integrated. A successful approach to dealing with the multiple causes and impact of HIV/AIDS and other sexual health problems builds on the active involvement and participation of all people affected. This is not just a matter of being more successful in terms of outcomes, but especially in terms of increased ownership and the underlying prerequisite of empowering people and strengthening communities to take control over their own lives, health and environment. Health promotion works through concrete and effective community action…. This requires full and continuous access to information and learning opportunities.


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Health promotion distinguishes five areas of action: • Building health public policy • Creating supportive environments • Strengthening community action • Developing personal (and organizational) skills • Reorienting health services. Through special thematic issues and articles, the Exchange focuses on these five key health promotion strategies in the field of HIV/AIDS and sexual and reproductive health. Building healthy public policy Because HIV/AIDS and other sexual health risks are related to culture, gender and sexuality issues, they touch on all societies’ core values. Healthy public policies are policies in all sectors that have a beneficial effect on public health. The newsletter therefore does not merely focus on individuals’ health but also addresses policy and legal issues at the national and international levels that affect sexual health problems and the responses to them. A recent issue, for example, discussed national reporting and notification policies regarding cases of AIDS in different countries, while issues this year will address policies on reproductive health services for refugees, integrating HIV/ AIDS into development programmes and the role of advocacy in influencing the policy development process. Creating supportive environments The inextricable links between people and their environment constitute the basis for a socio-ecological approach to health. Health and disease do not occur in a vacuum; physical, socio-economic and cultural factors are important determinants. Examples of sexual health issues influenced by cultural environments, as discussed in the Exchange, include the problem of female genital mutilation (FGM), promoting male involvement in family planning, working with churches in setting up special education programmes and involving community leaders. Other examples of supportive environments which the Exchange has addressed include skills-building programmes for working-class women, workplace HIV/AIDS programmes, social marketing programmes facilitating cheap and easy access to condoms, and the development of innovative technologies such as the female condom and microbicides that facilitate women’s control over their own sexual and reproductive health. Strengthening community action Health promotion works through concrete and effective community action. At the heart of this process are community empowerment, ownership, and control of their own endeavours and destinies. Community development draws on existing human and material resources to enhance self-help and social support, as well as public participation and management of (sexual) health issues. This requires full and continuous access to


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information and learning opportunities. Community action plays a very important role in almost all issues of the Exchange. Clear examples are the 1999 theme issues on ‘Supporting community organisations for sexual health promotion’ and ‘Providing support to care and self-care for people living with HIV/AIDS’. These issues presented many examples of community action, such as sex workers organising themselves in India, and community support for people living with HIV/AIDS (PHAs) in various countries. Developing personal and organizational skills For effective community action, individual people need skills that can be developed through access to information and education. Knowledge and skills allow people to make their own choices and take control over their own bodies and lives. Organizations also need skills in carrying out effective programmes that respond to community needs. The newsletter has featured many examples of this aspect of health promotion, such as skillsbuilding workshops for women to protect themselves against sexual violence and abuse, a special theme issue in 1998 on peer education, self-empowerment and self-management health education for PHAs and sex education for young people in various countries. Reorienting health services In order to better contribute to the goal of sexual health promotion, health services need to move beyond their responsibility for providing clinical and curative services. In this context, the Exchange has addressed youth-friendly reproductive health services, sexual health services for men, reproductive health services for refugee populations, health services providing special support to PHAs and of course all kinds of sexual and HIV/AIDS education activities.

Bringing together people and ideas Throughout the different stages of the newsletter’s production process, professionals and organisations from many countries share information with us on programme activities, research, opinions, innovative approaches and evaluation results. The result is a 16-page, quarterly newsletter with different types of articles around a central theme, with contributions from a wide professional and geographic background. Theme issues Each year the editorial team selects four central themes that represent particularly relevant or current issues from the field of HIV/AIDS and sexual health. They are usually broad enough to allow flexibility in selecting article topics and authors. Themes can focus on specific issues, groups in society or programme approaches. Themes of the last few years have included sexual and reproductive rights, gender equity, reporting and notification of HIV/AIDS, dual protection against HIV/STIs and unwanted pregnancy


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(i.e., use of contraceptives and condoms), family planning, sexual abuse, HIV/AIDS and development, mother-to-child transmission of HIV, programme sustainability, HIV transmission through drug use, religion and HIV/AIDS, HIV/AIDS and the workplace. Other themes include approaches—such as advocacy, care and support, community organisation, peer education, reorienting health services—or specific groups in society such as people living with HIV/AIDS, men (and the need for their greater involvement in sexual health), persons with disabilities, youth and the military. The newsletter is committed to maintaining an attitude of respect and neutrality towards values and cultural backgrounds from around the world. However, we do not avoid issues with a controversial character or which are sometimes even considered taboo in some parts of the world. Representatives of minorities and disadvantaged groups are frequently given a voice. From the health promotion point of view, health is considered a human right for all people of the world, irrespective of their sex, age, race, religion, socio-economic or cultural background. As such, gender equity has been a central issue in the various themes. Types of articles The Exchange was not conceived as a scientific journal, but rather as a platform for exchanging practical programme experiences among professionals and communities working in sexual health promotion and HIV/AIDS. The different types of articles therefore reflect the different aspects of health promotion practice: policy development, action-oriented research, programme implementation and evaluation. The Editorial is often written by a guest author who is experienced and knowledgeable about the particular theme. He/she provides a broad overview of the key issues and highlights innovative aspects of programmes. While the relevance of specific themes or sub topics may vary from region to region, similarities or differences in approaches provide important lessons. Intervention Planning articles focus on the lessons learned in planning a particular programme or intervention. Programme Features describe programme experiences in a particular country or setting in relative detail, highlighting particularly salient aspects. The Country Watch section includes short articles about a programme or activity in a specific country. The Programme Feature and Country Watch sections are a particularly good source for comparing approaches in different settings. Policy Notes address the policy development process and the ways in which policies affect programme practice. These articles usually describe national or international policies from governments, UN agencies or other international organisations, but representatives from the grassroots level also write on approaches to successfully influencing the policy-making process of national and international bodies. Research Notes present the general design, implementation and results of actionoriented research projects, with special emphasis on their practical implications. Recent examples include acceptability studies of the female condom and vaginal microbicides, the impact of peer education programmes, provision of sexual health services to men, and the impact on PHAs of disclosing their HIV-status. Evaluation Notes focus on qualitative or quantitative evaluation of sexual health programmes. They provide insight both on


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methodological aspects of monitoring and evaluation and on actual lessons learned from the programmes that were evaluated. Special Articles allow discussion of specific aspects of a theme, opinion articles or short overviews while shorter pieces highlight concise factual information or main points of an issue. Finally, the Global Bulletin Board presents news on conferences and practical information on new books and publications, learning materials and useful addresses. The editorial advisers The editorial advisory team of the Exchange consists of experts in the field of sexual health and HIV/AIDS from different countries and types of organizations. With their combined experience in advocacy, policy development, programme implementation and research, the advisers play an important role in selecting themes, suggesting specific topics and authors, and commenting on draft articles; they also contribute their own articles from time to time. When the newsletter was managed by WHO, most of the editorial advisers came from UN and donor agencies. In recent years, however, the proportion of advisers representing PHAs, NGOs and universities has steadily increased and they now form the majority. The current group of advisers comprises individuals in Africa (Ghana, Tanzania, Zambia and Zimbabwe), Asia (India, Indonesia and Israel), Latin America (Argentina, Brazil and Peru), Europe (Germany, Italy and Switzerland) and the USA. Future plans include expansion of the team with advisers from the Middle East, West Africa and South-East Asia. Not only will this help guarantee advisory input from different geographic regions, but it will also increase input from countries in the South, where the main readership of the Exchange resides. Authors Efforts are made to include a relatively broad geographical distribution of authors in each issue. Potential authors are often proposed by the editorial advisers or are otherwise known to the editors to be active in the field of a particular theme. Publications in scientific journals, the grey literature, reports, presentations at conferences, the world wide web and electronic discussion fora are also useful entry points for finding contributors. In recent years, Exchange readers have been encouraged to submit articles; for example, upcoming themes have been announced in boxes with invitations for submissions. If an electronic version is published in the future, it may also be easier for readers to contribute through a discussion forum. Since many readers are involved in community-based intervention programmes, publishing on their project in the newsletters gives them an opportunity to share their experiences with a wider, international audience—a chance they would often not be given by scientific journals. Each author’s full contact information, including e-mail when available, is published with their article. This makes it very easy for readers to contact them for additional information and to expand their networks even beyond their own national or regional


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borders. In this way, exchanging information often goes with reading the article itself. ‘Thank you for the copy of the issue on intermediaries for youth. I found it very useful, and have forwarded copies to the staff of the “Talking with Kids about HIV/AIDS” project throughout New York State. I am also writing directly to the other contributors to this special issue, so you have assisted in building international networking possibilities!’ (Cornell University, USA)

The newsletter’s audience Who are our subscribers? Where are they? As mentioned before, the Exchange currently has some 12,000 subscribers in more than 200 countries. As theTable shows, they are spread around the world, though Sub-Saharan Africa is especially well-represented. Some African countries have large numbers of subscribers: Nigeria has more than 850, Uganda and Zimbabwe almost 500 each, Ethiopia some 400, and Ghana, Kenya, Tanzania and Zambia about 300 subscribers each. In Asia, we reach the largest audience in India, some 1150 subscribers. In Latin America, with almost 400 subscribers, Brazil is clearly the leading country. Language is probably an important obstacle to increasing the number of subscriptions in the latter regions, though occasionally special issues are published in French and Spanish. Nevertheless, readers in Spanish-speaking, Francophone and Lusophone countries represent almost a quarter of our subscribers. It is interesting to note that in certain countries and regions where HIV/AIDS has not yet grown into a major health problem, and/or where issues of sexuality and gender are not always easy to discuss, there are relatively many readers. For example, Arab countries represent almost 6% of the total number of readers.

Reader response Feedback from readers through letters and e-mail gives some insight into why a wide range of people and organizations appreciate receiving the Exchange: ‘Your newsletter appealed to me so much that I would like to request back volumes which should be of immense value in our Govt of India-NACO project on HIV-reduction intervention in adolescent and youth’. (India) ‘This bulletin will be very useful for continued education, training and research purposes in our Ministry of Health. Please keep us on the mailing list and send us at least 30 copies for use in the Ministry of Health headquarters in Riyadh and in the Training Centres’. (Saudi Arabia) ‘I provide development resources to groups in Africa which produce educational radio programmes in Sub-Saharan Africa. The Exchange has contributed to our understanding and broadened our perspectives on this subject over the years’. (The Netherlands) Many readers have written us about the usefulness of the Exchange for their programme


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activities: We are really finding the contents very useful—especially in the planning of our current programme targeting street kids in Enugu urban slums’. (Nigeria) ‘I am a nurse/midwife and chief of the post of the above health unit. I am also the AIDS co-ordinator within my health area; I have found your newsletter a very important instrument as far as my job is concerned’. (Cameroon) ‘Your magazine is very important for our club in the fight against the global epidemic AIDS’. (Ethiopia) Table 1 : Geographic distribution of subscribers SUB-SAHARAN AFRICA:

44%

East Africa

14%

Southern Africa

12.5%

Central Africa

2.5%

West Africa

15%

Arab World

6%

ASIA & PACIFIC:

24.5%

South Asia

13.5%

South-East Asia

7%

China and East Asia

2%

Pacific States

2%

LATIN AMERICA & CARIBBEAN:

16%

South America

8%

Mexico & Central America

5%

Caribbean

3%

Eastern Europe and Former USSR

2.5%

INDUSTRIALISED COUNTRIES

7%

Western Europe

4.5%

USA and Canada

2.5%

Australia and New Zealand

0.2%

‘I am running an AIDS programme and find your newsletter gives a lot of useful information’. (Kenya) ‘I have recently acquired one issue of your publication and I read it from cover to cover’. (Libya) ‘I have gone through your bulletin and found it highly informative and very useful, especially to the third world countries’. (India)


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‘I have read one issue and found it very useful for our peer education training project’. (Lesotho) ‘The information in the publication will be of great use in the preparation of materials for lectures and seminars scheduled in our project with Nicaraguan doctors’. (Nicaragua) We would like to use your publication for our training and communication on various subjects with the trainers, volunteers, health workers and the people in the grass-roots level’. (India) ‘We find the Exchange very useful for our work, particularly for conducting information dissemination in the communities’. (Indonesia) ‘I find your magazine very helpful in my career. It contributes much in transforming appropriate and relevant information to our community in general and to our staff members in particular’. (Ethiopia) ‘I have always looked forward to the arrival of the Exchange, especially because I’ve been writing a column in the Sun Star Daily, a community paper with the largest circulation in Cebu City and Province, and now host a public affairs programme in DYSS, an FM station here in our city’. (Philippines) ‘Your publication is very interesting and will be a good resource for our project called ‘Motivation for safer sex’ for rural youths’. (Thailand) ‘I am a trained HIV/AIDS counsellor. We have a lot of patients with HIV/AIDS, but we have a shortage of current information’. (GP, Ethiopia) ‘I here am a health education programme producer to a local radio in my country Ethiopia. I found the Exchange very useful to work’. (Ethiopia) Originally, the newsletter was conceived as a publication for policy-makers, health educators and communicators. Lecturers and teachers at universities, schools and other training institutions do indeed value the Exchange as the following comments exemplify: ‘Ours is a state government nursing institution; our lecturers find your AIDS publication very useful’. (India) ‘I am working as a professor in a university college. We also have extension activities in over 60 rural villages. Hence your quarterly publication will be of much help to me for information sharing and awareness creation among the students as well as among the rural people’. (India) ‘The newsletter is of such a high quality that I feel the scientific community and other groups in this country would benefit from it’. (WHO representative, Uganda) ‘Thank you very much for your newsletter; it is a very valuable reading for our research staff’. (University, Indonesia) ‘We are very interested to continue to receive this important material for research’. (University, Peru) Over the years the Exchange has drawn a more diverse public as well, as clearly shown by two reactions from readers: ‘I’m a bar owner and there are several sex workers in my bar. I want to know


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more about the deadly AIDS, so please send your magazine’. (Ethiopia) ‘I am the director of a seminary for the formation of future priests, so receiving your newsletter will have a multiplying effect’ (Bolivia) Reactions from readers show us that the newsletter is also considered a useful resource for libraries and documentation centres in universities, NGOs, communities, international NGOs and UN agencies: ‘Your newsletter is found to be very useful as a reference material in our library’. (Ethiopia). ‘We are organising an AIDS resource centre for our counsellors, and we have already found that the insights gained from the Exchange have been extremely helpful in programme planning’. (Makarere University, Uganda) ‘We are very glad to receive your newsletter. It will be in our Reference Section for 4500 medical students, 900 residents and 1400 professors’. (University, Peru) ‘The publication is an important addition to our reference collection and has been placed in the Documentation Centre’. (UNESCO representative, Caribbean) It is through the libraries, information and documentation centres that the newsletter is reaching far more people than the print-run of 12,500 copies suggests. In addition, many people write us that they share the information with others, either directly, or by using it for other publications: ‘Access to your newsletter will not only benefit me, but I intend to pass on the information to others I interact with’. (Zambia) ‘I am actually going to use some of that information for our own newsletter. We work mainly with groups based in Africa’. (USA) Ministries of Health or other Government institutions, UN agencies and international NGOs frequently ask us to send them multiple copies, which they can distribute among their hospitals and health centres, departments, branches or country offices: ‘We thought that your publication might be of great interest in the nearly 60 dispensaries spread all over the focal point of Tanzania’. (Tanzania) ‘We would be most grateful if you can send us 10 copies; these will be distributed to our community development programmes, hospitals, non-formal education programme within Nepal, where they will be of valuable assistance in raising staff awareness regarding AIDS’. (Nepal) ‘On behalf of ACTION AID, I would like to subscribe to the Exchange. Could you also send it to our offices in developing countries?’ (UK) ‘Pathfinder International would like to request subscriptions for our field staff’ (USA)


19

Disseminating the Exchange: electronic media or paper? In recent years, information and communication technology has seen revolutionary developments, with the Internet being the clearest example of how traditional information channels are being supplemented. E-mail plays an increasingly important role in communication and has cut the cost of international communication drastically. While some fear there will be a lack of access to these new technologies in developing countries, which will only widen the gap between them and the industrialized world, vibrant electronic information exchange is gaining ground in most countries, including the poorest. Access to computers and the Internet is increasing rapidly, e-mail has become a major means of communication, and electronic mailing lists and discussion fora enjoy rapidly growing popularity. More and more organizations in developing countries are also developing their own high-quality web sites. Advantages of a printed version of the newsletter These developments in information and communication technology (ICT) have sparked a discussion about the desirability of making the Exchange available through electronic channels. In 1999, a small survey was held among our readers, asking their opinion about electronic ways of publishing and disseminating the newsletter in addition to, or even instead of, the familiar hard copy. The reactions received led us to conclude that although readers welcome additional channels of disseminating the Exchange, the printed version should not be discontinued for several reasons. First, the vast majority of people in developing countries do not have access to computers, let alone e-mail or the Internet. Even with the rapidly increasing access, this will probably be the case for many years to come. Another problem is that in many organisations access is restricted to a limited number of people such as the director or the information and communication officer. The service of Internet providers in many countries is below standard, while the cost of being online for long periods to search, browse and download information can be prohibitive, especially given the unreliability and low quality of telephone lines in many countries. A print version of the newsletter has obvious advantages over an electronic one, in that it can be shared and read in places where there are no computers, electricity or telephone lines. It is also more visually attractive than electronic copies. Of course electronic copies, either from the Internet or e-mail, can be printed out, but the reality in many developing countries is that printers are scarce, there is no toner or paper, and generally the quality of printing is below standard. Photos and other illustrations especially would not come out satisfactorily. The end product would be very different from the high quality printed version of the current Exchange. Exchange readers clearly indicated their preference for the ‘ordinary’ printed copies. Receiving a printed publication appears to give a much stronger feeling of actually being a subscriber to a publication, and of being part of a large group of people and organisations exchanging experiences from all over the world.


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Receiving a publication by mail may become less and less common in a world of rapidly expanding ICT, but the Exchange readers clearly indicated their preference for the ‘ordinary’ printed copies. Receiving a printed publication appears to give a much stronger feeling of actually being a subscriber to a publication, and of being part of a large group of people and organisations exchanging experiences from all over the world. Browsing web pages will never give this feeling of ‘being a part of’, while with e-mail discussion lists, you are just an e-mail address on some distant server. The ‘slow’ character of ‘traditional’ printed newsletters may have certain disadvantages but also important advantages. People with access to e-mail and the Internet, and especially those subscribed to e-mail information and discussion lists, are acquainted with the fact that more access to information can easily lead to information overload. It is often impossible to read or even scan all incoming e-mail. In contrast to discussion lists, a print newsletter provides an important service to its readers by making a selection of the most relevant topics of a particular theme: it frames the most important issues and offers information in an organized way. A lot of time and attention goes into making a careful selection of themes and topics, finding authors, and editing contributions. Because electronic media seem to be more volatile, it can be imagined that perhaps less attention might be paid to editing though this of course depends greatly on the editorial policies of electronic newsletters. The following reaction from a reader in the Philippines exemplifies this point: ‘We find your publication one of the most useful of all the publications circulating around, mainly because of its readability, conciseness and timely perspectives’.

Those who have access to e-mail and internet will often not find time to read all incoming e-mail messages, or browse all the undoubtedly very well-prepared websites available on the world-wide web, but they will find time to read printed newsletters like the Sexual Health Exchange. While electronic means of information exchange and communication are clearly having a tremendous positive effect on the availability and accessibility of information in general, they will never be able to completely replace more traditional ways of disseminating information. Advantages of an electronic version of the newsletter Despite the aforementioned disadvantages, it must be recognized that an electronic version of the newsletter has one clear advantage—lower cost—which can help guarantee its continuation if donor funding is withdrawn. Last year, a start was made with making back issues of the newsletter available as full text on the Internet (www.kit.nl/ibd/html/exchange.htm), including illustrations. This allows people to download back issues from the time before they subscribed, to copy and forward them to others (for example by e-mail), or to use the text in training courses or for other purposes. At the moment, only the 1995–98 issues are available, but the 1999 issues and those prior to 1995 will soon follow. In 1997–98, some issues of the Exchange were made available through a list-serve


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called SEA-AIDS (a discussion forum primarily serving those working on HIV/AIDS in South-East Asia). Currently, we are exploring the option of disseminating Exchange articles and issues via e-mail by creating our own electronic mailing list. This has certain advantages over a website version. Many people who know and work with e-mail do not have much (if any) experience with the world wide web; others have only access to email (which is also cheaper than full Internet access). Websites have the disadvantage that you do not actually disseminate information, but only make it available. For it to actually reach people, they must decide to actively start looking for information, browse the web and download text. Many people do not have the time to do this or simply don’t feel like doing it. Electronic mailing lists, on the other hand, deliver information automatically while also creating possibilities for a more direct two-way communication between editors, readers and authors. While the ‘good old’ printed version of the Sexual Health Exchange has proved to be millennium proof and will certainly be continued, we will therefore seek new ways of disseminating the newsletter. It is our hope that this will increase input from readers and contribute to the overall objective of facilitating learning across regions to deal with sexual and reproductive health problems and HIV/AIDS in an effective way.

INTERNATIONAL AIDS CONFERENCES: EXTENDING INFORMATION EXCHANGE BEYOND THE SESSION HALLS Manju Chatani and Tim France Health & Development Networks In 1990, Tim France switched from laboratory-based research on the molecular causes of prostate and breast cancer, to promoting the public understanding of science and health. The transition was helped by studying journalism and working for five years as the Scientific Editor of two popular scientific journals the British Journal of Haematology and the European Journal of Cancer. Since then, Dr. France has worked throughout the developing world with the WHO Global Programme on AIDS, UNAIDS, and various non-government organizations, preparing HIV/AIDS-related technical guidelines and policy materials, and developing information dissemination strategies. Current interests include the design and implementation of useful dialogue and information exchange using email and internet technology. In March 1998 he cofounded Health & Development Networks, a non-profit organization supporting the use of electronic communications in public health. Health & Development Networks, Website: http://www.hdnet.org Tel.: +353–868– 192324, Fax: +353–869–192324. Email: [email protected] Manju Chatani has worked in the HIV/AIDS field for the last seven years in a variety of capacities and levels in the US, Ghana and at the international level. With a background in public health and population research, she has worked in the AIDS field on the front-line as a casemanager, counsellor, journalist and support group facilitator. At the community and academic levels, as a consultant on HIV/AIDS and gender, she has conducted research and provided technical assistance to various non-governmental organizations, national and international bodies. Since last year, she has focussed on efforts towards the mobilization of the international AIDS community. Ms. Chatani has helped develop mechanisms for enhancing networking and information sharing processes using internet and e-mail technology. She has facilitated electronic discussions that expand South-South and North-South research, activism and cooperation activities. Currently, she resides in Ghana and is part of Health & Development networks, which supports the use of electronic communications in public health. Both authors can be contacted at the following address: P.O. Box 3131, Accra, Ghana.

International AIDS conferences

23

Email: [email protected]

I left Geneva with an overall sense of disappointment. There seemed to be a malaise amongst the AIDS community—scientists, physicians, and activists alike. For a meeting dedicated to ‘bridging the gap’, why was it that every day last week, whenever a speaker from a developing world country rose to talk about an issue central to this challenge, seats emptied and the hall began to bleed delegates through the aisles and out into the corridors of the conference centre. I watched this happen at least six times to speakers from Africa, India, and Thailand. It was shameful. 1 ‘This [Geneva] conference isn’t about bridging the gap’, fumed one African doctor, ‘They are here to show us how wide the gap is’. 2 ‘In the name of people living with HIV, I demand that nations demonstrate a strong and clear desire to enact change and that they become involved This conference should be the occasion to coordinate political and financial efforts, not the enactment of a fictitious solidarity’. 3

The purpose and scope of International AIDS Conferences International conferences on various topics are considered to be a good means of sharing information and allowing delegates to exchange experiences. For this reason, global (international) and regional conferences on HIV/AIDS have been organized since early on in the epidemic. Initially, the conferences were held annually; later, they became biennial, with the regional conferences being held one year (e.g., 1999) and the global conference in the next (2000). Nevertheless, ever since the first International AIDS Conference was held in 1985 in Atlanta (Georgia, USA), the rationale and value of large AIDS conferences have been the subject of sharp debate. This year the questions are all the more pertinent because the event will be held for the first time in a developing country, and in a province with one of the highest rates of HIV prevalence in the world today—Durban, South Africa. This will be only the second time such an international conference has been held outside the USA or Europe, the only other occasion being in 1994 when it took place in Yokohama, Japan. The initial purpose of the international conferences was to share research and medical findings about what was a relatively new disease. Hence the early emphasis was on clinical and biomedical aspects in association with largely medical bodies such as the World Health Organization and the International AIDS Society. More recently, however, as our understanding of the basic science and natural history of HIV infection has increased, attention has shifted increasingly towards using such conferences as opportunities for sharing our understanding in more social and community-related areas, as well as experiences with local and national responses to the


24

epidemic. This shift is evident from even a cursory examination of the 1999 announcement for the Durban Conference which describes the thematic ‘tracks’ in which sessions are organized. The Durban Conference is not only focusing on: basic science; clinical science; epidemiology, prevention & public health; and social science, but also includes a new track dealing with rights, politics, commitment and action. The shift is also affirmed in the conference theme ‘Breaking the Silence’, which refers to the need to overcome the many obstacles facing global efforts against the epidemic, such as complacency, ignorance and denial, inequities in access to care, and the slow development of HIV vaccines. Abstract submission options also now encourage the presentation of experimental information about studies and observation using ‘alternative research methods and styles’ A strange choice of words, which apparently refers to community-based activities, work in the areas of HIV prevention, care and social services, human rights programmes and policy development. Another enduring purpose of international AIDS Conferences is to bring international HIV experts together in one arena; however, in practice the gathered expertise may not reflect as wide a spectrum as hoped. For example, of the 12,000 or so participants in the World AIDS Conference held in Geneva in 1998, only 23% were from developing countries though efforts were made to actively increase the proportion of accepted oral and poster presentations from developing countries to 41% 4 . An indication of how potential participants see the purpose of the conference also comes from the range of abstracts submitted to the various tracks. The submission distribution of abstracts for the Durban conference was skewed towards the more social science and rights-based aspects. The scant survey data that are available regarding the various categories of participants indicate that the vast majority are still drawn from the clinical and biomedical research fields. Along with the other major category, social and behavioural researchers, these groups are dominated by the academic and public sectors in all countries. This is largely still guesswork though because not one of the 12 international AIDS conferences to date has been formally evaluated in any way. Since the first world conference in 1985, there has been a widespread recognition that HIV/AIDS is far more than a health issue and that it requires a so-called multi-sectoral approach. Nevertheless, the overriding purpose of international AIDS conferences—an opportunity for the exchange of mainly clinical and scientific information—has persisted. Despite the recent shifts that we are seeing in Durban, debates still persist as to why the International AIDS Conference could not be made more pertinent to the global HIV/AIDS response, by holding it more frequently in countries affected by the epidemic or by increasing further the non-biomedical content, for example. The apparent inertia regarding further alteration to the purpose of the global conference means there is still no comprehensive platform available for the kind of interdisciplinary exchange that a multi-sectoral response to HIV/AIDS requires. So, when it comes to facilitating the kind of information sharing that directly informs national responses in developing countries, greater emphasis has been placed on regional AIDS conferences. The official ‘convenors’ of the International AIDS Conference, the International AIDS Society, have indicated their own resistance to further change by describing the regional events as ‘more easy to accommodate and intended to be more relevant to Third World countries’. 5 This is a view that many, including the organizers of recent regional


25

conferences, regard as ironic at best and disdainful at worst—given the difficulties in seeing an International AIDS Conference as somehow less relevant to the developing world, when this is where 90% of HIV transmission to date has taken place. The Chairman of the Durban Conference recently added his clear view to this debate in the International AIDS Society’s own newsletter: ‘It was as obvious as it was inevitable by 1996 that the International AIDS Conference should be held in a developing country…. For reasons which are self evident, this premier event in the world calendar of scientific meetings had to go where the problems were the most severe. And as Africa has the highest concentration of HIV-infected persons it was fitting for the conferences be in an African country in the Year 2000’. 6 Given that after Durban the two forthcoming International AIDS Conferences in 2002 and 2004 are to be held in Barcelona, Spain, and Toronto, Canada, respectively, it remains to be seen if the future organizers intend to open the scope of the programme to meet some of these broader themes and needs. One thing is certain already the selfevident logic that took the conference to South Africa shall not influence proceedings again until at least 2006.

Broader partnership and exchange opportunities Despite the ambiguity about the main purpose of international conferences, they are arguably the most visible arena in which international discourses around HIV/AIDS are established and legitimized. 7 But in relation to dissemination of knowledge and the creation of dominant ideas and language around the epidemic, they have at least three major drawbacks: First, the high travel, accommodation and registration costs mean that they are exclusive events. Anyone who has been to more than one of these meetings knows that the ‘conference circuit’ resembles a closed elite in which contacts are made and where, what Altman 8 calls ‘a new class of international experts,’ exchange information and reinforce one another’s importance. It follows that attempts to use the conferences to reach new audiences, for purposes of advocacy or AIDS sensitization, for example, are largely pointless. In some instances this can make presenters and organizers feel like they are ‘preaching to the choir’ rather than continually reaching out to bring new groups and constituencies into the HIV/AIDS debate. Second, the focus of the conference programmes, for the most part, promotes adherence to the superiority of knowledge derived through Western-based models of scientific method, especially towards biomedical and drug-based solutions. This will no doubt be helped by the inclusion of abstracts that need not be based on a ‘methods, results, conclusions’ format, but many important areas such as social theory, traditional care approaches and spiritual responses to HIV/AIDS, still receive relatively scant attention. Third, we have placed little importance on ‘capturing’ the information and knowledge


26

shared during international conferences, particularly in ways that provide meaningful experience and understanding that can be applied in other settings. Much of the actual learning, discussion and debate from the conference sessions remain etched in participant’s notebooks or minds, never becoming part of a larger synthesis. Other than producing CDs of conference abstracts, we have been even less effective at sharing meaningful information content with those unable to personally attend. In this regard, the limitations of AIDS-related information per se must also be fully acknowledged. As Kunda Dixit stressed in echoing the currently popular chant that distinguishes information from knowledge: ‘Only when information helps people communicate, participate and allows them and their rulers to make informed choices does that information become knowledge’. 9 Conference abstracts alone do not achieve this, and despite extensive international efforts to provide globally adaptable blueprints for AIDS programmes, organizations in developing countries overwhelmingly seek the direct and ongoing benefit of experience of counterparts in other countries or provinces. Of course the conference sessions themselves support this kind of exchange to some extent, but only among the participants who are able to pay the travel and registration fees. But the vast majority of people and programmes who would benefit from this kind of exchange are unable to attend such events in person. It is arguably these thousands of people who should be the priority beneficiaries of conferences; not as an afterthought. 10

Moving information and experience beyond conference participants—the Lusaka and Kuala Lumpur Regional Conferences Building practical knowledge about HIV/AIDS, and even challenging the prevailing discourses at a national or community level, have two distinct prerequisites: raw information itself; and the related practical experience of others in comparable settings. Meeting these needs requires complementary approaches—the first using established print and electronic information channels, the second requiring effective means to support direct communication, primarily in a South-South manner. Conventional HIV/AIDS information intermediaries, typically large international organisations and networks, are now seeing their exclusive capacity to juxtapose situations—to identify, collate, compare and summarise HIV-related information (i.e., to compile ‘best practices’) slipping away. Electronic communications and networking are rapidly placing these abilities in the hands of the affected countries and communities. During the 1998 International AIDS Conference in Geneva, a set of electronic discussion fora was established two months prior to start of the conference. Discussions were intended to feed directly into the various community symposia that were planned as part of the conference programme. Although the Community Liaison Network-electronic (CLN-e) attracted several hundred participants, the anticipated active participation of the networks responsible for organising individual symposia was disappointing. The conclusion was that, while valued, the CLN-e had simply started too late in the


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conference process to attract meaningful attention. At the beginning of 1999, two regional conferences on HIV/AIDS were on the horizon some nine months later the XIth International Conference on AIDS and STDs in Africa (XI-ICASA) held in Lusaka, Zambia, from 12–16 September 1999 and the Fifth International Congress on AIDS in Asia and the Pacific (5th ICAAP), held in Kuala Lumpur, Malaysia, from 23–27 October 1999. Rather than establishing a completely new set of discussion fora to support these conferences, existing electronic fora were used in the hope of establishing a novel approach to facilitating open discussions leading into the conferences, involving people who could not attend in person (as well as those who could), and a means for capturing of the proceedings of the events themselves. The aims of using electronic networking around these conferences were to: • increase awareness about the conferences • promote wider participation by regional and national networks, government, nongovernmental organizations (NGOs) and individuals • support the involvement of people who could not attend the conferences in person • help identify potential speakers and facilitators • support a conference outreach and information dissemination and communication strategy • strengthen existing HIV/AIDS networking and build a role for international conferences. Indications that these were achievable aims had come from similar but limited coverage of the Society for Women and AIDS in Africa (SWAA) Eighth Annual Conference, held in Dakar, Senegal, in December 1998. 11 Feedback received from the SWAA conference organizers, co-sponsors and readers of the coverage provided by electronica fora clearly showed that this type of conference reporting was widely appreciated.

Pre-conference discussions and the role of key correspondents In close collaboration with the Lusaka and Kuala Lumpur conference organizers, a schedule of pre-conference discussion themes was prepared. This was done by requesting themes to be nominated by members of existing regional electronic discussion fora (AFAIDS & SEA-AIDS respectively). 12 In the case of the Kuala Lumpur conference, initial selection of discussion themes was also based on the conclusions of a Community Forum held during the previous ICAAP conference, in Manila in 1997. For the Lusaka event, there was actual voting on-line to create the schedule of discussion. The finalized lists of selected discussion themes, the dates they were to be discussed and on which discussion fora they would be hosted, were widely circulated over six months before each conference was due to begin (Table 1). A second element of these pre-conference discussions was the identification and recruitment of a small team of country-based writers, whose contributions to the discussions were intended to stimulate submission of comment and views from other discussion forum members. The two teams of so-called ‘key correspondents’ were selected from diverse countries and communities, as well as varied technical backgrounds


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and previous exposure to the conference environment (Table 2). Each discussion theme generally lasted about two to three weeks. As each discussion period began, the key correspondents (KC) contributed summarized perspectives from their own countries and areas of work, based on their own specialized knowledge and experience. KC contributions ranged from subjective views, summaries of strategies and policies, to interviews and site visits with leading local and national people or projects. This helped to encourage other forum members to contribute their own views. As a result, many developing country-based perspectives were included in the discussions, helping to raise national priority issues in a bottom-up manner during the lead-up to the two conferences. For the Lusaka conference, there was pre-conference solicitation of expectations of the conference (from those hoping to attend and from those who could not) and for lists of national delegations so as to facilitate on-site networking.

Table 1 : Pre- and postconference discussion themes selected by e-mail forum members (figures in brackets are numbers of postings received in each category prior to the regional AIDS conferences in 1999)

Lusaka

Kuala Lumpur

What governments do and say: political commitment and HIV/AIDS in Africa (15)

Translating national policies and strategies into action, including effective government/NGQ collaboration (19)

Ignorance, denial, fear and violence: Social discrimination, stigmatization and human stigmatization and discrimination in African rights (35) communities (17)# Traditional approaches to AIDS care in Africa: Living with HIV, Without antiretroviral drugs (22)

Poverty, marginalization on HIV & AIDS in Asia and the Pacific (*)

Services under strain: the burden of HIV/AIDS on national health systems in Africa (6)

Regional, national and community participation in HIV vaccine trials (*)

HIV counselling: the African context (16)

Complementary and alternative HIV/AIDS treatments in Asia (23)

Youth and HIV/AIDS (12)#

The current economic crisis in Asia and its impact on the epidemic (27)

The future for AIDS orphans in Africa (21)# HIV in prisons (16) Dual epidemics TB/HIV & STDs/HIV (6)

Preventing mother-to-child transmission in Asia and the Pacific (27)

*Ultimately not discussed because of time constraints # Post- conference theme from XI-ICASA (Lusaka)


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Table 2 : Key correspondent location and professional expertise

Code #

Country

Professional expertise

1

Zambia

Journalist (news)

2

Burkina Faso

Tuberculosis programme manager/clinician

3

Nigeria

Journalist (features)

4

Kenya

Counsellor/trainer

5

Thailand

Resource centre manager

6

Taiwan

People Living with HIV/AIDS Group Co-ordinator

7

Malaysia

Journalist (features)

8

Cambodia/India

Policy/strategic planning

9

India

Human rights lawyer

10

China

Epidemiologist

The total numbers of contributions to the pre-Lusaka and pre-Kuala Lumpur discussions by forum members were 115 and 147, respectively. Taking into account the average number of forum members receiving postings during this time, this translates into over 350,000 pre-conference postings received by forum members.

Coverage of conference sessions During the conferences, an editorial team comprising two editorial co-ordinators/forum moderators and key correspondents—four in Lusaka and six in Kuala Lumpur—was brought together on-site. This was the first time the correspondents and editors/moderators had met, despite working together closely over the previous six to eight months through e-mail. Before each conference began, the editorial team met to discuss the organization of the conference programme, likely highlights and responsibilities for covering individual themes and sessions. Each day team members attended assigned conference sessions, cultural events, displays and satellite meetings, taking their own notes, collecting presentation notes from speakers, interviewing people who had listened to presentations, and sometimes recording entire key presentations. At the end of each conference day, the team convened again in the conference media centers to prepare written reports of individual sessions. These were session reports that described the day’s content through the subjective experiential ‘filtres’ of respective team members, with comments from members of the audience adding another perspective. Where possible, the background and interests of the team members were matched to the session content so their experience could be maximized in relation to interpretation and understanding of individual sessions.


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Session reports and, in some cases, transcripts of certain presentations, were disseminated through the e-mail discussion fora. They were classified according to conference track, plenary sessions, and on-site daily news coverage. ‘Lusaka for me was a challenge: The Physician that I am was no more treating patients but information. I found myself learning by doing a new job: journalism! When sometimes I thought about the list members of the forum and especially those who were not in Lusaka and who had to rely on the notes we were taking, I was a bit afraid of not being able to perform well. Once back home I measured the hard job to compile all the notes and give them a meaningful content. 13 On average, around half of the session reports produced during the conferences were dispatched the same day that the presentations took place, or the following morning. Other session reports were dispatched in the days and weeks that followed. Extracts of session reports were also used as articles for inclusion in the on-site daily newspapers of both conferences. The Lusaka and Kuala Lumpur editorial teams produced 65 and 73 session reports, respectively. This represents the most comprehensive reporting of any regional conferences to date. It also served to stimulate further discussion among forum members, both during and after the conferences helping to maintain the debate and dialogue that had begun in conference sessions and corridors. Each of the respective conference weeks was an intense period of incoming postings for forum members, particularly for those who were not at the conferences in person, who were able to watch the postings arrive in their inbox each day. For example in the month of October 1999, the average number of postings to the SEA-AIDS forum increased from its normal level of around 45 per month to 115 many of which were dispatched during the week of the ICAAP conference. This enabled people in remote locations to take something from the ‘conference experience’, without leaving their home, office or internet café. The reporting also allowed those who did attend to learn what happened in the other 50 or so simultaneous sessions they were unable to attend. Conference presenters also had the opportunity to receive direct feedback from the forum reports and to further explain, clarify or discuss the issues raised. This then permitted the question-answer period that usually occurs at the end of sessions to go beyond the ‘15-minute’ time slot allotted. The Chairperson of the Kuala Lumpur conference, Datin Paduka Marina Mahatir, summarized what this meant to the organizers of such an event: ‘I would like to also mention here, the role that has been filled by the electronic media with regards to the 5th ICAAP. There were certainly more than 3000 here at the ICAAP. There were also about 2000 people following the conference on the SEA-AIDS network, and I am pleased to report that during the ICAAP week, there was an analysis of 35 sessions that went out to these 2000 other colleagues of ours, and there are around another 30 to go I urge everyone to join—I know that sounds a bit like an ad, but I do believe that the 5th ICAAP, and the issues that were on the programme really came from what we learned


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on the SEA-AIDS network and so if we want to have input into any other conference, we believe that we should be participating fully in that network’. 14 Impressions collected on the Lusaka Conference from forum members included these notes from people who had not attended the conference: I wish to thank AF-AIDS for keeping us posted and updated on the Conference Even if I was not there this already makes me part of the proceedings. 15 Although, I had wished to be present, the innovation of sending updates via email has depicted how advantageous globalization is. 16 For many of us sitting here in our comfortable homes and thanks to the world of the internet and the wonderful reporting, we have been able to follow the proceedings of the conference in Lusaka. They have shown us through the sessions just exactly what this disease has and is doing to this continent. 17 I would just like to say that the postings coming out from the conference are a daily inspiration to us here where we operate a theatre group and a youth clinic [Vanuatu]…. The conference is resonating across the world and as one delegate put it, it is often the discussions about what worked in one community and what didn’t that are so vital; I felt that also at the Pacific’s first regional STD/HIV/AIDS conference earlier this year, so please keep those details coming too on the AF AIDS network, they reach further than you might think. 18

Post-conference discussions and links with subsequent events For a few weeks following the conferences, the key correspondent teams continued to post reports, transcripts and a series of reports synthesizing the information gathered from the sessions. Important resolutions and declarations were shared with the fora, with an invitation to members to comment on them and to act as watchdogs for their fulfilment. For the Lusaka conference as well, forum members submitted their impressions and the emerging themes that were priorities in their countries. These were used to guide the postconference discussion theme topics (included in Table 1). In the absence of any formal evaluation of the conference, this informal mechanism served as the only survey of the event. The on-going dialogue and debate that ensued from the conferences developed further some of the issues highlighted there. There were many suggestions that the content of these discussions should be used as direct input into subsequent international and regional Conference planning. The 6th ICAAP (2001, Melbourne, Australia) organizing committee appears to have taken up the challenge of incorporating such discussion into developing the next conference by incorporating electronic discussion fora as key elements of its communications strategy. The forum conference reporting also inspired the 4th Home and Community Care Conference (Paris, France, December 1999) to follow this model with a three-member key-correspondent team established to follow similar scripts to the two previous regional


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conferences. The conference reports are all archived on the worldwide web, making them easily accessible public information. The content and collective experiences of these conferences have now become part of the collective memory of all the forum members which can now be linked easily to subsequent meetings. For the first time, what people ‘said’ and not just what they wrote, submitted or released in press clippings has been recorded and stored. Specific concerns and debates that emerged are documented as well. This content can easily be fed into national fora or other similar country-level events. The full potential of these experiences is yet to be fully realised.

Table 3 : Summarized benefits of pre- conference discussions, session coverage and follow-up

Project phase

Potential benefits

Pre- conference:

Increase awareness of conference Integrate conclusions from other regional events Pre-conference discussions Consensus-building, for example regarding the programme Introduce participants to one another Assists conference & programme planning

During conference:

Conference and specific session coverage Capture conference content Abstract and information dissemination (including resolutions & declarations) Complements media information service

Post-conference:

Follow-up on stated resolutions & declarations Evaluation/survey to assess participant perceptions

Permanent links:

On-going dialogue among conference participants Content and membership links to subsequent conferences Feeds into national fora or similar events at the country level

Conclusions and suggestions for coverage of future conferences There has been no formal evaluation of the impact of the work described in this paper. However, the overall conclusion based on anecdotal feedback is that this kind of conference preparatory discussion and session coverage adds value to face-to-face meetings by making them accessible to people unable to attend in person, and by generating a collective memory of discussions, declarations and conclusions. The broad potential benefits are listed in Table 3. These need to be formally evaluated so that the format can be developed further and specifically customized to serve as models for future conferences. There are several general lessons that can be drawn from the experience of working


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with these two conferences. Though some may appear to be common sense, they may be overlooked. This list should be seen as recommendations to future conferences considering organizing similar support facilities: • Preparations for and implementing this type of activity requires very close coordination with the conference local organizing committee, as well as timely provision of information about the emerging conference programme, for example. Organizing and co-ordinating this type of activity would benefit enormously from integration into the conference and secretariat structure. • Plans for information and e-mail discussion forum support to events such as conferences should be prepared and agreed as early as possible in the conference planning process. • Bringing together much larger key correspondents teams during specific events would be feasible and beneficial; mechanisms to establish permanent voluntary teams should be explored. (The amount of work for the KCs and other team members in these ‘demonstration’ activities was enormous and ideally needs larger teams). • It would be advantageous to include members on the team who have served as key correspondents for previous events. However, diversity in the team with regard to expertise, nationality and experience is paramount to the team selection. • Pre-conference discussions and conferences themselves would be enhanced if more information about the programme were made available before the conference. An email survey after the Geneva conference indicated that over 85% of participants would find this useful, with over 25% stating it would increase their likelihood of attending in person. 19 • Information about conference participants should also be made available (on a consensual basis) before the conference this can be done through e-mail discussion fora and would have a significant impact on the amount of networking that individual conference participants can achieve during this type of event. • Background documents and other materials that would strengthen pre-conference discussions and session coverage should be identified, collated, made available and/or disseminated prior to discussions once the discussions are underway there is no time to do this. • Visible links should be established with other regional events, such as thematic meetings, symposia or workshops, in the lead-up to conferences. These links should include the transfer of content such as session reports, as well as organizational links. • Discussion benefits greatly from visible high-level support and use of fora, by conference chairs for example. • Viable complementary technologies can be used to enhance the discussions for example, live audio and video broadcasting, slides and audio synchronism, recordings that can be downloaded and video-conferencing. • To achieve a concurrent ‘virtual’ conference, many specific issues should be explored, for example: protocol for allowing questions from virtual participants; mechanisms to allow affiliated events such as cultural displays and workshops to be shared, as well as abstract-driven sessions; effective ways to deal with language barriers; possibility of non-attending or virtual presenters/presentations; and considering scholarships for


34

non-attenders to pay for Internet access. • Overall evaluation of conferences, including the benefits of e-mail discussions, should be planned and implemented well ahead of the conference itself. When considering International AIDS Conferences specifically, co-ordinating concurrent virtual conferences is not only important but necessary to creating truly global discussions. The purpose is to extend the dialogue, make an impact on national agendas and ensure that week-long meetings develop into more than telephone directory-like abstract collections. Many people working in the field of HIV/AIDS (especially in the South) must be proactively included. Large, international, diverse and well-trained key correspondent teams should be selected well in advance. They should participate in pre-conference discussions and in synthesizing content from past conferences into the programme. There is a dual benefit of anticipating more balanced coverage and in building the capacity of the team members. The Durban 2000 Committee, to some extent, has used existing fora to disseminate information, gauge concerns and address emerging issues. Specific members of the team have been actively engaged in discussions and debates that have developed around the conference. The Conference chair has responded to sensitive issues. However, it is obvious that more specific mechanisms must be developed to ensure that content from the regional conferences are fed into the International Conference agenda and vice versa. As more is understood about the epidemic and the patterns of behaviour and social interactions that underlie the spread of HIV and the possible responses to it, greater emphasis is being placed on the value of national/local level experience and expertise. The greatest source of knowledge about how best to respond to HIV, the so-called lessons learned, is increasingly recognised as residing not at the level of international discourses, but at the level of the community and individual experience. The current proclivity towards documenting good practices at the local level is once again focusing attention on the interface between international discourses and community-based initiatives. This process can be enhanced if electronic discussions, including those around conferences or other similar events, are used to increase the extent and depth of this exchange. Awareness of the importance of local experience, and growing scepticism about the relevance of current international discourses, are both greater than ever. The question is how, not whether, the multifarious community voices will be progressively channelled into new patterns of higher political meaning and impact at the national, regional and international levels. This includes a role in determining the focus and content of the major opportunities for exchange of experience namely conferences. But there are also serious inequities to be overcome in access to electronic communications between the developed and developing worlds: ‘If the world is changing quickly and unexpectedly, it’s also changing unevenly. Virtually any set of statistics shows that information technology is inequitably distributed and used. The US has 600 telephone lines for every 1,000 people. Bangladesh has two per 1,000…the lack of infrastructure in poorer countries can become an even larger handicap than before. There are those who vehemently disagree. Among them are development


35

experts who see information and communications technology (ICT) as a tool that could ‘leapfrog’ underdeveloped countries to new heights. Whatever the pitfalls, there really isn’t a choice. It is inevitable that development in the poorer regions of the world will proceed within the context of a global information society’. 20 It is arguable that the inequities in access to electronic communications, between say a local NGO in KwaZulu Natal, South Africa, and an international group based in Washington DC, USA, are among the most pressing reasons for acting immediately to develop electronic communication systems, aimed specifically at strengthening links between large international events and the HIV/AIDS community. Unless affirmative steps are taken to transfer and strengthen the capacities of community-based organizations to use and benefit from this type of electronic networking system regardless of the real inequities in access the mainly Northern-based international HIV/AIDS discourses will rapidly fill the virtual space currently available. Organizations based in developing regions of the world will soon find themselves slipping further behind and the opportunity for increasing communities’ power to partly determine any agenda, including those of international conferences, will have been lost. International conferences on HIV/AIDS are framed to some extent on the exchange of commitments conference resolutions and rhetorical statements by national or organizational leaders. Accurate and personal accounts of conference sessions by correspondents from developing countries will help us to determine—when all the fuss of the conference itself dies down—whether those commitments and resolutions are being honoured. There are already more people taking part in e-mail discussion fora on HIV/AIDS every day of the year, than the number of participants in any of the biennial international conferences. ‘One statistic from the Fifth ICAAP was instructive: more than 2000 ‘virtual’ participants joined 3000 ‘real’ ones, courtesy of SEA-AIDS. Clearly in two year’s time, the ratio will at least be reversed, since fewer Asians will be able to afford the cost of a trip to Melbourne, while the numbers of people with E-mail access around the region will have exploded. Thus it seems to me to go without saying that the Sixth ICAAP should place at least as much emphasis on virtual participants as on real ones…. And handled right, this should also enhance, not impair, the benefits of real attendance’. 21 We have come a long way since Atlanta in 1985, where only three Africans attended the first International Conference on AIDS. 22 By the time we come to re-write this type of review before the International AIDS Conference in Toronto in 2004, we may well be asking ourselves how we can integrate the physical biennial conferences into the daily virtual one in any meaningful and relevant way not the other way around. And there might simply not be a way. ‘With a minimum amount of organization and funding, an actual international conference could be taking place daily that would supplement the international


36

AIDS conferences held every two years’. 23

Acknowledgements The authors are grateful to the Fondation du Present for their technical and financial support during this project. Thanks also go to the United Nations Development Project for the grant that made the Lusaka Conference project possible, and to the Kuala Lumpur Conference Local Organizing Committee for their commitment and support to what seemed a radical idea at the time. A special mention to Ploypailin Kongklai for keeping us all on track and organized. Thanks also to the Australian Federation of AIDS Organisations for the additional coverage you provided in Kuala Lumpur. The last word goes to the key correspondents themselves, whose energy and experience made the project the success that it was.

References and notes 1. Richard Horton (1998); The Lancet : 352 :122. 2. Mark Schoofs (1998)—It was a mad mad mad mad World AIDS Conference; POZ magazine (October 1998) 3. President of Club des Amis (1998), an association of people with HIV in Côte d’Ivoire. Transcript of opening speeches at the XII World AIDS Conference, Geneva, 1998. 4. Bernard Hirschel, Geneva Conference Chairperson, Press Conference, (1998). 5. Toronto for XVth World AIDS Conference Intaids discussion: http://www.hivnet.ch:8000/intaids/thread?194:0 6. Hoosen, Coovadia, IAS newsletter: AIDS Bulletin ; Sept ’98 7. Altman, D. (1998) Globalization and the ‘AIDS Industry’ Contemporary Politics; 4(3): 233–245. 8. Altman, D. (1994). In: Power and Community Organisational and Cultural Responses to AIDS . Taylor & Francis, London, United Kingdom. 9. Dixit, K. (1998) Knowledge is a Double-edged Sword. PANOS News and Features 10. Chris Green (1999)—personal communication 11. Gender-aids coverage of SWAA conference (November 1998): http://www.hivnet.ch:8000/gender-aids/thread?216:0 12. AF-AIDS: http://www.hivnet.ch:8000/af-aids/ SEA-AIDS: http://www.hivnet.ch:8000/sea-aids/ 13. Datin Paduka Marina Mahatir, Chair 5th ICAAP; Closing Ceremony Speech: 27 October 1999 (SEA-AIDS posting 2324): http://www.hivnet.ch:8000/sea-aids/viewR? 2324 14. Fondation du Présent, September 1998 Personal Communication. 15. Truett Anderson,W. (1997)—Cyber-realities of the Information Age—The Human Development Magazine (UNDP)—July 1997 Issue. 16. Anil Kumar Soni (1998). In: From GPA to UNAIDS: Examining the Evolution of the UN Response to AIDS; BA Thesis: Harvard College, USA. 17. Marlink, R. (1998). Journal of the American Medical Association , 28:1295–1296. 18. Dr. Koudaogo Ouedraogo et al (1999); (AF-AIDS posting 486): http://www.hivnet.ch:8000/af-aids/viewR?486


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19. Various authors, Impressions of Lusaka (1), Oct 99 (AF-AIDS posting 487): http://www.hivnet.ch:8000/af-aids/viewR?487 20. Various authors, Impressions of Lusaka (2), Nov 99 (AF-AIDS posting 496): http://www.hivnet.ch:8000/af-aids/viewR?496 21. Various authors, Impressions of Lusaka (3), Nov 99 (AF-AIDS posting 500): http://www.hivnet.ch:8000/af-aids/viewR?500 22. Chris Green, moderator of HIV-IDU, Jan 2000 (SEA-AIDS posting 2359): http://www.hivnet.ch:8000/af-aids/viewR?2539 23. Taken from AIDS2000 Conference Update (newsletter; March 2000 edition)

THE EXTRAMED BIOMEDICAL PERIODICALS LIBRARY AND HIV/AIDS Chris Zielinski Director, Health Information for Development project CEO, Informania Ltd/ExtraMED, United Kingdom Chair, FID Special Interest Group on Information Ethics

You may contact the author at the following address: Informania Ltd., 18 Monks Orchard, Petersfield, Hants. GU32 2JD, United Kingdom. Email: [email protected] Tel. +44–1730–301297 Fax: +44–1730–265398.

Introduction It was December 1993. I was strolling around the London Online Meeting and Exhibition without a care in the world, until I came to the ADONIS stall. ADONIS was (and still is) producing periodic CD-ROMs containing the full text, as page images, of (at that time) about 300 of the leading biomedical journals published in industrialized countries. As Director of Health and Biomedical Information at the World Health Organization’s Regional Office in Alexandria, Egypt, I was an early subscriber to ADONIS. Casting around in my mind for something to say to Paul Harman, who was manning the stall, I said/You know, Paul, you should do a version of ADONIS with local journals in it, journals from developing countries’ ‘Why don’t you?’ he replied. ‘Why don’t I, indeed,’ I thought, little realising what an enormous mountain of effort lay ahead. Going back to Egypt, I resolved to put a project together and when I left WHO in 1996, I decided to ‘put my money where my mouth was’ and invest in the project, which I called ExtraMED. I continued the project within a family company, Informania Ltd, under the terms of an agreement with WHO. It has always been, and continues to be, a labour of love, carried out on evenings, weekends and holidays.

The ExtraMED Project ExtraMED is designed to promote dissemination of literature from developing countries, while subsidising its production and development through subscription revenues.The project helps local biomedical journals:

The extramed biomedical periodicals library and HIV/AIDS

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• achieve visibility among the international biomedical literature since they are almost entirely excluded from the major indexes—only some 3% of the journals in MEDLINE are from the developing countries; and, • earn some income—the journals do not pay anything to be included in ExtraMED yet they share the revenues. Taking its name from the fact that it comprises publications that are ‘extra’ to MEDLINE, ExtraMED focuses on journals that are largely excluded from the international indexes. It includes the best biomedical journals published throughout the developing world from WHO’s Index Medicus projects in Africa (African Index Medicus), the Americas (BIREME/LILACS), North Africa and the Middle East (IMEMR) and South East Asia (IMSEAR). Other Asian journals have come from advice received through WHO’s Western Pacific Regional Office. Journals from other regions have been recommended from time to time and are reviewed scrupulously for inclusion in ExtraMED. The ExtraMED database today contains the full text, as page images, of 308 local biomedical journals from 59 countries. Ten CD-ROM disks are issued each production year, and indexes cumulate. Over 20,000 articles had been included in ExtraMED by January 2000. It is thus by far the largest source of full-text biomedical literature from developing countries. ExtraMED is included in Dialog (http://library.dialog.com) as database number 467 and participates in OCLC (http://www.oclc.org/oclc/menu/homel.htm). The saga of developing our own website has been ongoing since we first registered http://extramed.com in 1995. A small prototype site is scheduled to open in July 2000. The site, to be used primarily for document delivery, aims to be the principal site for information about Third World biomedical journals.

Production All the articles from every journal included are scanned and stored as page images (including all the photographs, diagrams, etc.). All of the titles, bibliographic data, keywords and abstracts are rekeyed to allow for full-text searching of these elements, making use of state-of-the-art database software. This is necessary, since ExtraMED mainly carries journals that are not indexed anywhere else: the only way users can discover what has been published is by searching the disk. We need to rekey this information as the print quality and print characteristics of some of the journals are such that they cannot be readily scanned and subjected to optical character recognition. All production work is done under contract by the Crossaig company in Scotland (which is owned by ISI Philadelphia). Disc pressing was being done at the largest and most modern facility in the world—the Nimbus plant in Wales—until recently, when the quality and cost factors enabled us to switch to CDR. ExtraMED is distributed by Informania Ltd, with disks going out on roughly a monthly basis. Annual subscriptions (10 disks) are US dollars 1,800, while backfiles covering two years (20 disks) are available at US dollars 900. A 50% discount is granted to subscribers in developing countries. The subscribers have the full text of over 300 journals—US dollars 6/US dollars 3 per journal fully catalogued and searchable by keyword.


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ExtraMED and HIV/AIDS As of April 2000, there were over 500 articles on HIV/AIDS in the ExtraMED database, representing about 3% of the total. Each of these is unique, representing a perspective on the disease that is absent in Western literature. As John S.James wrote in “AIDS and Alternative Medicine: A Journalist’s Perspective” (Remarks to AIDS and Alternative Medicine: Current State of the Science, Bastyr University, Seattle, April 28, 1996), AIDS Treatment News, Issue #249, June 21, 1996 (http://www.thebody.com/atn/249.html): ‘Ultimately, to make knowledge widely transportable and useful, we will need to find credible ways of testing proposed approaches. But these ways need to be developed in collaboration. It will often not work to bring in a preconceived piece of scientific methodology developed in other contexts and for other purposes’. ‘One potential resource for starting this learning process is ExtraMED, a new database created by the World Health Organization, of over 200 medical journals in developing countries. These journals are excluded from Medline, Embase, and other major bibliographic databases, and therefore largely unknown to researchers in the developed world’… The ExtraMED database today…is …by far the largest source of full-text biomedical literature from developing countries.

The contributions of ExtraMED to information dissemination ExtraMED not only provides a powerful research and diagnostic tool but is also helping promote dissemination of developing country publications through other media. When ExtraMED started, the total composition of MEDLINE allowed for only 2% of journals from the developing countries. The figure is now about 3%—still tiny, but 50% higher than before. We have had years of discussions with the US National Library of Medicine about increasing this percentage. Many of the developing country journals added to MEDLINE since we started were in ExtraMED (the number of ExtraMED journals in MEDLINE has risen from about 10 in 1993 to 45 now). We obviously cannot claim to have been the cause of this change, but perhaps we were a factor. At the same time, the Science Citation Index has significantly increased developing country journal participation from its 2% level in 1995 again, we have been campaigning for this for years, with direct contacts to ISI since the beginning. Influential articles mentioning ExtraMED have appeared in Scientific American and the British Medical Journal as well as various leading information science journals—not all complimentary, but all constructively engaged with developing this unique resource. There are over 130 websites making references to ExtraMED. It is having an impact.

The extramed biomedical periodicals library and HIV/AIDS

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ExtraMED is the only large-scale effort to provide electronic versions of biomedical research information from the developing countries. It represents an act of validation, and an assertion of information equity.

HIV/AIDS AND INFORMATION: REGION SPECIFIC INFORMATION FOR JOURNALISTS Aulora Stally Media Manager SAfAIDS, Zimbabwe

Aulora Stally is Media Manager of Southern Africa AIDS Information Dissemination Service (SAfAIDS), a regional NGO based in Harare, Zimbabwe. Aulora, a journalist by profession, manages the Media Programme at SAfAIDS that works closely with regional media professionals to promote a better understanding and improve communication and coverage of HIV/AIDS in the region. Her main activities include: training of journalists, production of media information packs to meet diverse media needs and advisory work on related projects. You can contact Aulora at the following address: Aulora Stally, Media Manager, Southern Africa AIDS Information Dissemination Service, 17 Beveridge Road, P.O. Box A509, Avondale, Harare, Zimbabwe. Tel: +263–4–336193/4; 307898/9, Fax: +263–4–336195. Email: [email protected] Website: http:\\www.safaids.org

AIDS: not just a medical issue AIDS activists in industralized countries have succeeded in raising the profile of the epidemic when it was first recognised, but this has not been so in the developing world where most people with HIV live. It is only now, two decades after the virus first began to spread that the repercussions of AIDS are becoming visible. HIV/AIDS is not just a medical problem. Rather, it should be recognized as a developmental issue because it affects all sectors of society with implications that reach far beyond the health sector into

HIV/AIDS and information: Region specific information for journalists

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the economy, politics, culture, society and religion. In order to accurately cover HIV/AIDS, journalists must adopt a clear understanding of the socio-cultural context of the epidemic and its impact at all levels. This will lead to the establishment of appropriate coping strategies and hopefully result in some behaviour change. Effective communication is essential to promote prevention, build capacity and eliminate stigma surrounding HIV/AIDS

The impact of HIV/AIDS at various levels In southern African countries with mature epidemics, AIDS is leaving highly visible damage in its wake. Here are examples of the impact of HIV/AIDS at different levels: society is struggling to cope with the growing number of orphans, and employees with increasing deaths among employers; doctors report that three-quarters of beds in paediatric wards are occupied by children with HIV; many have left surviving partners who are infected and desperately need care; families struggle to find money to pay for their funerals, and their employers must now train other staff to replace them.

Communicating around HIV/AIDS The media sector has a critical role to play in presenting the facts about the epidemic in an accurate, realistic and non-discriminatory way. They are responsible for creating a communication backdrop for all other prevention and care activities and have the communication tools for dialogue aimed at behaviour change. The mass media are well placed to influence public attitudes at all media levels—print, broadcast, Internet, public relations and advertising. In addition, they can effectively influence policy and social reality. Surveys in many countries in southern Africa reflect a 90% awareness level, but much more is needed to arrest the spread of the virus and provide support for those in need. The public needs to know about levels of HIV infection, how it is transmitted, the risks, and how to avoid contracting HIV Beyond this, they need the motivation and opportunity to change behaviour (through the use of strong role models, such as politicians and musicians) and to develop caring attitudes. In most instances, the impact on behaviour change from communication messages has been minimal. Reasons for this include the fact that messages are too generalised to accommodate a wide target audience, and the originators of these messages tend to sensationalise issues in order to achieve peak returns—either through sales, viewership or listenership. Communication as a stand-alone tool for behaviour change has thus proven to be ineffective. Instead, media communications that tailor messages to the specific needs of individuals and coupled with programming that focuses on the necessary social changes that help reduce HIV transmission will more likely lead to behaviour change. A simple example of this is promoting condoms for young people linked to providing purchase/access points for these products. Therefore, key principles to guide the development of HIV/AIDS media should be:


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• Provision of accurate information on HIV/AIDS • Depicting the human, personalised aspect of HIV/AIDS • Developing strategic approaches for each target group • Publicizing and supporting community interventions • Keeping the issue of HIV/AIDS on the social and political agenda, and • Viewing the epidemic from different angles.

Challenges for media/communication specialists Previous efforts for communication and education on HIV/AIDS have been a mixed bag of instruction, instilling fear, education and statistical overload. When developing HIV/AIDS messages to create impact, accuracy and coherence are important issues to incorporate. In southern Africa, many newspaper readers, television viewers and radio listeners are already infected and need the support of sensitive yet positive reporting. Focussing on issues that bring hope, positive and healthy living as well as successful coping strategies can contribute to a healthy environment for People Living With HIV/AIDS (PWAS) and those who are affected. For the journalist, covering HIV/AIDS should be a challenge and not ‘doom and gloom’ as portrayed by screaming headlines and sensationalism. The HIV/AIDS story has many angles and approaches. The following are some questions that the media may provoke debate: • How does AIDS impact on the family, the community, the health system, and the society at large? Who carries the burden of the epidemic? • How can the negative attitudes be challenged whilst supporting traditional values? • What can be done to eliminate blame, stigma and discrimination? • How can society cope with the growing number of orphans, and increasing deaths among employees? • How can we ensure that our children grow up free of infection? • Are current prevention, care and support services sufficient? Are we addressing this issue at the right level? Building the skills of the media towards responsible coverage and communication of HIV/AIDS must take into consideration the following key elements: Changing established mindsets • Perceptions: seeing and/or describing AIDS as a plague, an invisible contagion, as moral punishment, as an invader, as a war, as a primitive force; these views must change • The message ‘AIDS kills’ is insufficient and instills fear in the reader. On its own, it does not help prevent HIV and is of limited value to those who are already infected. Messages need to focus on specific behaviourial patterns that avoid the risk of contracting HIV.


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Giving AIDS a human face • Personalize communication and coverage in the media; do not create a ‘them and us’ situation. Give a voice to the affected and infected—do not speak against them, but with them. Remember to respect confidentiality • report on positive and healthy aspects, e.g. HIV infection does not mean an immediate death sentence. Use examples of success stories, quotes from PWAS and examples of relevant intervention programmes • promote openness and caring attitudes to reduce the stigma and discrimination that is attached to AIDS. Inform and motivate, rather than impress! • use simple, layman language, and avoid the experts’ jargon • be especially careful not to raise false hopes if reporting about possible vaccines/cures • avoid sensationalism and voyeurism; do not over-dramatise. Try to highlight the positive; do not dwell on the negative • stimulate debate through investigative reporting. Instead of carrying a one-off story, raise an issue that will spark off interest and sustain it, e.g. through themes, letters to the editor, discussion fora, etc. Alleviate confusion • data normally startles readers/listeners, so be careful about overload of statistics to avoid the burden of reading. Use simple, pleasing and aesthetic words; do not get too heavy; e.g. the words incidence (new cases since a given time) and prevalence (total number of new cases, usually out of 100 000) • always determine the sector, i.e. healthy adult population, sexually active population, entire population • Determine the difference between HIV and AIDS (these terms cannot be used interchangeably) • get to understand how statistics are collected—ANC clinics; remember that many cases go unreported • understand how sampling is done • the initial window period (3–4 months) is not detected by a test. The test detects HIV antibodies and not the virus itself.

An integrated approach: SAfAIDS media strategy An integrated media approach on HIV/AIDS calls for comprehensive planning at the outset. The development of a media strategy includes conducting research, setting goals, developing strategies, undertaking activities, refining resources and evaluating the programme.


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Recognising the important role of the media in the portrayal of HIV/AIDS in the region, SAfAIDS hosted several brainstorming sessions with key media personnel, communications specialists, government officials, private sector and university representatives to determine the potential value and feasibility of a SAfAIDS media unit. Recommendations endorsed the need for SAfAIDS to extend its target audience to include the media. In early 1998, a Media Unit was established to facilitate for improved understanding, better communication and increased coverage of HIV/AIDS in southern Africa. The following goals were identified to support the development of SAfAIDS’ media unit: • establish a network of key media players who can sustain interest and provide regular coverage of HIV/ AIDS and related issues • develop information products to meet the specific expressed needs of the different media organisations and • Coordinate training workshops that impart skills to foster proactive reporting on HIV/AIDS and reproductive health issues. Main activities for the SAfAIDS Media Unit include: • Building partnerships for the purpose of networking, share and exchange of HIV/AIDS information • providing timely, appropriately-packaged, user-friendly information to suit diverse media needs • co-production of radio programmes focusing on topical issues around HIV/AIDS • training for media practitioners through workshops, seminars, in-house • Advisory relations and technical support • Establishing links with People Living with HIV/AIDS (PWAS) to sustain regular coverage in media by giving HIV/AIDS a human face • Serve as a regional information source for HIV/AIDS material. A range of activities has been undertaken since the establishment of the Media Unit. These include: a regional needs assessment; networking with regional media houses; coordination and facilitation of training workshops for journalists; production and dissemination of bi-monthly information packs; development of the media e-group; baseline analysis of media coverage in Zimbabwe; advocacy, advisory relations and technical backstopping.

Needs Assessment A three-country survey represented the first phase of the SAfAIDS media initiative. The objective of the needs survey was three-fold: 1. to determine media information needs, i.e., where the media are with respect to understanding, communicating and covering HIV/AIDS and related issues 2. what tools media need in order to report effectively on HIV/AIDS, and


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3. to determine existing HIV/AIDS information sources with a view to how SAfAIDS can assist in effectively disseminating relevant information to suit media needs, and, where necessary, provide training. The media needs assessment was conducted in Zambia (pilot), Zimbabwe and South Africa between July and November 1998. A total of 27 regional media institutions were visited. These included 13 print houses, four training institutions, four broadcast stations, two public relations agencies and one government ministry. Selection was based on SAfAIDS’ existing working relationship in these countries with high HIV prevalence. A questionnaire was designed after collection and analysis of background resource material. In addition, structured interviews and in-depth discussions with key informants took place. The conclusions of the needs assessment were: • Regional media houses have been covering HIV/AIDS and related issues in their publications and programmes, but coverage has been irregular due to lack of appropriately-packaged information to suit diverse needs • sources that channel accurate information on HIV/ AIDS are limited, thus the importance of networking for the purpose of sharing and exchange of information on a sufficiently wide range of issues • training is essential for media practitioners covering HIV/AIDS; this can be done through workshops, seminars or in newsrooms to keep abreast of developments in the fast-changing mode of the epidemic. The recommendations from the needs assessment have led to further activities that are detailed below.

Networking This is a core activity of the SAfAIDS Media Unit. The objective: to build and strengthen relationships between media houses, training institutions and media practitioners for regular share and exchange of HIV/AIDS information. There are two types of networking in the media unit at SAfAIDS: • share and exchange of information with established partners such as media houses, editors, individual journalists • journalists, media representatives and information officers who visit SAfAIDS to seek information for specific assignments or information requests. Since the development of the media unit, new media links have been formed and increased partnerships have been established with media institutions from the region. This has been done through existing contacts, workshops, seminars and discussion fora. SAfAIDS has ongoing links on media-related activities with the following regional organisations: UNAIDS, Panos (London and Zambia), JAAIDS (Journalists Against AIDS, Nigeria), NSJ (Nordic-SADC Journalism Centre, Mozambique); ZAMCOM (Zambia), AIDS 2000 Advisory Committee (South Africa), Inter Press Service


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(Zimbabwe), Media Institute of Southern Africa (Namibia); and the Centre for Cultural and Media Studies (South Africa). The Media Unit continues to add new contacts to its network of partners while maintaining and strengthening existing links in the region. Interviews or information requests have been undertaken with national broadcast agencies such as Swedish National television and Dutch National Radio (NCRV); global reporting agencies such as CBS, CNN and BBC; newspapers including the Toronto Star from Canada, The Village Voice, Boston Globe, Washington Post. Collaboration takes place in various ways, including visits to SAfAIDS; studio and telephone interviews, as well as interviews in person; telephone calls and e-mail.

Training workshops A key recommendation from the needs assessment highlighted the importance of training workshops to improve understanding on HIV/AIDS and build skills in reporting on this subject. To date, SAfAIDS has conducted three training workshops targeting different media audiences.The table below reflects details: Heads of Media Training Institutions Workshop on HIV/AIDS and Reproductive Health—February 1999 The focus of this workshop was to discuss the diversity of developmental and communication issues related to HIV/ AIDS; develop strategies that will strengthen the capacity of the media training institutions to contribute to the increase/improvement of HIV/AIDS communication; and discuss potential partnerships between SAfAIDS and regional training institutions. This workshop brought about a clearer understanding of the purpose, role and first steps of the SAfAIDS Media Unit. Regional Editors’ Workshop on HIV/AIDS—March 1999 The workshop objectives were developed as a result of the needs assessment findings.They covered: developing positive approaches towards reporting on HIV/AIDS, discussing strategies that focus on regular coverage around HIV/AIDS, and assisting SAfAIDS to develop a regional information service for the media. This workshop highlighted strategies and positive approaches to HIV/ AIDS reporting and has led to journalists exploring different angles and approaches to reporting on HIV/ AIDS issues. Effective Guidelines to Reporting on HIV/AIDS December 1999 This workshop was held in Swaziland and attended by 15 print and broadcast journalists. The objectives were to develop balanced attitudes and approaches towards HIV/ AIDS, develop effective guidelines for reporting on HIV/ AIDS, and build and strengthen links between people


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Workshops

Participants/gender

Country representation

1) Media Heads of Training Institutions, Harare, Zimbabwe, 9–11 February, 1998

25 participants (media heads of institutions, university heads, editors)/8 females, 17 males

South Africa, Zimbabwe, Kenya, Uganda, Tanzania, Mozambique, Switzerland, UK, Zambia

2) Regional Editors Workshop, Harare, Zimbabwe, 29–31 March 1999

26 participants (editors, senior reporters, info officers, PWAS)/11 females, 15 males

Zimbabwe, Angola, Kenya, Mozambique, Zambia, South Africa, Uganda, Botswana, Namibia, Malawi, Switzerland

3) Media Training 15 participants (editors, PWAS, Workshop on HIV/AIDS, reporters)/10 females, 5 males Mbabane, Swaziland, 6–8 December, 1999

Swaziland

living with HIV/AIDS and the media. This was the first workshop of its kind for journalists in Swaziland and it gave journalists the opportunity to formally report on HIV/AIDS, raise debate about underlying issues regarding the epidemic and better understand the terms and terminologies associated with HIV/AIDS reporting. The workshop also allowed journalists the opportunity to interact and form links with People Living With HIV/ AIDS (PWAS). Four people living with HIV participated and contributed to the discussions. As a result of the workshop, an HIV/AIDS column has since been established in the Swazi Observer, a daily newspaper. Planning has begun for a further training workshop around mid-April in Maputo, Mozambique for 16 Portuguese-speaking journalists from Angola and Mozambique. Feedback from several of the Media Unit’s working partners has suggested the need for a Portuguese-speaking skills building workshop for journalists from Mozambique and Angola who have been left out of the training process: ‘These journalists (will) come from countries with several similarities—not only the common language—but also the context (recent or civil war, low level of media development, general taboos on the HIV/AIDS approach in society, increase of prostitution, lack of general and basic information, polygamy accepted as usual…). It’s also an excellent opportunity for journalists for both countries learning some interesting things on the topic (and) taking advantage of SAfAIDS’ expertise on that…. It could help also the journalists to network better between the two countries and amongst themselves…we need …effective frameworks or links that should work on the ground’. (Mario Paiva, a regional correspondent based in Angola, June 1999) The workshop is being coordinated by the Nordic-SADC Journalism Centre (NSJ) in Maputo, who specialise in regional training of journalists.


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Information Packs Following recommendations from the three-country needs assessment and the Regional Editors Workshop in March 1999, SAfAIDS began the production of media information packs to assist journalists in their coverage of HIV/AIDS. The production of the first information pack coincided with the pre-ICASA African media training workshop cohosted by Panos and UNAIDS in Zambia and facilitated by SAfAIDS. The first pack on Youth and Sexuality was pilot-tested and highly recommended by workshop participants. The media packs are produced on a bi-monthly basis with professional assistance from a media consultant. Each pack contains a mixed bag of the following items: • Fact sheets with basic data, statistics and information about how HIV/AIDS impacts on different sectors, e.g. why youth are at risk and vulnerable; the importance of sex education; can youth change their sexual behaviour?; definition of youth; youth campaigns; rights of youth; why teenage girls and young women are at higher risk of HIV infection. • Feature stories (two to three) written by journalists in the region. They can be reproduced free of charge with acknowledgement. Feature summaries (about 300 words) are available for radio broadcasters. An example of a feature story: What’s Love Got To Do With It? profiles 16-year-old Chibi who embodies the dilemma of many teenage girls in Zimbabwe: they recognise the dangers of unprotected sex but are under tremendous social and economic pressure to have sex. • A glossary of frequently used terms and suggestions for appropriate language; e.g. commercial sex worker, not “prostitute”. The nature of prostitution differs from country to country and from culture to culture. The term “sex worker” alone is inadequate because some sex workers operate for money and some “non-commercial sex workers” operate for security. • A sprinkling of story ideas that editors might consider assigning or journalists might investigate; e.g. on sex workers are health services and governments interested in making commercial sex safer for the workers, their clients and their families? Are there specific, well-thought, co-ordinated policies and programmes in place, or a patchwork of ad hoc initiatives? • A list of links and resources in the region, including www sites. The production process is participatory and involves media professionals from throughout the region. SAfAIDS develops a theme for each pack and suggestions around this theme are solicited from regional media partners who contribute their ideas, the best of which are chosen to submit a full feature for payment. Contributors to the media information packs qualify through written submission of their HIV/AIDS work. Features stories have been published from South Africa, Zambia, Malawi, Zimbabwe and Botswana. To date, the following packs have been produced and disseminated in the region:

HIV/AIDS and information: Region specific information for journalists Information Pack

Pub date

Youth and Sexuality

Sept 1999

Sex Workers

December 1999

Living Positively

Feb 2000

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SAfAIDS continues to receive enthusiastic responses to calls for editorial contributions from journalists from the region. This one from Radio Phoenix in Zambia is a typical example: ‘My name is Chama, a young female Zambian journalist. I work at a privatelyowned community radio station. I want to know more about SAfAIDS (media unit) and how one gets to contribute stories/articles’. 30 September 1999. Matilda Kasanga from the Guardian Limited in Tanzania is interested in forming a partnership with the media unit: ‘I am a Tanzanian journalist working with the Guardian newspaper based in Dar es Salaam. I have heard about SAfAIDS several times from friends and through reading your publications. Having read the objectives of SAfAIDS (media unit), I am interested in becoming a member for I have been writing about HIV/AIDS for sometime now. I am a member of The Tanzania Media Women’s Association, Association of Journalists and Media Workers AJM, MISA and other media organisations. I will be very grateful if you will associate me in your programmes. I hope my association with SAfAIDS helps expose me more in the HIV/AIDS area thus improve my writing about the disease. I would also like to request any latest information on HIV/AIDS’. 22 February 2000.

Media e-group Prior to World AIDS Day December 1999, SAfAIDS and UNAIDS (Pretoria) launched a media e-group, specifically targeting the media in southern Africa. Postings on the media e-group include media campaigns, press releases, feature articles, and regional news stories on HIV/AIDS. The media forum was developed to serve the needs of journalists working in the region on HIV/AIDS. As this forum is just recently launched, SAfAIDS and UNAIDS are welcoming ideas from journalists on the information they would prefer to receive and forward suggestions as to what should not be distributed through this forum. Ideas can be shared by sending an e-mail to: [email protected] The media e-group has many useful features that group members can utilise: • The address [email protected] can send a message to all journalists on the listserve. • The calendar function can be used to set dates of meetings and it will also send out


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periodic reminders. • The contact database in which the contact details of all e-group members are recorded. • A document vault where documents can be stored for easy access by members as well as links to organizations working in the area of HIV/AIDS in the region who have websites. Although it will take some time get all these functions operating, it is hoped that they will be operational by the first quarter of 2000. The moderators will send out periodic updates around progress in this regard. Annual evaluations of the e-group will take place to ensure that the e-group continually evolves to meet all information requirements.

Baseline: media coverage of HIV/AIDS in Zimbabwe In 1999, SAfAIDS conducted a baseline analysis to document and analyse HIV/AIDS coverage in Zimbabwean newspapers. The study explored qualitatively and quantitatively the volume and content of articles mentioning HIV/AIDS. It looked at two periods of three-month reviews November 1998—January 1999 and March—May 1999. Main areas of analysis included review of newspaper clippings, themes, sizes of the headlines and language used. Although the results are not yet published, main HIV/AIDS areas in the Zimbabwean press have focussed on prevention and awareness as opposed to issues on care and counselling. A significant number of articles were written about children and orphans infected and affected by HIV/AIDS. Another further analysis will be conducted to compare HIV/AIDS coverage in the print media over a two-year time period.

Advisory Work and Technical Backstopping The media team undertakes advisory work in media-related activities in an effort to increase knowledge and build capacity and commitment around HIV/ AIDS and related issues. Advisory relations and activities include: SIDA Partnership on Adolescents Network (SPANe) The Media Unit has been collaborating with the SIDA Partnership on Adolescents Network (SPANe) since November 1998. Linked with the EU funded Adolescent Reproductive Health Research Network (ARHNe), this project looks at the development of FEMINA, a health information magazine published in Tanzania, and distributed to Kenya and Uganda (distribution: 30,000 copies). Entertainers Against AIDS Rooftop Promotions, a leading arts organisation in Zimbabwe, held a series of musical events entitled Entertainers Against AIDS in 1998 (involving top musicians such as Black


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Umfolosi, Mateo and Friends and Busi and Band Rain). IEC material on HIV/AIDS was collected from local ASOs and NGOs and freely distributed at the shows, which promoted responsible sexual behaviour among youth. SAfAIDS participated and evaluated the impact of these shows and contributed with suggestions on how to continue this sort of edutainment using role models and getting positive messages across with the ultimate aim of leading to a change in attitudes and behaviour. Federation of Africa Media Women of Zimbabwe (FAMWZ) The Media Unit is collaborating with the Federation of Africa Media Women of Zimbabwe (FAMWZ) a media NGO in Zimbabwe concerned with women’s issues, including HIV/AIDS. In April 2000, FAMWZ will host the Media 2000 Awards for journalists. SAfAIDS is sponsoring a prize for the most promising writer in the area of Gender and HIV/AIDS. National Behaviour Change Communication Strategy (BCCS) The Media Manager is a sub-committee member of the BCCS programme initiated by the Ministries of Information and Posts and Telecommunications in Zimbabwe. The programme involves collaboration between the Government of Zimbabwe, the NACP, NGOs and donors such as DfID, UNFPA and USAID to monitor and guide the development of a Communication Implementation Unit (CIU) for Zimbabwe, known as the Beyond Awareness Campaign. Through its participation, SAfAIDS has contributed to the development of the campaign and also drawn on lessons from this national level work for its own regional media strategy. WHO and UNICEF, in collaboration with the Ministry of Information, are running similar media awareness campaigns and this involves hosting a series of capacity building training workshops for national media practitioners. The Media Unit has participated by providing technical assistance and presentation of papers. AIDS 2000 The Media Unit is a member of the Communications Advisory Panel for the 13th International AIDS Conference to be held in Durban, South Africa in July 2000. Other members include ICASO (Canada), UNAIDS (Geneva), ICW (UK), World Bank (Abidjan), African Council of Communication Education (Nigeria), and the International AIDS Society (Sweden). Advisory work includes planning for urban 2000 media activities including the media centre, media monitoring, media information, on-site newspaper, and post-conference activities.

Other activities Media and PWA collaboration The Media Unit in collaboration with ActionAid has begun to hold meetings designed to


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strengthen links and partnerships between the media and people living with HIV/AIDS. The first meeting took place in November 1999. Participants included The Daily News, Federation of Africa Media Women of Zimbabwe, AIDS Counselling Trust and Voices and Choices. Issues discussed include: disclosure, use of terms and terminologies and the importance of openness from medical practitioners. It is anticipated that these meetings will lead to monthly discussion fora on issues impacting PWAS and the press such as openness, the human face of HIV, the ‘them and us’ situation, investigative journalism and collaborating with editors with a view to implementing change in the editorial policy around HIV/ AIDS writing. Positive? The Media Unit commissioned Rooftop Promotions (Harare, Zimbabwe) to produce a video version of the highly acclaimed play Positive?—a drama that aims to stimulate discussion and provoke debate around the personal issues of confronting one’s own possible infection of HIV The video was launched in February 2000 in Harare to an audience of media representatives and regional correspondents.

Conclusion The above activities sum up the SAfAIDS Media Unit programme. The Media Unit is currently in PhaseTwo of its planned activities and will continue to influence regional journalists and their editors to prioritise the issue of HIV/AIDS on their editorial agendas. Journalists need to go beyond commenting on new initiatives for prevention, reporting on workshops or conferences and describing updated data. The biggest challenge is to keep the topic of HIV/AIDS topical and newsworthy. Therefore, media communication and coverage of HIV/AIDS must be transformed into a respected and ‘cutting edge’ form of journalism. The SAfAIDS Media Unit believes that effective communication with an emphasis on debate and innovative ways of addressing the issues will build awareness, inspire dialogue, and hopefully be the first steps towards behaviour change.

HOW SAFE ARE PEOPLE’S INTERPRETATIONS OF SAFER SEX? HEALTH EDUCATION MESSAGES IN THE CONTEXT OF HIV/AIDS S.Veenapani and Meenakshi Gupta Indian Institute of Technology, Mumbai, India Having obtained an MA in Social Psychology, S.Veenapani taught undergraduate and postgraduate courses for three years before enrolling for a Ph.D. program at the Indian Institute of Technology, Mumbai. Her thesis, entitled ’Assessing Construction of Risk from HIV/AIDS’, was a two-phased study. The first phase dealt with how groups at potential risk, namely the truck drivers, the gay men, the CSWs, and the youth, perceive risk, their actual susceptibility, the factors that affect their risk construction and their strategies for managing risk. The second phase dealt with how the news media in Mumbai has portrayed the AIDS risk. She is currently engaged in a research project with Dr. Sanjay Srivastav of Deakin University, Melbourne, Australia, entitled ’Masculinities, Sexualities and Culture in South Asia’ which involves carrying out a cultural analysis by looking at various sites where sexual knowledge is produced, namely the sexologists, the self-appointed sexologists (quacks), sexologists adhering to alternative medical systems, sex counsellors, advice columns in magazines and newspapers, pornographic literature and other printed and audio-visual material. Readers can contact S. Veenapani at the following email address: [email protected]

Abstract Interviews with four groups in India—male truck drivers, gay men, female brothel keepers and commercial sex workers, and male and female youth— revealed that, on the surface, they seem to be knowledgeable about AIDS and how it is transmitted. However, examination of how they interpret the idea of safer behaviour from the perspective of their personal situations showed problems in the ways they view the following: • condom use as protection from HIV; • groups which they perceive as being at risk; • who they believe is responsible for transmission of the disease; and,


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• their appraisal of personal risk. The study also offered insights into the role of the media as a source of information and how each of these four groups perceive the media.

Introduction Understanding AIDS is often reduced in public health discourse to a question of ‘knowing the facts’. However, enmeshed as it is in sexual and social practices, AIDS is a subject that requires interpretation. Treichler argues that public health educators must take the available range of ideas seriously. ‘We cannot effectively analyze AIDS or develop intelligent social policy if we discuss such conceptions as irrational myths and fantasies that ignore the ‘real scientific facts’. Rather they are a part of the necessary work that people do in attempting to understand—however imperfectly—the complex, puzzling, and quite terrifying phenomenon of AIDS.’ 1 Different models of preventive health behaviour value the role of ‘risk perception’ in determining safer behaviour, 2 – 6 but they do not take into account fundamental differences between clinical and epidemiological understandings of risk and lay understandings of risk. Health education messages are mediated through perceptions of risk held by recipients that do not necessarily match those of health educators. It has therefore been argued that simply bombarding people with undifferentiated and absolute messages about unsafe sex and risk-taking will not substantially affect their behaviour. It thus becomes important to assess how different population groups construct the concept of risk so that customized interventions can be developed for them keeping their beliefs and concerns in mind. A review of social research on HIV/AIDS in India shows that a large number of studies on knowledge, attitudes, practices have been undertaken with different groups. These studies assessed their levels of awareness about AIDS, transmission routes of HIV, prevention methods, and attitudes towards people infected with HIV A few looked into behavioural practices that render people at risk. A number of focused informationeducation-communication (IEC) interventions have also been carried out with different groups. This research has nevertheless not gone far enough. Since 1981 a variety of actors have sought to assimilate AIDS into their own symbolic systems; at times, they have used ‘HIV infection’ and ‘AIDS’ as an instrument to accomplish different goals. Now that a public health discourse has been developed on the subject, there is a need to examine the varied interpretations that have been used. For example, the literature on interventions reveals a difference between those that conceptualize and address risk at the level of individual persons (the majority) and those that view risk behaviour and situations primarily as social phenomena. While an increasing number of interventions recognize the importance of social norms, they still tend to focus on individuals’ perceptions of norms and choices in relation to

Health education messages in the context of HIV/AIDS

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behaviour. A need therefore remains to understand behaviour not only in terms of individual perceptions and choices but also from the perspective of social and environmental determinants of HIV transmission. The study discussed here aims to contribute to that understanding; it is part of work being done in Mumbai to assess how various groups and the news media construct the concept of ‘risk from HIV/AIDS’.

The study methodology The study’s main objective was to explore how ‘safer behaviour’ was constructed by four groups at potential risk of HIV/AIDS: truck drivers, gay men, brothel keepers and commercial sex workers, and youth. An attempt was also made to assess these groups’ primary sources of information and the way in which the information was disseminated. The sample comprised 21 male long-distance truck drivers, 25 gay men, 5 female brothel keepers and 30 male and female youth in Mumbai. We selected these four groups because we believe their sexual practices may render them at risk of HIV infection. The truck drivers were recruited from octroi nakas (places where they queue to pay toll taxes) and petrol pumps because they have time to answer questions while waiting in the queues. Their ages ranged from 23 to 45 years; except for four, they were either illiterate or school dropouts. The gay men were recruited through the snowballing technique (the first respondents mentioned people they knew who might want to participate, etc.). They were from differing socio-economic classes; all were literate and some had graduated from college. Their ages ranged between 25 and 42 years. The brothel keepers were recruited from a red-light area. Though we only included five, we thought they were an important group because each one managed the work of 5– 6 female commercial sex workers (CSWs) and therefore strongly influenced the sex workers’ behaviour. A wealth of data was gathered from informal chats with the CSWs as well as workers from a non-governmental organization who have been working with them for a long period of time. Observations from field visits to the area were also included as study data. The youth, aged 20–24 years, were recruited from different academic streams of Mumbai University. Most were postgraduates and they included an equal number of men and women. Unfortunately, the sample did not include youth of the lower socio-economic classes, which is a major drawback of the study because the data are consequently not representative and leave out an important segment considered to be at high risk. We conducted open-ended, semi-structured in-depth interviews with the members of all four groups. The interviews centred around a number of themes: demographic characteristics (age, etc.), lifestyle, major areas of concern, knowledge of what is risky, their sexual history, perceptions of who is at risk of HIV infection, their sources of information, their systems of social support, their strategies for managing risk, their perceived susceptibility to HIV infection, etc. All the interviews, except for those with the brothel keepers/CSWs (as they did not permit it), were taped and later transcribed; the interviews in Hindi were translated into English. The analysis was done using selected elements from the grounded theory approach


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developed by Strauss and Corbin. 7 This approach does not begin with assumptions but allows ideas to emerge during examination of the data.

Findings Truck drivers Barring one, all the truck drivers had heard of AIDS and were aware that it [HIV] was transmitted through sexual intercourse. However, for most of them this meant that AIDS was sexually transmitted from women to men. They specifically referred to transmission during vaginal intercourse, from a CSW to themselves, calling this gandaa kaam (bad deed), galat kaam, (wrong deed) or ‘outline’. This idea did not include wives passing on infection to their husbands, even though a few truck drivers voiced suspicions about their wives having other sexual partners while they were away from home for long periods of time. ‘When we are away for months, we cannot know if our wives have been proper or not. I don’t use condoms with her, why should I use condoms with my wife?’ All the truck drivers felt that condoms were not a device to be used with one’s wife but something to be used with CSWs. A couple did speak about husband-to-wife and wife-tochild transmission of HIV However, this was because they feared that the whole family would get it through touch and sharing food, rather than sexually or by birth. Again with the exception of one respondent, all the truck drivers believed that they could acquire AIDS from an infected person by sharing food, clothes, by touch, and even by talking to people who were infected. Interestingly, sexually-active drivers were more concerned about being at risk from other infected drivers rather than due to the sexual route of transmission. A few drivers also admitted to having anal intercourse with other men, mainly other truck drivers or their cleaners. They did not feel the need to use condoms since they felt that they were safe. ‘I do not do outline. I do it in my own clan, with men just like us’. ‘If you do it from the front (vaginal intercourse) you get AIDS, not from behind (anal sex)’. For the truck drivers, risk therefore involved having sexual intercourse with CSWs and acquiring infection from other infected drivers through touch and sharing food and clothes. What they viewed as safe was having sex with their own wives, irrespective of their own or their wives’ sexual history, as well as having anal intercourse with other men or women. The two most common sources of information for the truck drivers were other drivers and billboards along the highway with safer sex messages. Newspapers were not an effective source of information as most were illiterate. Their mobility prevented them from watching television. Nevertheless, a number mentioned that the media placed blame on them for spreading the epidemic. They thought this was unfair, with some feeling that


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the blame ought to be placed on commercial sex workers. ‘He [truck driver] is far away from home for months. Sooner or later he will definitely go. The woman has to stop’. ‘The women keep standing day and night on the road. They are all Muslims. They get married, have children and get a divorce and then come into this line and lure us’. The two most common sources of information for the truck drivers were other drivers and billboards along the highway with safer sex messages. Newspapers were not an effective source of information as most were illiterate. Their mobility prevented them from watching television. In addition, they felt that people in general tended to think of truck drivers as a high-risk group. While some said that this was correct to some extent, they commented that one cannot generalize since ‘just like all the five fingers are not equal, the truck drivers are also not alike.’ Their primary source of information was their peers. There was a two-step flow of information where messages from the media were passed on to the literate truck drivers; they in turn passed the messages on to their illiterate friends. When asked what they recall having read on billboards, all of them said that the messages were about how one should not have sex with CSWs and that Nirodh (a brand of condom) should be used to prevent AIDS. ‘When we travel on the road, it is written that if one does outline, AIDS spreads. One should use Nirodh. More I don’t remember’. Although most believed that the information presented in the billboards was correct, some felt that condoms were an ineffective method of protection from HIV What they mostly heard from their peers were stories about how other truck drivers who did ‘outline’ had acquired AIDS and had died from it.

Gay men The gay men in the sample were well informed; for them, safer sex took on various meanings. Curbing their sex drive and abstaining from penetrative sex was preferred by some due to the advent of AIDS. ‘I always have safe sex. I do not enjoy penetration or oral sex. I would much rather do mutual masturbation’. ‘I never use a condom but that is because I am very frightened of AIDS and I never have sex. I roam around a lot and I have fun but I never have sex. I have got this fright. Many people say, get out of it, but I cannot’. Always using condoms with their partner was not uncommon.


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‘Since 1990 I always practise safe sex. I do not talk to my partner about HIV. I take the precautions. And if I want my partner to penetrate me, I ask him to use two condoms because one might break’. Sometimes it went beyond using condoms. ‘I had a cut in my finger and the wound was fresh when I was having sex. In the middle of it I realized. So I cleaned my finger and bandaged it to keep it away from bodily fluids’. Nevertheless, although some gay men professed that they always used condoms, others admitted that in relationships where there was some emotional involvement, there was some relaxation in condom use. With other partners however, they had protected sex. ‘When you are in love with someone and you care, you want to trust that person’. ‘I do not use a condom with the person I love and he does not use a condom with me. With others, we always use a condom if we decide to have anal sex in the first place’. Another popular meaning of safer behaviour was a shift in favour of monogamous relationships. ‘The incentive to continue in a monogamous relationship is greater after the advent of AIDS’. There was some confusion about whether unprotected oral sex was safe or not. Some believed it was and some thought it wasn’t. All the gay men considered unprotected anal sex with multiple partners, heterosexual sex between CSWs and men and then between the same men and their wives as risky. They also thought that bisexuals and men who have sex with men but do not have a clear gay identity were more at risk than the gay men. Most of the gay men were educated but their primary source of information was their community rather than the media. Programmes are conducted within the community to meet their information needs by gay organizations such as Bombay Dost and Udaan. While Bombay Dost caters to upper and upper-middle class men, Udaan serves lowermiddle and lower class men. These organizations mainly collect information world-wide which is relevant to the gay community and pass it on to them during their weekly meetings. They also have counselling centres for gay men with respect to sexual health. Most of the gay men were educated but their primary source of information was their community rather than the media. Most of the respondents felt that the media had not covered gay issues with respect to AIDS adequately and that newspaper accounts lacked credibility and sensitivity because


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the mainstream media are ‘run by the heterosexuals for the heterosexuals’. ‘I feel the media has ignored the gay community. They always talk about man and woman but never man and man. When they talk about multiple partners, they talk about only man and woman’. ‘The Indian media does not ascribe importance to AIDS. When they talk about the gay community, they write about juicy spicy stories and scandals rather than a genuine desire to understand’.

Brothel keepers/CSWs All five brothel keepers and some of the CSWs were aware of HIV/AIDS. They knew about the transmission routes of HIV and knew the risks involved when they serviced clients without condoms. Most of the CSWs were more concerned about being at risk from their clients rather than about passing on the infection to their clients. Some of the sex workers who were HIV-positive continued to service clients with or without condoms. This was either due to denial, as they refused to believe that they were HIV-positive, or due to economic constraints that robbed them of the power to negotiate safer sex. Two of the brothel keepers knew about their own positive HIV status; they were working for an NGO as peer educators. The other three who were uninfected were no longer involved in sexual activity with clients but were sexually active with their aadmi or mard a man who for all practical purposes was their husband and whose children they often bore. This man was usually a pimp (a go-between between the client and the brothel keepers) and had sexual relations with other women. The brothel keepers were aware about the sexual activity of their aadmi. They still preferred to have unprotected sex with the aadmi as there was some emotional involvement between them. The brothel keepers and CSWs considered oral sex a more intimate and timeconsuming act than vaginal intercourse. They were confused about whether oral sex was risky or not. For the brothel keepers/CSWs, their main source of information has been the outreach programmes organized by various institutions and the radio. Most of them do not have access to television or read the newspapers. They do feel that the media blames them for the spread of the disease and are resentful of the way in which the onus of passing on the virus seems to rest upon them.

Youth For the youth, the construction of safer behaviour involved maintaining physical distance from people who are infected, pre-marital abstinence, sexual intercourse with a condom, monogamous relationship and sex with ‘safe’ partners. There are a few problems with such constructions of ‘safer’ behaviour. First, there was widespread ignorance which led to myths about AIDS, e.g., the need felt to maintain


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physical distance from those infected. This is what a couple of them had to say: ‘The research till now says that AIDS doesn’t spread this way. But tomorrow they will say it spreads even by sitting close to someone. So isn’t it better if I start taking precautions now itself?’

Some of the places where AIDS work is carried out in India: Cell for AIDS Research Action and Training (CARAT), Dept of Medical Psychiatric Social Wrok, TISS, Deonar Mumbai 400 058, Maharashtra, India. Counselling and Allied Services for AIDS (CASA), 3, Vaillankanni prasad, Plot # 575 B, Mori Road, Mahim (West), Mumbai 400 016, Maharashtra, India.Tel: +91–22–4467665, Fax; +91–22–444 5647 Email: [email protected] Dr. Geeta Bhave, K.E.M. Hospital, Microbiology Department, Parel Mumbai 400 012, Maharashtra, India. Tel. +91–22–4136051 Ms. Kamini Kapadia, Director, Committted Community Development Trust, Pali Chimbhai Municipal School, St Joseph’s Road, Chimbai, Bandra (w), Mumbai 400 050, Maharashtra, India. Tel. +91–22–6443345/6513908 AIDS STD and Health Action (ASHA BMC Project). Tel. +91–22– 3080486/3005175 Fax: (c/o Yogesh Communciations) +91–22–3080231. Population Services International (PSI), India. Tel. +91–22–3894375 Rotary Club of Bombay North West, Tel. +91–22- 8823247, Fax: +91–22– 8050409 Email: [email protected] The Humsafar Trust, India, Tel. +91–22–6187476, Fax: +91–22–6175081 Email: [email protected] Maharashtra Network for Positive people (MNP+).Tel. +91–22–3011005 Mumbai District AIDS Control Society, Acworth Complex, Wadala, Mumbai, Maharashtra, India. ‘I would like to be supportive in a positive way. I would like to help out, care and look after a friend who was HIV-positive but I would avoid touching. What can I do? It’s not brave to drown while saving somebody who is drowning’. Second, their construction of a ‘safe’ partner was not based on any objective criteria. Safe partners were those who were from ‘good families’, ‘clean’ in appearance and those who were familiar. Risky partners were said to be ‘fast’ women belonging to an ‘open society’, drug users, urban women and foreigners. ‘I always thought people who are prostitutes or who are in the sex trade or people who are drug addicts, or people from foreign countries are responsible for this. I know it’s the wrong way to look at it, that it’s not the American problem but still it began there and the Americans have a very sexually-active lifestyle so you feel that they might have it’. I’ll be scared to not use a condom if I think I am at risk. But I’m sure I’ll be


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able to find out if she’s risky after talking to her’. For the young women, men belonging to a ‘good background’, those who were economically sound and those whom they have known for a long time were not risky partners. ‘I won’t be scared if it’s a friend or somebody I know. I will be scared if it’s a stranger or somebody in the first or second meeting. With a friend I may not use a condom, but with a stranger, I will’. ‘In marriage, of course, there is some trust involved so you can’t always use a condom. This issue won’t come up during marriage. At least in India, I don’t think there is a need’. The last statement illustrates another problem: unprotected sex in a monogamous relationship is perceived as safe even if the partner’s sexual history is unknown. Marriage and love lull people into a sense of security and people fall back on trust rather than on condom use. The youths’ primary source of information was the media, specifically newspapers followed by magazines and television. Most of them said that they read most things related to HIV/AIDS that appeared in the news media. However, they held the view that the information lacked clarity because newspapers tend to ‘beat around the bush’. Confusion regarding issues pertaining to oral sex, shaving and sharing utensils as means of passing on HIV infection was present—they felt that the media had not adequately dealt with these issues. I’m confused whether fellatio or oral sex leads to AIDS or not. The media has not answered that’. ‘There are doubts in my mind whether saliva and therefore sharing utensils can pass AIDS or not’. ‘I remember seeing ads that say use condoms and kissing doesn’t cause AIDS but I’m confused. I’m also confused whether shaving ca uses AIDS or not’. When asked what they recalled reading in the papers, all predominantly remembered reading statistics, especially the number of sex workers who are infected in Mumbai. One of the men in the sample said, ‘I remember reading that in Mumbai there are 60–70% prostitutes who are infected and that it is more in Mumbai because the foreign tourists are more and the doctors don’t help patients. I remember reading about voluntary organizations going to red-light areas in the newspapers’. Another woman said, ‘All they seem to talk about is—so many prostitutes in Mumbai have AIDS and the number goes up!’


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It is evident that what they recall having read in the papers reflects how they construct risk.

Discussion The study showed that, although people seem to know about AIDS and various routes of HIV transmission, this knowledge may be superficial. Their consequent constructions of personal risk may therefore entail problems regarding how they perceive safer behaviour. • Most of the respondents did not view themselves as transmission agents but rather as persons who are exposed to risk from others. This corroborates what Waldby et al. have pointed out: the perspective of the cordon sanitaire (an imaginary margin of safety) never includes the viewer who occupies its centre as an object within the field of vision—s/he never sees her/ himself as an infectious agent, only as a possible recipient of infection. 8 • Members of all the groups viewed the condom as a device to be used in short-term casual relationships; people fell back on trust and faithfulness when it came to serious long-term relationships. Non-use of condoms had a special emotional significance for them which undermined its acceptability for use with loved ones or long-term partners. • Members of all the groups were surprisingly accurate in their perceptions of their highest risk behaviours: for example, truck drivers viewed sex with CSWs as risky, CSWs viewed their clients as their biggest risk. The problems relate to what might be called ‘secondary risk’, which also spreads the virus: CSWs with non-paying clients, gay men with female partners, and youth and truck drivers with their non-CSW clients. • It emerged that judgements about ‘safe’ partners are not based on any objective criteria. This has important implications since people make judgements about their personal susceptibility on the basis of identification of certain groups who are perceived to be at-risk. Non-identification with these groups and avoidance of them is then viewed as an appropriate method of protection. It also serves to enhance denial. Although emotionally reassuring, it is not an effective method of protection from HIV/AIDS. • The study also brings out a need for a good balance of persuasive as well as enabling approaches to bring about behavioural change. In some instances, there is a need for IEC as certain myths about AIDS, confusion about oral sex, and inadequate appraisals of ‘secondary’ risk still prevail. However, in other instances, an enabling environment would be more productive. For example, the truck drivers need better work conditions, better wages, a union and better working hours so that they can go home more frequently. Given the social and economic constraints that women face, preventing HIV infection will require acknowledging and addressing the fundamental differences in power relations between men and women. The CSWs need an enabling environment that improves their standard of living and gives them a common platform to voice their concerns; this in turn could give them the power to negotiate safer sex with their clients. • Except for the youth, the mainstream media are not a primary—or direct—source of information. Peer education and outreach programmes from within and outside the community—which do use the media as sources for their messages—are viewed as a


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primary source of information. It is noteworthy that some of the groups found the media to be biased and lacking credibility (gay men and sex workers). Even those who do not have direct access to the media may therefore place greater trust in other sources of information. The youth and truck drivers—some of whom had direct access to media— were slightly skeptical about the ‘facts’ presented. Many of the groups appeared to place the most trust in messages conveyed to them personally by people whom they found to be credible and sympathetic.

Conclusion Placing blame on ‘others’ was a pervasive theme among the groups interviewed in this study. This tendency has definite negative repercussions because it helps people divest themselves of responsibility and control over transmission of HIV; moreover, it increases stigmatization of groups who are perceived to be particularly ‘risky’ such as CSWs. Interventions as well as media portrayals need to be sensitive so that they do not further increase blame and scapegoating. The CSWs, truck drivers and gay men protested against the blame placed on them for spreading the epidemic, while very little concern is shown for their welfare. Interventions should seek to protect such vulnerable groups without justifying or framing prevention messages that imply certain groups are responsible or need to be avoided for protection. The construction of HIV/AIDS risk according to ‘safe’and ‘unsafe’ partners sets up a reassuring appearance of ‘mutual exclusivity’. 9 It demands that people clearly identify with one side or the other of a division. These classifications need to be challenged by health education strategies that develop more imaginative representations of what is risky. Safer sex in India has been equated with male penetration of the vagina involving condom use. This definition must be broadened in the public health discourse. People need to be made aware of oral sex as a safer and pleasurable alternative. Sex workers can be taught about thigh sex (the man’s penis is stimulated between the woman’s thighs) and putting condoms on their clients with as part of fellatio. Among some gay men, mutual masturbation and oral sex with condoms are already prevalent but these alternatives need to be propagated widely among others. While mass campaigns regarding the risk of certain sexual acts should continue, the pleasures to be gained from a wider range of sexual acts should more easily be demonstrated. The association of condoms with AIDS has resulted in both positive and negative meanings. The condom user may be considered healthy, modern and sensible, but also promiscuous and immoral. For some people, condoms are associated with shame, embarrassment and deviance; they are thus not viewed as an appropriate device for use with one’s spouse or long-tem partner. These cultural meanings surrounding condoms undermine their acceptability. Representations of condom use need to enhance their scope so that condoms are not limited to short-term, socially unacceptable, ‘casual’ relationships. Condoms need to be associated with eroticism and passion, so that people who consider themselves sensual and passionate view them as more acceptable. All of the above recommendations require changes in attitude that may be possible through sensitive and well-designed IEC campaigns. However, this is not sufficient.


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Tawail et al. have distinguished prevention approaches that aim to persuade individuals to undertake behavioural change and those that enable change to occur. 10 The premise underlying the first approach is that individuals will take appropriate decisions about personal behaviour and subsequently act on these decisions. Enabling approaches, on the other hand, focus on the non-individual or social and environmental determinants that facilitate or impede behavioural choice. These approaches must complement persuasive ones so that they become more relevant in the context of the obstacles that women and other vulnerable groups encounter. An enabling environment as well as rigorous and sensitive IEC campaigns need to go hand in hand if a substantial impact is to be made in preventing the spread of HIV

References 1. Treichler, P. (1988) AIDS, homophobia and biomedical discourse: an epidemic of signification: In: D.Crimp (ed.). AIDS: Cultural Analysis, Cultural Activism . Cambridge: MIT Press. 2. Rosenstock, I.M. (1974) Historical origins of the Health Belief Model. Health Education Monographs, 2/4:328–335. 3. Janz, N.K. and M.H.Becker (1984) The health belief model: a decade later. Health Education Quarterly , 11/1: 1–47. 4. Catania, A.J., Kegeles, S.M. and I.J.Coates (1990) Psychosocial predictors of people who fail to return for their HIV test results. AIDS , 4/3:261–262. 5. Fishbein, M. and S.E.Middlestadt (1989) Using the theory of reasoned action as a framework for understanding and changing AIDS related behaviors. In: V.M.Mays, G.W.Albee and S.E.Schneider (eds.), Primary prevention of AIDS: psychological approaches . New Delhi: Sage, pp. 93–110. 6. Prochaska, J.O. and C.C.DiClemente (1984) Stages and processes of self-change in smoking: Toward an imperative model of change. Journal of Consulting and Clinical Psychology , 5:390–395. 7. Strauss, A. and J.Corbin (1990) Basics of Qualitative Research: Grounded Theory Procedures and Techniques . New Delhi: Sage. 8. Waldby, C., Kippax, S. and J.Crawford (1993) Cordon sanitaire: ‘Clean’ and ‘unclean’ women in the AIDS discourse of young heterosexual men. In: P.Aggleton, P.Davies and G.Hart (eds.). AIDS: facing the second decade . London: Falmer Press, pp. 299– 39. 9. Patton, C. (1990). Inventing AIDS . New York/London, Routledge. 10. Tawail, O., Verster, A.M. and K.Reilly (1995) Enabling approaches for HIV/AIDS prevention: Can we modify the environment and minimize the risk? AIDS , 9/12: 1229–1306.

BREAKING THE SILENCE: THE ROLE OF HIV-POSITIVE SPEAKERS IN AIDS EDUCATION AND INFORMATION Susan Paxton Key Centre for Women’s Health University of Melbourne, Australia

Susan Paxton is a social researcher, AIDS activist and training consultant. She conducted her PhD at the Key Centre for Women’s Health, The University of Melbourne, and represented Australia on the Asia Pacific Network of People Living with HIV (APN+) from 1996–99. For APN+, she recently wrote ‘Lifitng the Burden of Secrecy—A Manual for HIV-Positive People Who Want to Speak Out in Public’, which is currently being translated into French, Spanish, and several Asian languages. She is now the APN+ Human Rights Convenor, responsible for a large scale documentation of human rights violations of HIV-positive people in the Asian region, and she carries out short-term consultancies for various international AIDS organisations. Susan can be contacted at: The Key Centre for Women’s Health, University of Melbourne, Parkville, Australia. Email: [email protected]

Abstract This paper describes the impact of people living with HIV, who speak out and publicly disclose their status, on themselves, their communities, and young people in particular. The data for this study is based on interviews with 75 HIVpositive speakers from Africa, Asia, and Australia, and focus group discussions with 117 young Australians. ‘I strongly feel that its only when we have an environment that is ready to accept openly talking about HIV, only then will we be able to really reduce the prevalence and the new HIV transmissions’. (Zimbabwean female)

A global problem Globally, AIDS-related illness is now the fourth leading cause of mortality (after heart disease, stroke, and lower respiratory infections), and the leading cause of death due to infectious disease (World Health Organization, 1999). Infection rates continue to rise each year and it is unknown how large the epidemic will become.


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Unlike other leading causes of mortality, HIV/AIDS mainly affects young adults. Rates of newly acquired HIV infections are highest among those aged 15–24 years, accounting for about half of all new infections. Approximately 7000 young people become infected with HIV every day (UNAIDS, 1999). These young adults, who may live for up to a decade or more after infection, die during what is traditionally considered their most productive years, often leaving behind orphans. AIDS ultimately has its greatest impact on young women. In Sub-Saharan Africa, where the epidemic is well established and infection rates in males and females are approximately equal, women contract HIV at an earlier age than men. In Rakai, Uganda, for example, infections among adolescent women 15–19 years old are 10 times higher than among males of the same age (Konde-Lule et al, 1997). In light of increasing rates of HIV infection, developing affordable youth education and information programmes that are effective in changing young people’s awareness of their at-risk behaviour is a necessary priority.

Potential for change There is no cure for HIV infection, and current medical advances in HIV management remain inaccessible to the majority of the world’s HIV-infected individuals. However, unlike other infectious diseases, such as malaria and diarrhoea, there is the potential to completely arrest HIV infection through attitudinal and behavioural change of individuals. Research indicates that it is more difficult to change sexual behavioural patterns after they have been established, than to delay the onset of first intercourse (Kirby et al, 1991). Uganda, a country with very high HIV prevalence, has shown decreased infection rates in recent years due to widespread information and education programmes; the greatest decrease was seen in young people under 20, where infection rates decreased more than 50% from 1991 to 1997 (Asiimwe-Okiror et al, 1997; Kilian et al, 1999). This implies that, for AIDS preventive education to be most successful, it must primarily target young people. At the beginning of the epidemic large-scale national media campaigns, linking AIDS with thin, sick people, and death, were most prevalent. Such ‘scare’ campaigns do not alter perceptions of risk in adolescents (Zimet et al, 1989), but seem to increase social stigma of people infected with HIV Australia’s ‘Grim Reaper’ campaign in the late 1980s reached persons of a mean age of 32 years. It did not significantly increase the number of young people or people with high-risk behaviours requesting information about HIVantibody testing (Morlet et al, 1998).

Development of AIDS education for youth The most logical setting for AIDS education is within a school-based curriculum. However, the school setting can pose problems in certain cultures: many parents are resistant to young students receiving sex education, assuming it increases sexual activity,

The role of HIV-positive speakers in AIDS education and information

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despite evidence to the contrary (Wellings et al, 1995). Teachers may be untrained to broach sensitive topics; governments may be reluctant to mandate AIDS education for fear of losing popular votes. Over the past decade the question of who delivers AIDS education and information has barely been addressed. There is little evaluation within the literature of the impact of different types of people (classroom teachers, health educators, peers, people living with HIV) delivering AIDS education. Research has indicated that peer educators can be more effective than classroom teachers (Levy et al 1995; DiClemente and Wingood, 1995), but there has been little exploration of the impact of HIV-positive people, either in the classroom or elsewhere. Some teachers are uncomfortable talking with students about sexual relationships (Kuhn et al, 1994). In a British survey (Scott and Thomson, 1992), teachers’ uncertainty

The author talks about HIV/AIDs

and embarrassment was the most pressing issue nominated by 68% of local education authorities in the provision of sex education in schools. An examination of sex curricula in the USA (Klein et al, 1994) found that teachers felt uncomfortable discussing safer sexual practices and that sex curricula information was sparse, sexist, elitist, and only addressed heterosexual students who were not sexually active. Teachers’ discomfort with teaching sex education is partly because of the sociocultural context in which discussion about sex is taboo, particularly if the discussion involves young people who are not sexually active. It is also partly due to a lack of training in dealing with the new challenges that HIV presents. Gingiss and BasenEngquist (1994) point out that most teachers are untrained in this arena, rely on teachercentred instruction, and want additional training.

The role of HIV-positive people in AIDS education In 1994, 42 countries signed the Paris AIDS Summit Declaration, which acknowledged


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the central role of people living with HIV/AIDS (PHAs) in AIDS education and care. If the involvement of PHAs is, in fact, essential to the global response to AIDS, research is needed into the most valuable and effective ways of involving them. Since early in the epidemic, PHAs have spoken out and presented their personal perspective of living with HIV, in an effort to educate the public about the dangers of HIV, and decrease discrimination and stigma towards people living with the virus. The primary aim of the talks is not to give factual information but to describe the realities of living with HIV, and challenge perceptions about who can and cannot become infected. The Philly Lutaaya Initiative in Uganda, for example, was established in 1987 to respond to the epidemic by encouraging those living with HIV to break the silence and give a human face to AIDS. It has been hailed as a successful education strategy, reducing the distance between those with and without the virus (UNICEF, 1995). A study of AIDS information sources in Zimbabwe (Pitts and Jackson, 1993) found that personal portrayals were by far the most powerful vehicles for AIDS information. A high school in South Africa (Kuhn et al, 1994) included a person living with HIV in its teacher training on AIDS. The speaker was reported to have an incisive impact, challenged stereotypes about who is infected, and increased participants’ tolerance of PHAs. Analytical studies in Thailand (Takai et al, 1998) show that tolerant attitudes towards AIDS are positively correlated to people’s history of contact with PHAs. In many countries, the practice of including PHAs is now extensively used in AIDS education training of health workers, of young people in schools, and in other sectors. Despite the increasing numbers of HIV-positive people speaking out around the world today, and sharing their personal perspective of living with HIV, there has been surprisingly little academic research to evaluate their role in the global response to AIDS.

Talks by HIV-positive people Four quantitative control studies have examined the impact of an HIV-positive person giving a talk in a classroom situation, all in North America. Scollay et al (1992) examined the effects of a positive speaker on 25 university students in San Diego, California. Results showed significantly improved attitudes and behavioural intent of students who listened to the talk. Students said the speaker made AIDS more real and believable. The authors contend that the lecturer succeeded in changing behavioural intent by challenging the misconception that PHAs are visually identifiable, and by personalising the pandemic. They conclude that an HIV-positive lecturer is an essential part of any HIV-prevention programme. Stewart and Beazley (1993) evaluated the impact on 84 grade-nine students in Nova Scotia, Canada, of meeting one person with AIDS. Meeting the person did not significantly influence students’ attitudes to PHAs, implying that meeting an HIVpositive person does not always fulfil its assumed goals. The researchers point out that because of the small sample size and the fact that only one speaker met with students, the results cannot be generalized and suggest further research using a number of different PHAs. This study also raises questions about the appropriateness of the speaker to the audience (in this instance, a 39-year-old homosexual man).


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The most logical setting for AIDS education is within a school-based curriculum. However, the school setting can pose problems in certain cultures: many parents are resistant to young students receiving sex education, assuming it increases sexual activity, despite evidence to the contrary (Wellings et al., 1995) In an evaluation of three AIDS-prevention activities, Smith and Katner (1995) studied the relative effects on 734 12th graders in Georgia, USA, of a role-play about HIV/ AIDS, a question-and-answer session, and a talk by a person living with HIV respectively. Five weeks after the interventions the proportion of role-play students who reported changing their sexual behaviour was significantly greater than other groups. Students in the positive speaker’s group perceived their activity to be more worthwhile and interesting and less embarrassing. The authors suggest effectiveness may be largely determined by the skill of the speaker, as well as by the match between the students and the speaker. These studies indicate that PHAs may have a unique impact on young people, but to date the nature of this impact has not been adequately articulated. The only study to examine the effects of incorporating a range of HIV-positive speakers is that by Sunwood et al (1995). The intervention, delivered to 11617th and 8th grade students in Missouri, USA, included meeting experienced HIV-positive speakers. Significant increases in tolerance of PHAs were observed, and these persisted for three months. The authors point out that this intervention is inexpensive, uses available personnel and resources in the community, and provides anonymity for students. This study did not analyse the different effects of different PHAs.

A human rights approach Because AIDS is surrounded by cultural taboos about sex and moral judgements about who gets infected with HIV, an AIDS diagnosis inevitably brings with it feelings of shame, stigma, guilt, loss, and depression. Laryea and Gien (1993), examining the impact of an HIV-positive diagnosis on 22 Canadians via in-depth interviews, found that all respondents repeatedly expressed fear of others discovering their HIV status. All males in the sample had experienced rejection from either their father and/or brother(s). Some respondents lost their jobs or experienced marital breakdown after disclosure. Sixteen of the respondents described some form of self-imposed isolation since diagnosis. The authors argue that the stigma attached to AIDS may adversely affect society’s efforts to control its spread. They believe that the fear of being known as HIV-positive prevents people from having an HIV test, resulting in undiagnosed individuals unknowingly infecting others, They argue that that strategies for controlling HIV infection should include ways to minimise stigma. The late Jonathan Mann (1991) discussed the importance of studying the forces that act to alter societal sexual behaviour patterns, and the link between promoting human rights and protecting public health. He argued that discrimination and prejudice appear to reduce the effectiveness of HIV-prevention programmes, by discouraging those most in need of support and services from participating in preventive programmes. The more silence surrounding HIV, the greater the amount of stigma and


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discrimination directed to PHAs. Consequently most people deny that HIV can affect them and are reluctant to come forward and be tested, and the virus continues to spread. Theoretically, by decreasing the discrimination against PHAs an atmosphere will be created in which people are able to discuss AIDS issues openly, realise their vulnerability to infection, and subsequently take precautions against possible infection.

Unanswered questions Research into the effects of public disclosure of HIV status is inconclusive. What is actually achieved by having a person living with HIV speak out? If PHAs are influential in changing attitudes, what aspects of their talks are significant? These questions remain unanswered. As decreased stigma is implied from successive disclosures, public speaking may also have a positive impact on the discloser. Research into the role of PHAs in AIDS education and information needs to evaluate not only the benefits to the audience, but also the benefits and/or disadvantages of disclosure to the speaker, and the conditions that facilitate disclosure.

A study on PHAs speaking out publicly I am currently carrying out the first comprehensive attempt to evaluate the role of HIVpositive speakers in AIDS education. The aim is to determine the impact of public HIVdisclosure on speakers’ lives, whether HIV-positive speakers can sensitively inform youth by influencing their attitudes to AIDS and perceptions of their own risk of HIV infection. The study has two major aspects: the impact of speaking out on HIV-positive people in a range of countries, and the impact of speakers’ talks on young Australian audiences. All data were collected between May 1997 and January 1999. The HIV-positive speakers In-depth interviews were conducted with 75 HIV-positive speakers (43 women and 32 men): 31 were from 8 countries in Africa, 29 from 10 countries in Asia and 15 from two countries in the Pacific. The rationale behind the choice of regions was to explore differences in the experiences of HIV-positive speakers from different cultures and countries with different epidemics and varying levels of public education about HIV Africa has a well-established, large-scale, heterosexual epidemic and has many HIVpositive speakers. The Asia-Pacific region has a rapidly emerging epidemic, and relatively few people speaking out; Australia established early education campaigns in response to the epidemic, and the population hardest hit by AIDS remains homosexual men. The speakers were recruited during attendance at international AIDS fora or via peer support/advocacy groups. Getting them to agree to interviews was greatly facilitated by


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the fact that I am also a woman living with HIV who does public speaking. This engendered an immediate level of trust in the interviewees. My HIV-status appeared to be a far more important factor to interviewees than my racial or cultural background. They came from a broad range of backgrounds. Some did not finish primary education while others had university degrees. Their range of occupations was extremely diverse and included: student, teacher, nurse, artist, peasant farmer, social worker, sex worker, army officer, sailor, meteorologist, community worker, builder, chef. Most interviewees were parents, with 1–4 children. One Ugandan female had the sole care of her 6 siblings. One interviewee was a child with their age range varying from 11–52 years. The length of time that they had known their HIV diagnosis when I interviewed them ranged from 6 months to 14 years (mean 6.1 years). Many of theThai women had undergone mandatory HIV-testing 4–6 years previously and had been forced to come out because of rumours in their community. Disclosing their HIV status was, at first, confronting for almost all interviewees. Most needed time to come to terms with their status before they felt safe and secure enough to talk about living with HIV to a group of people they had not met before. They needed to move beyond denial, and accept their situation. The mean time elapsed between diagnosis and speaking out was 2.6 years (women 2 years and men 3.4 years); the range was 0–12 years. Many speakers are justifiably afraid of the possible consequences of public disclosure in the media. For most women, their prime concern is fear of their child(ren) being teased or caregivers or teachers treating them differently. The experience of a South African speaker, Gugu Dlamini, who was attacked and killed by neighbours who were angry at her media disclosure on World AIDS Day 1998, will forever provide a solemn warning to potential speakers. Many speakers carry out public education without ever disclosing their status to people in their neighbourhood. They safeguard their identity by carefully selecting small ‘safe’ groups to whom they speak or only talking in areas away from their home. In The Philippines, speakers take on a pseudonym to protect their confidentiality. Nevertheless, the majority of interviewees who had gone public in the media were parents; in most countries where there are large numbers of positive people open about their status, many more women speak out than men. Perhaps the one common characteristic of the HIV-positive speakers was that they are all strong people who chose to respond to their life situation, rather than become victims to it. They are people who, in the face of adversity, decided to step out to educate others. Few people diagnosed with HIV take this brave step. The student audience The student sample comprised 117 Australian secondary school students in Melbourne: 70 female and 47 male adolescents. The location was chosen for convenience, as I am a member of the two Melbourne-based Positive Speakers’ Bureaus. All teachers who booked talks through either Bureau during the data collection period were approached to take part in the study. Unless the lead-up time was too short, all schools agreed to participate. The sample included 10 government and private schools; single-sex and mixed schools; and schools from a wide range of Melbourne suburbs. Of


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the 13 talks followed in this aspect of the study, a male PHA delivered 5 talks and a female PHA 6 talks; 2 talks were delivered by 2 speakers. In order to determine the young people’s responses to the HIV-positive speakers, 16 focus-group discussions were conducted, immediately following a talk by one or more HIV-positive speakers, or three months later. (Teachers in 3 schools booked 2 separate talks for different students over the data collection period, and in 3 instances 2 focus groups were conducted with different student groups after the same talk.)

The speakers’ experiences I did not ask the speakers how they contracted HIV but did ask if they disclosed this information to audiences. Many interviewees brought up the subject without prompting. The motivation of positive speakers Positive people who speak out publicly are usually highly motivated, either to stop discrimination against HIV-positive people or to prevent further HIV infections and save lives, or both. Many speakers were propelled by a sense of urgency. They felt compelled to do this work before they die. Fighting discrimination: real or perceived discrimination was a very strong motivator for many people to speak out and put a face to AIDS. This was the sole motivating force for all Thai interviewees. Some speakers encountered a lot of discrimination before they came out in public and wanted to change the situation and help to eradicate AIDS-related stigma. They saw coming out in public as a way to educate their communities. I wanted to show people who were the people with HIV. I was thrown out and not allowed to be at home. So I really wanted society to understand people with HIV in order that my family and my village might understand. (Thai woman) I hate living with the stigma that goes along with AIDS. I just hate it. And I figure that the more that people like me come out and talk to people about it, society’s assumptions about who is infected are going to have to change, and HIV and AIDS isn’t going to be such a dirty word any more…In speaking out about being HIV-positive I change that stigma. (Guam woman) Other speakers said PHAs were often used in a tokenistic way by some organisations, but were not involved in any of the decision making, or in designing and implementing policies and programmes. They realised that the only way to change this was to speak out as PHAs. Some interviewees spoke out to challenge the attitude that HIV only affects poor, uneducated peasants, or the sexually promiscuous. Speakers from Uganda, Zimbabwe and Thailand expressed the need for people to realise that the elite in society are not invulnerable to HIV Many said that people with higher education or of a higher social class think that HIV will not affect them. They do not want to accept HIV and instead ignore its existence. Several speakers from Africa, where life expectancy has significantly dropped due to AIDS, spoke of the need for political leaders and


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government officials to come out as HIV-positive. ‘People are really dying. Senior civil servants are dying, but nobody comes out…Every senior government official [who dies], they say he has died of a long illness; he has died of diabetes; he has died of heart failure. When a peasant dies they are quick to say he died of AIDS. So, I want to make this clear, to demystify this thing, to let everybody know that the permanent secretary dies of AIDS, the minister dies of AIDS’. (Ugandan man) Stopping new infections: the majority of speakers were also impelled by the desire not to see any other people in the same situation in which they had found themselves. ‘I really felt that everyone was shocked that I was diagnosed, and I didn’t think it could happen to me, and I know there’s a million people out there that are in the same boat. And hopefully, by my standing up in front of them and saying, ‘Look, it happened to me’, it might help them think twice’. (Australian woman) Many speakers saw it as their mission to provide people with accurate information about AIDS. Some said that before they were diagnosed, they knew absolutely nothing about AIDS. Several speakers from various regions talked of their hope that, by sharing their story, particularly of their previously perceived invulnerability to infection, they can save at least one life. This was a strong driving force. Some said they could not sit back and watch people die, once they realised they were infected. ‘If I can stop one of the people I talk to from getting the virus I’ve done everything I ever have to do’. (Australian man) The majority of women in the study, including several widows, contracted HIV from their spouses. Some of these women wanted to warn others of the possibility that they could become infected in marriage. These women firmly believed that they had a responsibility to educate other women. ‘I got married when I was 18 years old. I had three children with my husband… I was so faithful to my husband, and to be told that I have HIV was something which was very painful And I thought of how many women in these marriages die of things that they don’t know…These women think they are not at risk of HIV because they are married. So that’s what really made me talk about it…A person living with HIV is supposed to be an educator. We are the light. Whether [or not] they want to run away from us, we just have to keep on shining’. (Zambian woman) Psychological support for speakers Most, but not all, HIV-positive speakers needed strong personal support before they could speak out in public. For the vast majority of speakers, this support came from peers or family, and in many instances, both.


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Many speakers said talking to positive peers was inspiring and gave them encouragement and hope. This peer support is not only important for people newly diagnosed with HIV Other HIV-positive people were the most often-cited avenue of emotional support for speakers to carry on with their work. Parents, partners, children, or other relatives played an important role in the lives of most speakers, whether the family was aware of the speaker’s HIV status or not. Some speakers had told all family members, while others had disclosed to only a select few, such as a sibling or an aunt. In practically all situations, few negative repercussions came about as a consequence of telling family members, and in most instances the ultimate outcome was closer and more supportive family relationships. A majority of speakers from Asia and Australia (but not Africa) said their family was one of their greatest supports. For a few speakers counselling was their only form of support. Many speakers said that they found counselling invaluable in helping them to disclose their status to their family and/or friends. Counselling also helped several interviewees to reach the decision to speak out, and/or provided an opportunity for speakers to debrief after a talk. Friends and workers in non-governmental organizations were occasionally cited as important avenues for support. A few speakers also said their religion is a great support to them, although none relied solely on this. Almost all speakers said they needed some way of discussing their feelings with another sympathetic, supportive, trustworthy person in their life; somebody who can listen and, if asked, give feedback. Practical support for speakers Although many people in government and non-governmental AIDS organizations support positive activists, many interviewees expressed frustration with the lack of support. Burnout was a real issue for many interviewees, particularly if they were the only ones doing such advocacy work in their region. The vast majority of people who speak out publicly do not receive training to do so. Most say they were ‘thrown in at the deep end’ and only improved their skills through the repeated experience of doing talk after talk. ‘They would say come and give a testimonial, and I looked for the meaning of the word in the dictionary, and it’s confessing your sins, and I felt no, that’s not what I’m doing…Let’s have more of a dialogue, rather than going there and saying a testimonial… I didn’t sin, and I’m not here to confess and ask for forgiveness from anybody. I’m here to try and educate people; to try and make people understand’. (Zimbabwean woman) The lack of training has sometimes resulted in people feeling overwhelmed, rather than inspired, by their role in the community response to AIDS. ‘It’s difficult when speaking to certain groups of people. I’d be going to


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managing directors. I’d be speaking to them but I didn’t know where to begin. I would fidget. I wish I had training in public speaking. I would appreciate that’. (Zambian man) Some speakers desired training on the practical side of speaking. Others wanted general AIDS education and continual updates on current developments in HIV, so as to be able to answer the many questions that audience members pose. Several interviewees pointed out that it was important to provide positive speakers with information resources because they carry out health promotion and may prevent people from being infected. Some said they have spent years as public educators without being acknowledged for their work, or receiving any training. A few said that at times they had felt ‘used’ in their roles as educators. ‘You can find somebody from some organization who comes and tells you ‘We want you to do this, and this’, or come out on a video. You aren’t given anything because you don’t know what you should get out of that. So they use you, then dump you. When you are so sick, they don’t attend to you’. (Kenyan woman) ‘A lot of exploitation is happening. There are a lot of fly-by night NGOs talking to PWA [PHAs], manipulating, using their names, their pictures, asking for funds, international and local funding agencies, and it really hurts me’. (Filipino man) A few speakers discussed the need to go beyond public speaking skills, in order to develop sustainable activism. They recognised the need for capacity building in organisational development, project planning and management, advocacy and lobbying, and income generation. Challenging the myths about people living with HIV/ AIDS Speakers said that the first and most common response from audiences after a talk was disbelief. Many speakers from all countries said people often find it difficult to accept that they are infected with HIV ‘I need a card with a big plus on it. They really don’t believe me because I look healthy’. (Guam woman) Some speakers, particularly Africans, were frequently accused of being paid vast sums, by the government or the World Bank, to say they are HIV-positive. Other speakers said that some people think they are mad to publicly disclose about such a shameful disease, and assume they are not ‘decent’ people; that they are sexually promiscuous or drug users. Speakers’ morality was often questioned. ‘The first thing that comes to people’s minds is ‘She might have a bad past. She smokes. No wonder she got HIV. That’s the kind of girl she is. She’s not a good girl’. That is negative, but also, that’s where the challenge lies’. (Indonesian woman)


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Negative consequences of speaking out The majority of people interviewed for the study faced some social stigma and discrimination as a result of their public disclosure, but for most the level was mild and confined to avoidance by family, friends and/or neighbours. ‘Some people who know you’re HIV, when you speak publicly; they look at you like that. But I say, ‘Who cares?’ I haven’t experienced drastic words from people’. (Filipino man) Women in the sample were more likely to experience discrimination than men (66% compared with 43%). Relatively few Australians (13%) experienced discrimination as a result of public disclosure in comparison with Asians (57%) and Africans (76%). Of the African speakers who experienced no discrimination, all but one were Ugandan. Most people experience AIDS-related discrimination as a result of going public in the media. Approximately half of the respondents had gone public in the media. Of those who had not, only 8 people experienced discrimination as a result of doing public education. The majority of these were women doing village education in northern Thailand, and their status was well known locally. Almost half of the interviewees did not experience discrimination consequent to publicly disclosing their status. Of these, only the Japanese, Vietnamese and 7 Australians had been public in the media. Some interviewees said that they had not faced any discrimination because they were not living in rented accommodation and were working in a sympathetic, AIDS-related organization. Their security was in place before they decided to speak out openly about their status, so they did not risk being evicted or losing their job. A few speakers said that, in retrospect, the fear of the possible consequences of their HIV status being exposed was much greater than was warranted, given the welcome response they have had. Many who expected rejection from family, friends and the community received acceptance and a greater understanding of their situation. Family: in a few instances, people have faced hostility from their family as a direct result of their decision to go public about living with HIV. One woman was physically abused by her husband because she did not inform him she was going to do so. In the majority of instances where the family rejected the interviewees, either because of their HIV status itself or because of their decision to go public, the family became more sympathetic and supportive over time. This was particularly the case after they saw the beneficial consequences of the speaker’s work, either on their personal health or within the community. Friends: many speakers said they had lost friends because they went public. Some friends stopped speaking to them or inviting them to social functions. Others ceased having any association with them. ‘My friends rejected me. Fifteen of them who rejected me tested positive within three months and I was the one who had to counsel them’. (South African woman)


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Community: some speakers, but by no means the majority, faced mild to considerable stigma and derision from their communities as a result of going public. In some instances neighbours constantly stared at them; in other cases the speaker was completely shunned. Some were publicly vilified. Others were asked to leave public places. Parents also witnessed community rejection of their children, with a few having been asked or forced to remove their child(ren) from the local school. Some speakers were accused of murdering people. Several speakers said the community response, based on ignorance and fear, is a challenge and gives them the determination to increase people’s level of awareness about AIDS. For most people in all regions, the discrimination from the community lessened over time as people learned to accept PHAs and education about AIDS became more available. ‘People were afraid of having anything to do with me. They didn’t want to be close to me. They thought they were going to catch HIV really easily. I was not accepted for work. I was spoken to really badly when I went to places…I’ve passed through that discrimination now. It does get better. Where I am now, that doesn’t happen any more. It was much better to be open and speak out’. (Thai woman) Health sector: most discriminatory treatment experienced by PHAs is in the health sector, regardless of whether the person is publicly open about their status or not. This was highlighted in recent consultations carried out by the Asia Pacific Network of People Living with HIV/AIDS to develop in-country protocols to document AIDS-related human rights violations in Asia (Paxton et al, 1999). These consultations illuminated some of the issues faced by HIV-positive people when they use health services, including refusal of treatment and care, appalling conditions in AIDS wards, and breaches of confidentiality by health staff. It does not appear that people who speak out in public and disclose their status receive any better or worse treatment in the health care system than people who are not open about it. They do receive worse treatment than people who are untested. Workplace: many HIV-positive people in many countries have lost their livelihood because they have gone public about living with HIV Discrimination in the workplace was common in all countries. ‘I’m a food and beverages manager by profession, but I don’t think there’s anybody who would like to employ me. Nobody’. (Botswanan woman) Despite the various negative consequences of speaking out, almost all the positive speakers interviewed have no regrets about going public. ‘There’s nothing that I’ve ever regretted [about disclosing]…I am proud that I can come out and do what many people cannot do. I can come in the open and say ‘I am HIV-positive’ without hesitating, and with the conviction that it’s not


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wrong for me to be positive. Many people don’t have that conviction. They think that it is…something bad. For me it’s an accident and that’s the way I took it’. (Kenyan man) Benefits to the speaker Often an HIV-positive diagnosis shatters a person’s self-esteem. Most interviewees faced huge issues of loss, disempowerment, isolation, and social ostracism. Sometimes the loss was tangible, such as contact with family and friends, or failing health. Usually people became sad and depressed after their diagnosis, and saw no hope or future. Many isolated themselves from society, believing nobody would want to know them. Some interviewees stopped socializing completely, because of their fear that others would discover their status. This became very stressful psychologically, and had a negative impact on their health. Many interviewees said that when they were newly diagnosed they believed they were going to die soon. Some said they had hated or blamed themselves. Some believed they could no longer be productive members of society. They felt useless, worthless. Some felt shame and embarrassment. Some said that until they began to speak openly about living with HIV, they led a stressful ‘double life’, in which they hid their status from most people. ‘I think the most difficulty about living with HIV is putting on a mask and trying to have a split personality’. (Singaporean man) Participation in AIDS education has enriched the lives of all the speakers interviewed, and all but one say that the benefits of going public far outweigh any disadvantages they have faced. This theme was the strongest from all from the interviews, and was common across speakers in all three regions. Feeling worthwhile and valued: many speakers said they get so much back from their audiences, and some said that the audience response to their talks is their greatest reward. Speakers felt they were doing something worthwhile. They were no longer seen merely as recipients of services, but were recognized for the valuable contribution they make to their community. ‘Basically I feel that I am useful. I can do something. I can warn other people. I am doing something right’. (Vietnamese man) Helping others has been very important in instilling self-respect and increasing speakers’ self-esteem. They take back some power and control over their lives. This re-establishes personal dignity and pride and rebuilds HIV-positive people’s self-confidence. Many speakers said that self-esteem was one of the most important issues for PHAs and greatly contributes to their mental and emotional outlook. Some said that openly sharing their diagnosis was a cathartic experience that helped to clarify issues and put them into perspective. This was psychologically beneficial because it helped the speakers to accept their situation quicker. A couple of speakers described the process as healing, leading to a less-stressed state of mind which, in turn, led to improvements in their physical health.


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Many speakers said they were much healthier since they became open about their status. Lifting the burden of secrecy: coming out openly and discussing one’s status was inevitably rewarded by feelings of relief and freedom. Speakers repeatedly described it as feeling they had released a great pressure. Many said they had lifted the burden of secrecy that had weighed heavily on them since their diagnosis. The youngest speaker, an 11-year-old, articulately described the unwelcome feelings in having to keep a secret. ‘I felt guilty. I had to make up excuses for why my parents died …I kept it a secret and I wanted to let it out…I [also] had to go for blood tests every two months and that was really hard to make excuses…[After I spoke at my school] I was happy that it was over with. I was relieved. I had got it done and it turned out all right. I didn’t have to worry about people being scared any more…I didn’t have to keep it in forever. If I hadn’t told, it would probably have been terrible. If you keep on keeping it in, you feel stressed. You can’t stand it’. (Australian male) Speakers of all ages, and across all continents echoed this feeling of relief. It was particularly strong among speakers who have gone public in the media, and from speakers from Africa. Releasing the tension of no longer having to hide their status was perceived to have a positive impact on the speaker’s health, by making them calmer and more relaxed within themselves. ‘I have total freedom. I don’t have to worry any more about who knows and who doesn’t know. I think it’s done my immune system good…I think suppressing any thing is such an effort. Keeping a secret is such an effort. It’s so stressful. Trying to remember who knows and who doesn’t…I feel now, if there is somebody who still wants to know me and to talk to me, then they know me and talk to me as I really am. There’s nothing hidden’. (Zimbabwean woman) ‘I feel better because of my health. I feel I have opened the door, because everything was tight inside me. When I spoke out, I feel I opened the door on my health. Everything is helped. Life is better from the day that I was open about my status’. (Tanzanian man) The overriding theme that emerges from positive speakers from different regions and vastly dissimilar cultures is their commonality of experience. Speakers reap enormous benefits from public disclosure, and all but one said that these benefits far outweigh any negative consequences of AIDS-related stigma. Benefits to the community Speakers believe they have been catalysts for the rapid spread of appropriate AIDS information in their communities, by making their communities aware of who can become infected with HIV In countries with established epidemics and a relatively large pool of people speaking out in public (Australia, Kenya, Uganda, Thailand) speakers said they can see the impact of their work over time, that discrimination has been reduced and


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an atmosphere of greater acceptance of and support for PHAs has been created. Some interviewees perceived that people who have put a face to HIV have had a tremendous impact on how positive people are treated by families, the community and the media. ‘There have been great efforts by people such as me to improve the acceptance of people living with AIDS in northern Thailand. Four or five years ago the situation was very, very bad regarding acceptance and misunderstanding, and since that time efforts by people like me have made a big difference’. (Thai woman) Others said they can see that their advocacy work has led to greater involvement of people living with AIDS in the response to the epidemic. ‘I believe very strongly that if I had kept my HIV status secret, this wouldn’t have happened. Now we are not involved in tokenism as it was before…Now we are also involved in the planning and implementation of programmes; in making things move. To me those are great advantages’. (Ugandan woman) Greater visibility of positive people has also inspired other people living with the virus and helped them to develop a more optimistic outlook. They see strong, healthy people standing before them and in some cases have done so for several years. Instead of giving up hope and waiting to die, some begin to see that it is possible to build a new life after their diagnosis. This can be a lifeline for those newly diagnosed and for PHAs ‘in hiding’.

What young people say The focus-group discussions with young Australians provided rich detail of the way that HIV-positive speakers may have an impact on their audience. (Quotations from students are in Italics.) Students consistently expressed their surprise at the appearance of the speakers, and the fact that you couldn’t tell that they had HIV Many expected the speaker to be thin, pale, and look obviously ill. ‘I thought I’d be able to judge a person with HIV I thought they’d look different from everyone else’. Students realized that you cannot stereotype a person who is vulnerable to HIV infection and that PHAs are ‘normal’, ‘ordinary’ people; not one group of people, with one set of behaviours. They saw that the speaker could easily be a person they might know, such as a neighbour. This challenged their perceptions. Some said the speaker made them realise that HIV infection could happen to anybody ‘who is not careful’. ‘She’s just like a normal person’. ‘I wasn’t expecting a married woman’.


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Some students said that because AIDS is synonymous with death, it makes people frightened, and therefore they do not want to talk about it. ‘It seems the worst thing in reality that you could get, if it’s such a death sentence. It’s such a drastic thing to happen because the stigma attached is so incredibly bad. You think it’s too far out of the realms of what you could become’. Many students expressed surprise that people could remain healthy for years after contracting HIV Many said they had thought that once a person was infected they got sick and died quickly. ‘I was expecting them, as soon as they get the disease, to stop and give up. They were so strong’. Some young people said they had learned not to be so critical and judgmental of HIVpositive people as a result of the talk. ‘Before I used to be a bit worried about being around them but now it feels better’. Not all students’ attitudes to HIV-positive speakers were altered after the talk. A minority of students said the talk did not really make much of an impression on them. Males were more resistant to change, particularly after listening to a male speaker.

The ‘live’ experience Students said that having a speaker in front of them, talking about living with HIV felt more real than other forms of AIDS education. It caught their attention because they were able to interact and empathise with the speaker. ‘If we didn’t have the positive speaker, we’d be talking about THEM. Like were us, and were talking about them. But when she came in, it was like US’. ‘It’s coming from their mouths, someone who’s really, really, really experienced it, not just some author or teacher or someone writing it on a white board or a textbook. It was real people telling the real stuff, so it had more effect and people took it in more’. Meeting a person living with HIV brings home the realities of AIDS. Young people can relate easily to a human being who is standing in front of them, openly sharing their thoughts and feelings about their personal experiences. Some students said they identified personally with the speaker, particularly when there was common ground between the speaker and the students, such as similar educational backgrounds. Having a live speaker allowed the audience to ask questions and check on information they were given. This was seen as important, to validate what the person said and clarify


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points of interest. The young people also liked the anonymity of the visiting speaker. It gave them the opportunity to discuss issues more openly than they could in other spheres in their life, and in a non-judgemental atmosphere. Students were asked whether they thought a video of a PHA would have been as effective as the live speaker. All students said that it would not have had the same impact. Some said the screen is a barrier to communication. Others said that videos become boring, and that it is easy to lose attention and get distracted. Many students question the authenticity of what they see on the screen. ‘I don’t believe in videos. They could be lying’. ‘It’s definitely different when someone’s in front of you, than what you hear on the TV. You know they’re not reading off a sheet. It’s pretty obvious that he’s not really acting’. Although many students were comfortable talking to their teachers about sex, the majority said they would feel awkward doing so. Some of the reasons given for this were that teachers: • may question why you asked particular questions • may discuss the issues raised with one’s parents • may give less favourable grades when marking papers • frequently repeat the same messages • do not have sufficient knowledge about or experience of the subject matter • are inhibited about discussing sensitive issues • do not encourage questions • are behind the times in their outlook and their perceptions of young people’s needs • have power over students • may breach students’ confidentiality in the staffroom ‘It’s hard with our teachers…You have to know them for the next however many years, but with the positive speaker, you can ask anything. You’re not really worried about what they’ll think or judge. You don’t have to see them again. [The speaker] wasn’t going to leave and then go and write your history report. That’s a major difference’. Many students said the HIV-positive person knows what it is like to live with an HIV diagnosis and is able to portray what happens on a physical and emotional level, at times very intimately. This made the presentation much more personal. ‘It’s better to hear from someone who’s actually positive because they know more than anybody else’. ‘It’s more believable when it comes from someone who actually has it’.


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Students’ attitudes to HIV prevention Of the speakers referred to in the focus group discussions, one contracted HIV from a blood transfusion, and the remainder contracted it through sex. No speakers who contracted HIV through sharing injecting equipment gave talks to Melbourne school students during the study period. Therefore, no information was collected on the impact of positive speakers’ talks on attitudes to injecting drug users. Many students said they were already knowledgeable about the concept of using condoms during casual sexual relations but recognized that negotiating condom use might be difficult. ‘We’ve always known it’s the right thing to do, but…it can still be hard to say that you want to [have safer sex]. People worry about hurting people’s feelings, or you feel a bit stupid asking’. Although attitudes to condoms were very favourable among these young people, often condom use was encouraged to prevent teenage pregnancy. Many said school-based sex education provides messages such as ‘You must use condoms’, without expanding on other possible consequences of contracting sexually-transmitted diseases. ‘[Teachers] talk about pregnancy and stuff like that. They don’t concentrate on using a condom because you can get diseases’. Some said their education was too technical and focused on factual information, whereas they were more interested in the psychological aspects of sex such as how to negotiate safer sex. It seems that AIDS curricula in some schools does not satisfy young people’s thirst for such information and is not in touch with the realities of students’ lives. ‘They say, ‘Be careful’, but they don’t elaborate on how’. ‘They think Catholic kids don’t do this; they don’t do that. A lot of kids have sex in Catholic schools and I don’t think the schools are facing up to it’. Listening to the speaker forced many students to take a harder and more informed look at their responsibilities in preventing themselves from becoming infected. The talk often reinforced messages of safer sexual behaviour that they had already received and enabled them to see the possible consequence of not using condoms. ‘It pushes you to use it more, the reality that if you don’t, that’s what you’re going to end up having’. We have to accept it now, because it’s around. We have to accept it’. ‘It seems to make it more of a reality check. Like it was not really my responsibility, but it now is’. ‘It doesn’t really hit home until you actually see someone who has it’. Some said that the talk made them more concerned about the HIV-status of potential


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partners. They were shocked that people had contracted HIV while in a committed relationship. ‘Wow, who do you trust?’ ‘Life’s not as innocent as it was’. ‘You’ve really got to talk these things over with your partner, make sure that everything’s clear between you, so you don’t have that chance that it’s going to happen’.

People living with HIV/AIDS: key providers of information and education ‘Since I have this problem, I am the key. I am the key to open the way out’. (Ugandan woman) AIDS is shrouded in secrecy and silence. People do not like to talk about HIV They are afraid of AIDS and convince themselves that HIV only affects particular groups in society, ‘other’ people. Because moral blame is placed on HIV-positive people, communities deny that HIV is there, tapping at the door. The power of HIV-positive people speaking out is in lifting the burden of secrecy, breaking the silence, and addressing AIDS-related stigma. HIV-positive speakers are best placed to address preconceived attitudes and prejudices towards people who contract HIV Unlike the early ‘scare’ campaigns, they confront societal myths and misconceptions about who is vulnerable to HIV infection. PHAs provide people with an opportunity to reposition their beliefs in relationship to HIV and AIDS. As community norms are challenged, people change their perceptions and take more responsibility for prevention. The responses of the young people in Australia echo audience responses reported by HIV-positive speakers in many countries. HIV-positive speakers challenge the stereotypes regarding PHAs and force people to reassess their beliefs about people living with HIV Because these speakers show society that people living with HIV can lead productive lives for many years, these messages about ‘positive living’ can also be inspirational to other PHAs. People speaking out in public and disclosing their HIV-status is an AIDS-education strategy which challenges traditional power-based relationships, breaks down discrimination towards PHAs and facilitates the establishment of new norms of behaviour. Highly motivated and articulate HIV-positive speakers play an essential role in AIDS education. Including multiple HIV-positive speakers in AIDS education of young people may be the most powerful and effective intervention to create attitudes that will protect them from contracting HIV Incorporating a range of HIV-positive speakers in medical education training may also be an effective way to counter AIDS-related discrimination in the health sector. Effective AIDS education includes both preventive education, and treatment and support of people living with HIV Unless an atmosphere is created in which HIV-positive people are treated with dignity and respect, all prevention efforts will be thwarted.


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A reflection of government commitment to AIDS education is the number of people who feel safe and supported enough to come out in public. Governmental and nongovernmental agencies have a responsibility to acknowledge and tackle the issue of effective AIDS education and to provide strong, sustainable support, a secure environment, and adequate, appropriate training to HIV-positive people to equip them with the skills and confidence to carry out their work.

Bibliography Acceptability & Effectiveness of the Philly Lutaaya Initiative, People with HIV/AIDS Communication Strategy . UNICEF 1995. Asiimwe-Okiror G., Opio A.A., Musinguzi J., Madraa E., Tembo G. and M.Carael. Changes in Sexual Behaviour and Decline in HIV Infection among Young Pregnant Women in Urban Uganda. AIDS 1997; 11:1757–64. DiClemente R. and G.Wingood. A Randomized Controlled Trial of an HIV Sexual RiskReduction Intervention for Young African-American Women. JAMA 1995; 274 (16):1271–7. Gingiss P. and K.Basen-Engquist. HIV Education Practices and Training Needs of Middles School and High School Teachers. J School Health 1994; 64(7):290–5. Kirby D., Earth R., Leland N. and J.Fetro. Reducing the Risk: Impact of a New Curriculum on Sexual Risk-Taking. Fam Plan Perspect 1991; 23(6):253–63. Klein N., Goodson, Serrins D., Edmundson E. and A. Evans. Evaluation of Sex Education Curricula: Measuring Up to the SIECUS Guidelines. Journal of School Health 1994; 64(8):328–33. Kilian A.H., Gregson S., Ndyanabangi B., Walusaga K., Kipp W., Sahlmuller G., Garnett G.P., Asiimwe-Okiror G., Kabagambe G., Weis P. and F.von Sonnenburg. Reductions in Risk Behaviour Provide the Most Consistent Explanation for Declining HIV-1 Prevalence in Uganda. AIDS 1999; 13(3):391–8. Konde-Lule J.K., Wawer M.J., Sewankambo N.K., Serwadda D., Kelly R., Li C., Gray R.H. and D. Kigongo. Adolescents, Sexual Behaviour and HIV-1 in Rural Rakai. AIDS 1997; 11(6):791–9. Kuhn L., Steinberg M. and C.Mathews. Participation of the School Community in AIDS Education: An Evaluation of a High School Programme in South Africa. AIDS Care 1994; 6(2):161–71. Laryea M. and G.Gien. The Impact of HIV-Positive Diagnosis on the Individual, Part 1: Stigma, Rejection and Loneliness. Clin. Nurs. Res . 1993; 2(3):245–263. Levy S., Perhats C., Weeks K., Handler A., Zhu C. and B. Flay. Impact of a SchoolBased AIDS Prevention Programme on Risk and Protective Behavior for Newly Sexually Active Students. Journal of School Health 1995; 65(4):145–52. Mann J.Global AIDS: Critical Issues for Prevention in the 1990s. Int J Health Serv 1991; 21(3):553–59. Paxton S., Diaz J., Junga R., Pillai A., White B. and J. Thomas. APN+ Human Rights Initiative: Participatory Research into AIDS-related Human Rights Violations in 10 Asian Countries. Abs 759, Fifth International Congress on AIDS in Asia and the Pacific, Malaysia, October 1999. Pitts M. and H.Jackson. No Joking Matter: Formal Informal Sources of Information about AIDS in Zimbabwe. AIDS Educ. Prev . 1993, 5(3):212–19.


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Scollay P., Doucett M., Perry M. and B.Winterbottom. AIDS Education of College Students: The Effect of an HIV-Positive Lecturer. AIDS Educ. Prev . 1992; 4(2): 160– 71. Scott L. and R.Thomson. School Sex Education: More a Patchwork than a Pattern. Health Education Journal 1992; 51(3):132–35. Smith M. and H.Katner. Quasi-Experimental Evaluation of Three AIDS Prevention Activities for Maintaining Knowledge, Improving Attitudes, and Changing Risk Behaviors of High School Seniors. AIDS Educ. Prev . 1995; 7(5):391–402. Stewart S. and R.Beazley. Meeting a Person with AIDS in the Classroom: An Evaluation. Canadian Journal of Public Health 1993; 84(4):265–7. Sunwood J, Brenman A, Escobedo J, Philpott T, Allman K, Mueller J, Jaeger J, Brown L, Cole F. School-Based AIDS Education for Adolescents. J Adol Health 1995; 16 (4):309–15. Takai A., Wonghomthong S., Akabayashi A., Kai I., Ohi G. and K.Naka. Correlation between History of Contact with People Living with HIV/AIDS (PWAs) and Tolerant Attitudes toward HIV/AIDS and PWAs in Rural Thailand. Int. J. STD & AIDS 1998; 9 (8):482–4. UNAIDS 1999. AIDS epidemic update: December 1999 Wellings K., Wadsworth J., Johnson A., Field J., Whitaker L. and B.Field. Provision of Sex Education and Early Sexual Experience: The Relation Examined . BMJ 1995; 311:417–20. Zimet G., Anglin T., Lazebnik R., Bunch D., Williams P. and D.Krowchuk. Adolescents’ Knowledge and Beliefs about AIDS: Did the Government Brochure Help? AJDC 1989; 143:518.

COPYRIGHT RESTRICTIONS AND NONENGLISH AIDS INFORMATION Chris W.Green AIDS Activist Jakarta, Indonesia

Chris W.Green is a retired businessman and AIDS activist based in Jakarta, Indonesia. He publishes two twice-monthly newsletters on AIDS in Indonesian, as well as a monthly on drug-related matters. He is also a member of the Indonesian AIDS NGO Forum, the Indonesian drugs NGO Forum, and of the group which coordinates the International AIDS Candlelight Memorial (an annual commemoration to honour those who have died of HIV/AIDS and support those living with the disease) throughout Indonesia. Chris would welcome questions or comments on E-mail: [email protected] or by Tel.: +62–21–8463029 or Fax: +62–21–8461247.

Abstract While many AIDS activists in the West take information for granted, those in developing countries are often poorly supported because of limited language skills. Lack of information can inhibit advocacy and put people with AIDS and others at risk. Identifying, translating and disseminating news on AIDS in local languages can be a significant challenge, and this is exacerbated by copyright restrictions on information in English. Even many UN publications are covered by over-tight copyright restrictions. Some non-profit organizations encourage translation of their material with ‘copyleft’ statements which allow free noncommercial dissemination. However, commercial news providers’ copyright policies present obstacles which small organizations are poorly placed to address. One solution is for an international non-governmental organization to identify health-related items of interest to the developing world, and negotiate blanket dispensation from the commercial providers to distribute these freely only for translation and dissemination in developing country languages.

Introduction ‘A drug is a chemical plus information.’ I recently ran into this pharmacist’s axiom. How well it describes the paradox we currently face as we read about activism to improve


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access to drugs for people living with HIV/ AIDS (PHAs) in the developing world. Not only are many of the drugs covered by restrictive patents which act as a barrier to access among the poor of the world (i.e. most people with AIDS). But information is also ‘protected’ by copyright, which has a similar effect on the second, and equally essential, part of this duo.

Background Most PHAs in Europe and North America are now enjoying a new lease of life, thanks to the new antiretroviral drugs. These drugs attack HIV, the retrovirus that causes AIDS, at various stages in its life cycle. Introduced widely in 1966 and developing rapidly since then, these ‘Lazarus drugs’ have often allowed previously incapacitated PHAs to recover their strength and return to work. But they are expensive: a one month supply of the combination of three or four types of drug—complex drug regimens called Highly Active Antiretroviral Treatment or HAART—can cost 15,000 US dollars or more. Of course, in the industrialized world, the state or insurance usually covers such costs. But in countries where average annual per-capita health-related expenditure may be under 5 US dollars, clearly such drugs are inaccessible to all but a very few PHAs. Yet many of these drugs cost only pennies to produce. Activists maintain that the reason for their high price is the greed of the multinational drug companies, a charge that is naturally refuted by the companies. Because they can be made so cheaply, some countries that are badly affected by AIDS, particularly those that already have a developed pharmaceutical industry, would like to produce their own, low-price versions of some of these drugs. However, since the drugs are covered by patent, to do so would be to offend against the international laws covering intellectual property rights. There are legal ways to avoid this problem. Without going into detail, the World Trade Organization (WTO), through theTrade-Related Aspects of Intellectual Property Rights (TRIPS) agreement, in certain circumstances allows countries to grant a compulsory license to manufacture a product covered by an international patent. Pharmaceutical companies, supported by the US Government, have somewhat naturally been resisting this approach. But AIDS activists have been pressing for wider application of this right over the last several months, with a degree of success. But besides being expensive, HAART is notoriously difficult to prescribe and monitor. The complex regimens, which may require taking 20 or more pills a day, are also very difficult to comply with. Some of the drugs must be taken with food, others on an empty stomach. Side effects can be so debilitating that PHAs can no longer tolerate the drugs that are saving their lives. Interactions between drugs can be dangerous or fatal. Forgotten doses can cause the virus to develop resistance to the drugs, rendering them ineffective. The resistant strain of the virus can also be passed on to others, who will then also obtain no benefit from the drug concerned. Efficacy of the regimens must be monitored frequently with sophisticated tests, the results of which are difficult to interpret. And all this is continually changing as new research is carried out, as new drugs become available. Keeping up to date on this information is a huge challenge for health care providers and patients alike.

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Rights to this information as intellectual property are not protected by patent, but often instead by copyright. There is no provision under international agreements for compulsory licensing of copyrighted material. For most of those reading this article, this is not a significant problem, since much of the information required is available on a multitude of web sites and in many newsletters. In fact, for many the problem is not lack of information, but quite the reverse, an overload! But we tend to forget that this is only true for those of us who competently speak and read English, or perhaps one of the other major world languages. With even a relatively slow Internet connection, I cannot possibly absorb the huge amount of information that is accessible. But what of those who are not gifted with tongues, or at least are lacking in understanding of these main languages? How do they cope? According to the Humanities Libraries Project, 60% of United Nations agencies place over-tight, defensive copyright restrictions upon their publications, and 20 major UN agencies charge higher prices for use of their information than developing countries can afford. Given my own experience with colleagues in Indonesia, I can say mostly they don’t! There are few, very few, sources of real news about AIDS—or indeed most matters connected with health -in the majority of the world’s ‘other’ languages—even the major or national ones. Yes, some of the better newspapers may occasionally pick up items from Reuters Health and translate them. But even this is mainly the more sensational items. The clarifications and explanations that follow rarely make it. For example, our local press recently took up a report that oral sex, far from being a relatively safe form of sex, in fact carries a significant risk of transmitting HIV The later reports that attempted to put this into context, for example in identifying which partner in the act is at greater risk, were universally ignored.

The issue at stake The Western activists working so hard to improve access to drugs in poorer nations become frustrated by lack of support from those they are trying to help. ‘Why do you not lobby your governments?’ they ask PHAs and activists in the developing world. The answer is that very few in the developing world, or at least in Asia, are more than vaguely aware of the issues. There is little understanding of the intricacies of the WTO, TRIPS or compulsory licensing. Worse, there is very limited knowledge of the treatment options, the concept of HAART, or the limitations and challenges surrounding these drugs. Articles with titles like ‘Setting Priorities for Government Involvement with Antiretrovirals’ rarely get translated into the vernacular. How can developing country activists lobby effectively without such information? Is it a coincidence that the countries of the developing world where first world languages are widely spoken, mainly Latin America, have been most successful in mobilizing local support for such activism? A common challenge throughout the world is to offer voluntary counselling and informed consent in connection with HIV testing. But how can the counsellors discharge


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this responsibility when they themselves are poorly informed? Yes, the basic knowledge is probably available in their own language, but the new information, the ‘news’—such as the latest on transmission of HIV by an infected mother to her baby, or the risks of oral sex—rarely is this readily accessible to such counsellors. It is worse for those in the medical profession, doctors and nurses. At least in many parts of Asia, few of them understand English with sufficient competence to browse quickly through the latest news releases to determine if there is something there which is vital in their practice. The treatment recommendations change very quickly in this field— the ‘Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents’ (the doctors’ 100 page bible on treatment with HAART) have changed five times in the last two years. How can a doctor treat patients on HAART with confidence without access to these updates? The fact that few patients can afford to pay for HAART only makes things worse; the doctor can ill-afford the time to keep current even in his or her own language, let alone study such complex documents in English. Studies have proven that informed and involved patients survive longer. Some PHAs in the industrialized world spend much time browsing the web for new information, for news about therapies, studies, clinical trials and treatment protocols. In many cases they become more knowledgeable than their doctors. But few PHAs in Asia speak or read English well, if at all. Even if they could get access to the World Wide Web, how would this benefit them if none of the information they need is available in their own language? If the advocates for compulsory licensing achieved their objectives tomorrow, would we know what to do? If by some miracle, umpteen billion dollars became available tomorrow to provide access for all to antiretroviral drugs, would we be ready to use them? Would doctors know how to prescribe them, how to treat their side effects? Would patients be aware of the pros and cons of ‘hit hard, hit early’ (the concept of proactive treatment response long before any symptoms of the disease appear)? Would activists understand the risks of universal availability of such toxic drugs with such a propensity to develop resistance if incorrectly used ? Perhaps, yes, in the English speaking world, and in industrialized countries using one of the world’s main languages. But what about many parts of Africa or Asia where English is not well understood?

The need Clearly there is a crucial need for translation of such news into the vernacular. This of course is no easy task. As one who has been involved in disseminating information in a local Asian language for several years now, I understand the challenges. Much of what is written in English is difficult for a native speaker to interpret correctly—the task of translating really tests the understanding of what has been written. Words frequently do not exist for the concepts or terms being conveyed, requiring long discussions on the best way to communicate the essence of the topic. For instance, the Western concepts of advocacy and lobbying, and ethical imperatives like informed consent or even discrimination, are still alien in what is still in many ways a feudal society; and the difference between ‘responsibility’ and ‘accountability’ cannot easily be conveyed in Indonesian. Clearly there is no room for error in communicating information which could


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be ‘life or death’, but translators rarely have more than a shallow grasp of the topic. Thus double and even triple checking is needed to ensure accuracy, and there is rarely time to ‘tidy things up’ to make the information more readable in the local language. But a bigger challenge is to identify the information that will be of interest and value to the local audience or readership. Clearly a pre-requisite for this is a knowledge and understanding of the conditions, concerns and outlook of the target audience. Although we do need to educate people in the developing world about the basics of HAART, if for no other reason than to offer hope, for most the details will not be of interest. However, for doctors who have no other source of information (besides perhaps the slanted releases from the drug companies), but who are caring for a small number of patients who are able to afford HAART, clearly the need is different. To identify, obtain, and edit appropriate information ready for translation is a complex and time-consuming task, even for those with a firm grasp of English and fast Internet access.

Copyright and ‘copyleft’ Such challenges can and must be met—and are being met, at least in Indonesia. But the task is immensely complicated by the fact that a considerable proportion of the information accessed in this way is copyrighted. This is especially true of the ‘news’. Thus, while anyone can read the Reuters Health reports on the web, these cannot be distributed without permission—any language. It is of course possible to ask permission, but even the World Intellectual Property Organization (WIPO) has admitted that many rights holders will find it easier just to say ‘no’, rather than deal with a request to publish 1 . At best, most would require permission to be granted on an article by article basis, which would be an administrative nightmare for non-governmental organizations (NGOs) on very limited budgets. To many, it seems unconscionable that any restrictions should be placed upon the free flow of information on health and development matters. As Dr. Gro Harlem Brundtland, Secretary General of the WHO has said, ‘We have learnt that we cannot hope for change towards sustainable development without democracy, freedom of speech and access to information.’ 2 Notwithstanding this—and similar comments by Secretary General of the United Nations, Kofi Annan—according to the Humanities Libraries Project, 60% of United Nations agencies place over-tight, defensive copyright restrictions upon their publications, and 20 major UN agencies charge higher prices for use of their information than developing countries can afford. 3 Many organizations do encourage free dissemination of their material. Some of these adopt what has become known as ‘copyleft’ statements. One typical example from the Population Council: Any part of the report may be copied or adapted to meet local needs without permission from the Population Council, provided that the parts copied are distributed free or at cost (not for profit) and that the source is identified. Any commercial reproduction requires prior permission from the Population Council’. 4


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But although several similar examples are quoted by the Humanities Libraries Project, it is relatively rare to find such explicit statements in publications from other sources except those published by the WHO and UNAIDS. Even in documents published with support from USAID, the US international development assistance program which reportedly requires free access, a standard ‘Copyright; All Rights Reserved’ statement tends to appear. Thus there is still much room for the activist community to put pressure on organizations to address this. One way to move this forward is to sign on to the Humanities Project global petition to release all UN publications and publicly funded humanitarian and development information in copyleft. 3 But unfortunately, the copyleft approach is unlikely to be acceptable to the commercial information providers—although perhaps the FID Review might like to set an example? No doubt a case could be made for special consideration to be given to the dissemination of health-and development-related news in developing country languages. Naturally this would raise a number of questions on definition of terms like ‘health-related’ and ‘news’, but these should not be insuperable. The bigger challenge is to place sufficient pressure upon the news organizations to cause them to accept such a policy. It is clear that most activist organizations view this challenge at best as a side-show to their main efforts on compulsory licensing, and at worst likely to take attention from this objective. Those organizations currently concerned are small and tend to ignore such legalities, relatively secure in hope that no one will notice them. Or they are unclear as to how the law applies to them. Some claim exemption under a vague concept called ‘fair use’, which no one—including lawyers—seems to understand. And as long as their donors don’t complain, they’re probably safe, although at risk. Many will feel it best not to ‘rock the boat.’ But the problem of copyright is also hindering an approach that would help us all. I mentioned earlier the amount of time and effort needed to access, identify and select appropriate material. But much of the material that I find suitable for dissemination in Indonesian would also be appropriate for other parts of the developing world. Indeed, I often receive requests for English-language versions of my newsletters for just this purpose. Being among those I mentioned earlier in feeling relatively secure with what I do in Indonesian, I’m not willing to draw attention to myself by complying—clearly dissemination in English would be more obvious and arguably a more notable breach of the law.

A possible solution But what if this task could be carried out centrally, perhaps by one of the international NGOs with experience in developing countries, possibly one that is already involved in information dissemination in English? They could identify the news items, perhaps edit them into simpler English where necessary and distribute them electronically and/or in printed form to organizations such as mine to select and translate. They could negotiate agreements with the information providers, on the basis that dissemination in English would only be for purposes of translation into developing country languages on a nonprofit basis. This would avoid a huge duplication of work and avoid any concerns over


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legality. Just as is the case with the drugs, little of this information is currently being bought by organizations in the developing world. Thus such a program would have little impact on the profits of the information providers. On the other hand, they could be seen to be supporting a global need, rather than frustrating world development and health. We can only guess at how many people are dying because doctors in developing countries are not aware, for example, of dangerous interactions between newly released drugs. Or how many babies are being born infected with HIV because mothers are unaware of new, more affordable options for preventing this. Or sex workers being infected because they and their clients believe the myths that condoms have pores through which HIV can pass. Much effort is being put into improving information networks in the developing world, including extending the reach of the Internet. Translation by computer is on the horizon. Organizations are waking up to the fact the ‘information is the cheapest form of therapy’. And even governments are recognizing that civil society cannot operate effectively with an uninformed public. We can address these challenges. But we do need a little help from our friends to loosen the grip of copyright that hinders the free flow of this information.

Additional reading See the article ‘Compulsory Licensing for Bridging the Gap—Treatment Access in Developing Countries: Interview with James Love, Consumer Project on Technology’ 5 for a very lucid discussion on these trade issues. See the Humanities Libraries Project web site 3 for more information, additional examples of ‘copyleft’ statements, and details of the worldwide movement and petition to release all UN publications and publicly funded humanitarian and development information. Additional ideas may be obtained from ‘Copyleft, Open Source an Sharing Digital Information’ http://dsl.org/copyleft/

References 1. Richard Wilder, Deputy Legal Counsel of the World Intellectual Property Organization, personal communication, August 13, 1999 2. Brundtland, Dr. Gro Harlem; Speech to theThird Ministerial Conference on Environment and Health—Healthy Planet Forum, London, 16–18 June 1999. http://www.who.int/director-general/speeches/english/19990616_london_3.html 3. Examples of Excellent Copyright Policies, Humanity Libraries Project http://www.oneworld.org/globalprojects/humcdrom/copyrigh.htm 4. Community-Based AIDS Prevention and Care in Africa; The Population Council, June 1998 5. James, John S.; Compulsory Licensing for Bridging the Gap—Treatment Access in Developing Countries: Interview with James Love, Consumer Project on Technology. AIDS Treatment News, March 5, 1999 http://www.aids.org/Immunet/atn.nsf/page/a314–01

TRAINING ON GENDER AND REPRODUCTIVE HEALTH: PLACING HIV PREVENTION IN A BROADER CONTEXT Maria de Bruyn Policy Analyst Ipas, USA Nadine France Technical Officer World Health Organisation (WHO) Switzerland

Maria de Bruyn received an MA degree in West European Studies from Indiana University in the USA and an MA degree in Cultural Anthropology/Non-Western Sociology with a specialization in medical anthropology from the Vrije Universiteit in Amsterdam, The Netherlands. She is currently a Policy Analyst with the US office of Ipas, an international NGO working on women’s reproductive health. From 1989-January 2000 she was a project manager for reproductive health projects (mainly HIV/AIDS) at the Royal Tropical Institute in Amsterdam; there she was an Executive Editor of the international newsletter Sexual Health Exchange and manager of the AIDS Coordination Bureau resource centre. She may be contacted at: Ipas, 300 Market Street, Suite 200, Chapel Hill, NC 27516, USA. Email: [email protected] website: http://www.ipas.org Nadine France is a Social Scientist currently working as a Technical Officer on the issue of violence against women and child abuse in the Department of Violence and Injury Prevention in the World Health Organization, Geneva, Switzerland. From 1995–1997 she worked on gender and HIV/AIDS with various local NGOs and UNIFEM in Thailand where she was involved in gender training and mainstreaming gender into HIV/ AIDS activities. She is also the moderator of GENDER-AIDS, the global e-mail network on gender and HIV/ AIDS which has been running since 1997 with a membership of 1500 worldwide. She may be contacted at: World Health Organization, WHO/VIP, WHO, 20 Avenue Appia, 1211 Geneva 27, Switzerland. Email: [email protected]

Introduction As the HIV/AIDS epidemic has progressed, over time and geographical distance, we have become aware of two important points. First, stemming the spread of HIV depends essentially on motivating people to adopt healthy behaviours that will protect themselves

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and others. In some cases, this involves reinforcing behaviours and practices that impede transmission of the virus; in other cases, it involves strategies to persuade people to change behaviours that favour the spread of HIV. Second, considerable numbers of people find themselves in situations that make it difficult or even impossible to practise healthy behaviours. One factor contributing to such ‘disabling’ (rather than enabling) environments is gender inequality, whereby women and men are prevented from sharing equal responsibility for healthy behavioural choices due to ideas, expectations and norms that reinforce women’s subordination to men. It is therefore vital that adults—and even more so young women and men—receive information and education in ways that challenge current gender stereotypes. One way in which such information and education can be communicated is through participatory training workshops that equip those who work with youth with practical tools to link the concept of gender to concrete reproductive health issues such as HIV/AIDS, violence, unwanted pregnancy and unsafe abortion. Because many of those working in the field of adolescent reproductive health face time, financial and human resources constraints, they can benefit from model curricula so that they need not ‘reinvent the wheel’ and can learn from experiences in other countries. To meet this need, such a model is currently being developed by the international nongovernmental organization (NGO) Ipas in collaboration with the Department of Violence and Injury Prevention of the World Health Organization (WHO). After replication in four regions around the world, a user-friendly practical resource kit will be produced and disseminated in three languages incorporating feedback from organizations in different countries. The project began in August 1999 and will be completed in 2001. First, we will describe how the project has developed a workshop curriculum that provides a framework for active learning about the relation of gender to reproductive health. Then we will discuss how the curriculum is being disseminated using a variety of methods to gain feedback and input from different types of organizations in regions around the world.

Project background The project described herein, entitled Gender, Adolescents and Reproductive Health, evolved from a pilot workshop presented to 95 participants during the regional conference on HIV/AIDS held in Manila, the Philippines, in 1997. The pilot workshop focused mainly on HIV and sexually-transmitted infections (STIs); it was expanded in 1999 to include other reproductive health issues such as violence, unwanted pregnancy and unsafe abortion. The target audience comprises professionals and volunteers who work with adolescents in the field of sexual and reproductive health. The project’s main objectives are to: • develop and refine a locally adaptable workshop curriculum that addresses gender in relation to a variety of reproductive health issues including HIV/ STIs, violence, unwanted pregnancy and unsafe abortion • promote replication of the workshop in different countries so as to gain feedback and ideas for improvements that take cultural differences into account


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• produce and widely disseminate final workshop materials in printed form and via e-mail and the Internet. To contribute to the model curriculum’s applicability across regions, we have offered the workshop to large groups of people at international conferences. In September 1999, it was given for 67 participants at a regional HIV/AIDS conference in Brazil and thereafter to 134 delegates to the regional HIV/AIDS conference held in Malaysia in October 1999. On two occasions, the workshop has been presented at national meetings. In October 1999, a youth-oriented NGO from Peru that is collaborating on the project (Instituto de Educación y Salud) presented it to 24 men and women at a sexuality education conference in Colombia. Then in April 2000, parts of the workshop supplemented with additional exercises on violence were carried out with 50 individuals in Kosovo as part of a larger violence prevention project being implemented by WHO. This approach of taking advantage of international and national meetings to reach large groups of potential participants has made it possible to have people from 22 countries participate so far. When the workshop is offered, we make an effort to invite regional facilitators to participate with us. In Brazil, the facilitator team included representatives of NGOs from Brazil (woman and man), Mexico (woman) and Peru (women); in Malaysia, the facilitators included two men from Australia and Malaysia and one Malaysian woman. Local NGO representatives were part of the facilitator team in Kosovo. After each presentation of the workshop, the curriculum is revised to take into account participants’ suggestions and experiences. For example, after the Colombia workshop, where the workshop was offered in a format of 16 hours, the notes for facilitators were adapted to address how the workshop can be offered in different time formats. (At the HIV/AIDS conferences, the workshop generally has only been allotted 3–4 hours, requiring shortening of some exercises.) Following the Malaysia workshops, information on sexual orientation in relation to gender was added.

An active problem-posing approach ‘In problem-posing education, men [people!] develop their power to perceive critically the way they exist in the world with which and in which they find themselves; they come to see the world not as a static reality, but as a reality in process, in transformation’. (Freire 1 )

Young women and men especially need to be educated in ways that challenge current gender stereotypes because the attitudes and behaviours that they learn today form the basis for their views and actions as adults. To this end, those who inform and educate adolescents must be able to recognise their own gender-based behaviour, support young people in examining how gender may influence their reproductive health risks, and determine how interventions targeting youth can address negative gender influences. ‘The teacher [in problem-posing education] is no longer merely the-one-whoteaches, but one who is himself [herself] taught in dialogue with the students,


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who in turn while being taught also teach. They become jointly responsible for a process in which all grow’. (Freire 2 ) One fundamental assumption on which the curriculum is based is that it is important for youth workers who carry out exercises on gender with adolescents to have participated in and experienced them first-hand. They will then have a better idea of how their target audience may react to the activities. Moreover, the exercises will help them in assessing their own feelings, assumptions and beliefs regarding gender issues so that they are better prepared to address these in their daily work (and perhaps their personal lives). A second assumption is that the trainers implementing the curriculum should be facilitators, i.e., support participants in becoming aware of factors that affect their lives and work. The notes for facilitators accordingly stress that they should be willing to share some of their own personal experiences yet not be too directive during the activities. Such an approach can lessen the ‘distance’ between the ‘teachers’ and ‘students’ and promote dialogue. The model curriculum is therefore based on a participatory approach. Workshop participants do not hear lectures but rather actively engage in exercises right from the start. These exercises are presented with an ‘incremental’ focus, progressing from simpler to more complex activities and from exercises designed to ‘observe’ gender influences to activities that aim to analyse the causes and consequences of gender bias on reproductive health as well as possible solutions. The curriculum also includes activities that aim to touch upon participants’ emotions as well as cognitive abilities since the combination can be especially effective in promoting more sustainable changes in attitudes and behaviours.

Workshop framework The workshop begins with a simple group discussion about the concepts of sex and gender—how do we think about them and what do they mean? We often find that people find the concepts confusing, not least because they are often used interchangeably and incorrectly (e.g., employment applications that now ask about an applicant’s gender instead of sex). It is explained that sex refers to biological and genetic factors, while gender refers to widely shared ideas and expectations (norms) concerning women and men. These include ideas about ‘typically’ feminine or female and masculine or male characteristics and abilities and commonly shared expectations about how women and men should behave in various situations. ‘Helping people begin to look at things in new ways is a teacher’s chief job. This is easier if we look at ideas, not in terms of general theories, but through reallife examples’. (Werner and Bower 3 ) The next exercise—‘When we were young’—creates an opportunity for participants to look inward and become conscious of barriers that sometimes prevent them from carrying out work in which gender plays an important part. They reflect on early childhood experiences wherein they learned what it means to be female or male. Volunteers share their experiences with the group, making it possible to see that these


100

were often determined by the reactions of others around them rather than only the biological fact of being born one sex or the other.

‘Participatory exercises are the basis for transmitting information in the workshop’

Maria de Bruyn and Nadine France address 67 participants (not all visible) at one of the workshops in Malaysia.


101

Ms K Vidya of India presents small-group work at the Asian AIDS Conference

The subsequent set of exercises provides participants with an opportunity to analyse how gender concepts are transmitted and learned through different sources of information (parents, other family members, peers, religion, schools, the mass media) and language used to talk about sexuality. A gender ‘quiz’ enables them to see how women’s and men’s roles in societies around the world are more often determined by gender-based rather than sex-based factors. The final set of exercises, which include a role-play and problem-tree analysis, allows the workshop participants to analyse the effect of gender concepts on specific reproductive health problems so that gender-sensitive interventions can be developed to address them. In a lifeline history exercise, small groups create a story that represents an imaginary person’s life from birth to older age. Each group receives a one-line description of the person; examples include: a woman who is raped, has an unwanted pregnancy and abortion; a young man who contracts an STI; a young newly married woman subjected to domestic violence; a middle-class man who contracts an STI and becomes infertile. They then identify: • situations/circumstances outside the individual that placed her/him at risk and situations that reinforced the individual’s development and capacity to address the problem


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• factors that can empower people—especially children and adolescents—to avoid falling into the risk situations (e.g., development of self-esteem, negotiating skills, conflict resolution, assertiveness, decision-making capacity) • how she/he could reduce the risks and what she/he needed access to in order to do this.

Nadine France explains an exercise to participants at the Asian AIDS Conference

‘When we started this exercise we were joking about what could happen, but when we finished we realised that this is the true situation for many women in our country’ (Participant in Malaysia regarding the life-line history) The workshop ends with a discussion of barriers to gender-based work and the completion of evaluation forms.

Documentation support All participants in the conference workshops who provided their addresses received a copy of the latest version of the curriculum with a request to try out the exercises and provide us with feedback on their experiences in using them. Additional documents were distributed to supplement their knowledge on gender and reproductive health issues. For example, handouts include examples of completed workshop exercises showing how gender may be related to HIV/ STI infection or unwanted pregnancy and unsafe abortion, as well as suggestions on gender-sensitive interventions to address these problems. Another includes definitions of terminology related to gender and reproductive health, while a third is a questionnaire designed to assess personal perceptions regarding


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reproductive health issues. Published documents on violence, unsafe abortion and care for the treatment of incomplete miscarriages and abortions have also been disseminated together with a resource pack on gender in relation to HIV/AIDS and STIs. Reports on the workshops’ implementation were sent to participants as well so that they had a record of how the exercises were completed in their sessions. Benefit

Workshop None Little Average Much Very % (No.) No.) No.) No.) No.) much above No.) average

Pertinent new theory

Brazil (31)

3

8

12

7

61

Colombia (22)

3

7

10

2

55

Malaysia (48)

4

22

18

1

40

10

37

40

10

50

Important information on Brazil problems/issues Colombia

4

7

16

3

61

2

9

8

3

50

Malaysia

5

19

21

3

50

11

35

45

9

53

2

8

15

6

68

Colombia

2

6

9

5

64

Malaysia

6

14

24

2

54

10

28

48

13

60

1

5

13

9

71

Total (101)

1

1

Total Showed how different aspects of reproductive health (HIV/STDs, violence, unwanted pregnancy, abortion) can be discussed together

Brazil

Workshop materials

Brazil

Total

1

1

Colombia

1

0

4

11

6

77

Malaysia

1

10

3

24

7

65

Total

2

11

12

48

22

69

Strategies for conducting Brazil similar workshop Colombia

7

13

10

74

6

10

6

73

Malaysia

13

26

9

73

Total

26

49

25

73

Feedback on the workshop Up to April 2000, feedback had been received through evaluation forms and e-mail. The evaluation forms were completed at the end of the workshops by 31 of 67 participants in


104

Brazil, 22 of 24 in Colombia and 48 of 134 in Malaysia. They were asked to rate possible benefits of their participation from 1–5 (1=none, 2=little, 3=average, 4= much, 5=very much). Though it must be noted that fewer than half the participants completed the evaluations in Brazil and Malaysia, the responses given were quite positive, showing that in many cases the benefits perceived were above average. The participatory approach was particularly appreciated: ‘This was the best activity at the congress, giving us a chance to exchange multidisciplinary experiences at one time and at a level of work that was serious and productive. It went beyond the vertical ‘teacher-student’ model’. (Participant in Brazil) ‘Nice to have such informative and interactive workshop; interaction helps easy learning. I learned some sessions which I can include in my workshop’. (Participant in Malaysia) After the workshop, representatives of NGOs indicated that they are or will be using the curriculum to complement their work with adolescents: ‘It was a very reflective and beneficial exercise for me and I shall be adapting it to the needs of my work’. (Participant from Malaysia) ‘I have used some parts of your programme during a Youth Workshop on Gender issues; the participants were having so much fun and said they have learnt to look at this in a different angle’. (Participant from Malaysia) ‘We are applying some concepts that were taught by the workshop’. (Participant from The Philippines) A youth NGO in India reported that some of the exercises helped adolescents overcome their inhibitions to talk about sexuality and realise that women have a right to reproductive health care. It also helped to empower some girls : ‘One 13-year-old girl after this exercise said she had something more (the ability to give birth), and not less than a man and therefore she would no longer be afraid of men’. ‘The experiences of participating in your workshop is very useful, as we are now implementing a WPRO-funded project to assess the feasibility and effectiveness to improve STD service in Shanghai, China’.

Replication and further adaptation of the curriculum To gain further feedback so that the process of refining the curriculum can continue, workshop participants at the conferences who provided e-mail addresses have received ‘reminder requests’ to replicate parts of or the entire workshop with their own project beneficiaries. A small number of NGOs are being paid to test the curriculum and report back on it in a structured form so as to increase the number of countries from which input is being obtained. As of May 2000, this group included NGOs in Colombia, Kosovo, Malaysia, Nigeria, Peru, and the Philippines.


105

In June 2000, the draft curriculum’s availability on the Ipas website was announced through various e-mail discussion fora so that more people can offer their comments and suggestions. The English and Spanish versions of the curriculum, as well as reports on the Brazil, Colombia and Malaysia workshops, are available in a ‘downloadable’ format and plans are being made to offer the French and Albanian versions there as well. An additional ‘spin-off’ of the project has been the adaptation of the curriculum for use within Ipas to train all its staff on gender and reproductive health. The experience gained in this setting will further contribute to refinement of the final materials. Presentations about the project are also being given at other conferences and meetings to ‘get the word out’ to as wide an audience as possible. For example, representatives of the Asian Development Bank attended a session during a review meeting of the Fourth World Conference on Women’s Platform for Action in Bangkok, Thailand, in November 1999. A poster presentation will be given at the annual meetings of the Global Health Council and abstracts have been submitted to other conferences as well.

Preparation and dissemination of the final curriculum All of the comments and suggestions received will be incorporated into a newly revised version of the curriculum. We offered the adapted workshop at the International Conference on AIDS held in Durban, South Africa, in July 2000, together with facilitators from India, Peru, The Netherlands and South Africa. The feedback received there will be incorporated into a final edition of the curriculum that will be published as part of the resource kit. Though the other contents of the resource kit have not yet been completely determined, they will most likely include additional exercises and reports from NGOs on their experiences in implementing the workshop. Dissemination of the kit will take place both in printed format and electronic versions that can be distributed through the Ipas website and e-mail fora. It is hoped that libraries and resource centres will make the documents available for photocopying as well. The previous involvement of one of the authors in producing a resource pack on gender and HIV/AIDS/STIs showed that such material is highly valued. It is the expectation of this project that professionals and volunteers in the social, education and health fields who serve adolescents will also benefit from these practical tools that will facilitate their ability to develop reproductive health interventions from a gender-sensitive perspective. FID members and readers of the FID Review who would like to be involved in further disseminating the resource kit are invited to contact the authors via email: [email protected]@who.ch (for full addresses, see: ‘Biographical Notes’)

Notes The 1997 version of the workshop was designed by Maria de Bruyn (then of the Royal Tropical Institute in The Netherlands), Nadine France (then with GENDER-AIDS, Thailand) and Peter Gillies (skills-building workshops coordinator of the 1997 Asian Conference on AIDS in Manila, The Philippines). Ferdie V.Buenviaje (The Library


106

Foundation, the Philippines) and Amy S.M.Fung (Queen Mary Hospital, Hong Kong) participated in presenting the workshop in Manila. The current workshop has been developed by Maria de Bruyn (Ipas, USA) and Nadine France (WHO, Switzerland) with substantial contributions from Carmen Murguía (Institute de Educatión y Salud, Peru) and suggestions by Claudia Moreno (Ipas, Mexico), Jerald Joseph (Komas, Malaysia) and Zaitun Kasim (All Women’s Action Society, Malaysia). The questionnaire in the background documentation was adapted from: Womencentred and gender-sensitive experiences. Changing our perspectives, policies and programmes on women’s health in Asia and the Pacific, A health resource kit, AsianPacific Resource & Research Centre for Women (ARROW), Kuala Lumpur, Malaysia, 1996

References 1. Freire, Paulo. Pedagogy of the Oppressed . Bergman Ramos, Myra, translator. New York: Continuum, 1992 (1970 original), pp. 70–71 2. Ibid, p. 67 3. Werner, David and Bower, Bill. Helping Health Workers Learn . Palo Alto: The Hesperian Foundation, 1982, p. 1–7

SELECTED RESOURCES ON HIV/AIDS Websites AEGIS http://www.aegis.com AEGIS, using a combination of FidoNet (connecting over 32,000 electronic bulletin boards in 66 countries) and Internet communication tools, seeks to foster understanding and knowledge that will lead to better care, prevention, and a cure. It offers a vast range of information, from clinical information to late-breaking news, with chat facilities. AIDS Briefs http://saets.ssd.u-bordeaux2.fr/notes_sida/index.html AIDS Briefs were publications commissioned by the World Health Organization (WHO) Global Programme on AIDS (the predecessor to UNAIDS). Their publication was supported by the Health and Human Resources Analysis and Research for Africa (HHRAA) Project of the USAID Africa Bureau, through its Support for Analysis and Research in Africa (SARA) Project. These Briefs are now available in French at the above site, thanks to Société d’Afrique et Sida, http://www.worldbank.org/aids-econ Best Practice: identifying what works http://www.unaids.org/bestpractice/index.html To succeed in preventing HIV transmission, countries need to work simultaneously on many fronts—for example, through schools, and health facilities, in the workplace, through media campaigns and through outreach to various population groups. Drawing on practical experience from countries around the world, they must use effective approaches—the policies, strategies and technologies that UNAIDS the Joint United Nations Programme on HIV/ AIDS—calls ‘best practice’. UNAIDS is producing a collection of best practice materials on about 50 specific topics relevant to HIV/AIDS. The file on each such topic will normally contain the following: 1. UNAIDS Point of View—This 8-page advocacy document, aimed primarily at journalists and community leaders, lists key facts and figures, outlines the problems, myths and misconceptions about the topic, and summarizes what needs to be done. 2. UNAIDS Technical Update—This 8 -page document, aimed primarily at managers of HIV/AIDS projects and programmes, provides a technical overview of the topic. It summarizes the main problems and challenges involved as well as the best practice responses, with short examples. The Technical Update also provides an annotated bibliography of selected Key Materials (see below) guiding the reader to more information on the topic.


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3. Best Practice Case Study—These are detailed real-life examples of policies, strategies and projects in a specific region, country or community that provide important ‘lessons-learned’ in responding to the epidemic. Case studies may include materials published outside UNAIDS. 4. Key Material—This set of written and audiovisual materials—reports, articles, books, CDs, videos, etc., authored outside or inside UNAIDS—represents up-to-date authoritative thinking on each topic or an example of best practice in the field. UNAIDS policy statements and reviews are included here. 5. Best Practice Summary Booklet—In this Summary Booklet, UNAIDS attempts to capture details of a range of best practices in order to provide useful lessons and offer references for those working in HIV/ AIDS-related activities. Currently, UNAIDS collects and publishes information on 50 main topic areas related to HIV/AIDS. The entries in this booklet represent only some of the many reports and suggestions that we received. The Communication Initiative http://www.comminit.com This site is from a project sponsored by the Rockefeller Foundation, UNICEF, USAID, WHO, BBC World Service, CIDA, Johns Hopkins University Center for Communication Programs, The European Union, Soul City, The Panos Institute, UNAIDS. Through the website, The Drum Beat and The Media Beat (two e-mail publications), a database and linkage system is emerging that many organizations are using to support their communication planning, review and evaluation; to refresh and stimulate ongoing programmes. The underlying rationale is that the best source of information for that process is the experience of others engaged in communication and development work— on-the-ground and in policy and funding roles. The communication fields of interest include: radio, television, new technologies, print, advertising, interpersonal, counselling, community level communication, decision-making and negotiation, entertainment, news media, social marketing, advocacy, media relations, culture, live drama, theatre, music and debates.

E-mail discussion lists http://www.hivnet.ch/e/index-frame.html The Fondation du Présent in Switzerland is currently hosting a number of e-mail discussion lists through which people exchange news and ideas and engage in debates on issues related to HIV/AIDS. Some of the lists are regional in focus and others are topicfocused. It is possible to subscribe and receive daily messages from the lists or to visit the website to review postings. The lists include: • AF-AIDS (special focus on Africa) • GENDER-AIDS • Human Rights • Immigration

Selected resources on HIV/AIDS

109

• Intaids (international focus) • Media AIDS • PWHA Net (issues of importance to people living with HIV/AIDS) • SEA-AIDS (special focus on Asia) • Sex work • Treatment Access Family Health International http://www.fhi.org/en/aids/aids.html Family Health International strengthens programs in developing countries to prevent the spread of sexually transmitted diseases (STDs), including HIV Global Network of People Living with HIV/AIDS (GNP+) http://www.hivnet.ch/gnp GNP+ is a global network for and by people with HIV/ AIDS. The central secretariat of the network is based in Amsterdam, Netherlands and has a board of 12 members representing different world regions. International Council of AIDS Service Organizations (ICASO) http://www.icaso.org ICASO, a Network of community-based AIDS organizations, brings together groups throughout the world that have arisen out of community efforts to control the spread and impact of HIV/AIDS. It believes that the participation of women and men infected with HIV and communities affected by the epidemic is essential to ensure a provision of support and necessary services, and that a recognition of the human rights of all persons is central to an intelligent public health strategy to combat this epidemic. The ICASO network is an interactive global focus point in the international HIV/AIDS world, gathering and disseminating information and analysis on key issues, coordinating the development of non-governmental organization positions on these issues, and working as partners with key international agencies to ensure that the concerns and interests of NGOs around the world are articulated and represented at all levels. (An annotated version of its statement to the 55th session of the United Nations Commission on Human Rights, held in Geneva in April 1999, can be viewed at http://www.web.net/~icaso/statement.html.) Panos Institute London http://www.oneworld.org/panos/ The Panos AIDS Programme exists to provide authoritative, accessible analysis of HIV/AIDS issues, particularly for media in developing countries, and to increase media and NGO capacities to provide high quality information to their own publics. The main activities of the Panos AIDS Programme are: • AIDS information sheets, AIDS Media briefing documents, and other media


110

information outputs, providing accessible, authoritative HIV/AIDS information to journalists, particularly in developing countries • AIDS Today Radio, a syndicated radio and capacity-building programme on HIV/AIDS in developing countries • An international news features service on AIDS, which is syndicated to over 400 news organisations worldwide; selected features are syndicated to a further 1,500 news organisations worldwide • Media capacity-building programmes to improve the capacity of journalists to report effectively on HIV/ AIDS in developing countries. Activities in 1997 included an African media congress on HIV/AIDS attended by 50 journalists from 11 countries. The group established AIDSNet, an electronic information network of African journalists reporting on HIV and AIDS as well as drawing up a code of conduct. • Information and research programmes designed to examine poorly understood or neglected HIV/AIDS issues such as men who have sex with men in the developing world and AIDS and men in the developing world. • Indigenous language programme, which provides small grants to partner organizations to adapt and translate AIDS information for media in their own countries. RH Gateway http://www.rhgateway.org The Reproductive Health Gateway is designed to give quick access to relevant, accurate information about reproductive health and currently allows you to search a group of over 25 cooperating agency websites. A list of the sites is on RH Gateway. There are over 20,000 webpages, Acrobat files, word processing & rtf files, and Powerpoint presentations indexed in RH Gateway. SAfAIDS http://www.safaids.org The main purpose of SAfAIDS (Southern Africa AIDS Information Dissemination Service) is to help strengthen capacity to address the socio-economic impact of AIDS and to promote HIV prevention in southern Africa, all in the context of understanding the epidemic as a crucial issue for development. SAfAIDS promotes policy, research, planning and programme development around HIV/AIDS in the southern Africa region, working with NGOs, people living with HIV/AIDS, government bodies, international agencies, research institutes, media organizations, the private sector, labour and others. The web site contains publications, fact sheets, policy statements, statistics, descriptions of its initiatives and further links. UNDP HIV and Development Programme http://www.undp.org/hiv/index.htm The United Nations Development Programme HIV and Development Programme draws together UNDP’s headquarters, regional and country programming and other

Selected resources on HIV/AIDS

111

initiatives designed to strengthen the capacity of nations and organizations to respond effectively to the HIV epidemic. The activities covered in this programme include: • establishing priority needs through consultations with those directly affected by the epidemic; • national capacity building through field missions, consultations and HIV and development workshops on multisectoral programme development and coordination; • development of gender-sensitive and community-based approaches through pilot programmes, consultations, workshops and publications; • multisectoral policy development and advocacy through intercountry consultations, colloquia, the establishment of regional networks (legal, economic, for example), publications and technical assistance; • programme development through workshops and facilitated study tours which explore innovative ways of increasing and measuring programme effectiveness and sustainability; • mainstreaming HIV in key programming areas, for example, in village self-help schemes, food security systems, regional planning approaches, etc., through studies, workshops, training and technical assistance; • establishing operational research priorities relevant to effective and sustainable programme and policy development and evaluation through colloquia, commissioned reviews and consultations; and • mobilising and coordinating the response of the UN system and other players at the national level to maximise the effectiveness of their support for the national response to the epidemic. WHO Communicable Disease Surveillance and Response http://www.who.int/emc/diseases/hiv/index.html This site includes information on HIV/AIDS and sexually transmitted infections as well as links to many other AIDS-related sites.

Publications Facing the challenges of HIV/AIDS/STDs: a gender-based response is a resource pack which contains a booklet and tool cards for incorporating a gender-based perspective into HIV/AIDS programmes. Published by the Royal Tropical Institute in Amsterdam, The Netherlands, and SAfAIDS in Harare, Zimbabwe, it is currently being distributed free of charge by UNAIDS. Contact: Riet Berkvens, Royal Tropical Institute, P.O. Box 95001, 1090 HA Amsterdam, The Netherlands; Email: [email protected] ; Fax: 31–20–665– 4423 Young Lives at Risk: Adolescents and Sexual Health. Panos Briefing No. 35, July 1999; available from: Panos London, 9 White Lion Street, London N1 9PD, United Kingdom. Email: [email protected] [a Spanish version will be available in late 2000 from: Ipas, Policy Division, 200 Market Street, Chapel Hill, NC 27516, USA. Email: [email protected] ]


112

Identifying the Intersection: Unwanted Pregnancy, HIV/ AIDS and Unsafe Abortion (20-page monograph) and Intersecting Health Risks: Adolescent Unwanted Pregnancy, Abortion and AIDS (2-page leaflet); both are also available in Spanish and Portuguese from: Ipas, Policy Division, 200 Market Street, Chapel Hill, NC 27516, USA; Email: [email protected]

HIV AIDS and Information

HIV AIDS

Psychiatric Aspects of HIV AIDS

Manual of HIV AIDS Therapy

HIV and AIDS: Basic Elements and Priorities

Family Care in HIV AIDS

Positive: Living with HIV AIDS

Understanding and challenging HIV AIDS Stigma

handbook of genitourinary medicine hiv and aids

HIV AND AIDS (Medical Perspectives Series)

HIV AIDS (Health and Medical Issues Today)

Living Well with HIV & AIDS

Organizing Aids: Workplace and Organizational Responses to the HIV AIDS Epidemic (Social Aspects of Aids Series)

AIDS Epidemic Update (Joint United Nations Programme on HIV AIDS)

Strategic Communication in the HIV AIDS Epidemic

HIV AIDS in U.S. Communities of Color

HIV-AIDS - A Very Short Introduction

HIV - Information Plus Reference Series

African Americans and HIV AIDS: Understanding and Addressing the Epidemic

HIV and AIDS (Oxfam Working in Gender and Development Series)

Global Health Governance and the Fight Against HIV AIDS

AIDS and Other Manifestations of HIV Infection, Fourth Edition

Learning from HIV and AIDS (Biosocial Society Symposium Series)

Killing Us Quietly: Native Americans and HIV AIDS

Mental Health and HIV Infection (Social Aspect of Aids Series)

Social Networks, Drug Injectors' Lives, and HIV AIDS (Aids Prevention and Mental Health)

Impact of AIDS: Psychological and Social Aspects of HIV Infection

HIV AIDS in Russia and Eurasia Vol. I

Social Networks, Drug Injectors' Lives, and HIV AIDS (Aids Prevention and Mental Health)

HIV AIDS, Stigma and Children: A Literature Review

HIV AIDS and Information

HIV AIDS

Psychiatric Aspects of HIV AIDS

Manual of HIV AIDS Therapy

HIV and AIDS: Basic Elements and Priorities

Family Care in HIV AIDS

Positive: Living with HIV AIDS

Understanding and challenging HIV AIDS Stigma

handbook of genitourinary medicine hiv and aids

HIV AND AIDS (Medical Perspectives Series)

HIV AIDS (Health and Medical Issues Today)

Living Well with HIV & AIDS

Organizing Aids: Workplace and Organizational Responses to the HIV AIDS Epidemic (Social Aspects of Aids Series)

AIDS Epidemic Update (Joint United Nations Programme on HIV AIDS)

Strategic Communication in the HIV AIDS Epidemic

HIV AIDS in U.S. Communities of Color

HIV-AIDS - A Very Short Introduction

HIV - Information Plus Reference Series

African Americans and HIV AIDS: Understanding and Addressing the Epidemic

HIV and AIDS (Oxfam Working in Gender and Development Series)

Global Health Governance and the Fight Against HIV AIDS

AIDS and Other Manifestations of HIV Infection, Fourth Edition

Learning from HIV and AIDS (Biosocial Society Symposium Series)

Killing Us Quietly: Native Americans and HIV AIDS

Mental Health and HIV Infection (Social Aspect of Aids Series)

Social Networks, Drug Injectors' Lives, and HIV AIDS (Aids Prevention and Mental Health)

Impact of AIDS: Psychological and Social Aspects of HIV Infection

HIV AIDS in Russia and Eurasia Vol. I

Social Networks, Drug Injectors' Lives, and HIV AIDS (Aids Prevention and Mental Health)

HIV AIDS, Stigma and Children: A Literature Review

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