Living Proof

Living proof Community action on AIDS

The International HIV/AIDS Alliance

Captions:

The International HIV/AIDS Alliance (the Alliance) is an international non-

Front cover

governmental organisation (NGO) that supports communities in developing

(from the top) Outreach worker Ivan Shekker, with drug users Vladimira

countries to make a significant contribution to HIV prevention, AIDS care

(left) and Yulia in their apartment, Kiev, Ukraine; Rafaéle Aballo, beneficiary

and to the provision of support to children affected by the epidemic. Since

of a community-based antiretroviral programme, at home with her children,

its establishment in 1993, the Alliance has provided financial and technical

Ouagadougou, Burkina Faso; Counsellor Ricardo Herrera (foreground)

support to NGOs and community-based organisations from more than 40

relaxing at home with his partner in Guayaquil, Ecuador.

countries.

page 2 Village health guide demonstrating the correct way to use a condom,

Acknowledgments

at Seva Nilayam health centre, Tamil Nadu, India.

The Alliance would like to thank all those who contributed to this

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publication, including Alliance partners, consultants, trustees and staff.

(above) Chama Musoka talks to peer educators about his life with HIV/AIDS, Lusaka, Zambia; (below) Fabiana Pérez (right) with hairdresser Jennifer

Special appreciation goes to those individuals and organisations whose

Alvaredo discussing the activities of their new organisation, Amazonas.

stories appear in this book.

Inside back cover Volunteer home care worker leaves Arulagam Hospice, Tamil Nadu, India.

This publication was made possible through the support of the Bill and Melinda Gates Foundation. The opinions expressed herein do

Appearance in the photographs in this publication is no indication of

not necessarily reflect the views of this donor.

sexuality or HIV status.

The International HIV/AIDS Alliance works in partnership with:

Photography © 2004 Gideon Mendel for the International HIV/AIDS Alliance

Associação Brasileira Interdisciplinar de AIDS (ABIA) – Brazil

Gideon Mendel is represented by Corbis Pictures, UK

Text © 2004 International HIV/AIDS Alliance

Initiative Privée et Communautaire Contre le SIDA au Burkina Faso (IPC) – Burkina Faso

The photographs in this publication may not be reproduced, edited

Association African Solidarité (Projet Orange) – Burkina Faso

or altered without permission of the copyright owner.

Khmer HIV/AIDS NGO Alliance (KHANA) – Cambodia Corporación Kimirina – Ecuador

The text of this publication may be translated, printed and used for

LEPRA India – India

personal, educational and not-for-profit purposes only, provided at all

MAMTA Health Institute for Mother and Child – India

times that the source indications are stated (to include, but not to be

Palmyrah Workers Development Society (PWDS) – India

limited to, the name of the copyright owner).

Vasavya Mahila Mandali (VMM) – India Colectivo Sol – Mexico

We encourage the translation and adaptation of Alliance materials

National AIDS Foundation (NAF) – Mongolia

but we request prior written approval from the Alliance. Under no

Association Marocaine de Solidarité et Développement (AMSED) – Morocco

circumstances can the Alliance be held responsible for the content of

Network on Ethics, Law, HIV/AIDS Prevention, Support and Care (NELA) –

any third party translation or adaptation. Failure to adhere to these

Nigeria

conditions shall be considered a breach which may be actionable. It is

Alliance Nationale Contre le SIDA (ANCS) – Senegal

strictly prohibited to sell any of the information or materials on to third

AIDS Network Development Foundation (AIDSNet) – Thailand

parties or to use any of the information or materials for personal gain.

Philippines NGO Support Program (PHANSuP) – The Philippines

The Alliance also has country offices in: The Caribbean, China, India, Madagascar, Mozambique, Myanmar, Ukraine, USA and Zambia.

For more information on the Alliance, its work and partners or to make a donation, please visit our website www.aidsalliance.org or write to:

International HIV/AIDS Alliance Queensberry House 104-106 Queens Road Brighton BN1 3XF United Kingdom Tel: +44 1273 718900 Fax: +44 1273 718901 General email: mail@aidsalliance.org

Registered British Charity Number 1038860

Design: SMITH, London Picture assistant: Mike Kemp Final scans: Mathew Smithson Multimedia consultant for panoramic photography: Guilhem Alandry Printing: Dexter Graphics Ltd

Published: July 2004 ISBN 1-905055-00-5

The paper used in this publication is woodfree, ECF, acid-free, recyclable and biodegradable 2

Living proof Community action on AIDS Photographs by Gideon Mendel Written by Lesley Lawson

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5 6

Foreword Everybody’s talking about it Prevention: Voluntary counselling and testing in Zambia

11 That loving spirit Positive profile: Juliet Mweetwa

14 Of saints and sinners Prevention: Injecting drug users in Kiev, Ukraine

19 Clean days Positive profile: Ivan Shekker

22 Amazons on the frontier Prevention: Transgender and other key groups in Ecuador

26 Citizens and human beings Prevention: The women who sell sex in Quito, Ecuador

28 Hope and salvation Prevention: Sex workers in Crimea

30 Window of hope Prevention: Young people in Lusaka, Zambia

34 Young ambassador Positive profile: Chama Musoka

36 Work is love made visible Care: Community-based programme in Tamil Nadu, India

38 No looking back Positive profile: Rani Jayakodi

40 Proud and happy Care: The volunteers of Arulagam hospice, India

43 Picnic at Vaigai dam Support: People helping people to live with HIV and AIDS, India

44 Superboy in sunglasses Positive profile: Ricardo Herrera

46 Saving lives, one by one Treatment: Community-based programme in Ougadougou, Burkina Faso

52 A return to youth Positive profile: Raphaéle Aballo

55 From child to child Mitigating the impact of the orphan crisis in rural Burkina Faso

62 A family reunion The Alliance’s tenth anniversary celebrations

Foreword

Bad news about HIV and AIDS grabs the headlines. We are all familiar with the terrible suffering caused by AIDS; how friends and families are torn apart, and how through death, stigma and discrimination the social fabric of entire communities is destroyed.

All these stories are true, and with each of them we lose a bit of our humanity. But AIDS has also triggered responses of tremendous courage, and these stories are seldom told. The International HIV/AIDS Alliance embarked on this publication to show the lives of ordinary people across the globe doing extra-ordinary work to contain the epidemic. We commissioned a writer and a photographer from outside the organisation to visit our projects and document what they saw.

Many of the stories and photographs in this book are of individuals who have overcome stigma and organised themselves to reduce their vulnerability to AIDS and curb the epidemic. They are making a huge difference with very little help: they have prevented new infections; they have helped individuals, families and communities to deal with the challenges of HIV and AIDS. As importantly, they have shown us all what works in each community. They are the living proof that it can be done.

Compassion and courage are in every one of these stories.

They explain why and how ordinary people can make a difference… and clearly show why more support needs to be channelled to community responses. They also remind us of how much we still need to do and explain why HIV/AIDS still kills thousands of people every day.

Community responses have been key in every country that has succeeded in bringing the epidemic under control. The International HIV/AIDS Alliance and its partners are proud to have provided technical and financial support to the programmes and people profiled in this publication. We are equally proud of the inspiring work done by the 1,800 community– and faith-based groups we support, and have identified at the bottom of these pages. They have implemented over 2,500 projects with our financial support.

The book is primarily a testimony of their efforts and recognition of their commitments… but it also offers a challenge to all of us.

How would it be if we, other ordinary people inspired by these stories, rose to that challenge and committed to similar levels?

Could we defeat the epidemic?

It can be done: it must be done… now.

Alvaro Bermejo Executive Director of the International HIV/AIDS Alliance

Jeffrey O’Malley (left) and Alvaro Bermejo

Ten years is a long time in the history of AIDS. From the early 1980s to the early 1990s, cumulative HIV infections around the world had increased from about 100,000 to about 12 million. Those abstract numbers reflected a very human toll of devastation, as people were struck down by what was first called ‘slim’ in Uganda, and ‘GRID’ – gay-related immune deficiency – in Los Angeles. People living with AIDS first formed a movement, and then quickly re-invented all paradigms about how patients interact with doctors, drug companies and politics.

That was the context within which the International HIV/AIDS Alliance was established in 1993. International donors were then spending about $US350 million a year to support AIDS programmes in the developing world, with almost all of that funding dedicated to prevention. This was less than New York City spent at the time on rubbish collection, and it was only a tiny fraction of the billions that are now being invested in AIDS work. Nevertheless, there was considerable frustration that so little of this funding reached the community groups that were actually doing the work on AIDS, and so few tangible results seemed to emerge from the investments.

The Alliance was specifically created to address these concerns.

First and foremost, the Alliance was committed to channelling resources to the front line of community action. We didn’t really know what would work, and it seemed as good a strategy as any to invest in the people closest to the epidemic who were inventing AIDS work on a day-to-day basis. Second, the Alliance was explicitly committed to supporting care, treatment access and impact mitigation efforts, as well as HIV prevention. Finally, we called ourselves an ‘alliance’ because we knew that, while nobody had all the answers, we could all improve our work by learning from each other.

Ten years on, much has changed again. Most tragically, HIV has continued to spread around the world, beyond even the extent predicted in the most pessimistic forecasts of 1993. But there have also been dramatic success stories: most amazingly through the advent of combination antiretroviral therapy, but also through ‘combination prevention’. Scholars and ideologues are still arguing about what works, but what is absolutely clear is that the first wave of developing country success stories – Uganda, Thailand, Senegal and Brazil being cited most often – are the same countries that benefited from early and widespread community responses and disproportionately high attention from both local political leaders and international donors. A second wave of success stories is now emerging from Cambodia to Zambia to Mexico, with many of these countries benefiting enormously from both their neighbours’ lessons and from the efforts of the Alliance to support, replicate and expand community responses.

We see fewer red ribbons at Hollywood galas these days, but more on Indian cricket players and the cassocks or robes of religious leaders. But the heart of the response to AIDS is still people living with HIV, their loved ones, families and communities.

Though political leadership and money, technical support and organisational development, drugs and condoms all help, our hope for an AIDS-free world in the future still lies on the front lines.

Jeffrey O’Malley Executive Director from 1993 to 2003 of the International HIV/AIDS Alliance

Everybody’s talking about it Scaling up voluntary counselling and testing in Zambia

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Supported organisations • Algeria • Association IQRAA • AIDS/Algérie • Bangladesh • AIDS Awareness Foundation • Al-Falah Bangladesh • Alliance for Cooperation and Legal Aid Bangladesh • Alternate Development Initiatives • Ananya Samaj Kallyan Sangostha • Association for Integrated Socio-Economic Development for Under Privileged People • Assistance for Slum Dwellers • Association for Community Development • Association for Social Advance Programme • Association for Social and Environmental Development • Banaful Social Welfare Organization • Bangladesh Centre for Development Journalism and Communication • Bangladesh Manobadhikar Sangbadik Forum • Bangladesh Women’s Health Coalition • Centre for Development Services • Centre for Rural and Social Development • Chinishpuri Dipshika Mohila Samity • Community Development Centre • Community Development Foundation • Concern for Environmental Development and Research • Confidential Approach to AIDS Prevention • Development Agency and Research

It is Monday morning at the Kalomo District Hospital and the voluntary counselling and testing (VCT) team has just one more client to see – a young mother, in fact very young. She has been referred by the antenatal clinic for routine HIV testing and, being a responsible mother, she has agreed. But now, after the pre-test counselling session, she is hesitating. (opposite) Outside the Kalomo District Hospital. (above) A young woman has just heard that she tested HIV negative; (below) Seven test results. The double red line indicates positive HIV status.

‘Is there anything else you would like to know before we do the test?’ asks the counsellor.

The girl sighs and looks at her green court shoes.

The only sound is the hum of the fan and the distant shouting of children in the heat outside. There is a sense that life and death decisions are being made.

‘What will happen when you take the blood?’ she asks. ‘I have a long journey home and I am afraid I will be too weak. If I faint there will be nobody to help me.’

Reassured, she assents, and her blood is drawn and added to the other six phials that are to go for testing.

The centre deals with four to seven clients a day from this southern Zambian town and its surrounding districts.

The programme is part of a nationwide campaign to scale up voluntary counselling and testing. In August 2000, the Zambian Ministry of Health, together with international donor organisations, began exploring ways to scale up VCT across the country. The result was the Zambia VCT Partnership, a collaboration between government, non-governmental organisations (NGOs) and district health management teams. The Kalomo centre is one of 34 sites in 12 districts across the country.

The campaign’s biggest challenge is to reach into communities and encourage individuals to take the test. It is here that NGOs have a major role to play, and the Alliance is the lead partner in community mobilisation in the Zambia VCT Partnership. Here in Kalomo, the Alliance is working with the Mumuni Centre, a vibrant local NGO in the district, which is sharing information and skills with other local AIDS NGOs. Together, they are creating the momentum for a successful VCT programme.

Working with and supporting existing NGOs is an essential part of the Alliance’s strategy.

‘This is a good initiative of the Alliance,’ says Mumuni coordinator Kenneth Kakomo. ‘If you can identify people in your own community, it can work well. We are not a big NGO that has come in from the outside, with an office in town. It is a good way of sustaining programmes in the community. If funding doesn’t come, people will carry on. It is ours.’

The light Mumuni, meaning ‘light’, was established as a voluntary organisation by concerned community members in 1997. At that time, the nearest VCT facility was a mission hospital 48 km away, and the quality of care and counselling for HIV-positive patients at

Centre • Development Society • Durjoy Nari Shongho • Esho Kaj Kari • HIV/AIDS and STD Alliance Bangladesh (HASAB) • Jagrata Juba Shangha • Jatiya Tarun Sangha • Manab Kallyan Parishad • Maneesha • Mukti Nati-O-Unnayan Sangstha • Nari Unnayan Shakti • Organisation of Development Programme for the Underprivileged • Palli Unnayan Samaj Seba Sangstha • Paricharja • Polianpur Tarun Krishi Club • Progati Samaj Kallyan Pratisthan • Shapla Mohila Samity • Shikkha Shastha Unnayan Karzakram • Shohojogi-AIDS Network • Sinnomul Mohila Samity • Society for Health, Economy, Agronomy and Self Sufficiency • Society for the Elimination of Poverty Bangladesh • Society of Health Extension • Socio-Economic Development Assisting Centre • Sushilan • Sylhet Jubo Academy • The Lighthouse • Theatre Centre for Social Development • Theatre for Research Education & Empowerment • Ujon Sk • Unity Through Population Services • Voluntary Association for Rural Development • Work and Rural Development • Young Power in Social Action • Brazil • Amazona •

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Kalomo’s local hospital was not sufficient for the growing dimensions of the epidemic.

Among Mumuni’s founders were several health professionals whose own families had been affected

by HIV/AIDS. In the early days, they and other members found training in counselling and AIDS management from established organisations nearby.

But starting Mumuni with no funding, premises or support was a struggle every day, as field officer Regina Mulope recalls: ‘Initially it was difficult to start a group. People got discouraged and felt that there was nothing we could do to change things in Kalomo – this disease was just here to wipe everyone out. It was hard to reach out to people when we had nothing to offer. We just had to comfort them with words.’

After receiving their first funding, Mumuni established a home-based care programme in the community. Trained volunteers have formed care and prevention teams that visit the chronically ill in their homes and give basic information and care. Next came the realisation of a dream – the establishment of the VCT centre in Kalomo District Hospital. Patricia Hamweemba, a founder member of Mumuni, was chosen as the co-ordinator, providing a link between the community, the NGO and the health services.

But the key was winning community support for the new VCT services, and that was not easy at first.

Mumuni counsellors met with community leaders and conducted large AIDS education workshops in the compounds. But people were sceptical. Many believed they were already positive; what was the point of having it confirmed? Says Patricia, ’People asked why they should bother to be tested. They asked, ”Is there any cure? Will we get anything?”’

On 4 July 2002, the first four community members came for testing. Though it was slow at first, today, people in Kalomo are coming increasingly to appreciate the benefits of knowing their HIV status.

And now that antiretroviral drugs, which prevent mother-to-child infection, have become available at a nearby hospital, more and more pregnant women are coming forward.

Now the challenge is to spread the word to the outlying districts, and Mumuni is gradually stretching towards them by holding mobile VCT days in villages within reach of Kalomo.

The words of the song have been written for the occasion. Its chorus is the plainest of messages: ‘Mumuni, now that you have come we must all go into that house so that we can be tested!’

The Chief and his headmen (and even one headwoman) arrive and formal introductions are made in the Tonga language. In his welcome, the Chief blesses the day. ’I must call all the people, all the children, even the animals, to come and hear what you have to say.’

In this epidemic’s 20-year history, this is the first time the Chief has met AIDS educators in his district.

He is keen, now, that people should be taught about the disease, but he wants the programme to be continuous.

The party moves on to the tiny four-roomed cement building that serves as a health post for the village, and the real business of the day begins.

Over 150 men and women are waiting, seated on log benches under the shade of the mubombo trees.

Mumuni counsellors speak to them about HIV and how to prevent it. A condom demonstration is conducted with the aid of an axe handle. Questions are asked and answered. One woman asks if eating uncooked vegetables can infect her. The Chief follows this up with a trickier question: ’What if I cut myself while peeling the vegetables, and the blood goes onto them? Is that not dangerous to other people?’

One woman cannot restrain her indignation over the price of the female condom. ’Everyone knows that men are the most stubborn people, and yet they get condoms for free. We women are responsible and we should be considered.’

Patricia wraps up the clinic with a final talk. VCT, she says, has something for everyone – those who are negative can free their minds from worry; those who are positive will learn how to prolong their lives by healthy eating and good hygiene.

‘HIV is there,’ she says. ‘People should not stand back. We ask you now to go for VCT so that you can learn to protect yourselves and one another.’

Villagers are invited to seek out the counsellors and be tested. They are promised their results before the sun has set.

The mobile testing team goes to Sikwaazwa village. (left) Villagers welcome the mobile testing team; (opposite above) Blood is drawn in the tiny health post building; (opposite below) Pre– and posttest counselling takes place on the outskirts of the health post. (below) Talks and condom demonstrations prepare the villagers for testing and distract them from noticing those who are going for testing.

Call all the children, call the animals By the time the mobile VCT team reaches Sikwaazwa village a large crowd has gathered at the meeting place. Mumuni’s eight counsellors are swept up by a circle of singing and dancing women in bright cloths.

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Associação Brasileira Interdisciplinar de AIDS (ABIA) • Associaçao Lar • Comunicaçàoe Cultuva • Davida • Gapa/MG • Grab • Grupo Incentivo a Vida • Grupo Pela Vidda/Espirit Santo • Pela Vidda, Niteroi • Pela Vidda, RJ • Programa Municipal de DST/Aids de Praia Grande • Burkina Faso • ADESCO – Kenedougou • ADESCO – Ouagadougou • Amicale Burkinabé des Infirmières • Amicale des Frères Unis du Burkina Faso • Amicale Kurbi de Orodara • Amicale Pour la Promotion de l’Equilibre Social • Association Pour la Promotion de la Jeunesse Africaine et le Développement • Association Adiarra des Jeunes de Tougan • Association African Solidarité (AAS) • Association Appui Moral, Matérial et Intellectuel à l’Enfant • Association Benkady de Batié • Association Burkinabé de Soutien au Victimes du SIDA • Association Burkinabé Pour la Promotion de la Santé • Association des Enfants et Jeunes Travailleurs du Burkina • Association des Femmes de Gourcy • Association des Jeunes pour la Promotion des Orphelins • Association des Jeunes pour le Développement

Agro-Pastoral de Ramongho • Association des Veuves et Orphelins du Burkina • Association des Volontaires Pour le Développement • Association Dialogue Sidaction • Association d’Insertion et d’Aide aux Orphelins • Association Espoir et Vie • Association Génération Solidaire • Association Graine de Genie • Association Jeunesse pour l’Elimination de la Faim au Burkina Faso • Association Ken Wo Kele Koura • Association Kumalé de Komtoéga • Association Laafi La Viim • Association Laagm Taab Nooma • Association Laagm-N-Tum de Koudougou • Association Laagm-Zoodo • Association les Mains Unies du Sahel • Association Nationale d’Action Rurale • Association Nerwaya de Kokologo • Association Population Santé et Développement • Association Pour la Culture et la Mise en Valeur de Gabio • Association Pour la Paix et la Solidarité • Association pour la protection universelle des enfants • Association pour la survie des orphelins et des veuves du département de Komki village de Viou • Association pour le Développement de Arbolle • Association Pour le

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During the talks the counsellors have positioned themselves around the health post – two have set up in the tiny building, as has the nurse who will draw the blood. Others are dotted around under bushes, behind the trees. Further away, Patricia has set up her makeshift laboratory where they will test the blood. All samples will be subjected to a rapid test, which takes less than five minutes, and those that are positive are tested again with a second type of rapid test.

While the crowd is entertained by drama, music and ongoing talks, those who wish to be tested slip quietly away to find the counsellors. Men and women, old and young, come forward to be tested. A grandmother brings the children of her recently deceased daughter. They are thin and coughing and she fears the worst. A young woman says she feels so ill, she is certain she is positive. But she is relieved that soon she will know the truth.

A young man in his early twenties says he wants to be tested to know what kind of life he is going to lead.

‘After hearing the talk,’ he says, ‘I now know that being positive is not something to fear. It is not the end of life.’

Most have heard about HIV/AIDS before, but this is their first convenient opportunity to be tested.

By four o’clock the proceedings are winding down.

The children are restless; mothers are shifting sleeping babies from laps to backs.

In the middle of a farewell speech by the local care and prevention team leader, the Chief jumps up and starts to speak. The import of the day has imprinted itself upon his chiefly responsibilities. ’By the middle of next week,’ he says, ‘I want all my headmen to be submitting reports to me to say that they are having meetings about HIV/AIDS.’ The sun is low in the sky; the log benches and the trampled grass are deserted. Fifty-six people have been tested and counselled today – more tests than the hospital does in a week. The counsellors, tired but inspired, regroup to share impressions. ’It has been overwhelming,’ says Patricia. ’I am particularly pleased the traditional leaders were here – that is some sort of breakthrough. They are the gatekeepers of the community.’

But the results are not so encouraging. Thirty-five per cent are HIV positive, a shocking figure for a rural area where HIV prevalence is thought to be lower than in urban areas. The counsellors agree that there is a lot more work to do. They plan a follow-up visit as soon as they can get the funds. ’We have learnt a lot from these rural people,’ says Patricia. ’We have learnt that AIDS is not just for the towns. There are a number of contributing factors.

After the harvest, farmers go into the towns to sell their surplus maize, which they exchange for secondhand clothes. Then they go back to the villages.

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There is a lot of social interaction in both places.’

In the current economic climate it is not unlikely that the poor may exchange sex for food, or for clothes. There is a mine near Kalomo, which adds danger to the mix. The town attracts many dealers in precious stones; they have time on their hands and money to burn.

The headwoman from the neighbouring village has another insight into the area’s high HIV infection rate.

She believes that the traditional sexual cleansing ritual is to blame. In this area, when a person dies, his or her spouse must be cleansed by sex with a relative.

A thin woman in a bright yellow cloth, Esnart Chibbola, has been looking thoughtful all day. ‘This ritual,’ she says, ‘is very common. The only way to stop HIV is to stop this ritual completely. If the headmen work with the clinical staff and the counsellors, it will not be too hard to do. This is the first time we have connected with Mumuni and now we can begin. We are very pleased.’

There are other issues arising from this mobile visit. Some people are uneasy about the challenge that group testing poses to confidentiality. By tomorrow morning everybody in this small community will know who went for testing. Though the counsellors have encouraged people not to share their results immediately, confidentiality may easily be broken.

But counsellors are optimistic that shared confidentiality will be viable in this setting. The possibility of extending group testing into urban areas is also being discussed.

(above) The laboratory; (below) An axe handle makes a useful prop for a condom demonstration.

Learning from each other The idea for a mobile VCT came from another NGO in Lundazi, north-east of Lusaka. Thandazani had been working on a model for VCT outreach since 1999, and in June 2003 the Alliance organised an exchange visit to this project. Two members of Mumuni, as well as the Alliance’s Lillian Muyunda Byers, made the two-day trip to Lundazi to see it for themselves.

‘The Lundazi people were well organised,’ says Lillian. ‘The VCT took place right in the village and people gave up their houses for counselling. And everyone was involved. One headman and his wife were in the drama. Another headman got up and announced that he was HIV positive.’

On their return to Kalomo, Mumuni immediately began to work up plans for a programme of its own.

Exchanges like this are the lifeblood of NGOs. Within Kalomo, Mumuni shares knowledge and skills with 14 organisations fighting against HIV/AIDS. ‘All this has happened in less than one year,’ says Lillian. ’Funding has made a big difference. Before, things were very disorganised, but now the Kalomo NGOs are really building skills.’

Développement de Sigle • Association pour le Développement des Initiatives Paysannes – Solidarité • Association pour le Développement du Département de Yonde • Association pour le Développement du Village Dassui et de ses Environs • Association pour le Développement Economique-Social de Djigouera • Association pour le Développement, la Solidarité et la Coopération • Association pour l’Epanouissement des Jeunes • Association Rogoom Nooma pour le Développement de V6 • Association Solidarité Action Faire Face • Association Solidarité et Entraide Mutuelle au Sahel-Yako • Association Solidarité Naam-Digré • Association Song Koaadba • Association Song Taaba • Association SOS/SIDA • Association Tamuwé de Wakara • Association Todi Yaba • Association Vision Communautaire • Association Vive le Paysan • Association Wend Panga de Louda • Association Wend-Panga Pour le Développement de Sahel • Association Yekouma Dakoupa de Zabre • Caritas Paroissiale – Bokin • Caritas Paroissiale de Bourzanga • Centre de Production et de

Juliet Mweetwa: living positively.

That loving spirit JULIET MWEETWA, aged 27, was diagnosed with HIV in January 2003. Since then she has played an active role in educating the community of her small town, Kalomo, in southern Zambia. We followed her through three days of her busy life.

Monday morning Juliet Mweetwa is one of 30 activists meeting in the dingy conference room of Kalomo’s only hotel. They are discussing issues of stigma and discrimination, which are barriers to HIV testing.

‘People are afraid to be tested in case they are found to be HIV positive,’ says Juliet. ‘They fear divorce; they fear that their families will abandon them.

Most of all, they are afraid that they will die immediately.’

As she speaks, she bangs her hand on the table and her glossy braids fly. As one of two openly positive people in the group, Juliet has a special contribution to make. This is her own story as much as anybody else’s.

She is an active participant in HIV/AIDS events in the district. This particular one is a thematic meeting organised by Mumuni, the lead NGO for VCT in the district. She works with the group until midday, when she has agreed to meet us at her home to tell her story.

Juliet lives in a single room of a house shared by several families in a dusty corner of the compound.

This room is the family’s bedroom, living room and kitchen, and usually accommodates four children – two of her own and two young orphans she met during an outreach visit. Her mother visited recently, saw how she struggled to feed the children, and whisked them off to her homestead in a distant village. So life is easier now, but Juliet is lost without her little ones.

Juliet’s life with HIV began towards the end of 2002, when her husband divorced her and left her with their two small children and no money. There had been many signs that all was not well, and she was very afraid that she had HIV. She was immobilised by depression and spent long hours just sitting in her room. Then she saw a poster advertising training at the DAPP Hope Station and went there for help. Soon she was enrolled in their Positive Living Advocacy course – a six-month part-time course that trains HIV-positive people in healthy living. This gave her the courage to go for VCT. The result was… positive.

‘For the first two weeks it was very difficult. I would just look at my children and cry.’ Clinging to the hope of an initial misdiagnosis, Juliet tested and re-tested, but the results came back positive every time.

‘Then I decided to become an advocate for positive living. I knew I could have that loving spirit to go into the community. It has helped me to help the chronically ill.’

Since then Juliet has not looked back. She was chosen to join the care and prevention team whose members visit sick people in their homes. She has addressed church congregations and worked with local NGOs to mobilise people into the VCT programme. Juliet has never been sick.

‘We promote healthy living and tell people about

Formation en Elevage Tropical – CEPROFET-GONSE • Centre de Solidarité Action Sociale • Club d’Amitié de Solidarité et du Tourisme • Club d’Education Actuelle • Collectif des Associations de Jeunes Contre le SIDA • Coordination des Volontaires de Dedougou • Education Mondiale Solidarité • Ensemble Artistique de Tamplan • Etre Comme Les Autres • Groupement Feminin Nomtondo de Boulonga • Groupement Villageois de Guirmogo • Jeunesse des Assemblées de Dieu de Burkina • Juvenie Association for the fight against AIDS • Kadini N’Tama • La Bergerie • Laafi Zoodo de Kossouka • Programme d’Appui au Monde Associatif et Communautaire • Prudence au Sahel • Responsalité, Espoir, Vie, Solidarité • Solidarité Action Sociale • Solidarité organisation lutte et vie • Sonti Yelaben – Legmoin • SOS SIDA Jeunesse Mobilisée • Tele Yaka • Troupe Théatrale Sorgho Yarce • Union des Routiers Burkinabé de Lutte Contre le SIDA • Union Provinciale des Jeunes du Bulkiemte / Association Solidarité Aide aux Enfants • Vie Positive • Vie Solidaire de Gaoua •

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‘You can’t tell by looking.’ Juliet

affordable remedies. We promote income-generating projects and encourage people to garden so that they can grow their own healthy foods.’

Tuesday Juliet is with the Mumuni mobile VCT team at an isolated rural health post. The journey from Kalomo to Sikwaazwa village has taken several hours and the sun is already high in the sky. Juliet is addressing a crowd of villagers seated on log benches under the trees.

‘Pay attention! Now I want to ask you, who has seen someone with AIDS?’ A few people put up their hands. ‘Yes,’ they shout, ‘We have seen them at the hospital.’

‘And what did they look like?’

‘They were thin…’ ‘They had sores…’ ‘They looked sick…’ ‘The skin will change’.

Everyone has an observation. Everyone has some or other sure sign by which to distinguish the HIV positive from the lucky ones.

But Juliet has a surprise for them. ‘It’s not that easy,’ she says. ‘You can’t tell by looking. Look at me.’

The crowd gasps as she turns around and wiggles her bum.

12

‘I am positive, and you can see that I am healthy and I can do everything that you can do. There is hope after VCT. I am not ashamed. You can live well after being diagnosed positive.’

Juliet tells the group her name. Then she tells them her story. And finally she asks for questions. They come thick and fast – men and women, old and young, all have things to ask. They do not mince their words. The most insistent questioner is a young woman who is determined to discover if Juliet still has an active sex life.

‘Do you still have feelings for men?’ she asks. Yes, says Juliet, she does, but she does not have a boyfriend.

‘But what would you do if a handsome man proposes?’

‘I would not succumb. I would tell him I am positive.’

‘But what if you really, really like him?’

‘I could use a safe sex method,’ says Juliet, ‘but I would rather explain that I am positive, and abstain’.

An anxious young man wants to know if he will get HIV even if he does not ejaculate. Another asks if dry sex is a cause of HIV. Juliet responds to these questions with detailed explanations, covering everything from body fluids to sexual practices and their relevance to HIV. Whoever thought that village

speaks to villagers about living with HIV.

Juliet at her mother’s homestead with her children, Munsanda aged five years (left) and two-year-old Simbeleko.

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people avoid talking about sex was seriously mistaken.

People want to know what she eats to stay healthy; does she take antiretroviral drugs? She answers each question simply but comprehensively. Finally, the questions dry up and Juliet is released. A Mumuni counsellor runs over to Juliet and hugs her. ‘It’s hard for her to do this,’ says the counsellor.

But Juliet doesn’t really agree: she loves these talks, she thrives on the contact, she feels appreciated and useful.

Wednesday 5am Exhausted by the previous day, Juliet is sleeping when friends arrive to take her to visit her children, a three-hour car journey away.

As they bump down the rutted road to the village, the conversation turns to her mother. Although other family members know about her status, Juliet has yet to tell her mother that she is positive.

‘Mamma has BP [high blood pressure],’ she says.

‘I am afraid it will make her ill.’

When we arrive at the homestead, two ragged girls emerge from a hut and run to Juliet, their arms outstretched; and laughing. They are her baby sister and five-year-old daughter. Her brothers and her

mother, who is carrying Juliet’s two-year-old son Simbeleko, soon follow. Simbeleko clutches his mother.

Juliet speaks to him in English. ‘Do you want to kiss mama?’ He complies with solemn joy.

Simbeleko means ‘miracle’; his was a difficult birth and he has been below the fifth percentile in weight ever since.

Juliet’s eldest brother is the only family member who has a job in town. He sends money home, but otherwise the family live on the corn and cowpeas they scratch from the dry earth. They sell a small surplus of vegetables and fruit at the market. Before the droughts, which these years come again and again, they grew groundnuts, but now the yield is poor.

Though happy to be home, Juliet will stay just a few days before returning to town, and to her work as a positive living advocate. Though it pays no money, it gives essential meaning to her life.

‘I realise that I get relief from talking to people about my HIV status,’ she says. ‘The more I talk, the better I cope. When I give a testimony I do see people going for VCT. So through that I am coping with my situation, even though it is hard. I am trying my level best to lead the way for the community.’

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Of saints and sinners Preventing HIV among injecting drug users in Kiev, Ukraine Monday 3pm In the grounds of Kiev’s Clinical Hospital No. 5, five men stand in the snow smoking.

On the wall of the brick shed behind them is a bright yellow cardboard box with large lettering ‘Safety Box. For used syringes, needles and sharps’. The shed is one of two stationary needle and syringe exchange points for Club Eney, a programme that works with injecting drug users in Kiev, Ukraine.

The programme is managed and run entirely by former drug users – indeed, these five men have a combined record of more than 50 years of drug addiction. But now they spend their days helping others.

The programme offers a full package of services

for injecting drug users, including HIV education, counselling, group therapy and legal and medical advice. It also offers direct assistance in the form of legal representation and basic medical care. The fact that this is a peer-led programme makes it one of the most successful in the city.

‘The main point about Club Eney is that they are well motivated,’ says Alliance Ukraine Director Andrei Klepikov. ‘It comes from their hearts. A lot of bright people have joined and they work 24 hours a day. The donors ask them, “How do you find these injecting drug users?” and they answer, “We see each other.” ’ Many Club members give their time and energy for free. The volunteers have quite literally built the Club – refurbishing this hut, a former hospital storeroom, and decorating a run-down inner-city apartment to create a vibrant, attractive space for their headquarters.

Today is an Orthodox holiday and business at the needle exchange is slow. One visitor has already come in with 70 used syringes and taken away 40 clean ones. Last week the same – the logbook shows three, four, six visitors a day, each identified by a club card number. In the deep winter, fewer drug users are up to the trip, so volunteers make home visits. Each of Club Eney’s dozen volunteers takes care of several pritons, or apartments where drugs are used. Two full-time workers, Ivan Shekker and Sergei Kostin, visit the pritons regularly with clean needles. They also bring medical supplies and educational materials.

(left) Sergei Kostin leaving an apartment after an outreach visit to injecting drug users. (opposite above) Ivan Shekker advises a young drug user on preventing HIV at a mobile needle exchange in a busy Kiev shopping area. (opposite below) Sergei and Ivan with volunteers and staff members at Club Eney’s needle exchange point in the hospital grounds.

Monday 6pm Ivan and Sergei arrive to collect a safety box full of used needles from a priton in Kiev’s Svyatoshin district. A young man with blemished skin opens the door into the two-room apartment where several drug users are waiting for clean needles. The hallway still bears the presence of the young man’s dead mother – a vase of dusty paper flowers, and two display cabinets filled with bottles of aftershave and packs of Western cigarettes. The brick-pattern wallpaper has peeled back to reveal black mould.

A young woman in a red sweater emerges from behind closed doors. Sergei hands her a strip of condoms and she throws her arms around him in a theatrical gesture of gratitude. She is one of five who regularly injects here. She also sells sex on the streets of the city.

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The young man reappears with two full safety boxes and is given an empty one in return, as well as a large supply of clean needles and syringes. The two cannot wait to see us out, and set up immediately in the injecting room. Sergei flees to the kitchen. He just can’t bear watching what he has struggled so hard to put behind him.

Injecting drug use in Eastern Europe has grown to epidemic proportions since the early 1990s. Young people experiment with cheap homemade drugs which, in time, are extremely addictive.

The social turmoil of the region is fertile soil for this growing tragedy.

‘There are many contributing factors,’ says Yevgeniy Krivosheyev, founder and president of Club Eney. ’One is emptiness: emptiness of the soul, for want of a better word, which is a consequence of consumer society. All the old accomplishments were destroyed, criticised, rejected. But the new ideas were not so bright. This has created a void into which this young generation has fallen.’

Hand in hand with the drug epidemic has come another of particular virulence: HIV. Statistics suggest that up to 60 per cent of injecting drug users in some parts of Ukraine are HIV positive. But, says Yevgeniy, the prospects are worse; it will be 100 per cent unless something radical changes in the lives of these young people.

Monday 8.30pm Back at Club headquarters the nightly self-help group is breaking up. The tiny clubrooms, with their deep soft chairs, are filled with 16

people talking, touching, relaxing. Some are young and fresh-faced; others have battered faces, missing teeth, dark rings under the eyes.

The meeting room is filled with smoke. Dirty cups and unwashed ashtrays litter every surface. A few people stay behind to talk about what they have gained from the self-help group. The self-help sessions, which are barred to those who have not shared the experience of addiction, are part of a Narcotics Anonymous 12-step programme hosted by Club Eney.

A carefully made-up woman in her mid-thirties speaks. ‘It does help, I don’t know how. It’s about acceptance. It is important for every person to have a chance to speak. Here we are peers, we don’t get judged. It helps, not feeling alone and isolated – face to face with a problem that seems to be bigger than you. HIV and drug addiction are both things that separate you from society.’

A young woman in her early twenties says she has been doing a range of drugs for the past eight years.

Now, instead of hanging out with drug users she comes to the Club every night. ‘I like it here,’ she says. ‘I’m resting… Tonight? It kept me busy. I didn’t use drugs. I did not do anything illegal. It will be another clean day. I’ll go home and I will go to bed.’

The programme has been demonstrably successful.

Many are rehabilitated here, after years of failed attempts. Valentin, the Club driver, made 18 attempts to quit before he joined Club Eney. He says: ‘I was very alone. I lived surrounded by drug addicts – I had lost my sane friends years ago. Here there is an

Evening in a Kiev apartment.

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Building trust by making a ‘love sculpture’. Volunteers and professional counsellors attend a workshop on motivational counselling at Club Eney.

environment of friendship. Perhaps that’s the root of its success.’

Certainly the option of substitution therapy in Kiev is remote. Methadone has only recently been registered in Ukraine, and so far there are no programmes. There are a few state-run substitution therapy programmes using buprenorphine.

In any case, says Ivan, substitution therapy is not helpful for those who are addicted to the stimulants, because of the psychological grip they exert. ‘Here, many people give up alcohol and drugs in a natural way without chemical detoxification. It’s because they have better standards and a supportive community.’

Monday 11.30pm In a side room someone is playing a noisy game on the computer. He is ‘young Ivan’, one of the few openly HIV-positive people in the Club. He has adjusted now, but his early reactions to the diagnosis were intense.

‘I went through two very common illusions,’ he says.

‘The first was, “This is finally a good excuse to stay high all the time because I am going to die anyway.” But it wasn’t any easier for me to find the drug or to get that high. So at some point I changed to the opposite illusion, “Oh my God I have so little time to live I have to do something urgent about it and change my life immediately.” Now I am quite calm about all this. For me it is not a tragedy any more.’

The evening crowd has thinned, but some linger on in the warmth, watching as pop videos blare out from the wall-mounted television. One more clean day is at an end.

Tuesday 10am This morning the Club is buzzing with excitement as participants arrive for a workshop on motivational counselling. Twenty people, volunteers and full-time staff of Club Eney, as well as other NGOs, are learning how to motivate clients to safer behaviour: not to share needles, to go for HIV testing, to go for rehabilitation.

The workshop is staffed by Alliance members and professional trainers from other organisations. They use participatory methods, games and activities to make the points. They speak about life and death, love, fear and ambivalence.

For the professionals it is an eye-opener to hear the strong voices of their client group. The volunteers are excited to have professional input.

Tuesday 11am Back at Clinical Hospital No. 5, Sergei is waiting at the needle exchange, drinking sugary mint tea. Ivan is at the church.

The church is a small room in the hospital building; blazing with light, flowers and icons. One of the icons, ‘Our Lady, the Inexhaustible Cup’, is believed to help drug users, and Ivan carried a small reproduction of it in his pocket when he was trying to quit drugs.

‘When I felt tempted, I prayed to it, and I believe it helped me,’ he says.

When he no longer needed it, he gave it to another Club member.

A sisterhood of the Russian Orthodox Church, devoted to this icon, gives spiritual care and support to drug users in the hospital, as well as their families.

Today Ivan has brought a drug user to the church;

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a young man with haggard eyes, eager to be baptised.

Ivan and the nun discuss the details and plans are made.

Tuesday 1pm Sergei and Ivan are training a new volunteer for one of their needle exchanges. It’s a mobile exchange, near the hospital, and strategically located next to a bus rank and a busy shopping area.

Drugs are also sold around here.

The bright yellow safety box and bulging canvas bag attract inquisitive looks, but today few drug users are venturing out into the sub-zero temperatures – just a friend or two, who stop to chat, and one youthful couple asking for needles. Sergei tells them what he tells all his clients: ‘Have your own syringe, use it once and then dispose of it safely. When you are ready to quit, I will tell you where to go.’

Through the two fixed and seven mobile needle exchanges, Club Eney reaches 1,000 drug users. There are 7,400 registered drug users in Kiev, but Club Eney think the true figure is closer to 50,000. Though they work in only two of Kiev’s 12 districts, they have a long way to go before they reach target coverage of 60 per cent.

‘Our coverage,’ says Yevgeniy, ‘is a drop in the ocean in comparison with what needs to be done. But that does not mean that we are wasting time. We are preparing the soil for many seeds to be grown, for more effective programmes. We are also preparing society for the idea that drug addiction is a disease not a crime, and that punitive policies are not effective. It is better to give them clean needles than put them in jail and kill them. This is a very fresh idea for a Soviet mind.’

Club Eney began as an informal group in Yevgeniy’s house in the mid-1990s. By 2000 they were a registered organisation, and by 2002, the Alliance had come on board as a donor and premises were hired. Since then they have become the leading organisation working with injecting drug users in Kiev.

Wednesday 2am The van turns off the highway and stops outside an apartment block. Sergei and Ivan look up at a broken window, and the dim light signals that the clients are awake. Yulia answers the door. She is holding a table lamp with a long cable that snakes back to the electricity box in the hall. She lives here with her mother Vladimira, and their seven cats, all huddled in the small bedroom. The floor is covered with grimy scraps of paper and other unidentifiable bits. A tinsel Christmas tree leans against the wall of this, the only habitable room of the apartment.

Women from the highway use the apartment to inject, and the Club brings two safety boxes and about 200 syringes here every week. It is also a supply point for condoms.

‘It is good that we now have clean syringes,’ says Yulia. ‘Before, we used to wash them and re-use them.

We are very lucky to have these guys to help us. Ivan brings medicines and bandages too, sometimes even cat food. They are dedicated people. We are very grateful.’

Both women are HIV positive. Only Vladimira has actually been tested, but 19-year-old Yulia knows she must be infected because they used to share needles all the time. Vladimira’s legs are raw with ulcers from the knee down, and Yulia is skeletally thin. ‘My little sparrow,’ Ivan calls her.

With his care they survive, but it is hard to imagine the Christmas tree being in use another year.

It’s probably too late for Yulia and her mother, but their clean needles prevent them spreading HIV to the highway girls, whose condoms, in turn, protect their many clients. Ivan has no doubt about the value of his work: ‘We calculate that it is better to spend $200 on prevention for a “junkie”,’ he says, ‘paying for condoms and syringes and other harm reduction services, than to spend thousands treating a person who is sick and dying. It’s really much better for the population and the economy to have these people uninfected.’

(left) Workshop on motivational counselling at Club Eney. (below) Ivan and a volunteer giving medical advice and condoms to one of the women who sell sex on the highway.

Tuesday midnight Club Eney’s white van heads for the ring road 20 km out of town where there are several groups of women selling sex on the slushy edge of the highway. Tonight the canvas bag is packed with condoms and vitamin pills, as well as leaflets, needles and syringes. The van stops briefly at each group and the women embrace the outreach workers as old friends. One of the pimps calls Sergei over to talk to a girl who needs advice.

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Ivan Skekker: life is good.

CLEAN DAYS IVAN SHEKKER, aged 45, is an outreach worker for Club Eney, and works with injecting drug users in Kiev. He was addicted to alcohol and injection drugs for 20 years, but has been clean for almost five years. Ivan works around the clock and lives in a small storeroom across the landing from the Club, which he shares with boxes and cartons of clean needles and syringes.

He regularly attends a self-help group for recovering addicts.

My life of addiction began in deep Soviet times. I was a student, and it was a time to be carefree and look for pleasure in life. It was hard to feel satisfied with life in the Soviet Union, so I allowed myself to experiment with alcohol and I liked it from the very beginning. It gave me ideas. Within about two years it had become an illness. I also began using opiates, which were very thrilling. I am the kind of person who likes to test boundaries, to take a look beyond.

Soon I was also addicted to opiates. I needed them to feel normal, not just to feel high. I found the recipe to make shirka (opiates) from poppy straw. It was easy and it was cheap, and there were ways to support my addiction. I tried every single drug that was available in the Soviet Union, and this was all accompanied by reading these books of the 1970s – those anthropologists, those monsters, those people who wrote about their research with LSD and other psychotropic substances that were so popular underground. It was a cultural thing.

Later, when I came out of the army, my friends were using stimulants (called Jeff, mulka or white).

They give such a different high to opiates. They seem to be existentially revealing. You feel: ’Just a little bit more and I will find out how it all works, how the world was created.’ We were speaking about God and grace.

When you have this drug for the first time you talk, talk, talk, and you feel marvellous, gorgeous.

Soon we stopped talking about God and began talking about (and practising) sex, which was somehow related. There was a circle, a mystical order of users, and I spent a lot of time with them.

There are people who already know what is going to happen to you and they don’t say anything, they just look at you. They don’t care.

So I played with all the ingredients of this diabolical cocktail – alcohol, drugs, sex in different combinations.

Normal life was nothing compared to this. It’s all about passions, your strong and primitive emotions. The only way you can stop is if you get scared.

I got scared. My central nervous system was destroyed and I knew it. I tried to stop. I turned to church. I was confessed, baptised, given communion, everything. It was difficult, if you think about it, for a drug user – standing for hours in church. I really wanted to stop, but I couldn’t.

I also started going to the 12-step programme (of Alcoholics Anonymous) and it kept me busy. The only way you can get clean is by accumulating clean days: days of waiting. You count the days. You collect them for years.

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Ivan counsels Yulia in her apartment.

Ivan in the Club Eney storeroom which is his home. Living here enables him to keep track of the needle exchange programme and to keep an eye on the premises.

end of my drug-use career. I couldn’t get any pleasure from the drugs any more. In some mysterious way, day by day, my need went away. Now I am fond of the calm life and am able to feel this peace of being clean before God, and for myself. I am very grateful for every day of my clean life and I don’t feel that I am missing anything.

I come here [to the self-help group] to be able to stay clean. Every day I renew this motivation. We all have to understand that it is not a disease that comes easily, in one day, and can be easily cured. No. You accumulate the disease in time and you have to accumulate your recovery. So I couldn’t say, no one could say, that I will stay clean forever. What we saw in the priton today was quite a trial for me. Who knows if I am able to stay clean tomorrow?

I have good relationships with those who are still actively using, who are not clean. Because if I have pride, and feel myself better than they are, it is not going to do any good. I understand very well how thin the straw is that I am grasping – how narrow the margin between them and me. There can still be entrapment for me; there are still drugs that come to me in my dreams at night. I still want them.

At Club Eney there are many people who have a long record of sobriety. This is very important because they set an example. It is compassion that brings people together and keeps them together. It is brotherhood – people who have gone through the same circles of hell. You know it is possible because you see that some people have gone through it and succeeded, and are happy. And it’s good to see those younger ones start recovering and getting better. It is very important to have each other.

But it is very, very hard not to want drugs after you have already tried them. Because drugs allow people to experience feelings and emotions that they would never have in their normal lives. But when people have suffered enough there is a chance that they will stop. It is difficult, but possible. When they have ruined their health, when they have offended everyone around, when they have hurt their loved ones, when they have lost a lot of money, when they have ruined everything in their lives… there may come a point when they can hold onto sobriety.

In order to treat this disease we have to lead it out from the underground. Because who are the first casualties in this war with drugs? Bright, talented clever people: they die first. I have buried many of my friends – I don’t have enough fingers and toes to count them: my friends with all their gifts and all their genius, and all their brilliance.

For a long time I wasn’t keen to know my HIV status. Knowing is no longer a fetish for me. I prefer to live without things that are not needed. There are also plenty of reasons not to know – you become criminally responsible for infecting others. Besides what’s the hope, there’s no treatment. There’s nothing good that can come of knowing.

This summer I decided to get tested. It was obviously not good news. The CD4 count is not good.

The disease is in the AIDS stage.

But it is not hopeless. I am holding on, I have hope there will be a cure. And you know what, I feel great.

I feel like I am 25 years old, and in the past ten years I have not been ill. Now I feel calm and confident. I don’t need anything more. No need to live through those cycles, those torments. Life is good.

l’Environnement et le Développement de Nosy-Be (PFED) • Presqu’lle de Masoala (PRIMAS) • SOMANEVA • STOP SIDA Nosy-Be • STOP SIDA Tamatave • TAHIRY SOA • Mauritania • Terre Vivante • Association Stop-SIDA • Mexico • APROASE • AVE de Mexico • CASA TOLUCA • CD4 • CISC • Colectivo Sol • El Significado de Vivir • FRENPAVIH • Fundacion Mexicana de Lucha contra el SIDA • Gunaxhii Guendanabanii • Huatulco Unido • La Manta de México • Mexfam – Peulda • Red Mexicana de Personas Viviendo con VIH/SIDA • UNASSE • Unidos por Amor • Vivir con Dignidad • Xochiquetzal • Mongolia • Adolescent & Junior Club • Adolescent Future Centre • AIDS/STI Department of National Infectious Disease Centre • Association Against Alcoholism and Drug Abuse • Association of School Social Workers Mongolia • Mongolian Women’s Federation – Bayan-Ulgii Province • Children Life Skills Centre • Darkan Uul Trust for Women Association • Darkhan Uul Railway Women’s Council • Darkhan Uul Women’s Federation • Destiny • Equal Step Centre • Era • Gal Golomt

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Amazons on the frontier Prevention with transgender and other key groups in Ecuador Blaring disco music and a bright neon sign advertising salon D’Faby alert passers-by to the newest shop on the block. But though it is Saturday morning, the busiest time in any hairdresser’s week, salon owner Fabiana Pérez is preparing to go out.

Fabiana is the prime mover behind Amazonas, a new organisation doing HIV prevention work among travestis (transgender) in Guayaquil, Ecuador.

Amazonas works with two main transgender groups – sex workers and transgender hairdressers. Although most transgender sex workers already use condoms

with their clients, unprotected sex with partners is an ongoing problem. Transgender hairdressers may be at even greater risk through casual sexual encounters with clients.

Today Fabiana is planning to visit members in El Guasmo, one of the poorest parts of the city, which is home to many transgenders. It is also a hot-spot for HIV infection.

Fabiana’s first stop is the bright blue shop front of Jennifer Alvarado, an experienced events organiser who runs the transgender soccer team as well as the annual Miss Transgender Pageant. As usual, Jennifer comes up with some good advice on how to motivate ‘the girls’ to come to meetings. Her suggestion: a ‘Lady’s Night’, an informal weekly get-together for ‘the girls’ and their partners at the Amazonas office, next to Fabiana’s salon. This event will be an opportunity to 22

socialise, play bingo, eat and drink, as well as to discuss more serious issues.

Fabiana spends the morning canvassing opinions up and down the busy streets.

‘Let’s rather call it “Amazon’s night”,’ says Shannellee, a salon owner several blocks away.

‘If they think it is a romantic thing, they will come.’

Fabiana agrees. They discuss days and dates, and what to bring: some say cocktails, some say condoms, but so far everyone is enthusiastic about the plan.

‘Transgenders like to have fun,’ says Fabiana, ’more than they like to care for themselves. They lose interest when it comes to serious things like prevention and education. The invitation we made for our first meeting [the previous week] looked too serious and nobody came. Then I redesigned it with lots of colour so that it looked like a party invitation and it was a great success.

Now they are making suggestions for new activities and are a lot more interested.’

Amazonas was the brainchild of 21-year-old Fabiana, who has turned down a law scholarship to get the organisation off the ground. She knows this community and its problems intimately, having worked in salons and as a sex worker since she left home six years ago. Though the goal of the organisation is to prevent HIV, initial activities must focus on building the organisation, and the only way this can be done is to ensure it meets immediate needs. For the transgenders of Guayaquil, these are issues to do with sexual identity, human rights and partner violence. HIV comes low down on the list.

‘HIV is not really a problem for the girls as long as they don’t hear about anyone they know who is infected,’ says Fabiana. ‘Sometimes they hear about a girl who died and maybe they are careful for a while, but then they forget about it.’

While the defence of sexual diversity is an immediate priority, the organisation is planning to integrate HIV prevention at every step. Consistent condom use with clients and partners will be encouraged, and condom vending machines will be installed at hairdresser shops.

Fabiana’s interest and concern with HIV was born out of a chance encounter with an NGO working on the streets of Guayaquil. In time she found herself attending meetings, and soon was invited to a workshop in Quito.

There she met members of Alliance linking organisation,

(left and opposite below) Fabiana Pérez. ‘The first time I was made up as a woman, I looked in the mirror and thought, “Yes, this is me!”’

Hairdresser shops are the best places to reach Guayaquil’s transgender population. (opposite clockwise from top left) Salon D’Faby; Fabiana discusses the upcoming Amazonas meeting with Vanessa, Shannellee and Jennifer at their salons in El Guasmo suburb to the south of the city.

National Movement • Gal Golomt National Movement – Orkhon province • Galt Foundation in General Department of Police • Journalists against AIDS Club • Liberal Women’s Brain Pool – Selenge province • Liberal Women’s Brain Pool – Zamiin Uud, Dornogovi Province • Liberal Women’s Brain Pool – Bayan-Ulgii Province • Liberal Women’s Intellectual Foundation of Ulaanbaatar • Mongol Vision • Mongolian Child Rights Centre • Mongolian Children’s Centre – Dornod Province • Mongolian Democratic Women’s Association • Mongolian Family Welfare Association • Mongolian Red Cross • Mongolian Volunteers’ Association – Dornod Aimag • Mongolian Youth Development Centre – Bayan-Ulgii Province • Mongolian Youth Development Centre – Ulaanbaatar • Mongolian Youth Federation in Bayan-Ulgii Province • Monoglian Volunteer’s Association • National Centre Against Violence – Selenge Province • National Centre Against Violence – Dornod Province • National Centre Against Violence – Tuv Province • National Network of Implementation of Convention of

Elimination of Discrimination Against Women – Orkhon Province • Mongolian Red Cross Association in Orkhon Province • Mongolian Red Cross Association – Bayan-Ulgii Province • Mongolian Red Cross Chingletei District of Ulaanbaatar City • Mongolian Red Cross Society – Uvs Province • Red Ribbon Association • Rural Development – Community Participation in 21st Century • Rural Women’s Development Foundation – Khovd Province • Scout Association of Mongolia • Setgel Zui Center • National Centre Against Violence – Shariin Gol branch of Darkhan Uul Province • Students’ Federation of Mongolian University • Youth Development Policy Centre • Women’s Council of Ulaanbaatar City • Youth and Health • Uils Tegsh • Morocco • Association Afoulki pour la Femme/Tahanaout • Association Aides et Secours, Tanger • Association Al Assas de Culture et de Développement – Guercif • Association Chantiers Jeunesse Maroc • Association Darna/Tanger • Association de Développement et d’Environnement – Béni Tadjit • Association de la Protection de la

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Kimirina, which at that time was preparing the Frontiers Prevention Project.

The Frontiers Prevention Project, which also operates in India and Cambodia, is designed to reduce HIV infections in relatively low-prevalence countries. In Ecuador, HIV prevalence is estimated to be below 1 per cent of the general population, though there are no accurate studies. HIV is thought to be confined largely to key populations, such as people who sell sex and men who have sex with men. The Frontiers Programme aims to provide a comprehensive package of interventions for these key groups, as well as people who are already living with HIV and AIDS. Fabiana became a member of the research team sent out to understand the lives and needs of these key groups in her region. Through this experience, she learnt about the vulnerability of her own and other

24

groups. She also had her first encounters with people living with HIV. ‘I had phobias because of ignorance,’ she says.

‘It was the fear of not knowing what to expect. But with the training and the sensitising I learnt that I could touch them and talk to them and that I was not going to get infected in that way.’

‘One of the things I had to work on was the stereotype that a person with HIV is very thin and dying. In the workshop they asked, “Who do you think is the HIV-positive person here today?“ And everyone guessed that it was me, because I am so thin. But it turned out to be the healthiest-looking man in the room!’

For Kimirina, bringing together these key groups was a gamble that paid off. Says Margarita Quevedo, Director of Kimirina: ‘Three very stigmatised groups were involved; in fact they stigmatised and discriminated against each other, but having been together made an incredible difference in establishing each other’s realities. There is no doubt that they were strengthened by discovering each other. It was very useful.’

Not only was it useful for them, the peer researchers turned out to be good at their jobs – very good indeed.

They had access to communities and places that heterosexual and/or professional consultants would not have reached. Their insights gave Kimirina a nuanced understanding of the target groups, which is essential to successful prevention work.

Walter Ronquillo, Director of Vida Libre, a leading group working with men who have sex with men in Guayaquil says:

(left) 11am: Fabiana travels by taxi around the city to recruit new members for Amazonas. (below) 10pm: Fabiana (centre) talking to transgenders selling sex on the streets of Guayaquil. (opposite above and below) 1.30am: The Penthouse nightclub.

Fabiana advises peers about safe sex and HIV.

Famille/Marrakech • Association de Lutte Contre le SIDA/Agadir • Association de Lutte Contre le SIDA/Casablanca • Association de Lutte contre le SIDA/Essaouira • Association de Lutte Contre le SIDA/Marrakech • Association de Lutte Contre le SIDA/Meknes • Association de Lutte Contre le SIDA/Safi • Association de Lutte Contre le SIDA/Taroudant • Association de Lutte Contre le SIDA/Tetouan • Association des Amis de l’Environnement • Association des Cadres et Anciens Eleves de Beni Tadjit • Association des Cadres et Anciens Eleves de Tendrara • Association des jeunes promoteurs et entrepreneurs d’El Klâa des Sraghna • Association Ennakhil pour la Femme et l’Enfant • Association Illigh pour le Développement Casablanca • Association Intalaka pour le Développement et l’Environnement Rural/Aïn Louh • Association Krazza de Développement Rural/Béni-Mellal • Association Marocaine des Amis san Frontieres • Association Marocaine des Jeunes Contre le SIDA • Association Mouvement Twiza • Association Oued Srou • Association Pan

‘It is truly complicated. The transgenders must be addressed in a different way to men who have sex with men; and the men who have sex with men who are masculine, must be addressed differently to the ones who are not. And among the MSM who are masculine, it is necessary to address the older ones differently to the youth. It’s a very complicated issue.’

It was a two-way trade. Many of the researchers took their learning back into their own lives.

‘The result on a personal level was amazing in many instances,’ says Margarita. ‘People decided to go back to school, one HIV-positive woman decided to fight to keep her kids, another decided to fight the social security system to access antiretroviral treatment, which she had a right to but had not got.

A new consciousness was created for many.

‘Initially it was taking so long and we were explaining that by saying “the process itself is an intervention”. It truly was an intervention. It made a great difference to people’s lives.’

Fabiana was one of the people for whom this was a life-changing process.

Through her work on the first assessment phase of the Frontiers programme she decided that there was a need for an organisation dedicated to working with transgenders. With encouragement from her peers in

the programme and support from Kimirina she embarked on the daunting task of writing proposals.

After several attempts, the proposal was approved, funding granted and Amazonas was born. It is now one of eight organisations in the early implementation phase of the Frontiers programme.

Again and again the participatory approach brings new learning and new energy to organisations.

Whether they are injecting drug users, transgender hairdressers or sex workers on the streets, it is the special insights of these groups that hold the key to prevention success.

Africaine de Lutte contre le SIDA/Tanger-Tetouan • Association Sidi Mokhtar de Culture, Développement et de Solidarite • Association Tichka • Association Wargha pour le Développement et la Coopération – Wargha/Beni ooulid • Centre d’Etude et de Recherche sur les Drogues et l’Environnement – Rabat • Fédération des Associations de Développement de Ben Gurir • Organisation du Scoutisme Marocain Musulman/Sale • Organisation Pan Africaine de Lutte Contre le SIDA/Fes • Mozambique • Associação Nacional para o Desenvolvimento Auto-Sustentável (ANDA) • Kubatsirana – Ajuda Mútua • Mozambique Network of AIDS Service Organisations (MONASO) • Organização da Mulher Educadora do SIDA (OMES) • Rede Nacional de Associações de Pessoas Vivendo com HIV/SIDA (RENSIDA) • Nigeria • Alliance AIDS Initiative • Amicable Services • Anti Aids Club, Obafemi Awolowo University Teaching Hospitals • Bijoux Organisation • Centre for Development and Health Promotion • Centre for Rural Family Advancement • Community Health

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Citizens and human beings The Association for the Defence of Women, Quito, Ecuador The Association for the Defence of Women (ASOPRODEMU) represents women who sell sex in Quito and is an active participant in the Alliance’s Frontiers Prevention Project. In these early stages of the project’s development, ASOPRODEMU is focusing on basic HIV prevention education, as well as advice and counselling for its nearly 900 members.

Isabel Molina was voted President of the Association in March 2003.

Every day she visits women on the streets and in the brothels to the south of the city. With her own 12 years’ experience of selling sex, she is well able to understand their problems and represent their position in meetings and negotiations with the authorities.

Isabel Molina and ASOPRODEMU members outside the office in the historic centre of Quito.

All in a day’s work. (opposite, clockwise from top left) Isabel with older members in Ave 24 de Mayo; advising young women about the benefits of joining the association; greeting a long-standing member of ASOPRODEMU; talking to a member of the municipal council about the tolerance zones where her members may legally work; meeting members at a brothel to the south of the city; discussing the sex trade with the Police Inspector; sharing a joke with on-duty policemen; visiting the building site of a house which ASPRODEMU wishes to own.

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Alliance • Community Health Concerns Group • Concerned Group for Neighbourhood Health and Education • Egbeda Voluntary Health Workers Action Group • Environment Development and Family Health Organisation • Family Health and Development Initiatives • Family Health and Population Action Committee • Goodworker Movement International • Health Shields • Life Support initiatives • Life Vanguard • Multiview Advocacy Network • National Youth Service Corps Anti AIDS Club • Nigerian Center for Rural Youths Development • Obafemi Awolowo University Action Committee on HIV/AIDS Prevention and Care • Osogbo Traditional Council • Positive Life Association of Nigeria • Primary Health Care & Health Management Centre • Rays of Hope • The Repairers International • Women and Development Movement • Youth for Christ • Pakistan • Vision Pakistan • Philippines • ABYAN • Action for Health Initiatives, Inc • Agos Inc • AIDS Council for Negros Occidental Welfare • AIDS Society of the Philippines • Alagad Mindanao – Alliance Against AIDS in

Mindanao • Alternative Law Research and Development Centre, Inc. • Associates for Integral Development (AID) Foundation • Baguio Center for Young Adults • Ben Hur Mobo Move Aklan Forward Foundation • Bicol Organisation for Youth Services Foundation, Inc. • Can’t Live in the Closet Inc • Cebu Youth Center Inc • Community & Family Services International • Community Extension Service Office-Liceo Center for Community Development • Community Health and Development Inc • Contract Workers Alliance • Foundation for Adolescent Development, Inc. • HDES • Higala Association Inc • HOPE Volunteers Foundation Inc • Institute of Primary Health Care • IWAG DABAW INC • Kaabay Inc • Kaaraydan Kang Antiqueno Foundation Inc • Kalupunan NG MGA Samahan SA Kabite • Kasiglahan Foundation Inc • Kasiglahan-Pakikibahagi Partnership Network • Kaugamaon Center for Children’s Concerns Foundation Inc • Lorma Community Development Foundation Inc • Marina Clinic (Silliman Univ Medical Center Extension Service Unit) • METSA Foundation Inc •

27

Hope and salvation Preventing HIV in Crimea A lone man sits nursing a beer in a smoky basement room. Most of the formica tables are empty at this early hour, but in the corner of the room a group of young women is engaged in animated conversation.

This is the Axe Bar, one of the popular meeting places for women who sell sex in Crimea’s capital city, Simferopol. It is also the place where they meet with outreach workers of the Hope and Salvation project, who bring them fresh supplies of condoms and piles of educational leaflets.

Hope and Salvation was started in 1997 by two colleagues at the Simferopol AIDS Centre in response to the rising incidence of HIV. At this time the concept

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of NGOs in that region was a fresh one, and Sasha Yatzyuk and Sasha Ganul worked on a voluntary basis.

Initially they worked with injecting drug users, but soon they made contact with women selling sex on the streets nearby the Centre.

‘The more we found out about their lives the more compassion we felt,’ said Sasha G. ‘They were mostly from out of town and were uneducated and unemployed. Up to 70 per cent were single mothers.

They were in a powerless situation and were unhappy about the nature of their work.’

Few of the women had any knowledge about HIV, and the project immediately began developing

The Axe bar, Simferopol. Sasha Yatzyuk and members of Hope and Salvation getting to grips with legal rights, medical problems and correct condom use.

Neighbors Population & Development Services • Nonoy Librado Development Foundation • Olongapo City AIDS Foundation Inc • Options for Living Foundation Inc • Pagtinabangay Foundation Inc • People Managed Health Services & Multi-Purpose Cooperative • Philippine National Red Cross Zamboanga • Philippines HIV/AIDS NGO Support Programme (PHANSuP) • Pinoy Plus Association Inc • Positive Action Foundation Philippines Inc • Process Foundation Inc • Process Luzon • Remedios AIDS Foundation, Inc. – Youth Zone Cebu • Social Health Environment and Development Foundation • Star Bodybuilders’ Foundation Inc • Talikala Inc. • The Library Foundation • TRI-DEV Specialists Foundation Inc • University of Bohol Family Care and Lying-In Center • University of Southern Philippines Foundation, Inc. • USWAG Development Foundation Inc • WEDPRO • Sénégal • Action de Formation et d’Education pour le Développement (Diourbel) • Action et Développement • Action et Enfance Développement • Action Jeunesse Insertion et Reinsertion de la

Sasha and outreach worker Pavel Sorokovik provide counselling, condoms and clean needles for drug users who sell sex at the side of the road.

appropriate educational materials and distributing them, along with free condoms. Soon they were able to provide project members with free, anonymous testing and treatment for sexually transmitted infections at the AIDS Centre.

Susannah, aged 22, is one of the women who uses the services of the programme. ‘I heard about the two Sashas from the other girls, and then I met them in the bar where they were handing out literature,’ she says.

‘I couldn’t believe it. Here was a serious organisation that cared about our problems and was able to give us useful knowledge. It made me feel better about myself. I just couldn’t believe that they were giving out condoms for free!’

The project was already well established when the Alliance came on board in 2001. But their relationship with the Alliance helped them shift the focus of their work more towards safe sex skills and professional training. The Alliance encouraged them to employ people from the sex trade to work as outreach workers. Three young men and two women are now employed on the project.

Rita Stratonova, who is 31, joined the project in 2001 after having attended an HIV prevention workshop in Kiev. She was inspired. After returning to Simferopol she asked for a job at Hope and Salvation. When she heard there were no vacancies she was not put off.

‘I chased Sasha for more than six months because I wanted to work,’ she says.

Now Rita goes out with a colleague five times a week to distribute condoms and speak with the women about how to stay healthy and safe.

When Rita first began working, it was difficult to get women interested, but by providing them with useful tips about their legal rights and how to deal with violent clients, she won them over.

‘The most useful things I have learnt have been

the tips about violence and HIV prevention. Now I am a lot more careful,’ says Susannah.

Rita also shares the skills she learns at workshops and training courses with her colleagues. For example, a useful technique for clients who reject condoms: ‘At one workshop I learnt how to put a condom on without letting the client know,’ she says. ‘You can do it without using your hands. When they discover, they have different reactions. Some laugh to find that they have been tricked. Others are violent; but usually they don’t even notice.’

There is a high turnover in this life, and there are always new members and more work to be done.

‘Each year about one third drop out,’ says Sasha G. ‘New girls come and old girls move on. It’s very hard work. They smoke and drink a lot – it’s easier to work when you are drunk.’

Commune de Kolda • Actions Civiles Internationales • ADEBAF • ADM de Diourbel • ADYD de Linguere • AFAAD • AFFEDGE • Agence Bibi International • Agents de Santé Communautaire de Niankite • Agents de Santé Communautaire de Saraya • Agents de Santé Communautaire de Suelle Niankitte • Agriculteurs Sénégalais et Développement International • AJAC de Kolda • AJPS de Rufisque • AJTPD • AJUPED • AJUR de Kaffrine • ALAA Sida • Alliance Mutualiste de Garantie, d’Epargne et de Credit • Alliance Nationale de Solidarite • Amicale de la RTS • Amicale des Femmes de Dieupeul • Amicale des femmes des groupements de promotion féminine des parcelles assainies • Amicale des Jeunes Catholiques de Leona • Amicale des Jeunes Cité Enseignants • Amicale des Jeunes de Front de Terre • Amicale des Jeunes de Kanene • Amicale des Jeunes de la Cite Marine II • Amicale des Jeunes de Liberte IV • Amicale des Jeunes Femmes de Fatick • Amicale des Programmes de Nutrition Communautaire de Kedougou • Amicale des Volontaires d’Appui a la

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Window of hope Preventing HIV among young people in Zambia ‘Youth are the window of hope for Zambia, if only they are HIV-free’. Bold script on the wall next to the blue metal gate spells out the mission statement of the Bauze Community Centre.

Bauze is a project of Africa Directions, a youth-led NGO established in 2000 in the buzzing compound of Mtendere, Lusaka. The main aim of the project is to provide sexual health education for the youth of the area through its vibrant recreation centre. Its diverse activities attract over one hundred young people of all ages every day.

Today, members of the karate club are attending a peer education programme, which will help them reach the karate kids of Lusaka with HIV prevention messages. After a role-play about the story of an unfaithful husband, and a mock question-and-answer session, the group engages in a period of self-criticism.

The only female has complaints about the script, which she feels is too favourable to the errant man. Others lay into the facilitator, criticising him for talking too fast, for not moving well enough… and other things besides.

‘At least I allowed everyone to ask a question,’ he answers in his defence.

Reluctantly they agree: ‘Yes, OK, you are a good facilitator.’

Africa Directions is a programme run by and for young people. As the sign on the door points out, persons over 25 years of age are not welcome. Even staff members have to be younger than 35 years on joining. Young people play an active role in managing all programmes.

‘Young people feel that this is their place,’ says Project Director Evans Banda. ‘Peers deal with their peers, and they trust them.’

Banda, a former editor of a youth newspaper, got the idea for the centre when visiting a similar project in New York in 1999. The following year, an invitation to a youth conference in Addis Ababa gave him the opportunity to crystallise the idea with a group of young Zambians who accompanied him there. Young people were involved in the project from its inception.

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One of the key members of the team was Mark Chilongo, aged 22, now Senior Projects Officer for the programme. Mark began as a volunteer peer educator with a theatre group at the age of 16.

‘It was a Sunday morning and I was coming home from church when I heard drumming,’ he remembers.

‘I went in and sat down. I was really very young, but they gave me a week to prove myself. You know, I was brought up in this community and I understood all the problems. I just wanted to contribute to the fight against these vices.’

Mark and two other peer educators helped Evans establish the Centre. The Zambian Integrated Health Programme (a multi-partner programme including the Zambian Government, USAID, and the Alliance) took the Centre under its wing. They suggested a survey to see what kind of programme the community

(above) The Africa Directions Karate Club with the certificates they have earned from the peer education training course. (below) Mark Chilongo rehearses a play about stigma with the drama group, which they will perform for traditional leaders.

Gestion Urbaine • AND BOKK YAAKAAR • And Liguey • ANHMS • Animation et Appui pour le Développement Participatif des Communautés • APEVF Podor • APEVF, Cellulle Fanaye • APM Conseils de Matam • ASASOCK • ASASSFA • ASC Bamtaaré de Souima • ASC Bokk Jam • ASC Cosaan de Sangalkam • ASC Cosmos Louga • ASC Darou Salam de Guediawaye • ASC de Bambey • ASC de Grand Medicine • ASC Deggo Comberene • ASC Deggo de Podor • ASC Deggo Ouakam • ASC Deggo Sor Saint Louis • ASC Deggo Tambacounda • ASC des Griots de Louga (Guewel Louga) • ASC Diamano de Kaffrine • ASC Djignabo Ziguinchor • ASC Entente de Tattaguine • ASC Entente II • ASC Foyré Médine • ASC Gestu de Takh • ASC Golf Sud • ASC Gourel Serigne • ASC Hamo 4, 5 6 • ASC HLM Fass • ASC Jaaji • ASC Jakarloo de Louga • ASC Jaloore • ASC Jaltaabe de Mbodienne • ASC Jambar – Quartier Bambara Escale/Kebamer • ASC Jambars • ASC Jant-Bi • ASC Japoo • ASC Jaxaan • ASC Jubbo • ASC Kawsara • ASC Las Palmas de Guediowaye • ASC Lat-Dior • ASC

really wanted. The team went door to door; they addressed churches, talked to teachers and shopkeepers – and most of all they canvassed the young people of Mtendere to see what they really needed most.

‘The common answer people gave was that there was a need for a recreation centre for young people,’ says Mark. ‘They wanted games like netball, football, table tennis, chess and scrabble.’

With a modest grant they purchased and renovated these buildings in the heart of the community. By 2001 their doors were open. Their goal was to reach 20 young people a day. But in no time the numbers were four times that.

HIV/AIDS education is integrated into all aspects (above) The drama group performs an HIV education play at the market place. (right) Mark receives the customary birthday greeting from his peers.

of the Centre’s work. For example, the games room, where young people can play pool in an alcohol-free environment, has regular visits from peer educators who give impromptu talks and answer questions about reproductive health problems. All peer educators are trained to be able to cope with a wide range of questions and challenges.

At all times there is a peer educator at the information desk in the large courtyard. A range of printed materials on HIV and sexual health issues, as well as condoms, is also available here.

Across the courtyard a large multipurpose room is used for conferences, video shows, dance competitions – you name it. Today, because it is Thursday, this room hosts a very well-attended mother-and-child health clinic, where trained community health workers advise mothers on basic health care and diet – as well as HIV information.

Babies are weighed and monitored, and those who are obviously ill or failing to thrive, are referred to the clinics, which provide skilled care as well as HIV counselling.

In the other yard across the street, a drama rehearsal has begun in earnest. Attracted by the drumming and the traditional songs, clouds of little children gather. Today is the rehearsal of a play for World AIDS Day. A large group of chiefs have been invited to a workshop on HIV/AIDS, and this play is the main entertainment of the week.

For many, a visit to the Centre is a highlight in the monotony of compound life.

Lebougui • ASC Maan Djel • ASC Magg Daan • ASC Mbédéme • ASC Naayo de Nawel • ASC Ndoune Salane • ASC Peccumi • ASC Penc • ASC Pencum Dangu Kakalam • ASC Rico de Median Sabakh • ASC Tantadji de Matam • ASC Wagane de Bentegnier • ASC Walidane • ASC Xandalu • ASC Yellitaare Mboumba • ASC Yoff Mbenguene • ASDES Kaolack • ASDIL/Sahel • ASPB • Association des Professeurs pour la Vulgarisation de la Lutte Contre le SIDA • Association Femmes et Jeunes Diaspora Africaine Dev. Socio Educatif et Agricole de l’Afr • Ass Sénégalaise pour la Promotion et la Regulation de l’informel et l’emploi • Association And Defar Touba Diamaguene • Association Anti-Sida, Paludisme et Bilharziose • Association Artistique et Culturelle Kindi Kamal • Association Bidew Bi • Association Bokk Diom de Niary Tally • Association Bokk Xalat • Association Clinique Counselling de Tambacounda • Association Culturelle et Artistique Kaddu – Gui • Association Culturelle Faggu • Association Daan Sa Doole • Association d’Action Sociale des Femmes de Rufisque •

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‘Before I just used to come home from school and sleep and smoke,’ says 18-year-old Chilufya Chimbala.

‘I have cut down on smoking since coming here. I have also learnt a few things about drugs and HIV. It keeps me busy and I get entertained.’

The resource room is a haven for young people who do not have a good home environment to study, or access to books and magazines.

‘Where I live there is a bar and they play music very loudly every day,’ says Lilian Bwalya. ‘Before, many of these kids were in the bars; now they have a better place.’

Alcohol is a big issue for these young people, and it increases their vulnerability to HIV. Life is hard, and alcohol represents one of the few distractions in a place like Mtendere. In fact, in this compound there are 47 bars to 16 churches – and three HIV/AIDS projects!

When the Centre first started there were no rules about drinking, but when kids started coming in drunk, others complained and soon they were banned.

‘There is a lot of peer pressure to drink in this community,’ says Mark. ‘You find kids of 13 hanging out in bars. They are noisy and insult their teachers.

They have a lot of sex with multiple partners and get involved with theft to support their habits. It’s a big challenge to deal with a child of that age who is already addicted to alcohol. You have to rebuild him.’

As well as providing an alcohol-free environment for young people, project staff are also trying to ensure that land zoned for recreation does not end up in the hands of the bar owners.

Africa Directions provides a desperately needed resource for young people in this harsh environment, and while they are enjoying themselves, they are also learning new skills and building confidence – and more importantly, learning about HIV/AIDS and how to prevent it.

Though it is too soon to evaluate the impact of Africa Directions on youth HIV prevalence, there is

(left) A peer educator demonstrates correct condom use to karate club members (below left) Small children from the neighbourhood enjoy the activities and atmosphere of Africa Directions.

evidence that these sorts of programmes are working.

The past two antenatal HIV surveys in Zambia have shown decline in youth HIV, especially in Lusaka and Copperbelt, which host many youth prevention programmes.

In high-prevalence countries like Zambia, it is young people who are on the frontIine of HIV. They are the most vulnerable to the disease, but empowered and informed young people are also its strongest enemies. (left) Snooker players pause for a question-and-answer session about sexuality and HIV with a peer educator.

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Association d’Appui aux Handicapes Visuels • Association d’Appui de Formation aux Adolescents • Association de Diamaguene ‘La Maison Blance’ • Association de Jeunes Amis de Sicap Liberte 2 • Association de Jeunes Filles pour le Bien-être de Podor • Association de Jeunes Guiots de Louga • Association de Jeunes pour le Partenariat • Association de la Jeunesse pour la Promotion Economique et Sociale • Association de Lutte contre l’Inactivité et la Délinquance par l’Education et la Culture • Association de Nyassia • Association de Sauvegarde de la Population du Fleuve – Saint Louis • Association d’Education Populaire et de Promotion Culturelle – Sine Culture • Association d’entraide de femmes catholiques – Saint Louis • Association des Agents de Santé Communautaires de Bignona • Association des Agents de Santé Communautaires du Diakha de Bandafassi • Association des Agents de Santé Communautaires Ouonk • Association des Amis de l’Environnement de Podor • Association des animateurs socio-culturels de Kaolack • Association des Animatrices de

Learning from each other

Peer educators from five youth organisations in Lusaka visit each other’s programmes to share experiences. (above) The pre-school at the Society for Women and AIDS in Zambia (SWAAZ). (below) A game of tag designed by Sports in Action to educate youth about HIV.

Despite its tender years, Africa Directions has been elected by the organisations in the area to be the focal point for HIV/AIDS. Today, peer educators from five organisations are meeting to share their experiences about HIV programming in the area. Peer educators Nelson and Pamela show them around the Centre. The young people from other organisations are brimming with questions.

‘Do you allow boy-girl relationships?’

‘What do you do with unruly youths?’

‘Do you teach the little ones about defilement?’

After the tour of Africa Directions the group crams into a minibus and heads off to SWAAZ (Society for Women and AIDS in Zambia) an NGO that was developed to support widows and

orphans of HIV/AIDS. SWAAZ also identifies vulnerable families for food aid, provides pre-school education and school bursaries. They support a lively drama group that spreads HIV prevention messages across the compound.

Sports in Action is next on the agenda. Here they introduce physical education into the school, as well as talking about HIV/AIDS. In the sports ground adjacent to Burma Basic School, peer educator Mara Michelo explains the principles of the project.

‘We teach kids traditional games and talk about HIV/AIDS as well. Every game has an HIV integration,’ she says. ‘For example, the field games, which are mainly based on tag, are used to demonstrate a chain of infection. It starts with one person who tags others, who are made to crouch down. Soon the whole field is infected. This shows the virus can start with just one person but soon everyone is infected.’

In no time, Mara has the peer educators tearing around the field.

Next they are tapping out intricate traditional games with beads and seeds. The most popular, Agode, is a game that can be played in a sandy yard with just stones as props.

Players sit in a large circle and to a rhythmical chanting of the word ‘Agode’, each taps a stone on the ground three times before passing it on to the neighbour. The speed of the chanting increases and soon there are some people who are unable to pass quickly enough, and piles of stones are mounting.

Then Mara shouts ‘stop’, and invites them to interpret the meaning of this game in the context of HIV. ‘The stones are knowledge about HIV,’ is one suggestion, ‘and you must pass it on. If I have lots of stones I am selfish. Some people have knowledge but they keep it to themselves. In every house there is one person who knows something and they must pass it on.’

Kedougou • Association des Bacheliers pour l’Emploi et le Développement • Association des Bienfaiteurs – Guinguineo • Association des Fans du Super Diamano • Association des Femmes Action Stop SIDA • Association des Femmes de la Medina • Association des Femmes Enseignantes de Saint Louis • Association des Femmes et Jeunes de la Diaspora pour le Développement Socio Educatif et Agricole • Association des Femmes Gestu • Association des Formateurs en Langues Nationales • Association des Jeunes Catholiques de Darourahmane • Association des Jeunes de Bandafassi • Association des Jeunes de Diatar • Association des Jeunes de Dieuppeul • Association des Jeunes de Dogui Dombi • Association des Jeunes de Fass-Guendel • Association des Jeunes de Fongolimby • Association des Jeunes de Koungheul Ville • Association des Jeunes de Mboumba – YELLITAARE • Association des Jeunes de Medina Sabuleh pour le Développement • Association des Jeunes de Wakhinane Pikine • Association des Jeunes de Yeummeul pour la Promotion Sociale •

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YOUNG AMBASSADOR CHAMA MUSOKA, aged 26, was diagnosed with HIV in 1999. He is the co-ordinator for the outreach programme of Kara Counselling and Training Trust, Lusaka, Zambia, which provides counselling and support for people living with HIV/AIDS. He is also Vice President of the Young Ambassadors of Positive Living, a Commonwealth peer education programme.

It all began when I was at university in 1997. I got into a kind of life where I spent a lot of time in the bars and devoted little time to my studies, and that led to me failing my first year. Before that I was a model scholar, I was even an altar boy in the church.

In 1998 I was living with my sister, as my mum had passed away some years before. I was loafing, and then I got tuberculosis (TB) and was in treatment for about a year. At the end of the treatment I realised it was important to take an HIV test, so I went to the clinic and found that I was HIV positive. But you know the surprising thing was that although I had suspicions, because of my past life, I just could not believe it.

HIV was such a big thing for me. So I just denied the results. Then a second was done and the same results came back.

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My sister noticed my state of confusion and asked me what was going on in my life. She said, ‘You are not the same Chama.’ I didn’t say anything. My sister was the first-born and she loved me so much. But it happened one day that she was washing my clothes and she discovered this slip from Kara Counselling, which said I had been for an HIV test. She asked me directly about the result. I thought for a while and I decided, ‘She is just like a mother to me, let me tell her.’

When I told her the results were positive she just went off to our neighbour’s house without speaking.

And that was the start of troubles. You know, she loved me before, but she changed into this woman who was a stranger to me. And then she actually sent me out of the place. She also sent a message around to the relatives so there was no one that was happy to have me to stay. So I went to stay with friends. I just moved from one house to another.

Eventually I went back to my counsellor and he told me about Hope House, which is the oldest safe place for people with the virus in Zambia. So I was recruited and began doing a tailoring course there. You know, from studying Civil Engineering to tailoring – it was quite a big change. When I completed the course the manager asked me to join this team of outreach workers at Kara Counselling. So in April 2000 I joined the team, and I have been involved in the fight against the spread of HIV/AIDS ever since.

Basically, we use our own life stories to change other people’s views and behaviour. But we also do a lot of general educational work. We talk about human rights issues and clear up the many misconceptions that people have about HIV. It is for the negative and

(above) Chama Musoka at home with his stepson William (aged 7) and a neighbour’s child. (left) Preparing for the day. (right) Talking to peer educators at Africa Directions about life with HIV.

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the positive ones. We talk about the kind of lifestyle you need to have to avoid catching the virus – or if you are already positive, to delay the onset of AIDS. This is very important.

At first I observed other people giving these talks, and then it was time for me to deliver the goods myself. It was such a good experience. I was very much composed. These stories that I tell go a long way in changing peoples lives. I really believe in the saying: ‘A problem shared is a problem half-solved’.

You know the ABC prevention strategy: Abstinence, Be faithful or use a Condom. Well, we are not selective, we just promote every aspect of prevention and people must choose which is appropriate for them. You will find that there are these youth groups promoting abstinence and condemning condom use. But, you know, the messages they preach are often contrary to their own behaviour. There is this gulf between behaviour and knowledge. Today, everyone knows about HIV, but it’s just as if they can’t connect what they know to their behaviour. It’s like this medical doctor who is a secret smoker… So our stories are there to bridge that gulf; our stories are the solution.

Some people have never seen a person with the virus – or they don’t know that they have. They may

see posters, read stories, listen to radio and TV, without looking at this human face living with the virus. Every time they are shocked. They ask: ‘Is it true?’ We say: ‘You can’t tell by looking. Even that partner of yours could be infected, you never know.’

We say, ‘If you indulge in sex, ensure that you go for VCT. Because you are the window of hope for this Zambia. The future of Zambia rests on you and you must protect yourself from this virus.’

We are winning this one – oh yes, we are winning.

There is something else I would like to tell you about my life. A short time after that, my sister and her husband sent me from the house, my brother-in-law got sick. He died within six months. Just after that I met my sister at the funeral of a cousin. We chatted and we reconciled, even though she never referred to the past, or to her husband’s illness.

Some time later she got TB and then she died in the village, leaving behind three orphans. Memory, who is now 11 years old, lives with my wife and me today.

My sister never spoke about her illness. She kept it to herself, but of course she must have suspected something because it was the same kind of illness that the husband suffered from as well.

I have passed through a very hard time for me to be where I am today. If it hadn’t been for my introduction to Hope House, where I met these fellow HIV-positive people, I would definitely be dead by now. Yes, I can assure you. There I got a lot of emotional support, which is very important. Before being introduced to this place I thought I was the only one with HIV. I wondered ‘Why has it happened to me that I am the only one. Is it a punishment from God?’ But when I was introduced to this place, I found 40 people HIV positive. I even found a childhood friend – can you imagine, a childhood friend? That was great; he gave me a lot of support.

And I learnt about HIV/AIDS, how to eat well and avoid infections, about issues of early treatment. I also learnt how important it is to disclose. That aspect is part and parcel of positive living. But I have also had a lot of negative experiences with disclosure – old school friends who refuse to shake my hand, people who refuse to drink with me.

Stigma is still there… it is still roaring like thunder in Zambia.

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35

Work is love made visible Community-based care in Tamil Nadu, India (far left) Rani Jayakodi visiting Nagarajan in his home. (left) At Seva Nilayam nurses take Karuppayee’s blood pressure while Rani looks on.

Rani Jayakodi is examining her patient carefully under the harsh light of a single naked light bulb. She takes his arm gently in both her hands.

‘The skin colour is much better,’ she says, ‘but how is your diet? Are you eating nourishing food?’

Nagarajan nods. Apart from joint pain and lack of energy, he is feeling well.

Rani is an outreach worker for Seva Nilayam, an integrated health and development programme in rural Tamil Nadu. An HIV-positive person herself, Rani takes care of 50 families affected by HIV/AIDS in the villages surrounding the centre. She visits this household every three days to check on her patients’ health, to advise on basic hygiene and to give simple tips – like how to make oral rehydration fluid from salt, sugar and boiled water. Advising on a healthy diet of inexpensive local foods is an important part of her work.

The spotless room is bare, but for a heap of herbs drying in the corner. Nagarajan’s wife collects these in the fields and sells them to neighbours for 7 rupees (8 pence) a kilo when she is feeling well enough to go out. This has been the only family income since the couple fell ill.

During his two years of illness, Nagarajan mortgaged the house and spent thousands of rupees on quacks and private doctors. Nothing helped, and nobody told him he had HIV. ‘I am alive because of Seva Nilayam,’ he says. ‘They come and talk to us and they are very supportive.

I have confidence in them. The free treatment has lessened my burdens. If I had continued with the kind 36

of treatment that I got at the private clinic I would not be alive today.’

Today, his wife, Karuppayee, has complaints that require medical attention, and Rani offers to accompany her to the outpatients’ clinic at Seva Nilayam.

It is a short journey through lush paddy fields bordered by papaya and banana trees. Millet and corn are ripe on the head and villagers are spreading dried grain on the road to be threshed by passing cars.

At the centre, Karuppayee shows her card and is seen straight away by the nurses. HIV-positive patients are given special attention – fast track and free treatment. Student nurses in turquoise saris check her blood pressure and accompany her inside. After a short examination the nurse prescribes medication for itching and explains how to insert a vaginal pessary for thrush. The graphic description causes mirth among the students, and an indignant Karuppayee tells them to shush.

‘Don’t laugh,’ she says, ‘I must know how to use it properly.’

Founded by the British-born humanist Dora Scarlett in 1962, Seva Nilayam grew from a small mud house with one nurse, into a major health and development programme in two decades. The simple shrine to Dora in the yard is inscribed with the words: ‘Work is love made visible’.

The complex houses a mini-hospital, which treats TB, skin diseases and a range of minor problems, a handicraft room, a demonstration unit for pit latrines, a training centre and much more besides. The

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(above) Volunteers are trained to diagnose and treat common complaints like thrush. (below) All family members benefit from the care of Seva Nilayam’s outreach workers.

outpatients’ clinic sees 200 people a day and there are 50 nurses in training.

Seva Nilayam began working with HIV in 1996, when they noticed a sudden drop in the cure rate among TB patients. Says long-term staff member Dr Chandraseker: ‘We knew something was wrong and we took a random sample in the TB ward. Out of 11 patients, eight were HIV positive. Now we were sure that HIV was amongst us.’

Seva Nilayam had already integrated a programme for sexually transmitted infections (STIs) into their mother-and-child health programme. It was not difficult to find ways of introducing HIV as well. Then the Alliance came along and assisted with the development of a complete care and support programme.

‘Their approach was different to other donors,’

remembers Chandraseker. ‘Others decided what the programme should be and gave it to you. With the Alliance, we were asked to discuss strategy, and we were given a lot of freedom.’

Because of the stigma surrounding the disease in the community, it was of prime importance that HIV services be integrated into other services.

‘If we go into a house, people must not suspect that the person is positive. The Alliance did a study on integrating HIV and TB, and found that when patients have TB and HIV they feel more comfortable to say it is TB because the community does not take it so seriously.’

The care and support programme has two full-time outreach workers and a team of 35 volunteers working in their villages in the area. Ten of the volunteers are themselves HIV positive. Volunteers are paid a small honorarium and they live alongside the people for whom they care, visiting them in the evenings after work.

Later in the day, Rani is supervising a volunteer’s visit to a widow – one of the few openly living with HIV – who has been seriously ill. A crowd of inquisitive villagers gathers to observe the consultation. All at once there is a tortured cry and a woman in a purple sari throws herself through the doorway of the house.

She is the widow’s sister and has seen a crowd, and imagined the worst.

‘My sister has not been well for the past few months,’ she sobs.

Rani and the volunteer counsel the sister as best they can. Now she is not sure whether to laugh, or cry some more. They are a close, supportive family and they are suffering to see their loved one fade. Rani mentions the Indian Government’s promise to provide antiretroviral treatment in the public health system.

‘With these medicines we can live a long time.

We will fight the Indian Government for them. You must have hope.’

Rural et Urbain • Association pour la Renaissance de Foss III • Association pour la Sauvegarde de la Culture et de l’Art Bassari de Kedougou • Association pour la Solidarité et la Promotion du développement intégré • Association pour la Solidarité et la Vie • Association pour le Bien-Etre des Femmes de Pikine • Association pour le Bien-Etre des Populations de Colobane • Association pour le Bien-Etre Communautaire • Association pour le Développement de Boinadji Roumbe • Association pour le Développement de Diaranguel • Association pour le Développement de Keur Yérim • Association pour le Développement de la Commune de Matam • Association pour le Développement de Lyndiane • Association pour le Développement de Malem Hodar • Association pour le Développement de Medina Gounass • Association pour le Développement de Médinatoul • Association pour le Développement de Yeumbeul • Association pour le Développement des cites de Hann • Association pour le Développement des Femmes Avicultrices de Pikine • Association pour le

37

NO LOOKING BACK RANI JAYAKODI, aged 25, is an outreach worker for the integrated health and development programme, Seva Nilayam, in Tamil Nadu, India.

Rani left school at 15, and had an arranged marriage at 17 years of age.

When my husband first fell ill he went to a private hospital. There he asked the doctor not to reveal his HIV status to anyone. After that we used condoms for some time. I thought that this was because he had a sexually transmitted disease, I didn’t know about the HIV. One day I was looking through some papers and I found his medical report, which said that he was HIV positive. I confronted him about it, and asked him if that was the reason we were using condoms.

He denied this, saying there was no problem with his private parts. Later I told his parents and they shouted, saying, ‘What is this, is your wife now a doctor?’

There was a huge fight. Then he burned the test results.

Some time after that, his health improved. I began to think: OK maybe it was not true. After three years of marriage he was very healthy. We no longer used condoms or talked about HIV, though I did have that fear in my mind. By now I had learnt quite a lot about AIDS. I kept asking myself, ‘Why did he destroy the test results?’

After three-and-a-half years I got pregnant and delivered a boy child. He only lived for one month.

I did not have an HIV test; there was no reason to.

The baby was very underweight, only two-and-a-half kilograms. My husband had beaten me in the ninth month; maybe that is why the baby died.

My husband became sick again. The doctor had told us that he would not survive and that there was no point in taking alternative remedies. But I wanted to try more cures and borrow some money from my parents. My husband said, ‘Don’t go to your family, you will not come back. I need you beside me.’ He was aware that he was going to die at any moment.

38

I convinced him to let me go home. But my family wouldn’t give me any money and they discouraged me from going back. When I got the news that he had passed away I wanted to go immediately, but my mother refused. She threatened me by saying, ‘If you go I will commit suicide.’

Some time before, I had gone with my mother for an HIV test. It was positive. Since then, family had not allowed me to touch my sister’s children. They said it was better, for the children’s sake. ‘Don’t touch them if you want them to have a life.’ I was very hurt by that talk.

By now, everyone had got to know that my husband had died of AIDS. My relatives told me, ‘You were married to him for five-and-a-half years, you should have been at the funeral.’ I felt very bad.

There was a place where there were poisonous plants, and one day I went there and collected some seeds in a bag. After two days I began eating them.

They were very bitter so I took a spoon of sugar and ate them with that. At one point I fainted and hit my head. My mother found me and called the doctor who gave me an injection that induced diarrhoea and vomiting.

When my mother saw what a state I was in, she also became ill. She started bleeding and I took her to Arogya Aham Hospital. In the hospital there was a poster of a skeleton of an AIDS patient. While we were standing in the queue a person came to me and asked about our problems. I told them that my husband had recently died of TB. When I said this, the person just smiled and invited me to go with her to have a talk.

There I met another woman who asked if I had any problems, and she gave me a pamphlet about HIV/AIDS.

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Rani Jayakodi, facing up to life with HIV.

(left) The edge of a field is as good a place as any to advise those needing medical care. (below) Daily yoga on the rooftop of her mother’s house eases the stress of living and working with HIV.

Although I knew that my husband had died of AIDS, I did not reveal this to her at this time. When I went home I thought about it. I felt confidence in the woman that I had met and I liked the atmosphere of the place. I decided I would go back and talk to her the following week, and would disclose my husband’s status. The following week when I went back I met with her and with a counsellor called Pitchaimani.

He encouraged me to talk about the things that were worrying me, and I burst into tears and told him how my husband had died, and that I was also HIV positive.

He comforted me by saying: We are all in this together.

He himself had been living with the virus for eight years.

He said that there were millions infected, not just us two. There were even many in our own district. I was

very curious to see who they were. I wanted to meet them. He told me that his organisation needed me, and I was very keen to participate. From then on, there was no looking back.

I wanted to work full-time for people with HIV and do support and counselling. That is why I joined Seva Nilayam. I volunteered. I love my job as an outreach worker, where I get a lot of time to interact with people living with HIV and AIDS. Initially, I was very shy. I didn’t want to come out. But now I am motivating other people and encouraging them to come out and disclose their status. People say, ‘Because of Rani I have come out and my parents now understand me.’ They trust me and that makes me happy.

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39

Proud and happy The volunteers of Arulagam Hospice, India ‘The quacks are telling people in our village that you can make an extract from the stem of the neem tree, and if you give that to an HIVpositive person they will live for 30 years.’

Everybody laughs at this contribution from their midst.

There are 22 women and seven men gathered in this small conference room in the grounds of Arulagam Hospice. Today is the volunteers’ training day.

One day each month, home care volunteers from the villages gather for a workshop – to exchange stories, to learn from each other and to have their first aid kits replenished. Most are young wives. They sit in rows on bright plastic mats, with the men (on benches) at their sides.

The first volunteer to report back has recently attended a training programme in another town, and this has stimulated a discussion about traditional remedies.

‘It was very useful,’ he says. ‘We learnt how to make cough syrup out of Tulsi and Adathodai leaves.

You extract the juice and boil it up with jaggery.’

‘Will ordinary sugar do?’ asks a volunteer.

‘No. Jaggery is better because it has its own trace elements.’

Hospice Superintendent Charlet Soundara Rajan suggests that they all collect the ingredients and make the recipe together at the next meeting.

The first volunteer continues his report. This month 40

(left and below) Volunteer training day at Arulagam. Volunteers listening to a talk on TB given

by Arulagam health educator Palaniswamy. (first row right) Volunteers with the accountant, handing in money collected in the villages where drugs are sold at cost; Arulagam staff replenishing the first aid boxes which contain 23 basic medicines such as antacids, painkillers, vitamins, and cough mixtures; (second row) Volunteers with their First Aid boxes; (third row) The start of a long journey home to surrounding villages; volunteer Mary arriving in her village; (bottom row) Mary greeting Selvi, an HIV-positive neighbour for whom she is caring; Selvi on her way to work in the fields.

he has been introduced to three new HIV-positive people in his village, and he has treated several people living with HIV/AIDS for diarrhoea and headaches. He is also teaching health and hygiene to their children.

All morning the volunteers share their experiences of the month. They discuss the stigma that keeps this problem underground. Some of the older women express doubts about the morality of their patients and are roundly scolded by their peers.

At tea-time there is a tray piled high with savoury doughnuts and little cups of hot sweet tea. Later, health educator Palaniswamy gives a talk on the subject of TB. The volunteers have a lot to say.

Questions are asked and problems raised: What to do about a client who refuses to stop spitting everywhere. And the stubborn one who shuns his

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Though some hospice patients are receiving palliative care too sophisticated for the home environment, most are here because they have nowhere else to go. For them, the hospice is a refuge from tragedy and despair. A typical example is the case of Selvi Beaualh, who ran away from home after her mother died. At age 15 she was made to start working in a brothel, and a few years later she was seriously ill and diagnosed with HIV. At the hospice, Selvi recovered her health and her self-esteem, and has become a valuable employee.

‘I would like to go home,’ she says, ‘but my family will not accept me. I am not secure outside, but I am happy here.’

medicines in favour of some potion from the quack.

One volunteer asks if it is true that people with a bad attitude are thin, and Palaniswamy patiently dispels this myth.

The hospice was started in 1998 with funding largely from the British Methodist Church. The wards can accommodate about 30 patients, many of whom will recover and be discharged. Adjacent to the hospice is a children’s home, which accommodates 35 orphans in various states of health. The hospice also has a mobile clinic, which treats people in the surrounding 25 villages for common complaints. Each afternoon, health educator Palaniswamy goes out to teach at the village schools.

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Arulagam Hospice. (left) Mother and son. She has moved into the hospice to care for him in his last days saying ‘He is my child, I cannot just throw him away.’ (below) Bedtime in the children’s home. All of these children are affected by AIDS, some are orphans of adults who died in the hospice.

At the end of the long day volunteers report to the main hospice building to hand in their written reports and collect the first aid boxes. By sundown they are filing down the long dusty driveway, which will take them to their homes.

Even now, some will visit patients who live nearby.

For example, 24-year-old Mary Iruthaya of Amapatty village will drop in at her neighbour’s house to see if she is well.

‘I am doing this to help the village,’ says Mary.

‘There is no hospital nearby, and so when I heard about the project, I couldn’t wait to help. I like spending time with people, and when they are ill, I visit every day.

Yesterday I saw four patients and treated them for diarrhoea, cough and fever. I am very proud to be working for people living with HIV/AIDS. Proud and happy.’

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Picnic at Vaigai dam

Helping people live with HIV/AIDS Talking story, sharing burdens.

The Theni District Positive Network holds regular social events which provide relaxation, comfort and support.

Wednesday morning, Vaigai Dam. A circle of men and women sit under a giant mango tree in the centre of this popular picnic spot. This is a regular outing of the Theni District Network of Positive People (TDNP+) attended by positive members and their families as well as the staff of local organisations.

Network Secretary Pitchaimani Suruli begins the day with ball games, jokes and little tricks. There is laughter and applause. But soon the mood shifts and attention turns to darker things; people need to share their memories and their fears.

A youth jumps to his feet: ‘When I was diagnosed I wanted to commit suicide,’ he says. ‘I was very young and from a well-respected family. Then someone told me about TDNP+. There I found eight people who shared their problems with me. They had also been suicidal at first, but I could see that they had hope. Now I go to all the meetings.

I want to be a peer educator and help others like me.

It’s not a big thing; anyone can be infected.’

TDNP+ was formed in 2002 by Pitchaimani, Rani Jayakodi and a handful of other positive people in the district. It now has 144 members. The network is a voluntary organisation involved in counselling and support, as well as peer education and advocacy. It also trains people for public speaking. Currently, network members are raising money from the community to support local people on antiretroviral medication.

Today there are several new members, and Pitchaimani encourages them to speak.

‘My husband died two months ago,’ says a woman in her mid-thirties. ‘Since then I have not been able to

talk. I just stayed at home worrying. After coming here I have met so many women who have lost their husbands in the same way. It encourages me to know that I am not the only person infected.’

Contributions are slowing down. Pitchaimani threatens those who have not yet spoken, saying that they will have to dance instead. One grey-haired woman simply says: ‘Every time I come to one of these events, I get happiness.’

A seasoned member recites a poem she has written especially for the occasion. It goes like this.

‘When I hug my mother, she gives me love When I hug my sister, she gives me love When I hugged my husband, I got HIV.’ Everyone laughs and claps. Anandi Yuvaraj, Programme Officer for Alliance India, has been listening carefully to the voices of her peers. Like many of them, she is also a widow living with HIV. ‘Women are vulnerable in every situation,’ says Anandi, ‘but I think marriage is a particular risk factor for HIV, because definitely you cannot protect yourself.

Definitely you cannot use a condom. Definitely there is no dialogue about these diseases or about sexual relations. I think hardly 10 per cent of Indian women have the guts to talk to their partner about these things. That is the reality.’

The shade deepens under the midday sun. An inquisitive toddler strays into the centre of this charmed circle, but speakers are immune to the curiosity of passers-by. The cement dais on which they sit has become an island of safety in an uncaring world… but now it is time for lunch.

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SUPERBOY IN SUNGLASSES RICARDO HERRERA, aged 32, is a counsellor for Vida Libre, an NGO that serves HIVpositive people in Guayaquil, Ecuador. Ricardo visits people in the hospital and at home, giving treatment advice, encouragement and support. Ricardo was diagnosed in February 1991, making this his thirteenth year of life with HIV. He has been off antiretroviral medication for eight months due to a complication with his private suppliers in Brazil.

It all started when Victor, my former partner, suggested that we went for an HIV test. I didn’t want to. I used to say, ‘Why me? I haven’t got anything?’ Anyway, one day he went behind my back and had a test, but it was ages before we got the results.

All that time we were losing weight. Once we were at a party and a friend said, ‘You two are so skinny you probably have AIDS.’ Before we got the results of the test, Victor became ill and I started feeling that there was something badly wrong. One night I came home drunk from a bar, and as I walked up to the house I saw Victor sitting there with all the lights on. He looked so serious I knew he had the results of the test. He put his arms around me and asked if I was going to leave him, and I said, ‘No, I love you.’ You know, now I am with César and I care about him a lot, but I think that Victor will always be the great love of my life.

I went downstairs. I felt shattered and I buried my head in a cushion and began screaming and crying.

After that Victor’s health continued to decline. I took him to the hospital. He had two critical periods when he had to be hospitalised. We were not well treated. Today the hospital is like heaven in comparison with what it was then.

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While he was in the hospital Victor and I made each other a promise. We agreed that when he recovered we would go back to the hospital and help all the people that we knew there – perhaps advising them on which was the best doctor or where they could go for help, who they could talk to.

When Victor first became ill his family turned their backs on him because they did not accept our relationship. I looked after him – I broke myself working and caring for him – running to the hospital, trying to earn a living. We were getting low on money.

Because of all this stress my own body started to deteriorate. I didn’t have any support, not even from my friends. My employer told everybody what it was that I had, and it destroyed my friendships in the gay circle. There was nobody to help us. The hospital gave me the option of being an ambulatory patient, so that when I was well I could get up and go out, and look after Victor.

When I was in the hospital, I used to call my mother every day and tell her I was fine. I said I was travelling.

When I was going in and out of hospital I always tried to keep to the quieter streets so that nobody saw me.

My family never found out that I had been sick.

Victor recovered slightly and I took him home.

Together we visited the hospital regularly to see friends we had left behind. We started sharing what we had learnt in the hospital and sometimes we could help. Victor found this very stressful – especially when one of the boys died. This put a strain on his health and he became ill a third and final time.

By now the people in the hospital knew us quite well.

I was one of the few people in the hospital allowed to lie in the bed with his partner. Victor was in the hospital for eight months this time. There were so many drugs: two tables were filled with medicines, and the prescriptions sat in huge piles next to his bed. I started reading up about them and realised that a lot of the medications were for the same things. I decided to learn as much as I could. That is why I know such a lot now.

Victor got worse, until the day he could hardly sit up and talk. I was terrified of the doctor in charge

Sunday morning: Ricardo Herrera relaxing at home with his partner César Ponce.

(left) Ricardo on the balcony of the Vida Libre office. (opposite) A meeting at Vida Libre to plan a major protest about irregularities in the provision of antiretroviral drugs by the state health system. Several people on the triple cocktail have been unable to get one of the drugs, and others have been told to start saving for their medication. HIV-positive Ecuadorians are angry and fighting for their lives.

Tambacounda • Comité Communal de Richard Toll • Comité Coordination Développement Guinaw Rail • Comité d’Action Quartier Lao Demba • Comité d’Appui au Mouvement Associatif • Comité de coordination pour le développement de Yeumbeul • Comité de Lutte Anti-SIDA • Comité de Lutte contre le SIDA et la Drogue • Comité de Santé de Bambey • Comité de Santé de Kidira • Comité de Santé du district de Podor • Comité Departmental Croix Rouge • Comité National pour l’Aphabetisation Fonctionnelle • Compagnie Théatrale Caddu Yaraaz • Compagnie Théatrale Kocc Barma, Rufisque • Conférence Episcopale • Conseil Communal de la Jeunesse de Guinguinéo • Conseil Communal Jeunesse de Velingara • Conseil Local de la Jeunesse Kidira • Conseil Regional de la Jeunesse de Dakar • Croix Rouge de Sedhiou • Dahira Sopey Seydina Mouhamed • Découverte et Aide aux Jeunes Artistes Talentueux • Développement par l’Education, la Formation et l’Insertion • Diamiyatoul Amroubil Mahrouf • Durable Peace • Echo de l’Ile à Morphil • Eclaireuses et Eclaireurs du

because he just told you everything up front. One day he came to me and said there was nothing more he could do. He just said, ‘Take him home.’

We decided to leave the hospital at night, because in my neighbourhood there were a lot of inquisitive people. Everyone from the hospital came to the door to say goodbye. I told them, ‘One day I will come back to this hospital, but it will be under different conditions.’

That night I put Victor to bed and I was exhausted.

I always tried to sleep with my arm over him, but that night I was woken by a loud bang. Victor had fallen out of bed trying to go to the bathroom. I put him back in bed and he just lay on his side looking at me. I was surprised when he licked my nose and laughed. He said, ‘Thanks for everything.’ Soon after that he fell into a coma. I was devastated. I cried rivers every day.

I couldn’t eat and got sicker and sicker myself.

One day our landlady came to visit. She was one of the few people who had been good to us. She was trying to cheer me up and encourage me to eat. She asked to see pictures of Victor when he was well and healthy. We propped him up on his side so that he could breathe better and we began turning the pages of the album. For a moment I was distracted. The

landlady looked at Victor and she said, ‘He’s gone.’

I tried to be calm and to accept what had happened.

I already had his clothes ready and I dressed him and telephoned his family and we took him to the cemetery.

After Victor died it took me about ten days to recover. I used to cry every day and I couldn’t eat because I had swollen glands. But I started trying to recover my life. I told myself: ‘I made a promise. I have things to do.’

I began training as a counsellor. I realised that I really liked it and enjoyed visiting the hospital. Even when I couldn’t help people in some material way I would at least be able to cheer them up. I would go to guys who were having a serious health crisis and I would say, ‘If I could recover, so can you.’ One of my greatest satisfactions is being able to put a smile on the face of a young person who is dying, and hear them saying to me, ‘You are the best.’

So that is how I started my life in social work. I also became a public figure in HIV and AIDS. I went to different TV stations – at first I was only seen as a silhouette. Then I started visiting high schools. I showed my face for the first time in the newspaper.

Now everybody knows me as ‘the boy from the association with the sunglasses on his head’.

Sénégal • Ecole Paffa • Entente Pour le Progrès de Bargny • Espoir Vie • Espoire Sans Frontières • Faggu Sos Santé • Fakanta • Famille Environnement Développement Education Communication • FAN’s Club Sono • Fedde Galunkobe de Salde • Fédération des Associations de Relais du District Sainitaire de Ziguinchor • Fédération des Associations Féminines du Sénégal • Fédération des Groupements de Medina Gounass • Fédération des Relais Sanitaires de Ziguinchor • Fédération pour la Nouvelle Civilisation • Femmes au Développement • Fondation des Associations Rurales pour l’Agriculture et la Gestion • Forum des Relais Communautaires Saint-Louis • Forum Jeunesse Oxy Jeunes • Foyer des Jeunes de Grand Yoff • Foyer des Jeunes de Fass Delorme • Foyer des Jeunes de la culture de Gagnick • Foyer des Jeunes de Taba Ngoye Kaolack • Foyer des Jeunes de Takkikao • Foyer des Jeunes et Club EVF CEM Bambulod • Foyer Jeunes de Kawsata • Foyer Socio-Educatif – Cours Privés Cheikhanta Diop • GAMAD • Gie and Liguey Sumu Ndiarigne • Gie Bokk

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Saving lives, one by one Community-based treatment in Burkina Faso Tuesday lunchtime and a crowd is gathering in the yard of a mud brick house in one of Ougadougou’s busy neighbourhoods. Women with babies on their backs, men in smart clothes and shiny shoes – they come by bus, on bicycles, in taxis, on scooters. At the back of the house two women are cooking large pots of food over an open fire. It is the fortnightly meeting for beneficiaries of Project Orange, an Alliance-funded community antiretroviral treatment programme. The name of the place: Oasis.

It is some time before everyone is seated in the open-air meeting place and the proceedings can begin. The first item on the agenda is the presence of visitors from England with cameras and notebooks.

Project worker Augustin Illboudou entreats his audience to be open about their HIV status.

‘In the beginning,’ he says, ‘the North said that antiretrovirals should not be given to Africans because we wouldn’t be able to manage the treatment. They said we could not do it because we have no running water, no watches… That is why we have to show that Project Orange is working and it gives results. You cannot hide yourselves and still want people to help you. If you agree to be interviewed it will contribute to our struggle.’

A vigorous debate ensues, and the audience quickly divide into two groups – the anonymous, and those willing to be identified. Three-quarters are in the anonymous group. Many have not disclosed their HIV status to close family members and they fear the consequences. In Burkina Faso, as in so many other countries, daily life with HIV remains a hidden thing.

Oasis chief nurse, Aziz Traore, addresses beneficiaries of the antiretroviral programme at the fortnightly meeting.

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Xalat • GIE Cheikhoul Khiary Production • GIE COJAD • GIE Daan Sa Doolé • GIE des Jeunes Agro-pasteurs de Nganda • GIE Dieuf Action • GIE Fakanta • GIE Gandiole de Bambey • GIE Jab-Goly • GIE Jam • GIE Judube Anniye • GIE Kër Gui • GIE Makha Guene Fedde • GIE Mouna Co • GIE Nakk Jarrignu • GIE Programme Intégré de l’Enseignement de l’Arabe • GIE Sokhna Coumba Gaye NIANG • GIE Sope Aminata Mbengue Ndiaye • GIE Sunu Natangue • GIE Télécentre Plus • GIE Thioyor II • GIE UJDS • GIE Xel ak Xalaat de Rufisque • GIE Yakaar • GPF Bokk Xol de Balacoss Saint Louis • GPF des Matrones de Saint-Louis • GPF Hersent • GPF Jokkere Endam • GPF Judube Anniya • GPF Medina Coura • GPF Ndiambour NDIAYE • GPF Takku Liguey • GRADEK • Groupe de Jeunes Anti-SIDA • Groupe DEGGO Relais 82 • Groupe des Amis de la Santé • Groupe des Jeunes Agro-Pasteurs de Nganda • Groupe des Jeunes Volontaires Pour la Prévention du SIDA au Sénégal • Groupe d’Initiative pour l’accompagnement des PVVIH de Louga • Groupe Full Ak Fayda • Groupe Inge Sahel

The doctor attends to a child with a high fever.

Never in the history of any disease has so much been said and written about something that remains so secret.

Now the real business of the day begins. Augustin reports back on a visit to an organisation in Canada, which has contributed new guides for managing complex drug regimens. He hands out pamphlets that summarise the components of the three-drug regimen in a detailed but accessible way. Photographs of the tablets are shown alongside their brand and generic names, and symbols denote how and when they should be taken. A sandwich means ‘to be taken with meals’; a moon, ‘to be taken at night’. The doctor will fill in each column so that the patient, whether literate in French or not, can keep track of the regimen with ease.

People pore over the pamphlets and chatter among themselves about their different medications.

There are anxieties to share and questions to be answered.

‘What if you forget the one at 6am? Can you take two at 6pm?’

‘No,’ says Augustin, ‘If you forget, then just take the next one, don’t take two at once.’

‘Some of them have to be taken before eating, and some after. What happens if I eat by mistake, or I forget to eat?’

‘If you take these ones without food (pointing to a group of protease inhibitors) the medicine will not work as well,’ Augustin replies.

‘What if you go to bed late? I am supposed to take it at 7pm and I only took it at 11.’

‘Just take it then, never take two at once,’ says Augustin. ‘But people, make an effort not to forget.

Your body needs to get used to the drug so you must take it properly. That is why we meet every fortnight, so you can raise all your problems.’

Project Orange was started in 1998 as a centre for people living with HIV/AIDS. At that time it could only provide counselling and treatment for opportunistic diseases. Even so, it was one of Burkina Faso’s first treatment centres for HIV. By 2000 they were giving antiretroviral medicines. A doctor was sent for specialist training and antiretroviral drugs were bought with donor funding.

‘It was a pioneering story,’ says Oasis director Bansé Halidou. ‘We had people in our organisation who had the disease, and we had the ability to acquire drugs for them. We started with 20 people and we were delivering ARVs even before the government.’

Oasis has its roots in a unique friendship group that began at the university in the early 1990s. The bonds and ideals forged then have shaped a project that is now a global inspiration for community-based ARV treatment.

‘We were interested in AIDS because it was something new,’ says founder member Filémon Ouédraogo. ‘We heard about it on the radio and we thought it was terrible. At that time it was believed

• Groupe Médecine • Groupe Media Femme Affaire • Groupement Book Jom Diawling • Groupement Book Yeene • Groupement Cheikhoul Khadim • Groupement Concorde • Groupement de Promotion Féminine Belfort de Bandafassi • Groupement de Promotion Féminine Binkhadi • Groupement de Promotion Féminine Boutoute • Groupement de Promotion Féminine Dandemayo II • Groupement de Promotion Féminine de Balingore/Ziguinchor • Groupement de Promotion Féminine de Boutate (Niaguis) • Groupement de Promotion Féminine d’Enampore • Groupement de Promotion Féminine Dinguessou 2 • Groupement de Promotion Féminine Fagaru • Groupement de Promotion Féminine Gaigui • Groupement de Promotion Féminine Haldy Foty • Groupement de Promotion Féminine Jogleen liguey • Groupement de Promotion Féminine Jokkere Endam de Kedougou • Groupement de Promotion Féminine jubbo de Fongolimby • Groupement de Promotion Féminine Juduube Anniya • Groupement de Promotion Féminine Kousande Goudiry • Groupement de

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(left) Oasis staff members. (opposite) Breakfast at Café Sante, one of 14 roadside kiosks run by beneficiaries of the Oasis programme. The woman who runs this particular kiosk makes about 10,000 CFA (£10) on an average day. All the kiosks are decorated with HIV prevention messages and are also used as sites for distributing literature and condoms.

that it was just something white people had invented to eliminate black people. We knew this was not true and we felt that, as we had had the advantage of a good education, we should take the lead and explain to people about AIDS.’ The group began making posters and distributing condoms. They also distributed clean razors in barbershops, and educated people about the risks of HIV. The group worked for years without significant funding. They sold condoms at a small profit and they devised schemes to generate income.

‘Sometimes we were seen as drop-outs by our families and friends,’ remembers Filémon. ‘We worked every day, but we still had to go and ask for money. For a long time we had to live with friends and our parents.

But people gave, again and again. My older brother supported me, as did many friends who were working.’

It was not until about 1997 that they earned their first salaries and formally registered their organisation under the name of Association African Solidarité (AAS). Soon they were trying to raise donor interest in antiretroviral treatment. It was not easy says Filémon.

‘Donors thought it was utopian. They thought we could not gather people who were HIV positive.’ But the group was convinced, and they persevered. Three years later they have a functioning centre that treats over 1,000 people, 120 of whom are on antiretroviral treatment. Working out of a simple bungalow with two cold-water taps and a pit latrine in the yard, AAS has achieved better results than several lavishly financed government programmes across the globe, and its success is evident in the voices of those it has helped.

‘It was very difficult to go for the test,’ says Virginie Diatto, ‘but the Centre has helped a lot. Now I feel free.

I go out. I dance. I play. I am normal. I know I will live well until my last day. I will live until I have white hair that is for sure…’

Oasis provides a chain of services, beginning with VCT. The staff includes three doctors – one permanent and the others part-time – three nurses, a pharmacist, 48

and an archivist, who keeps patient records in a room almost too tiny to turn around in. Patients get costprice medicines from the pharmacy for opportunistic infections, and free antiretrovirals. And even in this simple setting, Oasis has an adequate monitoring system. Two local laboratories provide discount CD4 tests, which are done on a regular basis. As there are no laboratories in the country for viral load monitoring, this is more ad hoc. When friends of the project travel to France, they take batches of blood samples in their hand luggage.

The clinical results have been convincing and no patients have dropped out, but there are still challenges and problems. One of the most difficult is deciding which patients most need antiretrovirals.

‘It’s very difficult,’ says Filémon, ‘making life-anddeath decisions. One person has a child, one does not: how do you decide? If you choose an unmarried person you may be in trouble. But you have two people who love life. How do you decide?’

Oasis services do not end with medical care. Group sessions are designed to enhance treatment literacy and compliance. Beneficiaries are keen to point out that not only have their lives been saved, but the benefits are also immeasurable.

One young father attending the fortnightly workshop explains: ‘Since I have learned my status it feels as if I have been born again. The Centre is my second family. Between friends we do not tell the truth, but here we know we share the same disease so we can speak openly without being ashamed.’

A woman who is visiting the centre with a sick child adds: ‘What you gain here, you don’t find in a hospital, even though they treat you. Here we get affection and love, and we can be together to discuss our problems.

It is not like being on an outpatient’s bench.’

There is still some debate about the role of NGOs in antiretroviral provision. Many feel it should be the domain of state health centres.

‘We are close to people,’ says Director Halidou.

Promotion Féminine Lande Baity de Bandafassi • Groupement de Promotion Féminine Mame Diarra Bousso • Groupement de Promotion Féminine M’bamtare • Groupement de Promotion Féminine Saensoutou • Groupement de Promotion Féminine Salemata Centre • Groupement de Promotion Féminine Sodiore de Fongolimby • Groupement de Promotion Féminine Takku Liguey • Groupement de Promotion Féminine Tessito • Groupement de Promotion Féminine Timinandiya • Groupement de Promotion Féminine Yari Mayo • Groupement des Femmes de Median Gounass • Groupement d’Intérêt Economique Action • Groupement d’Intérêt Economique Artisans de Bandafassi • Groupement d’Intérêt Economique Bamtare • Groupement d’Intérêt Economique Bamtare de Kidira • Groupement d’Intérêt Economique de Djinoflit • Groupement d’Intérêt Economique de Fossilaye • Groupement d’Intérêt Economique Diarra Action • Groupement d’Intérêt Economique Faggaru De Medina • Groupement d’Intérêt Economique Kossam Bande de Kedougou •

‘They do not want to be referred to the state system and they often try to bypass it. Here they get help with how to live with HIV. We collaborate with the state system and play a complementary role. The state will never take the place of a community association.’

Certainly there are components of the project that are unlikely to be found in a state-run system.

The founders, long experienced in making do, have devised income-generating projects to provide the beneficiaries with a livelihood.

The organisation has 14 roadside kiosks across the city, all run by beneficiaries who make a good living from serving drinks and snacks to passers-by.

Called Café Sante, these kiosks also provide a venue for HIV/AIDS education, and on some days, lucky customers get free condoms with their morning coffee. Across town is an internet café that employs three people and reaches young people with HIV/AIDS educational materials. Students are particularly attracted by the cut-price surfing offered at ‘k@pote.com’ (condom.com). These projects employ 60 people who are all also beneficiaries of the Oasis treatment programme.

Finance and support are also organised for beneficiaries who want to start their own small businesses. Oasis has placed money in trust with a community bank as collateral for loans. The bank,

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along with Oasis staff, makes its decision on the basis of a business plan, and contracts directly with the client. This works better than the earlier model where Oasis provided direct loans. Says Bansé: ‘This was not a professional way of doing things. It was too informal and there were problems with people not repaying their loans. We were friends and they knew us too well. They gave many reasons. Some were sick, and as we knew them it was hard to respond. Others even took the money to buy drugs.’

The new system has already financed 15 businesses from small bars to poultry farms.

Oasis’s integrated programme includes food distribution. Recognising the importance of regular meals to the success of the drug regimen, Oasis provides a monthly food hamper to especially needy beneficiaries. And they can also get a hot meal twice a week at the Oasis outdoor kitchen.

(left) Founders of the Association African Solidarité, (left to right) Issoufou Tiendrebeogo, Issouf Koama and Filémon Ouédraogo. (below) K@pote.com (condom.com), the cyber cafe owned byAAS employs several beneficiaries of the antiretroviral project.

Today, lunch is a plate of pasta with meat and tomato sauce. The workshop over, participants are relaxing in the dappled shade of the cassia trees. Women in bright robes stretch out their legs on red and yellow plastic mats. A hen (there’s always a hen) pecks her way to the empty plates, her four chicks following behind. A visitor wheels in a bicycle piled high with coloured cloths, hoping to make a sale.

The conversation turns to absent friends… this one has breathing problems, that one has gone thin, another is in the hospital.

Despite the achievements of this innovative programme there is still a long way to go. There are many clients on the waiting list for antiretrovirals and a treatment programme for children has yet to be devised. A mobile VCT van and a programme to prevent transmission from mother to child are two major new developments. But with a modern treatment centre under construction and new funding on the way, Oasis promises a haven for 5,000 beneficiaries by 2010.

Groupement d’Intérêt Economique Nak Jarrinu • Groupement d’Intérêt Economique OMAR PNLS • Groupement d’Intérêt Economique Sunu Natangue • Groupement d’Intérêt Economique Unite Solidarité Entraide de Salemata • Groupement Faro II • Groupement Féminin Book-Jef • Groupement Féminin de Nyassia • Groupement Féminin Mannaa des PA • Groupement Féminin Naq Jarrignu Xam Dooga Am • Groupement Féminin SNSD • Groupement Féminin Xel ak Xalat • Groupement Markala de Kedougou • Groupement Soukaliku • Groupement Wakhilare de Bandafassi • Handisport • Hibiscus International • ICC/Radiab • Idéal Contre la Proliferation du SIDA • Jëf Jël • Jeunesse Action Citoyenne • Jeunesse Action de Richard Toll • Jeunesse Action Développement • Jeunesse Active de Kanene • Jeunesse Amicale de Thiaroye Gare • Jeunesse Culture Loisirs et Téchnique • Jeunesse Dynamique de Leona Gd-Yoff • Kaddu Yarakh • Kafo Jida FM de Bakel • Kédougou Enracinement Ouverture • Lamou Lumiere • Les Ambassadeurs du Fouladou • Ligue des Jeunes

Love in the rain He is 40 years old. She is 29. They met at Oasis, where they are both beneficiaries of the antiretroviral treatment programme. They were married the day after this interview.

HE We met at Oasis in 2001. I was a beneficiary and I went to take the medicines, and she was working there. I was ashamed to tell her that I was positive, but as she advised me about matters to do with my children, we soon became friendly.

SHE I had been working in the association for four years when I met him. When I saw him coming to fetch his medication I knew that he was positive, and I thought that, being in the same situation as me, he may be someone to trust and understand.

In the beginning I was not in such a rush to be interested in him. I only decided on him after many visits to each other’s homes. What gave me confidence was that he spent his time telling me his life story.

HE Once I invited her for a drink and she did not refuse. But I cannot forget that day. She didn’t turn up and I got drenched in the rain.

I was discouraged and I stayed away from the centre for a month. Eventually, I had to return to get my medication and I saw her again. By this time she had had a chance to think, and she understood that something important was starting between us, so she apologised for what she had done.

Then she phoned me and we made an appointment to meet.

This time I did not turn up!

The following week we made another arrangement, but we nearly missed each other because I was in the wrong place. She was in a telephone booth trying to phone me and I was wandering around in the rain. It was also pouring on that day. When we finally met, this was the beginning.

SHE I would like to tell you about me. In the beginning, when I joined the project after being diagnosed, I was not physically ill, but I was psychologically unwell. I had just finished my studies and I was unemployed, and I was not in a good state. I went to Oasis to get medication and food, and they offered me a job. Since I have worked there I have met many who were in the same position as me, and this has given me courage and I have felt stronger psychologically. So, personally, I have taken the decision to live positively until my last day.

HE This is a disease like any other disease. It is pointless to neglect yourself and undermine yourself. My advice to others is to forget about the disease and live as you did before, and have the courage to fight. People must know that life and love goes on.

Since taking the treatment I feel fit and well. Because of these antiretrovirals I went to Oasis and I met her.

Femmes ARAFAT • Londo Looloo • Micro Entreprise Communautaire Tivaouane • MIDA MB • Mouvement de Lutte contre la Toxicomanie et le SIDA • Mouvement des Amis de l’Evironnement de Podor • Mouvement des Jeunes de Ndiaganiao Lutte contre le SIDA • Mouvement des Jeunes pour la Défense des Intérêts des Jeunes de Guédiawaye • Mouvement des Jeunes pour le Développement de la Commune de Guediawaye • Mouvement des Jeunes Quartier Pont • Mouvement Femmes et Développement • Mouvement International Pour le Développement en Afrique • Mouvement Jeunesse Action – Taxawu Xaléyi • Mouvement Jeunesse Action de Bargny • Mutuelle Santé et Développement • Ndibotou Thiane Seck • Oasis Solidarité • ODCAV de Pikine • ODI/Afrique • ONG Jamra • ONG Koreasen • ONG Marine Bongre – Kaolack • Orchestre Bandiagara • Org pour la Sensibilisation, l’Assistance, la Promotion Eco et Social • Organisation Book JOM sis a Escale Fatick • Organisation Communautiare de Base de Niaguis • Organisation pan-Africaine de Lutte contre le SIDA

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A RETURN TO YOUTH RAPHAÉLE ABALLO, aged 47, is a beneficiary of Project Orange. She is separated from her husband and has five children and one grandchild.

She began antiretroviral treatment at the Oasis Centre a year before this interview. Madame Raphaéle was one of the few people in this project who was willing to be identified as HIV positive. She waited patiently to be interviewed, and when she was seated she presented a few pages torn from a jotter, which told her life story…

I have so much to say that I have even written it down for you. I am very happy to express my mind. I am grateful to those who are helping us to get this treatment. It is thanks to them that we are still alive, and hope to live longer. Without this treatment I would certainly have died and my children would be unhappy orphans. But today it seems as if I have gone back to my youth.

When I started treatment, I was really almost dead.

I had a CD4 count of two. I had sores all over my body and in my mouth, and I was very tired. I couldn’t eat and had bad dysentery – something I had never had in my whole life.

At first I had treatment for some of the illnesses but I did not get better. People told me to go for an

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HIV test but I was too scared. How could I go when I knew that I had no money for medicines? At the health centre they told me they would try to help me get treatment, so I got courage and went for a test.

After the test I was in a bad state, so the health centre sent me here to Oasis. I got treatment and food from time to time. I began antiretroviral treatment about a year ago. The first treatment made me feel ill and I could not eat, so they decided to change the medicines. After three months I was feeling much better and had gained weight. After six months I had a viral load test and it showed that the virus was not detectable. Now I am waiting for the results of another viral load test. I am very encouraged.

During the disease I was very upset. My parents refused to shake hands with me. After I stood up, nobody would want to sit where I had been sitting.

It was only my children who were encouraging me: they continued to sleep in the same bed as me. I am very close to them, and without their support I would have died quite soon.

When I began treatment I changed physically, and those who were refusing to greet me became friendly again. Some would even run and touch my hands to make sure it was really me. I would say to them: ‘Yes, it is true, God has let me live.’

That is why I encourage my brothers and sisters to take the HIV test. Many Africans think about magic. They don’t know the signs of the disease and they think it is magic. I invite all people to come for treatment so we can eradicate this disease.

(left) Raphaéle Aballo’s clinic card which shows that her CD4 count went from two to 407 over one year of treatment. (opposite) Raphaéle at Oasis.

Madame Raphaéle at home with her son and grandson, two of the five children who live with her in the house.

– Fann • Organisation pour un Développement Intégré et Participative • PDEF Jammi Xaléyi • Pionniers de Ziguinchor • Programme Assistance a l’Enfance Déshéritée • Programme de l’Enfant et de la Famille – Ker Xaleyi • Ramut Flash • RASEBEF • Rassemblement Artistique, Musique et Théâtral • Regroupement de Femmes Consuméristes • Regroupement des Femmes Exciseuses de Kedougou • Regroupement Yasalan • Reseau Africain pour la Promotion des Echanges et Protection de l’Environnement • Réseau Association BienEtre Communautaire • Réseau d’Agents Communautaires de Bignona • Réseau de coordination des activités de Développement social et culturel – Rufisique • Réseau des Jeunes Filles Leaders • Réseau des Jeunes Relais • Réseau des Relais de Dakar • Réseau des Relais IEC Kawral • Réseau IEC de Thiaroye Gare • Réseau Insertion Artistes et Artisans Chomeurs • Réseau National des Personnes Vivant avec le VIH/SIDA • Réseau Regional des Leaders Elèves Animateurs • Réseau Santé Action Développement • SEN Quart Monde •

Sénégalaise de Prestations de Services • SIDA Service Thies • SIDA Service, Kaolack • Society for Women Against AIDS in Africa • Survie SIDA Saint-Louis • SWAA – Saint Louis • SWAA Jeunes • Synergie pour l’Enfance • Team Dam Tae Kwon Do • Troupe Culturelle du GIE Ndunngu Alaa Gano • Troupe Denkenya • Troupe Theatrale Fakanta • Troupe Xonn-Gui • UCJG – YMCA • UDB de Bango • Union Communale des Associations de Langues – Kaolack • Union Communale des GPF de Ourosogui • Union Communale des Groupements de Promotion Féminine de Matam • Union de Jeunes de Arafat Grand Yoff • Union Démocratique des Enseignants • Union des Groupements de Teinturieres et Aides de Dakar • Union des Jeunes pour le Développement de Aimonady • Union Ekolong • Union pour le Développement de Hann • Vinny Production • Volontaires Fouta Contre le SIDA • Yapakolor • Zone 4A de l’ODCAV de Dakar • Zone 8B Foyer de Yembeul • Sri Lanka • AIDS Combat Team • Alliance Lanka • Al-Quraish Social Development Society – Al-Quraish •

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From child to child Mitigating the impact of the orphan crisis in Burkina Faso (opposite above) Volunteer Fati Ouédraogo and her baby with five of the seven orphaned children of the Porgo household. They are, from the left, Ibrahim (12), Latifatou (7), Amadae (16) and Azeta (8) and Boukary (15). (opposite below) The Porgo children going to school. (below) Boukary in class.

‘Children, your faces are closed, as if you are sad.

Don’t be worried, we are all trying to help you.’

Fati Ouédraogo leans forward in her chair and examines the faces of the children at the Porgo family homestead. Fati is a volunteer for a community-based organisation that cares for orphans in the Sahelian village of Rambo, north-west Burkina Faso.

Throughout Africa, extended family networks offer some safety net for orphans, but as the impact of HIV/AIDS increases, they struggle to cope. Thus the importance of Fati’s organisation, the Association d’Insertion d’Aide aux Orphelins (AIAO), and twice a month she visits the Porgo family to give support to the orphans there.

AIAO was started by community elders when they realised something was going badly wrong in the village. More and more young parents were returning from their jobs in neighbouring Cote d’Ivoire with illnesses from which they could not recover.

The Porgo family are a typical example. Grandparents Djibrina (aged 73) and first wife Miriam (65) care for seven grandchildren under the age of 16.

Three are the maternal orphans of their son, and

four are double orphans of parents who died of undiagnosed illnesses in their early 40s. Even before this tragedy, the elderly Porgos were close to starvation in this, one of the most challenging agricultural regions of the world. Farmers have only the four months of the rainy season in which to grow and harvest crops for the year. To survive, they depend on remittances from young people in paid jobs in the cities. Now, like many families, the Porgos’ external support is gone and they have seven new mouths to feed. Before, they had some small livestock but the chickens died during a severe heatwave. And the goats? Well, each year Djibrina was forced to sell one for cash, and now there are none left.

The eyes of the saddest child remain fixed on the ground.

‘What is it Boukary?’ Fati asks.

‘I am not happy.’

‘Why?’ ‘I have no shoes.’

His torn clothes and his bare feet make this sensitive 15-year-old boy shy and withdrawn, and he has not made friends in the village. Even so, says his grandfather, with the help of the Association, life has improved.

‘Now that we have the means to send them to school, the children are not so shy. Fewer people treat them badly, and they do not cry so much.’

Boukary Porgo is one of over 300 orphans in this one village. The first major achievement of AIAO was to document the extent of their orphan crisis. In 2001, with the assistance of the Initiative Privée de Lutte Contre VIH/SIDA au Burkina Faso (IPC) – the Alliance partner based in Ouagadougou – they conducted a survey and found that nearly half of the village households were fostering orphans. Only 11 per cent of these children were at school and 80 per cent ate only two meals a day.

‘We were very surprised,’ remembers Association President Abou Ouédraogo. ‘When we told people the numbers, they couldn’t believe it. We had to set priorities. Even among those vulnerable children, some were in better situations than others. So we selected 200 that were badly in need.’

First they established a Solidarity Fund to which community members contributed. After raising

Amadyappa Yovun Samajaya – Kuruwita • Ape Kedella • Be-frienders • Centre for Policy Alternatives • Community Development Centre – Praja Sanwardena Parshadaya • Community Development Services • Community Front for Prevention of AIDS • Companions on a Journey • Dambulla Praja Sampath Sanwardena • Dambulu Praja Sanwardena Sangamaya • DCYA Development Social Institute • Deewara Kuda Kandayam Sanwardane Ayathanaya • Don Bosco Technical Centre • Family Planning Association of Sri Lanka • Galaboda Praja Seva Padanama • Gami Jana Pubuduwa / Association for Village Reawakening • Gami Viyavasaya Sanwardhane Sangamaya • Grameeya Artha Sadana Padanama • Human & Environmenal Links Progressive Organisation • Institute for Occupational Health & Safety • Janatha Sahabagithwa Padanama • Kalasa Kendraya • Kantha Sanwardhana Maha Sangamaya • Kodikanda Grama Sanwardhana Samitiya • La Rosa • Law & Society Trust • Life Drug Prevention Movement • Manawa Mathdraviya Niwarana & Praja Sanvidhanaya • Manawa

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80,000 CFA (£81.50) they went in search of outside donors, and people in the community volunteered their help. Fati explains why she volunteered: ‘They are our younger brothers and sisters, and the future of our country.’

The Association knew it had to challenge the stigma associated with being an orphan. ‘There has been a change in the mentality of the people, because before they didn’t realise that it was possible to help orphans,’ says Abou Ouédraogo. ‘People tended to believe that they had been abandoned by God.’ Now the Association has 26 trained volunteers who provide psychosocial support to the children.

They visit up to eight families twice a month.

The community survey also showed that access to schooling was a major problem for orphans and their carers. Within a year the Association was able to get 67 orphans into the village school by paying their school fees. That number has since almost doubled, adding a further three classes to the school. In Year 3, 24 of the class of 42 are orphans.

Their teachers are especially attentive; they visit the children at home several times a year. Says teacher Boubacar Haoussa: ‘It was not inevitable that these children would make progress, because orphans need more social support and affection. But now we find

The Rambo community meets to discuss how to improve the orphan support programme.

Thirty-two percent of the children at Rambo school are orphans. (opposite) The child-to-child workshop.

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Praboda Padanama • Manawa Sampath Sanwardhana Sanwidanaya / Institute for Human Resources Development • Manawa Sampath Sanwardhana Vyaparaya / Human Resources Project • Manawa Sanwardhana Madyasthanaya / Human Development Centre • Meth Sevena / ST Social Service Institute • Meuguna Sanwardena & Sanskruthika Padanama • Monaragala Integrated Development Organisation • Nation Builders’ Association – Jathiyagodanagannange Sanwidanaya • National Economic Social Education Development Association • Nawimana Dakuna Grameeya Sanwardane Padanama – Nawimana Rural • Negenahiru Sanwardhana Padanama • NEST • NETRA • Organic Environment & Rural Farming System • Pahala Uva Sanwardane Kendraya • Parisarika Ha Lama Ithiwasikam Surakeeme Sanwidanaya • Partners in Progress • Peoples’ Development Foundation – Janatha Sanwardena Padanama • Peoples’ Organisation for HIV/AIDS Prevention • Praja Navodaya Padanama • Praja Padanama • Praja Sanwardane Padanama • Praja Sanwidana Jathika Sansadaya

that the children are well-motivated and follow classes just like the other children.’

But the difficulties are still considerable. Even children with intact families may not be able to afford an exercise book or a pen, so the Association now helps orphans and other children alike.

Overstretched as it is, the Association has been called in to help neighbouring villages design their own surveys and programmes. Says Abou, ‘Everybody wants a project, but we have few means.’

There are no figures yet on how HIV/AIDS is contributing to Rambo’s orphan burden, but Abou estimates that about one third of the orphans in the village have been orphaned by HIV/AIDS. He is trying to spread the word about HIV in the village, and campaigning for increased HIV testing.

Above all, he is hoping for more funds to expand assistance to orphans and vulnerable children – for higher education and training and for a community centre.

On a sleepy afternoon the village children gather under a tree for their favourite part of the week.

An old man with no teeth shambles into the centre of their circle and they cheer. He is ‘the one who loves children’, and his traditional tales and riddles bring laughter and applause.

After this, Ali Porgo, a 15-year-old volunteer, begins a chant.

‘On the bank,’ he shouts, and all the children jump on to an imaginary riverbank.

‘In the river,’ he cries, and the children must jump into the river. The chanting grows, the children leap back and forth, the Sahara dust rises into the air.

Then the order is reversed and all the hapless ones who are ‘in the river’ are caught out.

This icebreaker leads to more serious matters – a workshop in which children identify the major problems in their lives.

For some time the Association has been trying to make the young people of Rambo village more aware of the plight of the orphans in their midst.

With the help of trained facilitators from the IPC, they use the child-to-child approach to encourage participation and to learn about problems from a child’s point of view.

Today they are talking about the difficulties children have at school. IPC facilitator, Solange Dabire, asks the children to list their problems. She produces a pile of large pink cards, and as each problem is raised, it is turned into a poster of sorts. The first depicts a stick figure lugging a heavy bucket. The problem: ‘Our parents make us work at home, and sometimes we are late for school.’

This is soon followed by a crossed-out exercise book (‘we don’t have stationery’); a ragged shirt (‘we have to go to school in torn clothes’); a stick figure with an empty dish (‘I don’t eat in the morning before I go to school’).

As the afternoon draws on, more problems emerge.

For instance, parents who are so poor – and there are many in this village – that they cannot afford a birth certificate. That’s a lifetime investment of 600 CFA (61 pence), without which children cannot register for school.

– National Forum • Praja Shakti Sanwardhana Ayatanaya – Institute for Developing Community Strength • Praja Shanthi Padanama • Praja Swashakthi Kriyakari Sanwidanaya • Purna Sanwardane Sangamaya • Rajarata Participatory Development Foundation • Rajarata Surakum Padanama • Rotary Club of Kandy • Rural Friends • Rural Rehabilitation Project • SAA Sanvidhanaya • Saba Mithuro • Sabaragamu Janatha Padanama • Samadeepa Samaja Kendraya • Samasevaya • Samastha Lanka Janasetha Sahana • Sanwardenaya Sandahawana Grameeya Madiyastanaya • Sarvodaya Legal Aid Movement • Sathmaga Sahabagithwa Sanwardane Sansadaya • Saviya Sanwardena Padanama • Seemasahitha Mithuru Mithuro Sansadaya • Seva Sarana Sangamaya • Sewa Lanka Padanama • Sinhala Tamil Rural Women’s Network – Sinhala Demala Gami Kantha Sammelanaya • Social Organisation Networking for Development • Social Welfare Organisation of Ampara District • Society for Applied Research & Social Development • Society for People Centered Development •

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Earlier in the year, one group, which had attended a child-to-child workshop, came up with this solution.

Each child saved 100 CFA (10 pence) and bought exercise books for an orphan in their class. Ali Porgo, an active member of this group, also has this advice for his elders.

‘I want to say to the parents that they must care for the orphans very well because an orphan is a person also. You don’t know when you yourself will die and leave your own children.’

After the workshop, a football match. ‘Children need to have something to help them forget,’ says Abou Ouédraogo, ‘so we organised a football tournament for them. Four schools were invited from neighbouring villages. IPC provided the balls and the T-shirts.’

When the children are asked to rank the problems in order of importance, a fierce argument breaks out: which is more important, breakfast or stationery?

Eventually they agree: ‘It is better to stay at home if you do not have stationery, because all the children will laugh at you.’

The facilitator asks the children to conduct some research: they must find out how many children in their school still have no stationery and they must suggest what to do about it.

This approach avoids singling out the orphans and exposing them to additional stigma, but it does make all of the children more conscious of the problems of their peers.

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(left) Members of the Rambo community dance together. (opposite) Sport helps the children to forget. (below) Sidiki Porgo, (14): ‘I was seven years old when my mother died. It was very difficult.

Even now when I am walking in the fields, I remember it and I feel like crying. If I think about it at night, I cannot sleep. Now it’s better because I go to school.

The Association helps me with fees and stationery. School is the best thing in my life.’ (overleaf) The orphans of Rambo village.

There is laughter in the schoolyard. The game goes on through a golden dusk. But the road ahead is hard, and the elders know it. This HIV/AIDS epidemic is young in the region, and already it is damaging the viability of fragile communities like Rambo. If it gets much worse, Rambo, and villages like it, could tip into a crisis from which they may never recover.

So the work must go on. ‘If these children are abandoned today,’ says Abou, ‘they will become highway gangsters. There are people in the village who are sceptical of our work and think we are wasting our time. But tomorrow they will see the results and they will know we are right.’

Socio Economic Development Organisation – Sri Lanka • Sri Lanka Anti-Narcotic Association • Sri Lanka Environmental Journalist Forum • Sri Lanka Interactive Media Group • Sri Lankan Association for Advancement of Social Welfare • St John Ambulance Association & Brigade • Suhadawanthainge Samajaya • Swayang Rakiya Thorathuru Madyasthanaya • Upcountry Workers Information Development Foundation • Uva Govijana Kendraya • Uva Praja Sanwardhana Madyasthanaya • Walapane Praja Viyaoruthi Madya Sanvidanaya • Weligama UNESCO Samajaya • Wilpotha Kantha Ithurum Parishramaya • Women’s Development Forum • Young Men’s Christian Association • Youth Solidarity Development Forum – Tharuna Shakthi Upadeshaka • Thailand • Health and Education Committee • AIDS Network Development Foundation (AIDSNet) • Hill Tribe Education Centre • Kiang Rim Khong Project • Lahu Health Project • Pan Kachin Development Society • Thai Youth AIDS Prevention Project • Volunteers’ Group for Children Development • We are Your Friend Group

Talking about orphans The Alliance influences international policy on HIV/AIDS

(left) December 1, 2003, Jeff O’Malley (former Alliance Executive Director) and Nec Chipfupa (Programme Director, HelpAge International, Mozambique) address the European Union; (right) Glynis Kinnock, MEP, listens.

On World AIDS Day 2003, the Alliance in partnership with HelpAge International, had the opportunity to bring the orphan crisis to the attention of the European Union.

Necodemus Chipfupa addressed the EU Committee on Development and Cooperation about the plight of orphans and their elderly carers, which is particularly acute in Tete province, Mozambique, where nearly one fifth of all adults are HIV positive.

Jeff O’ Malley told the assembly that, though there will be an estimated 20 million orphans by 2010, there is still no agreed strategy for scaling up assistance to affected families.

This meeting led to a review of EU policy on HIV/AIDS.

Orphans and vulnerable children have now been included in the EU framework for action for the first time.

In 2001, the Alliance in partnership with the Dutch group AIDS Fonds, set up the Stop AIDS Alliance. This Brussels-based organisation focuses on strengthening EU policy on HIV/AIDS in four areas: orphans and vulnerable children; provision of antiretroviral treatment; new prevention technologies (such as microbicides and vaccines); and financing issues.

By engaging at international level, the Alliance hopes to leverage a scaling up of the response to HIV/AIDS. It also hopes to create a better understanding of the role of NGOs.

• Youth Friend Organisation • Youth Love Community • Empower • Tunisia • Association El Kef pour le développement régional • Association de Jeunes Médecins Sans Frontières • Association Tunisienne de Lutte Contre les MST et le SIDA • Uganda • Uganda Network of AIDS Service Organisations (UNASO) • The AIDS Support Organisation (TASO) • Ukraine • All Together • Anti-AIDS • Blagodiynist • ‘Doroga’ – Center of Psychological and Spiritual Support and Aid • Centre for Youth Development • Chas Zhittya – Nikolayev Association of HIV Positive Children and their Family Members • Chas Zhittya Plus • Civil Advocacy Society • Community Development Association • Eney Club • Evliad • Faith, Hope, Love • Gay Alliance • Spodivannya • Hope and Salvation • Insight • Institute of Drug Abuse and Drug Related Criminal Problems • Kviten Club • Life Plus • Mangust • New Family • New Way of Life • Pace Forward to Meeting • Pidtrymka • Pikluvannya • Zhitomyr Charitable Foundation for Prevention of Socially Dangerous Diseases and AIDS • RA Gallery • Red Ribbon •

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A family reunion The Alliance’s 10th year anniversary celebrations In the last week of March 2004, Alliance family members came from all over the world to celebrate a special event. Each member brought gifts to the party: gifts of wisdom and experience gleaned from years of working with communities in the fight against HIV and AIDS. The week of events kicked off with a two-day retreat, during which directors of Alliance country offices and linking organisations discussed the big issues that will shape the organisation’s future. The

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strategic plan that will eventually emerge from this session will be a product of consultation with the whole Alliance family.

For many members, this experience was both novel and very useful. ‘It is the first time we are being asked to make input into the Alliance activities themselves,’ said Femi Soyinka, Director of the Nigerian linking organisation, NELA. ‘When I get home I can repeat this same process with the NGOs that we support.’ Issam

Donetsk Regional Association of Assistance to the HIV-infected People • Return to life • Solidarnist • Public Congress ‘Stalist’ • Rehabilitation Centre ‘Stupeni’ • The All Ukrainian Network of People Living with HIV/AIDS • Charitable Association ‘The Light of Hope’ • The Way Home • Tvoye Zhittya • Vertikal • Unitus • Victoria Club • Ukrainian Family Planning Association – Zakarpattya Branch • Club Svitanok • Rehabilitation and Resocialisations Centre ‘Edem’ • Rehabilitation Centre ‘Steps’ – Odessa • Zambia • Organisation for Sustainable Community Development (OsCoDe) • Salvation Army Livingstone Corps • Savoir Faire • Scripture Union Zambia • SEPO Center • Sikwazwa Care and Prevention Team • Society of Women and AIDS in Zambia (SWAAZ) • Special Friends • Thandizani Home Care and Prevention • Thandizo • Third World Images Project (TWIP) • Tikondane Home Based Foundation • United Church of Zambia – Chimwemwe Congregation (UCZ) • United Church of Zambia – Livingstone Congregation (UCZ) • Young Women Christian Association (YWCA)

The reception (clockwise from top left).

Wanjuku Kamau (Stop Aids Alliance), Pepukai Chiukwa (Alliance), Jeff O’Malley (former Alliance Executive Director)

David Leper (MP), Peter Piot (Executive Director, UNAIDS), Gareth Thomas (MP, British Parliamentary Under-Secretary of State for International Development)

Jo Newbery (Alliance), Alioune Badara Sow (ANCS)

Beth Mbaka (Alliance), Alvaro Bermejo (Alliance Executive Director), Peter Freeman (Alliance Trustee), Fiona Duby (DfID).

(left) Tenth anniversary roundtable meeting. Alliance staff and country partners shared with international peer organisations and policymakers. (below) Peter Piot delivers his keynote speech.

Moussaoui, Director of Moroccan linking organisation AMSED, agreed: ‘We are no longer speaking about donors,’ he added, ‘but about partners. We do things together; it does not come from the top. The Alliance Strategic Plan was very good: we feel involved in building this initiative. We feel that it is ours.’

The Alliance offices in Brighton were buzzing.

Colourful posters from many projects decorated the walls and provided informative reading material.

Workshops and small-group discussions allowed field partners to share their experiences. Presentations from different regions ranged across many subjects – from prevention, care and impact mitigation to the value of integrated approaches and models of NGO support.

From the oldest member of the family to the youngest, all had contributions to make and learning to take away. For example, Alliance ‘baby’, Maylene Leu-Bent, who is navigating a new Alliance programme in the Caribbean, learnt from other projects working with key populations in the Frontiers programme.

‘I was able to ask: “How did you start and how have you grown?” and apply that to the Caribbean context.’

Though it has been a rush of information, which has left her a little giddy, the experience has been an invaluable part of her induction programme. Ted Nierras who is setting up an Alliance programme in China, felt empowered by exposure to the energy and commitment of others. ‘The small group discussions were inspirational,’ he said, ‘Though the workshops were good, they paled in comparison with meeting people and being able to find out what they actually do.’

For some participants this was their first opportunity to learn from other Alliance partners. ‘In Thailand we are the only NGO support programme,’ said Sirinate Piyajitpirat of AIDSnet, ‘and sometimes we don’t have anyone to talk to. This kind of gathering has been very useful; to be able to sit down and have in-depth discussions with family members. It would be

good to have something like this once a year to keep the family together.’

Of particular note were presentations that demonstrated successful innovations, like the Zambian mobile VCT programme. ‘This was very interesting to me,’ said Pok Panhavicetr (Panha), Director of Cambodian NGO Khana, ‘but it would be hard to apply in Cambodia because the government would not allow it. In Cambodia, stigma and discrimination are very strong and it would be difficult.’

Many singled out the Cambodian example of collaboration between NGOs and government as the most inspiring example of a partnership that facilitated rapid scaling up. The presentation was given added credibility by the presence of a representative of the Cambodian Ministry of Health, Dr Mean Chhi Vun, at the workshop. He and Panha were closely questioned about the secret of this unusual relationship. The answer lay, apparently, in the adoption of four principles – flexibility, openness, clear objectives and a recognition of each other’s strengths and weaknesses.

It wasn’t all hard work. An evening reception allowed people a chance to unwind; and later some first-time visitors to the UK even managed to squeeze in a walk along Brighton pier. For Patricia Hamweemba, from the dry southern region of land-locked Zambia, it was her first glimpse of the sea. ‘I will have such stories to tell when I go home…’ she said, ‘How friendly the people, how wonderful the city.’ She will also carry new ideas for programmes with sex workers and youthfriendly health services.

Baba Goumbala, director of Senegalese linking organisation ANCS, expressed the views of many when he said: ‘This has been a unique opportunity for a very deep introspection. After ten years of hard work in the field we have been able to reflect on what we have achieved and to think about how we can improve, scale up or simply do things in another way.’

• Youth Can Move the World Movement (YCMWM) • Zambia Counselling Council (ZCC) • Zambian AIDS Law Research and Advocacy Network (ZARAN) • Zambia Interfaith Networking Group on HIV/AIDS (ZINGO) • Lusaka District Health Management Team (DHMT) • Mongu District Health Management Team (DHMT) • Kasama District Health Management Team (DHMT) • Mwense District Health Management Team (DHMT) • Ndola District Health Management Team (DHMT) • Kabwe District Health Management Team (DHMT) • Chibombo District Health Management Team (DHMT) • Lundazi District Health Management Team (DHMT) • Chipata District Health Management Team (DHMT) • Kalomo District Health Management Team (DHMT) • Livingstone District Health Management Team (DHMT) • Samfya District Health Management Team (DHMT) • Abundant Life Church • Africa Directions • African Extended Family System Support For Orphans & Vulnerable Children (AFESS-OVC) • AGAPE • Anti-AIDS Teachers Associations of Zambia (AATAZ) • Anti-STD/AIDS

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One handful of rice

Across the globe it is the poorest people who are bearing the brunt of the unfolding HIV/AIDS epidemic. They are also at the heart of the response.

Village women in south-east India have found their own way to help those living with HIV/AIDS in their midst. While preparing the family meal, each woman throws a handful of rice into a bowl.

These bowls are brought to the weekly meeting of the local selfhelp group, and the rice is collected. A local NGO, Society for Rural

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Development and Protection of the Environment (SRDPE), distributes the rice to those who need it.

The handful-of-rice scheme is based on a religious tradition, where at harvest time people kept a handful of rice from every meal and took that to the temple.

Each self-help group contributes six to ten kilograms of rice a month. Some self-help groups also save money towards antiretroviral treatment for those living with HIV/AIDS. ‘We give one rupee a month each for those with AIDS,’ explains one proud member. ‘We feel we are contributing to the lives of our people.’

Self-help groups are voluntary community savings schemes, which are run by and for village women. In this area, the SRDPE gives support and training to some 150 groups. The SRDPE is, in turn, supported by the Palmyra Workers Society (PWDS), the Alliance lead partner for Tamil Nadu state.

‘Behind one fistful of rice is a very strong development dialogue,’ says PWDS Director Reji Chandra. ‘We cannot live without charity, but that alone is not a solution to poverty. With HIV we do need an emergency strategy, but we should also see this as an opportunity for a more long-term sustainable response – for example the development of the health infrastructure.’

As concern over the HIV/AIDS epidemic in the region grows, the rice scheme is expanding. PWDS Programme Officer, Sundar Singh says: ‘The rich may give a thousand rupees, but we have to print their photographs in the newspaper to thank them. The poor contribute with love and affection.’

Youth International (ASAYI) • Catholic Diocese of Kabwe-Chowa Railways Community (CHBC) • Catholic Diocese of Lusaka • Catholic Diocese of Ndola • Chainama College • Chalaka Development Project • Chishilano & Twatasha Multifunctional Centre • Contact Trust Youth Association • Copperbelt Health Education Project (CHEP) • Dambwa Christian Care Centre • DAPP (Development From People to People) Hope Station • Family Health Trust (FHT) • Fleet of Hope • Isubilo Community Resource Center • Jon Hospice • Kabwe Adventist Family Health Institute (KAFHI) • Kalomo Mumuni Center • Kalomo Theatre Club • Kara Counselling • Kasara Diocese – DEP • Katuba Family Helper Project • Let’s Build Together Kalomo • Liteta Home Based Care • Lubwe Mission Hospital • Lutheran World Federation, Chipata • Mambilina Mission • Mthunzi Development Foundation • Nakoli Home Based Care • Network of Zambia People Living with HIV/AIDS (NZP+) • Planned Parenthood Association of Zambia (PPAZ) • Zimbabwe • Family AIDS Caring Trust – FACT Mutare •

www.aidsalliance.org 10Y 07/04