UNITED NºNº1717 AGAINST AIDS: The Story of TASO

UNITED AGAINST AIDS: The Story of TASO by Peter Kitonsa Ssebbanja

United against AIDS Unite and be safe Get the facts and get to know What AIDS is all about.

Tony Kasule, TASO Mulago Music, Dance and Drama Group

Foreword by Noerine Kaleeba

Edited by Daniel Kalinaki and Glen Williams

i Published by the Strategies for Hope Trust, 93 Divinity Road, Oxford OX4 1LN, UK. Tel: +44 1865 723078. Email: [email protected] Website: www.stratshope.org with The AIDS Support Organization (TASO), P.O. Box 10443, Kampala, Uganda. Tel: +256 414 532580/1. Email: [email protected]. Website: www.tasouganda.org.

This book is distributed in Uganda by TASO, and elsewhere in the world by the Strategies for Hope Trust.

© Strategies for Hope Trust and TASO

ISBN 978-1-905746-59-0 (E-book: www.stratshope.org) ISBN 978-1-905746-06-4 (Paperback) First edition, November 2007

Extracts from this book may be freely reproduced for non-profit purposes, with acknowledgement to the author and the publisher. Organisations wishing to produce translations of this book are asked to request permission from the Strategies for Hope Trust at the above address.

NOTE: The names of TASO clients ‘Eddie’ (page 13) and ‘Susie’ (page 20) have been changed in order to protect their anonymity.

Cover photograph: TASO Mulago Music, Dance and Drama Group

Design, cover and typesetting: Alison Williams

Photographs. (Where there are two photos on a page, with different photographers, ‘a’ is added to the top photo and ‘b’ to the lower): TASO (pp 7a, 8a, 15, 16a, 27, 28, 37, 38, 41, 42a, 49, 50a, 53, 61a, 68a, 75, 83, 84a, 88b); Carlos Guarita/ ActionAid (pp. 7b, 16b); Alison Williams (cover, pp. 8b, 42b, 51, 54, 61b, 62a, 63, 68b, 76, 84b, 88a); Glen Williams (pp. 34, 50b, 62b); Daniel Kalinaki (pp. 74, 78); MGS Video (pp 59, 67).

Printed by Parchment, Oxford, UK

Edited and produced by G and A Williams, Oxford, UK

ii UNITED AGAINST AIDS Nº17 The Story of TASO by Peter Kitonsa Ssebbanja

CONTENTS

Foreword by Noerine Kaleeba ...... vi Map ...... viii TASO service and training centres ...... viii 1. Introduction ...... 1 2. History of HIV and AIDS in Uganda ...... 3 3. The beginnings of TASO ...... 5 4. TASO’s mission, values and work ethos ...... 23 5. Change and leadership in TASO ...... 33 6. TASO services and other activities ...... 45 7. New medical approaches ...... 57 8. Scaling-up and sustaining TASO ...... 65 9. Investing in people ...... 71 10. The future of TASO ...... 81 Bibliography ...... 91 Appendix: TASO’s Donors, 1988 - 2007 ...... 92

iii ACKNOWLEDGEMENTS

I would like to express my heartfelt thanks to the many people who have encouraged and supported me in writing this book.

Sue Lucas, Elizabeth Morse and Kate Parry all encouraged me to write, and Sue also provided me with some useful literature.

Glen Williams commented on and edited whatever I wrote and encouraged me to keep writing, even when the going was tough. He and his wife, Alison, also provided me with hospitality in their home in Oxford while I worked on the book. Alison also did photo research and took photos for the book.

Daniel Kalinaki gave invaluable editorial assistance, and kept pushing me to uncover long-forgotten information through his probing questions. He also wrote most of the individual case studies in the book.

Dr Alex Coutinho took a keen personal interest in the book and supported me in practical ways, for example, by providing valuable information and also enabling me to travel to Oxford to work on the book.

Noerine Kaleeba encouraged me to keep writing, provided important information, and wrote the Foreword to the book. Thank you, Noerine, for coming up with the original idea to start a support group, which eventually led to the formation of TASO.

TASO clients Prossy Nalubowa, Christopher Machika, Ignatius Biryomumaisho, Patrick Olaya, Lucy Lawino and Eve Bashabire Turyamureeba freely shared with us their experiences of living positively with HIV. TASO counsellor, Annet Soobi, shared with us her experience of working for TASO. Numerous other TASO staff provided us with important information whenever asked. The TASO Board of Trustees gave us their guidance and support.

My late wife, Josephine, gave me her unstinting support during the first several years of TASO’s existence, when we were just a small group of unpaid volunteers, facing high levels of AIDS-related stigma and discrimination.

My wife, Grace, and our children have given me their love and understanding, without which this book would never have been written.

Peter Kitonsa Ssebbanja TASO, Kampala, Uganda

iv ABOUT THE AUTHOR Peter Kitonsa Ssebbanja was one of the 16 founding members of The AIDS Support Organisation (TASO) in 1987. He has worked for TASO in several different capacities, and is currently Director of Advocacy. Married, with eight children, he is a qualified physiotherapist and a former tutor in the School of Physiotherapy at Mulago Hospital, Kampala, Uganda. He also holds a Masters degree in Health Promotion Sciences from the London School of Hygiene and Tropical Medicine, University of London.

ACRONYMS ABC: Abstinence, Being faithful, Condom use ACDI/VOCA: Agriculture Cooperative Development International/ Volunteers Overseas Cooperative Assistance AIC: AIDS Information Centre AIDS: Acquired Immune Deficiency Syndrome ARV: Antiretroviral (drug) ART: Antiretroviral therapy CBO: Community Based Organisation CDC: Centers for Disease Control DANIDA: Danish International Development Agency DfID: Department for International Development GIPA: Greater Involvement of People Living with HIV and AIDS HBAC: Home-Based AIDS Care HIV: Human Immunodeficiency Virus NGO: Non Governmental Organisation PEPFAR: President’s Emergency Plan for AIDS Relief PHA: Person Living with HIV or AIDS SCOT: Strengthening HIV and AIDS Counsellor Training SIDA: Swedish International Development Agency STI: Sexually Transmitted Infection TASO: The AIDS Support Organization USAID: United States Agency for International Development VCT: Voluntary Counselling and Testing

v FOREWORD As TASO celebrates 20 years of service, one major shortcoming, namely, we failed people often ask me if I would do things to offer sufficient support to the children differently if I had the chance. My answer of parents living with HIV. In our culture, is no. What we did from the start, almost children are not given explanations: they instinctively, without really having any speak only when spoken to, and don’t ask scientific proof of its validity, was to focus too many questions. I remember how, when our efforts on the person who is infected we visited our clients in their homes, we or affected by HIV. I celebrate the fact that would pass the children on the verandah and we focused on the quality of life, and on go and talk to the adults of the family. restoring dignity, both in life and in death. I am, however, pleased that TASO is It is easy to look back with hindsight and always learning from its experiences, and find some faults with the way TASO evolved, this book shows how TASO has both grown but in fact TASO developed its home-grown and adapted to the environment in which it philosophy of ‘positive living’ and exported operates. I am particularly delighted with it to other parts of the world. In addition, the increased focus in the last three years long before the principle of GIPA (Greater on children affected by HIV and AIDS. TASO involvement of people living with HIV and now has 700 children on ARVs, child care AIDS) became a global rallying call, TASO facilities and child counsellors at all TASO had instinctively built GIPA into its values service centres, in addition to the traditional and its constitution. school fees support for orphans. This book captures, in a simple and Going forward, TASO will need to develop dignified way, those early days of TASO and very comprehensive programmes­ focused what it took to get us off the ground. Twenty on children, not only orphans, but all years later, TASO has looked after 186,000 children affected by the HIV epidemic. Our HIV-positive people, reaches 56 of the 80 aim should not be to just provide them with districts of Uganda, has 11 service centres, charity, but to ensure that they have well and has a staff of over 1,000 and an annual developed survival skills to cope with the budget of over US$20 million. This book tremendous challenges of growing up in is written to help us understand how it all a world marked by poverty, violence and began, and how TASO today is one of the conflict. This is a gargantuan task and can most widely recognized NGOs in the world. only come to fruition if we pull together in TASO led the call for a dignified life for all partnership and synergy. and we have continued to combine activism It is a sad fact that global efforts to address with action – a truly potent synergy for HIV and AIDS have often failed to transmit change. lessons and to hold onto them. The response When TASO started, our entry point into has often happened in a ‘pendulum’ fashion, the family was the HIV-infected person. We swinging from one extreme to another, focused on counselling the infected person, emphasising one aspect at a time, forgetting and counselling the family to care for the that people’s lives, needs and environments infected person. But this approach had are different. We have all lost time debating vi the focus of our programmes, for example, message should be that, whether you are HIV prevention OR antiretroviral therapy, OR in a discordant or a positive relationship, care and support. Condom use OR abstinence protected sex is the key to health and longer and faithfulness! As a country, we in Uganda term survival. recently went down the path of promoting I am therefore very pleased to see that mixed and conflicting messages around TASO in 2007 has focused on ‘Scaling up abstinence and condom use. While those in HIV prevention’ and has started rolling the two camps were fighting each other, new out the Positive Prevention programme, HIV infections were still occurring. focusing on safer sex, prevention of mother- Nobody should ever say that Uganda to-child transmission, discordance and reduced its HIV prevalence simply through engaging people with HIV as the voice of abstinence or through condoms. It was HIV prevention, especially for the younger a combination of both, and much more generation, who are most vulnerable. – including stigma reduction, gender When we started TASO, we were very clear awareness, HIV counselling and testing and in our minds that we wanted the organisation the work of TASO and many others – that to come to an end. We therefore included a gave people with HIV a voice and a face. dissolution clause in the constitution. Our But we still need to go much further. For thinking was that, when the AIDS epidemic example, we need to add property rights for came to an end, there would be no further women. In our African context, a woman need for TASO. Unfortunately, AIDS is still who doesn’t have property rights, especially with us and TASO is still needed. Moreover, land, or some other source of income, or a the AIDS epidemic is so deeply rooted that good education, has nothing and is therefore in 20 years’ time there will still be a need very vulnerable. for TASO. There is also a huge amount of scope Every day, I ask God to give us a cure – a – and an enormous need – for us to do more total cure – for AIDS. I believe that a cure for in the area of HIV prevention. HIV care and AIDS is possible, and that eventually we will prevention are two sides of the same coin. If overcome this epidemic. The ramifications of you have only 30 people to care for, you can the AIDS epidemic, however, are far-reaching provide a high quality service. But if, with and will live with us for decades to come. the same resources, you have to provide care Let this short history of TASO inspire and for 300 people, the quality of your service is invigorate present and future leaders of the sharply reduced. So it’s in TASO’s interest struggle against HIV and AIDS, for in the end that fewer people are infected with HIV, so the story of TASO is the story of how a small that those who are infected can receive high band of people did not lie back and wait for quality care. others to help them, but instead took up the One interesting thing that has happened challenge. Out of the personal loss, pain in TASO in recent years is the growth in and confusion of 20 years ago grew TASO - a the number of discordant couples, that is, unique, strong, proud and truly home-grown those in which one partner is HIV-positive African institution. and the other is negative. Discordance is a Noerine Kaleeba reality and we need to acknowledge it. Our Founder and Patron, TASO vii TASO SERVICE AND TRAINING CENTRES

CENTRE: DATE ESTABLISHED: Mulago (Kampala) ...... November 1987 Masaka...... May 1988 Training centre, Kanyanya (Kampala)...... October 1988 Tororo...... November 1988 Mbarara...... January 1989 Mbale...... March 1990 Jinja...... March 1991 Entebbe...... November 1991 Gulu...... January 2004 Rukungiri...... August 2004 Soroti...... August 2004 Masindi...... August 2005

viii Introduction

Chapter 1: Introduction

Early in 1987, I was one of a group of 16 AIDS. We shared food and offered what little men and women who started meeting in surplus we had to those who had nothing. Kampala, the capital of Uganda, to share our We visited one another, in our homes or in experiences of how we were coping with the hospital, to offer prayer and comfort. impact of AIDS on our lives. As the number of people to visit grew, a Although the first cases of AIDS in Uganda structure and a name gradually emerged had been identified five years earlier, the from our informal meetings. We called epidemic was still shrouded in ignorance. ourselves ‘The AIDS Support Organisation’ Because of the stigma and fear associated – better known by its acronym, ‘TASO’. with AIDS, and the myths about how easily The organisation encouraged its members it could spread from one person to another, to ‘live positively’. Those living with AIDS people sought to protect themselves by should take care of themselves and those subjecting those believed to have AIDS around them, and make the best of whatever to inhumane and degrading forms of time they still had left. They should also discrimination. Traditionally strong family make preparations so that they could ‘die ties, friendships, workplace bonds and with dignity’. community support mechanisms collapsed. Twenty years later, TASO still promotes Afraid to contract the virus, people refused ‘positive living’, but now works to keep to shake hands or share plates, cups and people living with HIV alive and healthy, other domestic facilities with those living rather than resigning themselves to a with AIDS. Even people who were not premature death, whether ‘dignified’ or infected with HIV but were affected by having not. The organisation has also grown at to care for family members and relatives, an amazing rate – way beyond the wildest often suffered from appalling forms of dreams of the 16 founding members. We now stigma and discrimination. operate 11 large service centres in different Our group of 16 individuals who started parts of Uganda, we employ over 1,000 staff, meeting informally in Kampala in 1987 and we provide services to 80,000 people included both people infected and people living with HIV and their families. affected by HIV. We came together to Since 2003, TASO has also operated a large seek refuge from the stigma and the dis­ antiretroviral therapy (ART) programme in crimination we were experiencing, and to rural and urban areas, as well as in camps find strength in sharing our experiences. We for internally displaced people in war-torn discussed how to care for those living with northern Uganda. We also train counsellors,

1 United Against AIDS we provide social support to our clients volunteers to become one of the largest and their families, and we assist community NGOs in the developing world. In doing responses to HIV. In addition, we carry so, it is not my intention to celebrate TASO out HIV education and we advocate, both in any way, but simply to tell the story of nationally and internationally, on behalf of TASO as I see it, as someone who has been people living with or affected by HIV. privileged to participate in the development In this book I have tried to tell the story of this remarkable organisation. of TASO, from the viewpoint of someone It is my hope, however, that this book may who has worked in the organisation, in serve as a learning tool for the thousands of many different capacities, since its humble non-governmental and community-based beginnings in 1987. I have tried to identify organisations involved in HIV and AIDS and describe the key milestones in TASO’s care, support, prevention and advocacy journey from a small, informal group of throughout the world.

2 History of HIV and AIDS in Uganda

Chapter Two History of HIV and AIDS in Uganda

The first cases of AIDS in Uganda were The true extent of the AIDS epidemic in identified in 1982. I remember hearing at Uganda was unknown until, in the early that time of a strange new illness that was 1990s, quarterly surveillance reports were attacking people in the fishing village of produced. In the 1980s, however, people Kasensero, on the shores of Lake Victoria, in had very little, if any, accurate information Rakai district, southern Uganda. The disease about HIV and AIDS. Instead, they heard soon became known as ‘Slim’ because it – and often believed – rumours attributing would often result in dramatic weight loss the origin of the disease to witchcraft, and and wasting away of the body before causing to ‘God’s punishment’ for sexual promiscuity death. Soon, cases were reported in the and infidelity. neighbouring district of Masaka. I recall how, in 1984 - 1986, when I was Before many Ugandans became aware working as a physiotherapist at Mulago of AIDS in their midst, the country had Hospital in Kampala, we witnessed an become involved in an intense and bloody increasing number of patients coming in civil war, which lasted from 1981 until with AIDS-related symptoms. At the time, 1986. This caused enormous insecurity and we used to talk about ‘AIDS’ rather than damaged the country’s economic and social about HIV, the virus which leads to AIDS. infrastructure, including the health services. HIV testing was still rare in Uganda, so very The war might also have contributed to the few HIV-positive people knew they were rapid spread of HIV, as soldiers and civilians living with HIV. By the time a person was moved from one place to another. diagnosed – generally on the basis of clinical Between 1982 and 1986, the number symptoms – as having AIDS, they usually had of AIDS cases reported increased slowly only a short time to live. but steadily, with the largest increases In 1986, soon after coming to power, registered in urban areas. The neighbouring President Yoweri Museveni’s government countries of Kenya, Tanzania, Rwanda and publicly announced that there were many the Democratic Republic of Congo were people living with AIDS in Uganda, and that also reporting cases of AIDS, with a high the country needed help in addressing the concentration of cases along the main problem. This was a startling declaration at highway that connected these countries to a time when many other national leaders one another. were denying the existence of AIDS in

3 United Against AIDS their countries. In October 1986, an AIDS came to health units for care and AIDS Control Programme was established treatment. However, the care provided was under the Ministry of Health to address inadequate because the medical staff lacked the AIDS epidemic. It started an intensive the knowledge and the skills to manage the health education campaign, targeting in disease. Morale among medical personnel particular the worst-hit districts of Rakai was also low; health units were understaffed and Masaka. and lacked essential drugs and other In Uganda, and throughout sub-Saharan basic supplies. In fact many medical staff Africa, heterosexual intercourse is the discriminated against AIDS patients, and most common form of HIV transmission. left the majority of the nursing, feeding, and The early HIV prevention messages in cleaning responsibilities to family members, Uganda therefore advised people to protect who also knew very little about what to do. themselves by ‘loving carefully’, which Furthermore, in the absence of a cure, many meant either being faithful to one’s sexual people considered people living with AIDS partner or using condoms. Other messages, as ‘lost causes’ that were ‘marked for death’, reflecting the fact that many people had and rejected them. more than one sexual partner, called for As a young physiotherapist at Mulago ‘zero-grazing’. This was a term borrowed Hospital, I regularly tuned into the British from the common practice of keeping cows Broadcasting Corporation’s Focus on Africa tethered to one spot so that they could eat programme, which often discussed HIV and the available grass without wandering off to AIDS. I followed the broadcasts with keen eat crops. The message was that spouses interest to learn more about this mysterious should remain faithful to one another, rather new disease. What I didn’t know at the time than seeking sexual partners beyond their was that I would spend more than 20 years homesteads. of my life trying to contain the spread of AIDS As more information about HIV and AIDS and endeavouring to give a better and more became available, more people living with dignified life to those whom it affected.

4 The beginnings of TASO

Chapter Three The beginnings of TASO

In June 1986, Noerine Kaleeba, who was offer him our moral support and to show Principal of the School of Physiotherapy solidarity with him and the entire family. at Mulago Hospital, where I also taught, Christopher passed away on 23 January flew to England to visit her husband, 1987. Christopher, who was studying at Hull While Christopher was hospitalised in University. Christopher had been admitted Kampala, Noerine, who had tested HIV- to Castle Hill Hospital, where he had been negative while in England, and the rest diagnosed as having AIDS. of her family experienced the stigma that At the time, I did not know about was routinely directed at people with AIDS Christopher’s condition. But one day, Mary and their families at the time. This was in Kakeeto Lukubo, a friend and fellow tutor stark contrast to their experience while at the School of Physiotherapy, who was a Christopher was in hospital in Hull, where close friend of Noerine, whispered to me Noerine and Christopher had received that Christopher had been diagnosed with counselling and information about HIV AIDS. Mary insisted, however, that I should and AIDS from a local support group. not tell anyone else about it. I was shocked While taking care of Christopher in Mulago and speechless. Later I plucked up the Hospital, Noerine sorely missed this kind courage to ask: “What about Noerine?” Mary of support. None of the other people living answered: “I don’t know.” with AIDS patients in Mulago Hospital were I had met Christopher at Mulago Hospital, receiving such support either. where he worked as a radiographer before Before Christopher’s death, Noerine going to Hull University. Although not close started reaching out to some other patients friends, he and I had always got on well. with AIDS in the hospital, and to their Noerine stayed with Christopher in Hull families. She brought together a few people for several weeks, until he himself decided who later became founding members of he wanted to return home to Uganda, TASO. After Chris died, she asked several because he was missing his family so much. friends, including Mary Kakeeto, Jane Christopher returned to Kampala towards Mulemwa and me, whether we would join the end of 1986, and continued receiving with her in forming a support group. medical care at Mulago hospital. Mary I was not yet affected – either directly or and I regularly visited him on the ward to indirectly – by AIDS, but I had developed

5 United Against AIDS an interest in the disease through listening Country Director of the British development to broadcasts about it on the BBC, and I agency ActionAid, arranged for Noerine had also felt very moved whenever I visited and Dr Katabira to attend a two-week Christopher in hospital. So I did not hesitate course in AIDS counselling in the UK. They when Noerine invited me to join the group were also able to visit some of the NGOs – I said ‘yes’ straight away. I told my wife, and institutions providing HIV and AIDS Josephine, about my decision to join this services in the UK. On their return, Noerine new group. She told me that many people and Dr Katabira shared with the rest of us with AIDS were coming to the clinic where what they had learned, particularly about she worked as a nurse, and she agreed with counselling. me that they needed much better care and Noerine kept the group together by holding support. meetings at her home and in the Department In April 1987, Dr Elly Katabira started the of Physiotherapy at Mulago Hospital. We also first AIDS clinic in Uganda at Mulago Hospital, visited the sick in their homes and talked to and most of the members of our informal their relatives about how they could offer support group were connected with this clinic them better care and support. Soon, the in some way. The group consisted of Noerine AIDS clinic at Mulago Hospital, which ran Kaleeba, Dr Elly Katabira, Colin Williams, once a week on Friday mornings, became the Rose Ojamuge, Jason Bazebulala, Chanda central meeting place for people living with Williams, Jane Mulemwa, Daniel Etole, or personally affected by AIDS. Lydia Tamale, Mary Kakeeto, David Lule, When we started, the group had no name, Nestor Banyenzaki, Nampologoma, Charles no organisational structure and no funds. Sentamu and myself. Seven of the members We were just a small group of concerned were themselves living with AIDS and were individuals doing our best to support one being treated for opportunistic infections at another and others in need of help because Dr Katabira’s clinic. of the impact of AIDS on our lives. This was The group was completely informal, with our mission, though we did not record it on no name. We came together in solidarity to paper at the time. We had all experienced share information about AIDS and how it was or observed the rejection and discrimination affecting us and our families. We wanted to faced by people living with AIDS and their dramatically reduce the terrible fear, stigma families. We grew closer, united in the belief and discrimination that surrounded the that a person with AIDS should receive disease, which we were seeing daily in the treatment, care and support, like a person hospital and in the homes of some members suffering from any other disease. The of the group. We also took advantage of Dr group stood together against AIDS-related Katabira’s clinic to talk with and comfort discrimination and stigma, and worked those recently diagnosed with AIDS. hard to demonstrate to medical staff, the The work of our small group soon relatives of patients and other community began to draw attention. Colin Williams, the members the kind of compassionate care

6 The beginnings of TASO

Christopher Kaleeba (second, left) is greeted by his wife, Noerine (on left) and relatives on returning to Uganda from the U.K.

Dr Elly Katabira, TASO’s first medical adviser, prescribes medication for a mother and her child in 1989.

7 United Against AIDS

TASO co-founder members Peter Ssebbanja and Colin Williams.

The room in the former polio clinic building, where TASO had its first office.

8 The beginnings of TASO and treatment which all patients need and ‘clients’ rather than ‘AIDS patients’ – a term deserve. we considered stigmatising. In fact, most On 11 November 1987, we decided to people were scared of the term ‘AIDS’, so give the group a name – ‘The AIDS Support we felt that using it would lead to people with Organisation’, or ‘TASO’ for short. We also AIDS suffering even more discrimination. started looking for an office where people We were all committed to doing our best living with AIDS could receive counselling to assist whoever needed help: one of us confidentially. The Medical Superintendent could offer counselling; someone else would of Mulago Hospital, Dr Edward Kigonya, supply a car to drive the client home; others together with Dr Stella Tibumanywa, who was – sometimes as many as three of us – would Deputy Medical Superintendent, responded escort a client home. to our request and allocated a room to TASO This personal sacrifice and human in the former polio clinic building, which we warmth developed into a culture that used for counselling and as our office. would later become better known as the ‘TASO family spirit’. We saw the problem The ‘TASO family spirit’ of HIV and AIDS as ‘our’ problem and we At first everyone working for TASO did so on regarded one another as ‘fellow fighters’ a part-time, voluntary basis. We all had jobs in the battle against the epidemic. We all elsewhere. As the organisation took shape, spoke openly about this ‘helping culture’, however, it became clear that we needed and there was always mutual support and a to have a full-time person in the office, in show of solidarity in accomplishing tasks. order to meet and talk to the new clients We regarded our clients as fellow members who were coming in for assistance. We of the TASO family, and as such they deserved chose Jason Bazebulala, one of the founder maximum compassion and empathy. We members, as TASO’s first administrator. often prayed together, following the biblical Noerine Kaleeba was assigned the post of saying that a family that prays together stays secretary, David Lule became treasurer together. Above all, we were trying to help and I was put in charge of sensitisation people living with AIDS to either maintain workshops and training of new volunteers. or to regain their human dignity. Noerine Despite these titles and responsibilities, we Kaleeba summed it up once: were all still volunteers, with no formal job “We encourage dignity both in life and in descriptions, but we carried out our tasks death. We encourage living positively and in a timely manner and in a heart-warming dying with dignity.” team spirit. We made decisions quickly, after ‘Positive Living’ minimum debate, aware that time was At first there were clients who were rejected precious. This was especially the case for by their families because AIDS-related the people living with AIDS who came to us stigma, based largely on ignorance about for help, whom we decided to refer to as our the disease, was very high. We welcomed

9 United Against AIDS them into the TASO family, where there was friends and family, they were welcomed to no stigma and no discrimination. While we TASO with smiles, handshakes and hugs. observed confidentiality with regard to the Tea and food were provided. Each new HIV-positive status of our clients, we strongly member was encouraged to say something rejected stigma against them. about themselves. I remember one early The demand for TASO’s counselling client saying “I feel good when I am with you”. and support services increased rapidly. Another one said “You are truly a caring In addition to his Friday morning clinic, family”. Some clients did not open up right Dr Katabira volunteered to run a half-day away, but as they saw the non-judgemental clinic in the TASO office every Thursday. care and support available within the TASO As the number of our clients increased, we family, they started sharing their experiences, requested – and received – a second room. and later they brought friends and relatives By then about 30 clients had registered who were also living with AIDS. with TASO, and we were starting to realise that TASO might develop into something Home visits much larger than we, its founders, had ever From the beginning, TASO members imagined. I remember vividly the late David understood that reaching out and providing Lule saying to me one day: “Peter, we all have home care to people living with HIV and to work very hard because this organisation AIDS was essential to fulfilling the group’s will help many people”. And in the end, that mission. Home visits by TASO volunteers is exactly what has happened. made a tremendous difference to the lives One of the most important contributions of individuals and families who could which TASO has made to improving the not afford transport costs for frequent situation of people living with HIV is the hospital visits and admission expenses. It message of ‘living positively’ (see box also allowed relatives to stay at home and opposite). Originally the message was ‘Living continue to earn a living to support their positively with AIDS’; these days we say ‘Living patients and families.1 positively with HIV’. This simple message Initially we used a car belonging to a has given hope, purpose and self-respect TASO volunteer and founder member, to many people living with HIV, and to their David Lule, who was himself HIV-positive, family members. As this message reached to visit patients in their homes. The TASO patients and families who, up until then, had volunteers, who were still not being paid for been suffering alone and in silence, more and their work, contributed from their meagre more people started coming to TASO to seek resources to buy fuel for the car. more information and support, and to learn In April 1988, as TASO became busier how they too could ‘live positively’. Many people were encouraged by the 1 In Uganda, as in many other African countries, it is common for hospital patients to be warm and unique welcome we gave them. accompanied by relatives, who provide for their At a time when many were shunned by physical and material needs.

10 The beginnings of TASO

The tenets of 'Positive Living'

1. Maintain a positive attitude towards 12. Occupy yourself with non-stressful yourself and others. activities such as making crafts.

2. Do not blame others. 13. Accept both physical and emotional affection. 3. Do not feel guilty or ashamed. 14. Socialise with your family and friends. 4. Share your diagnosis with a few significant people. 15. Seek counselling to maintain a positive attitude and talk about your 5. Follow medical advice; seek medical feelings, whether angry, sad, blaming care quickly when attacked by or hopeful. infections. 16. Always use a condom during sex. Even if both partners know they are 6. Take medicines regularly as pre­ HIV-positive, using a condom prevents scribed. pregnancy and avoids passing on other sexually transmitted diseases, 7. Eat plenty of food which is rich in which would further lower immunity proteins, vitamins and carbo­hydrates. to disease. 8. Get enough sleep and do not get over- 17. Avoid pregnancy. It may lower the tired. body’s immunity and can hasten the onset of AIDS in an HIV positive 9. Do not smoke or drink alcohol which woman. (Note: This advice was further lower the body’s resistance given before antiretroviral therapy to disease. became available. TASO now advises couples where at least 10. Take enough exercise to keep fit (but one is HIV-positive on how to not strenuous exercise). have children with very low risk of passing HIV on to the child or the 11. Continue to work if possible. uninfected partner.) with home visits and volunteers began to within local communities, however, really feel the pinch of fuelling the car from their opened our eyes to the enormous intensity own pockets, ActionAid Uganda stepped in of the stigma attached to AIDS within local and provided a small Suzuki car, and money the communities. to pay for running costs. Using the Suzuki Initially, many clients were attracted

11 United Against AIDS to TASO because of our sensitivity in communities informed more people about handling confidentiality about their HIV- our services. This meant that an HIV-positive positive status. We fully understood that diagnosis was not totally confidential to our clients could not feel free to disclose the person concerned, the clinician and their HIV status to communities that were the TASO counsellor. It was, in effect, a not supportive, or were, in some cases, statement that a person was living with HIV hostile. At the same time, however, we and might be in need of understanding, actively and publicly promoted acceptance, help and support from family members and care and support for people living with HIV others in the community. and AIDS, and we felt it was our duty to In fact sometimes, when people saw spread this message in the communities. TASO volunteers in the labelled vehicle, It became clear to us that two conflicting they would stop it and tell them that there principles were at work: on the one hand, was someone in the community who was confidentiality about a person’s HIV-positive unwell and needed assistance. Sometimes status, and on the other, the need for much we were stopped and directed to the more openness about HIV and AIDS, so that homes of people who were suspected of families and communities could offer the living with AIDS but who were hiding in required care and support to those infected their houses. We interpreted this as an and affected by HIV. indicator that people recognised the need Matters came to a head over the issue to provide care and support to members of whether our Suzuki car should be of their community who were living with labelled as belonging to TASO or not. AIDS. Our volunteers were always ready to Doing so would clearly breach patient approach those suspected to be living with confidentiality whenever counsellors went AIDS and to explain the care and support on home visits. Not doing so would mean that TASO could provide. Nevertheless, missing an opportunity to promote greater stigma and denial continued to thrive in openness and honesty about HIV and AIDS the communities and within families and at community level. We decided to label the individuals. vehicle ‘TASO COUNSELLING SERVICES’, After increasing community sensitisation which led to protests from a number of activities, our desire to let the public know clients, who insisted that we should park and get involved in AIDS care and support the vehicle as far as possible from their overtook the fear of stigmatisation. homes. Reprieve came in 1989, when we Eventually, all TASO cars were labelled as acquired two additional vehicles which such. They became, in effect, another means we left unmarked; these were used to visit of informing people about the availability of those clients who felt uncomfortable with TASO services and of encouraging them to the labelled car. come, or to encourage their loved ones and Nevertheless, the labelled car that took friends to do so, if they knew or suspected volunteers on home care visits to the that they were living with HIV.

12 The beginnings of TASO  Eddie: TASO client (From: Living Positively with AIDS. The AIDS Support Organization (TASO), Uganda, by Janie Hampton, Strategies for Hope no. 2, ActionAid, 1990.)

Eddie is 37, an economics graduate of Makerere University, Kampala. In 1981 he and his wife went to Nairobi for months ago, at home. I’ve now lost further studies, returning to Uganda a lot of weight and my skin is often in 1985. A year later his wife had a septic with sores. I am too tired to recurrent fever. work. At first I didn’t want anyone to “The fevers subsided for a while, but know that we had the disease. I even she kept sweating in different parts of worried about being seen going to the her body. She was admitted to Hospital clinic. Then I met two friends there in Kampala with typhoid. Soon after she and we talked about it together. Now came out of hospital, still weak, I visited I don’t care who knows. I feel that my a friend who told me about AIDS. The experience might help others in showing friend suggested that I should be that hiding is no use. tested for AIDS. I was found to be “The children are my main worry. HIV-positive. They are nine, five and three years old “I had never heard of AIDS or HIV now. The young one is always sick, she before and I didn’t know what to do. has a fever and diarrhoea a lot. I’m sure When I went to the doctor for the she has AIDS too, but I can’t bear to results, I couldn’t believe it. He just get her tested. We are very close to said, ‘Well there you are, you’re positive. each other. I know now that I will die You’ve got AIDS, so there’s nothing I before I can bring them up, so what will can do. Too bad.’ I felt like committing happen to them then? suicide. “I often wonder who brought the “I came home after several hours disease into the family. I lie awake at and during supper I told my wife about night wondering which one of us is to the test. After that we cried together. blame. It might have been either of us Then she was tested and we found out I suppose. But now I have joined TASO that she had it too. Her relatives wanted I am trying not to blame anyone, myself to take her to a traditional healer, but or her. OK, I have the disease, but I we couldn’t tell them the truth. am going to use my skills and experience “I was with her all through from the to help other people before the disease start to the finish. She died a few gets me.”

13 United Against AIDS

The need to inform other people, in order living, through which we encouraged to create a support network, led us to adopt people living with HIV and AIDS to lead as the principle of ‘shared confidentiality’, normal a life as possible, it felt as if anyone which we borrowed from the Salvation and everyone could have HIV. In fact, the Army Hospital at Chikankata, Zambia, where volunteers who joined us later did not take Noerine Kaleeba had attended a meeting to HIV tests because it was practically assumed share experiences of community-based HIV that anyone could have HIV. We also had and AIDS work2. some fear of finding out the result, even The principle of ‘shared confidentiality’ though we were encouraging other people was meant to help people living with HIV to take the plunge. to get the right help by enabling some It was not until August 1997, therefore, significant people – especially spouses and that I finally took the HIV test when, following other family members – to learn more about the death of my first wife, Josephine, on 22 HIV and AIDS, and how to care for those who November 1994, I decided to remarry. By were living with HIV. then I had enough information about HIV As TASO volunteers, we also faced stigma. and AIDS, and had found the courage to Many people thought that everyone in TASO accept any result. As it turned out, the result was living with AIDS. I used to hear whispers was HIV-negative. behind me while getting out of the TASO car: “Oh! Look at him; he looks healthy but he Poverty and AIDS must be having the virus”. Some people Based on the intensive nature of our would not even accept a lift in a TASO car. interaction with our clients, TASO volunteers I did not greatly mind their funny comments were faced with a multitude of issues, many about me and the other volunteers, because of which we felt almost overwhelmed by. We I knew that many people still had inadequate were worried, for example, by the rapidly information about AIDS. Nevertheless, I growing number of people with AIDS in sometimes thought strongly about taking an Uganda, and the poor quality of medical HIV test myself, just to be sure. care available to them in our hospitals. It took me a long time, I must admit, Stigma and discrimination continued to be to gather the courage to take the HIV test. massive problems. AIDS was impoverishing There was a fear, naturally, that I could be many families. When one or both parents infected, even though I knew that the risk of were chronically ill and unable to work being so was low. But the virus had spread regularly, the whole family suffered from out very fast in our communities, and one lack of income. Parents were unable to could not say for sure who was infected and pay their children’s school fees, so their who was not. With the philosophy of positive children dropped out of school. They could not afford the cost of medical treatment, or 2 See also From Fear to Hope and AIDS Manage­ even basic needs such as food and other ment, nos. 1 and 3 in the Strategies for Hope series. basic needs.

14 The beginnings of TASO

At a time when many people with HIV and AIDS were shunned by friends and family, TASO welcomed them with smiles, handshakes and hugs.

TASO’s first Suzuki vehicle, donated by ActionAid in 1988.

15 United Against AIDS

Sharing a meal has always been part of the TASO family spirit: founder members Jason Bazzebulala, Rose Ojamuge and Nestor Banyenzaki.

Noerine Kaleeba counsels a mother at the first TASO clinic, 1989.

16 The beginnings of TASO

We raised these issues with our donors positive and creative way. Pre-test and post- and visitors to the TASO office, and they test counselling soon became the norm, and responded by providing support for our a day-care centre was established. clients in the form of food, soap, blankets We realised that there was also an urgent and clothes. Some also provided funds need to teach medical personnel in other for school fees, uniforms and scholastic hospitals about HIV and AIDS. With funding materials such as exercise books, pens and from ActionAid, we conducted three-day pencils. Another way in which we addressed AIDS sensitisation workshops for the staff the problem of poor nutrition was by of Mulago and other hospitals around providing a healthy meal to clients and their Kampala. About 50 medical staff, of different family members at our day-care centres in levels of seniority and specialisation, Kampala and Masaka. The TASO volunteer attended each workshop, which provided staff also participated in this free meal. For accurate information about HIV and AIDS, a while we provided needy clients with a tray introduced basic counselling skills and of eggs every month, but this proved to be promoted positive attitudes towards people too costly so we had to discontinue it. living with HIV. These were not sterile lectures, but highly participatory learning Urgent requests for help experiences, using role-plays and question- Less than a year after we started TASO, word and-answer sessions. spread – largely by word-of-mouth – to Dr Sam Okware, who at the time was other hospitals about an AIDS support group Chairman of the National AIDS Control based in Mulago Hospital that could help Programme in the Ministry of Health, them learn how to respond to the epidemic attended one of the workshops. His in a positive and constructive way. In May recognition, approval and support for our 1988 we received a request to assist a small work, on behalf of the Ministry of Health, was group of health and social workers at the a crucial factor in TASO’s development. The government hospital in Masaka, capital of medical staff who attended these workshops one of districts that had been hit hardest acknowledged that they were an important by AIDS. eye-opener in their understanding of the The group was led by a dynamic young AIDS epidemic. Many took the messages to medical practitioner, Dr Sam Kalibala, who heart and started dealing with AIDS patients a few years later would become the first with more empathy and compassion. We Chairperson of the TASO Board of Trustees. saw this as evidence that the workshops Their most urgent need was to acquire the were successful, and we became even more necessary counselling skills and to teach determined to reach out to other hospitals, medical staff at the hospital how to improve not only in Kampala and other urban areas, the quality of AIDS care. We responded by but in rural areas as well. sending a small team to train staff at Masaka At the end of every workshop, we made Hospital, who responded in an extremely an appeal for volunteers to join TASO.

17 United Against AIDS

However, probably due to the prevailing she said: “Peter, I don’t think we should go. stigma attached to AIDS, very few people Maybe this new organisation will turn out to signed up. The few who joined us were be of much help to us and other people.” mostly nurses who had come across I accepted her advice and went back to people living with AIDS on the hospital Noerine the following day, and told her we wards. After joining TASO, they attended a were staying. Noerine smiled broadly and one-week orientation course, including an thanked me. “I was worried about you introduction course to counselling. leaving at this stage,” she said. We also organised one-day sensitisation Having decided to stay, I happily took on seminars for community groups that we the appointment and worked part-time as identified as we visited clients in their homes. TASO’s training officer, while still teaching The National AIDS Control Committee at the School of Physiotherapy. More recognised the importance of what TASO was requests came into TASO from various doing, and invited Noerine Kaleeba to join organisations and hospitals interested in it as a member. This gave us an opportunity AIDS education and counsellor training. I to emphasise the importance of proper often travelled around the country carrying care and support for people living with out training and community sensitisation AIDS, despite the absence of a cure, and about HIV and AIDS. However, I was not allowed us to start promoting – within the yet competent enough to handle all the government health system itself – the TASO issues related to counselling. An idea was message of ‘Living Positively with AIDS’. floated to send me to England to attend a Because of the growing demand for full course in psychosocial counselling, training, on 1 August 1988 TASO appointed and then come back to train others. Then me as its training officer, but I was still an someone came up with an even better idea, unpaid, part-time volunteer. This was at namely, to invite a trainer from outside a time when many health workers were the country to train counsellors, as well leaving Uganda for better opportunities as trainers, and thus build up TASO’s abroad. I was greatly tempted to join them. institutional capacity. My close friend, David Kisuule, had secured With support from ActionAid and Save me a job in South Africa as a physiotherapy the Children, Jane Lindsay came to Uganda tutor. He was preparing to send air-tickets in September 1988, under the Voluntary for me, my wife Josephine, and our two Service Overseas programme. She worked children. Before finally making up my mind, with me and Dr Jane Mulemwa, an education however, I went to Noerine and told her specialist, on developing a counsellor about the opportunity. From her response, training curriculum. Noerine Kaleeba and I realised that she was disappointed, Dr Katabira were constantly consulted for although she tried not to show it. I went their input, as was Sr Kay Lawler, a social back to Josephine and told her what had worker at Kitovu Hospital in Masaka district, happened. After thinking for a short while, who had counselled many HIV-positive

18 The beginnings of TASO patients. Together we developed the first work. We also attended a short course TASO counselling model and curriculum. on leadership for voluntary organisations, Medical personnel in other district which enabled us to make improvements hospitals were equally overwhelmed by to TASO’s services. the number of AIDS patients turning up for By October 1988, as TASO carried out treatment. Even those who were sympathetic more and more training, and as requests to the patients tended to avoid them, due to support other hospitals kept coming to an unfounded fear of contracting the in, it was obvious that TASO needed larger disease through mere physical contact. office premises. We therefore acquired a These medical workers turned to the AIDS new office, located on Yusuf Lule Road Control Programme in the Ministry of Health in Kampala, which became known as the for help and were advised to draw upon ‘TASO Development Unit’. The unit was TASO's experience, which the Ministry was responsible for defining TASO’s activities aware of by this time. We began to see and guiding the growth and development district hospital medical superintendents of the organisation. Requests for training approaching TASO for help. The greatest and information about what we were doing demand was for training in counselling and were also brought to the Development psychosocial support. Unit. We considered such requests for help vital in promoting TASO’s mission, but we Introduction of a day-care centre lacked the funds to carry out the training. In the middle of 1988 we started the first ActionAid Uganda came to our rescue day-care centre at Mulago Hospital. This again, and offered to fund all of TASO’s was intended as a place where clients training activities. ActionAid also managed could come with their care-givers and to secure funding for TASO for one year other family members to relax, receive from the charity World in Need, mainly counselling and share meals. It was also to cater for training activities, home visits used for the practical training of volunteer and client welfare. However, there was counsellors. The late Kate Nalugya and still no salary or any kind of incentives for Margaret Nalumansi were the first to run the volunteers. the centre, which was located in a small In June 1989 Dr Sam Kalibala, from room in the former polio clinic building. TASO Masaka, and I received funding Our clients were able to share their from ActionAid to attend the Montreal experiences and encourage one another to International AIDS Conference. After the live positively. The joint lunch at the centre conference, we spent five weeks in England, attracted many clients and their relatives. visiting AIDS service organisations such TASO staff also ate with the clients, which as Mildmay International, the Terrence helped to dispel the myth that people could Higgins Trust, Sussex AIDS Care and contract HIV through sharing eating utensils. London Light House, to learn about their Yoga classes were also conducted at the

19 United Against AIDS  Susie: TASO client (From: Living Positively with AIDS. The AIDS Support Organization (TASO), Uganda, by Janie Hampton, Strategies for Hope no. 2, ActionAid, 1990)

Susie, 24, attends the TASO day-care centre most days but sometimes she feels very weak. She has been coughing TASO can help with that. My relatives for three months and frequently could look after them, but they need has diarrhoea and vomiting, with help with food and school fees. headaches. “My husband has gone now. I don’t She took ‘O’ levels, then left school know where. When he knew that both and got married. By 1986 she had two my co-wife and I had AIDS, he just children. Her third child died a few went. He must have it too. I still days after a premature birth. During live together with my co-wife and her her fourth pregnancy she was sick a children. She has two children alive. lot. The baby was born at full term but Three others died. became sick after a week. Susie was “Up to now my parents don’t know. I also ill and they were both admitted will go and tell them myself soon. I don’t to hospital. Sickle cell disease was want them to find out from someone diagnosed shortly before the baby else, but I have to be strong enough died. Susie recovered but was then to cope for them as well as for myself. readmitted to hospital with typhoid. They have paid out so much for me, but “When I found I was HIV-positive, I now they will get nothing back. I cannot did not know what to do. My neighbour help them in their old age. got AIDS and she tried to kill herself “The people we share a house with and her children. I too felt like taking wouldn’t let us live there if they knew. poison. I looked so ill. I couldn’t walk They have said in front of us ‘if anyone or do anything. Then I heard about had AIDS, we would throw them out’. TASO and since then everything has So we can’t tell them, but they will changed. I feel much better now. When suspect eventually. I hope that TASO I am sick they support me and are kind. will help them to realise that it is They give me medicines and some food. not a threat. We are suffering more The counsellors never neglect you, they from this disease because of people’s support you through everything. My ignorance. It is bad enough without children are my main worry. The school ignorance as well. But we have to fight fees are so high. I am hoping that the virus, so we can live longer.”

20 The beginnings of TASO centre to build physical strength and assist had to help resolve misunderstandings and in physical and mental relaxation. conflicts, were commonly referred to as The day-care centre quickly became a ‘Care of Carers’ sessions. popular place for many clients to share their experiences of coping with AIDS. Advocacy for AIDS prevention: It allowed them to express themselves personal testimonies and share their stories of what they were By 1988, cases of AIDS were widespread going through, or had already suffered. throughout Uganda and increasing rapidly. A number of clients started making Although the Government of Uganda was memorial quilts, sometimes with help increasingly vocal about the reality of AIDS, from relatives and TASO volunteers, in the epidemic was still a very private matter, memory of their departed friends and hidden within individuals, homes, villages colleagues. Each quilt bore around and communities. While TASO was reaching 200 names, and three were displayed out to an increasing number of people, the to the rest of the world at the Montreal AIDS epidemic was still shrouded in silence, International AIDS Conference in June secrecy and denial. 1989. The relatives who came to the day- Things began to change in 1989 when care centre saw their attitudes change, a very popular Ugandan musician, Philly as they acquired knowledge about how Lutaaya, told a public rally at Makerere to support their sick relatives and how University that he was living with AIDS. to protect themselves from infection. Although this news was received with Many others, seeing the non-judgemental shock and disbelief, the reality of HIV now reception we gave to our clients, plucked began to register within the population. up the courage to be tested for HIV. Aware that his own health was declining Around the same time another charity, rapidly, Lutaaya used his musical talents German Emergency Doctors, donated a and his personal experience to highlight set of sewing machines to TASO. These the reality of AIDS and the need for action were greatly appreciated by the clients, to curb its spread and care for those who who used them to make clothes for their were living with it. family members and to generate income by The musician visited TASO and identified sewing bed sheets, which were included himself with our clients, thus helping more in the patient care kits distributed to TASO people to learn about TASO and the work clients. we were doing. Philly’s message also had an The day-care centre served as an oasis – impact on our clients and volunteers, who not just for the clients, but often also for the started sharing their experiences through TASO volunteer counsellors, who developed personal testimonies in public. The late the self-support mechanism of sitting Henry Ntege, Margaret Nalumansi and together and sharing experiences about Kate Nalugya were the first TASO clients to their work. These sessions, which sometimes go public about their HIV-positive status.

21 United Against AIDS

This gave other clients the inspiration and Support Organization (TASO), Uganda, courage to accept their HIV-positive status as part of the Strategies for Hope series. and to share this information with other The book and video documented TASO’s people. work and basic approach, and attracted At the beginning of 1989, ActionAid widespread national and international UK commissioned two British writers, attention. Although we did not realise it at Glen Williams and Janie Hampton, to the time, these two materials raised TASO’s produce an information booklet and video, international profile sharply and helped to Living Positively with AIDS – The AIDS launch TASO on the global stage.

22 TASO's mission, values and work ethos

Chapter Four TASO’s mission, values and work ethos

By 1989 TASO was facing rapidly rising 6. To support community initiatives and demands for AIDS counselling services, and efforts in HIV and AIDS programmes. we were still learning about the increasingly complex needs of people living with AIDS. We also defined and wrote down TASO’s At the same time, TASO staff were still mission and values, as follows: part-time, unpaid volunteers. To maximise the impact of our limited human and Mission: “TASO was founded to contri­ material resources, we needed to identify bute to the process of restoring hope our areas of action, and to agree on strategic and improving the quality of life of objectives that could be incorporated into our persons and communities affected by HIV programme. We therefore held workshops infection and disease.” to decide on the way forward. We invited We later expanded the mission to mention key stakeholders such as the National AIDS what TASO wanted to see done at individual, Control Programme, Kitovu Hospital Mobile family, community, national and inter­ Home Care Programme, Nsambya Hospital national levels. Mobile Home Care, the Catholic Medical Bureau and the Protestant Medical Bureau. Values: As a result, we agreed that TASO would have 1. Human dignity the following broad objectives: 2. Obligation to people infected and affected 1. To offer counselling to people with HIV by HIV and AIDS and AIDS, and their family members 3. Equal rights, shared responsibilities, 2. To train counsellors for TASO and other equal opportunities service organisations 4. Family spirit 3. To provide complementary medical care 5. Integrity. to people living with HIV and AIDS At the heart of TASO’s mission is our focus 4. To change people’s attitudes towards on people living with HIV and AIDS and those living with HIV and AIDS their families. We have always believed that 5. Where possible, to minimise the social ills people living with HIV, properly informed associated with HIV and AIDS, and and supported, would also become effective

23 United Against AIDS advocates of the behaviour changes needed AIDS are cared for, when their dignities are to help prevent the further spread of HIV. restored, when they no longer fear that they This principle has since been widely accepted are going to be persecuted, they will play a by community groups, governments and much more visible role in prevention than international organisations throughout those who are not.’” the world. At the time, however, it was an In the event, USAID did agree to support untested theory, as Noerine Kaleeba recalls: TASO’s work in Uganda, and it continues “What we did almost instinctively, without to do so. We believe that people living really having scientific proof, was to focus with HIV have made a huge – but largely our efforts on the person who is infected and unrecognised – contribution to HIV affected. Even as early as that time, we were prevention in Uganda. very convinced that the infected person is Our services soon outgrew the rooms not a problem, but part of the solution.” provided at Mulago Hospital, but the Some potential donors whom we hospital administration and the Ministry approached in the early days did not share of Health agreed that we could construct our belief that prevention had to involve, at a counselling centre within the hospital its core, people living with HIV and AIDS. premises. Funds were obtained from World Noerine recalls a conversation she had in Need, and the new counselling centre with Paul Cohen, Head of the USAID Health opened its door on 1 June 1989. I was Office in Uganda in the late 1980s, about the assigned responsibility for the counselling need to focus on those already living with centre, as we waited on funds to recruit a HIV and AIDS: full-time administrator. “I asked Paul what HIV prevention meant Meanwhile, the number of AIDS patients to him. He answered: ’Well, to ensure that on the wards at Mulago Hospital grew daily. those people who are not infected don’t The once-a-week day AIDS clinic (known get infected.’ So I asked: ’Where will those as the ‘Immuno Suppression Syndrome people who are not infected get the infection Clinic’) in the hospital was not enough to from?’, and he replied: meet the needs. Although we had started ‘From those who are infected.’ So I TASO to complement the government then said: ‘If we could motivate those health units, we ended up taking on greater people who are HIV-infected to recognise responsibilities than we had anticipated. The that it is in their interest that some people Ministry of Health, for its part, was happy remain uninfected, we would make a huge to have TASO as an active partner in the difference.’ struggle against AIDS and its overwhelming ‘I have never looked at it from that impact on the public health facilities. perspective,’ Paul replied. We therefore started running two follow- So I then said: ‘If you can give us just a up AIDS clinics a week, and the government little bit of money, we can demonstrate that seconded doctors to come and attend to when people who are living with HIV and patients in the TASO clinic. As we were

24 TASO's mission, values and work ethos located conveniently within the hospital more likely to take appropriate actions to grounds, it was easy for doctors to come protect themselves and their loved ones. in and out of our clinic. The doctor-patient Those who tested HIV-positive could seek relationship in the TASO clinic was seen as treatment, care and support, and could exceptionally good. In addition, drugs to change their behaviour to ensure that they treat opportunistic infections were free and did not infect others. Similarly, those who TASO volunteers provided counselling to the tested negative could take appropriate patients and their families. actions to ensure that they did not contract In October 1988 the Ministry of Health, HIV, for instance, by abstaining from sexual which was planning to set up AIDS clinics activity, by being faithful to their partners, or in government hospitals, asked TASO to by practicing safer sex using condoms. embark on a training programme for It quickly became clear, however, that clinical doctors. At around the same time, in order to meet the increasing demand the medical superintendent of Mbarara for HIV tests, a dedicated organisation had Hospital, Dr Asiimwe, invited us to go and to be formed with the specific mandate of talk to the staff about AIDS counselling. This offering both counselling and testing. So led to the opening of the TASO Mbarara we sat together with several organisations, branch a few months later. including the Uganda Red Cross, Nsambya Home Care, the National Blood Bank, the Voluntary Counselling Uganda Virus Research Institute and the and Testing Ministry of Health, and in January 1990 As awareness of HIV and AIDS increased, we suggested the establishment of the AIDS and as AIDS-related stigma and shame Information Centre (AIC). USAID offered to gradually decreased, more people wanted to fund the organisation, whose first Director find out their sero-status, and we began to was the late Lydia Barugahare. TASO trained see a lot more demand for HIV testing. its counsellors until they developed their At the time, HIV testing was not available own curriculum. in hospitals. The National Blood Bank in The AIC introduced the concept of Kampala and the Uganda Virus Research Voluntary Counselling and Testing (VCT) to Institute in Entebbe were carrying out Uganda. This was a unique concept, in that HIV tests, but their capacity was limited people who came to have their blood tested and results were made available only after for HIV received counselling beforehand to two weeks. These two organisations were prepare them to accept the results, whether also under immense pressure to meet the positive or negative. After the test, they growing demand for HIV testing. received post-test counselling, in which We realised the importance of increasing those who tested HIV-positive were referred access to testing facilities. Once people either to TASO or to another institution with knew their HIV sero-status, if properly facilities for providing care and support. counselled and supported, they would be Those who tested negative, for their part,

25 United Against AIDS were encouraged to adopt safer sexual we would emerge with renewed resolve, behaviour in order to protect themselves convinced that, although AIDS could win from HIV infection. battles over the lives of individuals, we would The AIC also formed a post-test club, in win the war in the end. We particularly which both HIV-negative and HIV-positive celebrated the fact that, although AIDS had people came together to share experiences. killed one of us, they had not passed the This helped to reduce the stigma and virus on to others. In effect, ‘their’ virus discrimination which was still attached to had died with them. AIDS. The new organisation also worked Yet we did not lose sight of the massive to encourage more people to take HIV challenges that lay ahead of us. On tests, especially spouses and other sexually the contrary, we continued the process active adults. of creating a formal structure for the organisation, including several posts for Establishing staff structures full-time, paid staff. ActionAid supported In January 1990, Noerine Kaleeba requested TASO in applying to the UK’s Overseas permission from the Ministry of Health to Development Agency (later renamed the relinquish her role as Principal Tutor of the Department for International Development) School of Physiotherapy, in order to devote and USAID. To our great delight, these herself full-time to TASO. She was then applications were successful, which meant appointed Director of TASO by ActionAid, that we could start paying salaries to our which was providing administrative support full-time staff members. At this point I too to TASO and was legally responsible for the decided to devote myself full-time to TASO, young organisation until 1991, when TASO in charge of the organisation’s rapidly was registered with the NGO Board. All expanding training activities. In January TASO staff members were still working for 1991 the Ministry of Health agreed to release the organisation on a part-time, voluntary me, and I became a full-time, salaried TASO basis because we could not afford to give staff member. up our full-time jobs. Although we still had no formal rules or More volunteers had joined us and were policies yet with regard to hiring staff, we did making important contributions to our have a procedure for assessing applicants work. However, seven of the original 16 for jobs with TASO. For example, after the founder members had passed away. There vacancies were advertised, the short-listed was always a feeling of tragic loss whenever candidates would be invited to a three-day one of our founder members, or a family sensitisation workshop about HIV and member, died. It did not discourage us, AIDS, where their attitudes and enthusiasm however, from continuing our fight against were observed and evaluated. Those who HIV. We would meet and talk about the appeared to have negative attitudes towards departed, remembering the contribution HIV-positive people were eliminated. Some they had made to the ‘struggle’. Then decided for themselves that they could not

26 TASO's mission, values and work ethos

Graduation ceremony for counsellors trained by TASO in 1993.

The TASO Community Initiative Programme received technical support from Becky Bunnel, a consultant from ActionAid.

27 United Against AIDS

Dr Sam Kalibala, newly elected Chair of TASO's Board of Trustees, has a word with Honorary Treasurer, Ian Smith, at TASO's first Annual General Meeting in April 1992.

TASO's first music, dance and drama group, at Mulago in Kampala, perform at the TASO Annual General Meeting in 1993.

28 TASO's mission, values and work ethos fit into the TASO family and withdrew their TASO, but most belonged to the Ministry of applications. Those who stayed the course Health and other organisations. were then given an in-depth interview to determine the best candidates for the Community Initiative available jobs. programme Between 1992 and 1993 we took a step in TASO expands another direction, when we introduced the With increased funding now coming in, ‘TASO Community Initiative programme’. TASO’s growth and expansion continued. This was done to further sensitise, educate, Between 1991 and 1993, new TASO stimulate, involve and support community service centres were opened in the district members in AIDS programmes, so as hospitals of Mbale, Entebbe, and Jinja. to create a conducive environment for Each TASO centre was headed by a manager individuals and families to live positively. who was responsible for keeping the It involved linking up with civic leaders to Director informed about the activities. The mobilise members of their communities to Director also visited each of the centres join in designing and implementing HIV and regularly to orient herself with the work AIDS programmes locally, and encouraging there and provide support and advice them to contribute any resources available. where necessary. Importantly, members of the community had We also embarked on training more to identify community volunteers who would counsellors as trainers so that they, too, be trained by TASO to run the programmes. could train others, thus enabling the We received technical support from organisation to handle the increasing ActionAid, led by a consultant, Becky Bunnel. workload. Some of those we trained early The programme kicked off very well in a on to train others included Fred Kagimu number of communities in and around Bikande, Mary Kakeeto and Lucy Shillingi. Kampala, before it was expanded into rural It was also around this time that we started areas. However, the programme was not collecting books, journals, scientific papers, without its challenges, for example, getting videos and other educational materials. people to gather in sufficient numbers These grew into a very rich resource centre and encouraging some to work as unpaid with useful materials on counselling and the volunteers. In an effort to overcome these management of HIV and AIDS. obstacles, we scheduled the meetings in the In 1993, the first 112 AIDS counsellors evenings, when most people had finished graduated at TASO Mulago Counselling work, and also introduced some incentives Centre in a historic and colourful ceremony for the volunteers to raise their enthusiasm. presided over by the Minister of Health. Each had been trained over a six month period, Staff support and development including 20 weeks of practical work. Some ActionAid-Uganda’s Country Director, of the trained counsellors were employed by Colin Williams, continued to support TASO’s

29 United Against AIDS administrative development and fundraising later in the same year. We then embarked efforts, while helping to build staff capacity on the process of recruiting members to in organisational management and subscribe to the organisation. administration. He shared his management In April 1992 TASO held its first Annual experience, always with the goal of enabling General Meeting, and formally elected the TASO to grow into a mature and independent Board of Trustees for the first time. The organisation. He regularly participated newly formed TASO Mulago Music, Dance in TASO senior staff meetings and, where and Drama Group (see box opposite) necessary, guided the team and offered performed songs which their own members logistical support. He also linked us to had composed. Dr Sam Kalibala, who a various courses such as the one for senior few years earlier had invited TASO to train and middle managers at ActionAid’s training staff at the government hospital in Masaka, centre at Kiboswa, near Kisumu, Kenya, was elected as the first Chairperson of the which I attended in April 1993. board. Ian Smith, who had succeeded After David Lule, treasurer and founding Colin Williams as ActionAid-Uganda’s TASO member, passed away, ActionAid Country Director, was elected Honorary seconded one of its staff members, Erisa Treasurer. Annual General Meetings became Lukanga, to help TASO with financial an opportunity for every subscribing TASO management and accountability. When Colin member to vote for the board members of Williams moved from Kampala to Harare in their choice. People living with HIV were 1993, the new Uganda Country Director, Ian always encouraged to participate fully, Smith, continued to support TASO. and had their own representatives on the At TASO headquarters, an executive board. Board members, who came from committee was established, which consisted varied backgrounds and different parts of of the Director and four senior staff members, the country, had two-year terms and could and the Treasurer of the Board of Trustees. be re-elected only once. This sat once a month to examine the In 1991, three major departments were running of the organisation. created within TASO: Programme Planning and Development, Administration, and Governance and organisational Training. Each department was assigned a structure leader. I headed the Training Unit, which had In 1991 a Board of Trustees was appointed by then moved into more spacious premises. to look after the interests of TASO. It In order to upgrade our knowledge and consisted of nine people who were carefully management capacity, I was part of a group selected by the TASO management for their of five staff members who attended a six sympathy and support to TASO. The Board, week course in communication and strategy which was chaired by Colin Williams, drafted development at Cornell University, USA, and a constitution in preparation for TASO’s a two-week course in AIDS epidemiology at formal registration as a not-for-profit NGO John Hopkins University, also in the USA.

30 TASO's mission, values and work ethos

Music, dance and drama In 1992 the day-care centre activities as World AIDS Day and the annual at TASO Mulago uncovered a group of Candlelight Memorial ceremony. This clients who were particularly gifted at was highly encouraging for the members music, dance and drama. Inspired by of the drama group, who felt that they the example of Philly Lutaaya several were valued by local communities, years earlier, they began putting on while also helping TASO itself to fulfil performances about ‘positive living’ and its mission. HIV prevention through songs, poems, Soon, every TASO centre throughout plays and personal testimonies. They the country had its own drama group, began performing in local communities, which would meet several times a where they attracted an enthusiastic week to practice and perform. In 2003 following from people of all ages. we moved a stage further, by hiring TASO decided to support the drama professional people to train the drama group by providing musical instruments, groups. We also began organising costumes, transport costs and meals. annual competitions to judge the best The communities themselves showed songs, plays, personal testimonies and their appreciation by providing the drama messages. These steps have helped groups with funds. Invitations started to raise the quality and impact of the coming in for the group to perform in performances of the groups, and have other places at special events such also been popular with group members.

By 1994 TASO had developed a structure, prestigious King Baudouin International policies and basic systems. Slowly but surely, Development Prize, which Noerine Kaleeba we had managed to transform ourselves travelled to Brussels, Belgium, to receive on from a support group of volunteers into behalf of the organisation. The Selection a fully-fledged AIDS service organisation, Committee awarded the prize to TASO “for capable of raising funds and accounting to the example of solidarity it sets and its our donors on how these were spent. As we effectiveness as an instrument of community found our own feet, financial and technical development, particularly in the field of AIDS support from ActionAid steadily diminished, prevention and support for AIDS patients but we still maintained close and cordial and their families in Uganda”. relations with the organisation, which had played such a crucial role in helping us Growing pains become established. As TASO continued to grow, the need to It was also in 1994 that TASO received evaluate service quality and effectiveness an unexpected windfall in the form of the became a matter of critical importance.

31 United Against AIDS

Periodic workshops were organised for in order to continue expanding. We were TASO staff and board members to discuss forced to institute stop-gap measures in and reflect on the progress we were order to address this problem. For example, making and the challenges we still faced we decided to stop providing lunch at as an organisation. As TASO strived the day-care centre and also halted the for openness and transparency as an distribution of eggs to clients. We resolved organisation, these conversations were not to open any new counselling centres, always frank and sincere, allowing for a and to develop the training unit into a self- critical examination of TASO’s activities. sustaining entity which would be able to Challenges were addressed, gaps identified, offer training to other organisations on a and solutions were sought through wide range of topics. collaborative problem-solving exercises. We decided therefore to use our reserves These methods helped TASO to grow into to buy a large piece of land at Kanyanya, on a robust organisation that was not afraid to the northern outskirts of Kampala, where we accept new challenges, but remained self- built our main training centre. In the midst critical and vigilant against errors, which of these growing pains, however, we were we were quick to identify and correct. confronted with a sudden and unexpected In 1994 TASO began to experience challenge: the need to find a new leader to difficulty in raising more donor funding replace Noerine Kaleeba.

32 Change and leadership in TASO

Chapter Five Change and leadership in TASO

In February 1995, after more than seven now came the responsibility to head TASO, years of dedicated service to TASO, Noerine an increasingly complex and fast-growing Kaleeba announced her decision to retire organisation. as Director in May of the same year. She I saw it as a massive challenge to follow accepted a position with UNAIDS, answering in Noerine’s footsteps. Her charismatic a call to use her experience to strengthen leadership and brilliant advocacy skills community responses against HIV and AIDS had brought TASO worldwide recognition. worldwide. I remembered the speeches she had given We all felt extremely apprehensive at the at the World Health Assembly in Geneva prospect of seeing Noerine, the mother in 1993 and at the International AIDS of TASO, leave the organisation. In fact Conference in Yokohama in 1994, where she we could hardly imagine how TASO could emerged as a gallant and visionary leader in continue. Some of us asked her: “Noerine, the global fight against the AIDS epidemic. can you give TASO a few more years I doubted whether I could reach her lofty before you leave?” She listened quietly but levels. Nevertheless, I was not alone; the answered: “When a mother sees her child entire TASO family gave me support and beginning to walk then she has to let him encouragement and held my hand, literally, or her walk. TASO is now grown and can while I led the organisation during the continue well with the support of the local period of several of months when Noerine’s and international community, so please successor was being recruited. let me reach out to other communities Soon after I became Acting Director, elsewhere to give the message of living TASO’s funding situation became critical positively with HIV and AIDS.” due to the delay in remitting promised funds I took over as Acting Director of TASO by a new donor. This was an extremely in February 1995, only three months after stressful time for me and all staff members. I lost my dear wife, Josephine Babirye, to Budget cuts were made and some employees breast cancer on 22 November 1994. This laid-off to reduce the wage bill. The job was an extremely difficult time for me. I insecurity increased tensions and stress was still deeply worried about my future and within the organisation, testing the ‘family that of our five children, the eldest of whom spirit’ to the limit, while we scaled down was 11 and the youngest only three. Here our activities to within the constraints of

33 United Against AIDS  Noerine Kaleeba: charisma and passion for service

Noerine Kaleeba’s charisma and passion for service to the needy were the hallmarks of her leadership style as Director of TASO from 1990 until 1995. Much of the innovative work which TASO carried out – especially in the field of HIV counselling – during Noerine’s term of office is now well Noerine’s views have been accepted known and respected internationally. and emulated by many other people Yet most of her ideas were original, involved in community-based HIV and had not been tried anywhere else in programmes, especially in Sub-Saharan Uganda or in sub-Saharan Africa. Africa. In 1992 she was appointed She earned widespread respect a member of the Uganda AIDS among international organisations such Commission to represent NGOs. She as UNAIDS, for whom she worked has also been honoured by a series from 1995 until 2006. She has been of awards, including the ‘It Works’ a strong and compelling advocate of award from NORAD in 1990, the World the rights and dignity of people living Health Organisation’s Dr C.A.A. Quenum with HIV, but she has also stressed Prize for Public Health in Africa in the importance of respect and support 1991, and Honorary Doctorates from for the families of those who are living Nkumba University in 2000 and Dundee with the virus. University in 2005.

the funds available. However, we remained In September 1995, the TASO Board optimistic about receiving the promised of Trustees appointed Sophia Mukasa funds, and encouraged the remaining staff Monico as the new Director of TASO. A members to continue working hard, as qualified and practising lawyer, who had this was the surest way of attracting more been widowed while living in Italy, Sophia funding for the organisation. also faced the steep challenge of having

34 Change and leadership in TASO to follow in Noerine’s footsteps in leading We introduced a counsellor’s course and a the organisation into an uncertain future. community trainer course, and moved the She, however, was totally undaunted by training centre to Kanyanya, on the outskirts the challenge: in fact she seemed to relish of Kampala city. Moreover, in order to cut it. I recall how she spent her early days costs, we decided to move TASO’s main observing the organisational practices, staff administrative offices to Kanyanya. work ethics and attitudes, and the various We also embarked on a process of norms and traits that made up the TASO decentralising some of our administrative culture. functions from the headquarters to the When Sophia joined, we were in the service centres. There was a proposal to process of offering feedback to the TASO let the service centres become autonomous centres on the results of a participatory and do their own fund-raising. This was evaluation of the TASO services which we rejected by the centres themselves, who had carried out in 1994. I took Sophia argued that they did not have the capacity around our seven service centres, giving or the fundraising skills to compete for and her an opportunity to meet the staff and the attract funding. We decided that donor fund- clients, and to see how the TASO service raising would continue to be done centrally delivery system worked. Sophia told me she by the headquarters, while the centres was impressed with what she saw, especially would be encouraged to fund-raise locally the high commitment to the work by both to complement the central efforts. junior and senior staff members, as well as the systems in place. “My major task,” she Basket funding said, “will be to make progress from the In 1996 TASO negotiated successfully with high level to which Noerine had brought most of its donors to introduce a system TASO.” of ‘basket funding’. Previously, donors Meanwhile, TASO was still suffering severe gave money for specific programmes and cash flow problems. Relief finally arrived activities of their choice, which left some in January 1996, when a large grant from other activities with little or no funding. the Danish Development Agency, DANIDA, Under the ‘basket funding’ system, however, came through. This made it possible for all money from the donors involved would us to re-hire the majority of staff who had be pooled in a ‘basket’ and then allocated been laid off. The ensuing atmosphere was to priority activities, according to one like a good family reunion. However, we strategic plan. This would make planning, now became even more conscious of our accountability and reporting easier, while heavy reliance on donor funding in order also making programme funding more to sustain TASO services. predictable. We decided therefore to make the training As a result, our funding grid improved unit self-sustaining by running courses for greatly, enabling us to consolidate the other organisations on a cost-recovery basis. services we provided to our clients. USAID

35 United Against AIDS remained outside the ‘basket funding’ health, and was able to continue looking mechanism, but its contributions to TASO after his family until he passed away on 30 were still substantial and very important. April 1998. His wife died two years later, Funds from USAID’s LIFE programme, for leaving their four orphaned children, aged example, enabled us to scale-up our support between three and 10, in my care. for orphans and vulnerable children, many of whom received school fees through the Pressure on the ‘family spirit’ programme. In addition, the USAID-funded Due to the increasing number of new clients ACDI/VOCA programme provided TASO registering at the seven TASO centres, staff clients with nutritional supplements in the members found themselves spending less form of corn soya blend, beans and fortified time interacting with individuals. The cooking oil. time for casual interaction amongst staff members also decreased, putting strains Bringing it all back home on interpersonal relations and the family TASO was by now growing rapidly as spirit within the organisation. We therefore an organisation, and we also began to began to look for ways of coping with the see increasing openness about HIV and increasing workload. We paid greater AIDS amongst individuals, families and attention to time management and record communities. But at the level of individual keeping, and we even introduced stress- families, HIV was still causing great pain and management retreats for the staff of all suffering. In 1997, one of my brothers told centres. In addition, in 2000 a volunteer me he was HIV-positive. He was my first from Voluntary Service Overseas, Pete biological family member to reveal his HIV- Sketchley, spent a year with us, addressing positive status, not only to me but also to other stress management issues and training TASO relatives. I was very sad, but I also felt that staff in how to deal with these. I had the knowledge and skills to help him We were still very concerned, however, live positively, since I had been trained as a about preventing staff ‘burnout’, as there were counsellor. I also realised that, having seen a few signs of staff getting tired. We therefore HIV come into my own family, the virus had organised retreats and stress management well and truly settled into our community. workshops where TASO counsellors and With my encouragement, my brother other staff could discuss the challenges of registered as a client with TASO Jinja branch. their work in a relaxing physical environment, Whenever we met, we would spend time such as a national park, where they could go together talking, and I would provide him on nature walks. This helped to rejuvenate with some financial support. He told me he our morale and to revive our enthusiasm to felt very good when he was warmly received continue working. at the TASO clinic, although, as my brother, As TASO became more professionally I imagine he received a little extra warmth. run, it was important to maintain the family He became firm and regained energy and spirit within the context of an organisation

36 Change and leadership in TASO

Noerine Kaleeba, TASO's founding Director, serves a cake to clients at her farewell party in September 1995.

Peter Ssebbanja and his children in 1994. He became Acting Director of TASO in February 1995, only three months after his first wife died.

37 United Against AIDS

Sophia Mukasa Monico (TASO Executive Director from 1995-2001) receives a consignment of medicines from the World Health Organization.

TASO staff on a nature walk: excursions and retreats have helped staff to cope with stressful jobs and avoid burn-out.

38 Change and leadership in TASO which, by this time, was quite large and guide the process. We opted for a gradual results-oriented. A few staff members process, in which we periodically increased misinterpreted and sometimes misused the the autonomy of each centre, including their family spirit as cover for underperformance ability to take some decisions after minimal of their duties, assuming they would not face consultation with the head office. The aim any form of punishment. This was contrary was to improve the performance, efficiency to the expectations of their supervisors, who and cost-effectiveness of each centre, insisted on the importance of achieving good allowing the head office to concentrate on performance results. policy formulation, guidance, standards and Our Director at the time, Sophia Mukasa quality control, as well as setting regulations, Monico, always stressed the uniqueness monitoring activities and fund-raising. We and importance of the TASO family spirit. It also expected that decentralisation would kept staff members happy and united, and encourage further public sensitisation and helped them to show more compassion to enhance the roles played by local government clients and their relatives. It also narrowed officials and community leaders. the gap between staff and clients, and This meant improving our systems, encouraged clients to participate fully in including our decision-making processes, the planning and implementation of TASO’s resource allocation and channels activities. However, Sophia also firmly of communication. One of the major believed in professional conduct, high strengths identified by the consultant was quality performance and good discipline in the link between the centre managers, the the organisation. community and the district leadership, via The staff Code of Conduct was revised, the Centre Advisory Committees. These strengthened and strictly observed. A nine-person committees are elected by disciplinary committee comprised of senior members of the community within which the staff and some members of the Governance centre operates. They are elected during the Board was set up to oversee staff conduct centre’s Annual General Meeting and advise and ensure that the family spirit was not the centre management and the head office. misinterpreted or misused. It was now They also play a crucial role in mobilising emphasised to everyone that displaying a community awareness of, and support for, high commitment to work and achieving set TASO. targets was actually part of the family spirit, We also enjoyed close collaboration not in contradiction to it. with other NGOs and community-based organisations in the districts, but we felt the Decentralisation of need to strengthen such links and establish management new connections with influential members of In 1998, TASO felt ready to start decentralising the private and local government sectors. its services to the six service centres outside The need to improve the job-related skills Kampala, so we hired a consultant to plan and of personnel at all levels also became a top

39 United Against AIDS priority. The staff training policy was revised that targets and technical standards were and a new position, Human Resources set, and that all centres adhered to TASO’s Manager – based at the head office – was policies and regulations. Senior staff created. Each centre manager drew up a from the head office periodically carried personnel development plan, in which they out management audits at the centres. At outlined proposals to increase the skills of the same time, the capacity of the Centre their staff. Advisory Committees was strengthened The centre managers and senior staff through intensive workshops. members at head office all went through The decentralisation process also in-service training in order to improve included a move to turn the Training Unit their knowledge and skills in areas such into an autonomous entity. However, this as personnel, advocacy, and financial and did not move at the expected pace due project management. In October 1998, to a number of challenges, particularly together with one other TASO colleague, I the lack of staff and resources to realign left for a three-month Project Planning and and decentralise the administration of Management course at Arhus Technical the Training Unit. We needed to get more College, Denmark. Unfortunately, this was trainers trained and to equip the Training only two months after I had re-married, Centre, but the funds required were not to Grace Namwanje, so the separation readily available. Meanwhile the requests from my new wife and my family was very for training continued to arrive, and we had difficult for us all. However, the course was to respond to them. very important for me and for TASO, so we Despite all these changes and challenges, accepted the personal hardship involved. we kept the doors of the seven TASO service In preparation for the devolution of centres open to our clients. Expansion into some powers from TASO head office to the other districts, however, was halted. Instead, centres, which provided services to our we concentrated on strengthening the existing clients, we conducted a series of in-house centres and turning them into ‘centres of workshops for all centre managers, heads- excellence’. This meant that the centres had of-departments and members of the Centre to be expanded to provide more counselling Advisory Committees. These workshops were rooms and office space. New buildings were to re-define the roles and responsibilities therefore constructed at TASO Mbale, of service centres in relation to the head Tororo, Entebbe and Mbarara. office. The monitoring and evaluation system Meanwhile, the community education was reviewed and improved to ensure the programme on HIV prevention and AIDS sustainability of quality TASO service delivery care continued in the previously mobilised in all the centres. communities. We regarded this work as TASO head office remained responsible a way of sustaining the enthusiasm of the for ensuring that the mission and objectives public to combat AIDS. However, due to of the organisation remained in focus, the slowness with which the communities

40 Change and leadership in TASO

TASO's community education programmes on HIV prevention and AIDS care continued throughout the many changes in central management and structures.

Dr Alex Countinho (TASO Executive Director, 2001-2007) presents a certificate to a trained peer counsellor.

41 United Against AIDS

Dr David Matovu (standing), Chairman of the Board of Trustees between 1999 and 2006, oversaw the smooth changeover from Sophia Mukasa Monico to Dr Alex Coutinho in 2001.

Robert Ochai, having spent most of his working life with TASO, became Executive Director in October 2007.

42 Change and leadership in TASO responded to the programmes, and the The change in the top leadership was ably limited funds available to us, we decided to overseen by the TASO Board of Trustees, led limit the number of new communities to be by Dr David Matovu, who chaired the board mobilised to one per centre, per year. from 1999 to 2006. There was a smooth and orderly handover period from Sophia More changes at the top Mukasa Monico to Dr Coutinho. In 2001 TASO experienced another change My initial impression of Dr Coutinho in its top leadership. In January of that year, when he joined TASO was that, as a medical Sophia Mukasa Monico announced that she doctor who had been involved in HIV work would be leaving the organisation. A few for nearly 20 years, he would contribute a months later she was replaced by Dr Alex G. lot to the treatment side of TASO’s work. Coutinho, a graduate of Makerere University I also thought he was very dynamic and who had been working as a medical entrepreneurial. As it later turned out, he practitioner in Swaziland. We were all very had all these skills and more. In fact, I sad to see Sophia leave TASO. She had had actually underestimated his abilities! ably filled the gap left by Noerine Kaleeba’s He brought to the job very important departure, and had helped us realise that management experience, which he had TASO had grown into a mature organisation, gained while working in the private sector with its own robust systems and structures. in Swaziland. The corporate mentality which Sophia left to join the International Council he had acquired would prove decisive in of AIDS Service Organisations in Toronto, TASO’s expansion over the next several Canada. We had already worked with years, as he took calculated but ultimately ICASO in AIDS advocacy campaigns and successful risks. At the same time, he was felt that, with Sophia there, our link to that deeply committed to professionalising organisation could only get stronger. the way TASO programmes were planned, Over the previous six years, Sophia implemented and evaluated. had successfully consolidated TASO’s While orienting himself to TASO, Dr programmes, ensured that essential Coutinho was supported by the existing management and programme systems were strong senior management team. Systems in place and, crucially, negotiated a multi- continued to function well and activities year, ‘basket funding’ commitment from our ran normally. Having realised how development partners. Some TASO centres much potential TASO had, Dr Coutinho had expanded rapidly and our clientele had decided to implement changes to help more than doubled under her leadership. the organisation perform to its potential. TASO was thus in good shape to launch a He quickly embarked on streamlining the new phase that would enable it to continue administration, expanding the workforce to grow, supported by commitments at and mobilising funds. A consultant was the national and global levels to fund HIV hired to review staff job descriptions and prevention and AIDS care programmes. salaries, and to review and streamline lines

43 United Against AIDS of command to ensure rapid decision- Noerine Kaleeba believes that this smooth making and implementation. transition from one leader to the next has Fund-raising was high on the agenda to been a major factor in helping TASO to ensure that there was sufficient money to run grow, while also maintaining high quality programmes. The decentralisation process services: “In TASO, at every stage there continued, but was closely monitored was a very clear succession plan from one and regularly reviewed, while the process leader to the next. No leader has ever come of enhancing staff skills and knowledge to TASO planning to stay indefinitely. That’s continued. I was among the beneficiaries very important. Every leader has brought of a scholarship to study a Masters degree in a slightly different perspective but TASO’s Public Health (Health Promotion Sciences) mission has never changed over the last at the London School of Hygiene and 20 years”. Tropical Medicine, University of London, in The period 2001 – 2007 was an 2002-2003. This course highly enriched my exciting one for TASO, marked by growth, performance as Director of Advocacy. development and innovation. It was a Dr Coutinho decided to leave TASO in period of new programmes and of increased October 2007, after six years of highly partnerships, establishing TASO in the successful service. He was succeeded by forefront of AIDS service organisations Robert Ochai, who had joined TASO in worldwide. The vision of the founders 1991 as a branch manager. Unlike his in 1987 had grown beyond their wildest three predecessors, Robert had spent most dreams, but TASO still continued to focus of his working life with TASO. Again, there on restoring hope, defending the dignity of was a smooth handover from the outgoing HIV-positive people, and bringing life back director to his successor. again to TASO clients and their families.

44 TASO services and other activities

Chapter Six TASO services and other activities

Since its establishment in 1987, TASO has which began as a small group of untrained provided a range of services to over 180,000 volunteers. clients and their children. During the course Due to the changing nature of the AIDS of 2006, TASO provided services to a total of epidemic and the ever-increasing client 80,592 clients. The gender distribution of load, TASO has adapted its approach to TASO clients is skewed in favour of women: counselling, which now includes group 65 percent of TASO clients are female and counselling, family-based counselling, 35 percent male. couple counselling and child counselling (see box, p. 46). Each of these types of Counselling counselling was researched, guidelines Right from the beginning, counselling has were prepared and training curricula been TASO’s area of ‘core competence’. developed. A particularly valuable In TASO, counselling is a process aimed at resource has been TASO clients themselves, enabling clients to live positively, to cope many of whom have been trained as with stress and to make informed decisions peer counsellors, particularly for group about their lives. The counsellor-client counselling. relationship is one of mutual trust and confidentiality. Through counselling, clients Medical services are supported in taking responsibility for TASO medical services are designed to their lives, rather than looking down upon improve the quality of life of clients and themselves as ‘victims’. nuclear family members, particularly TASO continues to excel in the quality children. They include curative, preventive, of one-to-one counselling. By the end of palliative and rehabilitative therapies, 2007 there were 250 counsellors working and are provided free of charge. in our 11 service centres. In addition, TASO provides medical care through its 11 the TASO Training Centre at Kanyanya, service centres, as well as outreach clinics, on the outskirts of Kampala, has trained hospital wards and home visits. Since many over 2,000 counsellors now working clients live far from TASO’s service centres, for government institutions and other outreach clinics have become a major organisations throughout the country. This delivery point for TASO medical services: is a considerable achievement for an NGO about 30 percent of medical sessions are

45 United Against AIDS

Types of counselling provided by TASO

Pre-test Counselling what they can do to minimise those risks. Offered to clients before an HIV test It also introduces the concept of “positive to establish their sero-status, and to prevention”. those interested in information on HIV infection and disease. It aims to prepare Child Counselling a person to make an informed decision This form of coun­selling is designed about whether to take an HIV test and to especially for children, whose emotional consider the implications of the positive or needs are not identical to those of negative results, and ways of living with adults, and whose problems need to be either result. This type of counselling also approached with particular sensitivity and helps a person to consider behavioural unique communication approaches. change as a means of preventing HIV infection and to realise the dangers of Couple Counselling having unprotected sex, which could This is where two individuals who have transmit HIV to others and also expose had, or intend to have, sexual relations the person to re-infection. discuss issues concerning HIV infection and disease. Couple counselling enables Post-test Counselling the two individuals to share and learn Offered to a client who has been tested more information about HIV infection and for HIV and is willing to receive and learn other sexually transmitted infections. They about his or her test results. It aims to share their feelings, anxieties, concerns ensure that the person has understood the and worries about HIV infection and other meaning of the test results, and provides diseases. Couple counselling gives the the emotional support needed to cope couple an opportunity to identify factors with the impact of receiving the results that can predispose them to HIV and to (whether positive or negative). devise strategies for prevention. It also helps the couple acquire more information Prevention Counselling about safer sex methods e.g. condom use Provides infor­mation to clients to help and non-penetrative sex. It is critical as an prevent infection and re-infection of HIV entry point to identify discordant couples. and sexually-transmitted diseases. This type of coun­selling also helps the client to Family Counselling think about the factors that may predispose This is offered to those living in a com­ him or her to opportunistic infections and mitted relationship with a client, those

46 TASO services and other activities

living in the same household as a client intractable diarrhoea, skin rash); sudden and important members of the client’s fear of dying, and loss of a spouse or extended family or community. It a child; hospitalisation; seeing others aims to reassure family members and who are apparently doing well suddenly encourage their positive involvement die; sudden loss of employment and in the life of the client. accommodation; losing a close friend or relative who had promised to provide Bereavement Counselling long-term support for one’s family. Offered to spouses, children and close family members in the event of the death

of their relative. It aims to help family On-going supportive counselling members develop a positive perspective This type of counselling is given to on death. the client, as and when required, for the rest of his or her life. Quite often Crisis Counselling a client may have issues or problems This form of counselling helps clients which require support from a counsellor, deal with crises that could be sparked for example, stigma or discrimination, off by any of the following: sudden economic hardships, property rights or onset of an illness (e.g. herpes zoster, drug problems. conducted through such clinics. TASO also homes. The overall HIV prevalence rate continues to operate a home-based care was 6.4 percent, which is almost identical programme implemented by community- to the national average. based health workers. TASO also provides TB and STI services. Two-thirds of TASO clients receive Co- In 2006, 92 percent of clients seen at trimoxazole prophylaxis, which has been TASO clinics were screened for TB; 4 demonstrated to improve quality of life by percent were diagnosed as having TB and reducing the incidence of opportunistic received treatment, either from TASO or infections. In addition, a total of 18,000 from other health service providers. Of TASO clients have received antiretroviral the 40,003 TASO clients who were sexually therapy as part of a 'basic care kit' (see active, 97 percent were screened for STIs chapter 7). at least once in 2006; 12 percent were In 2004, TASO started a Home Based diagnosed as having an STI, of whom 96 Voluntary Counselling and Testing percent were treated in TASO clinics and service, focusing initially on the family the remainder referred. members of clients enrolled in the TASO ART programme. In 2006, a total of Social support 25,972 people in 5,376 households were TASO’s social support programme aims to counselled and tested for HIV in their own mitigate the impact of HIV on TASO clients,

47 United Against AIDS their families and communities. It consists 61 received loans. In three TASO service of three main components: centres, the Heifer Project provided funds for TASO clients to carry out livestock Educational support: farming with goats, cows, pigs or oxen. During 2006, 1,710 orphans and children of TASO clients were assisted to attend HIV and AIDS education primary, secondary and tertiary education. TASO’s HIV and AIDS educational activities TASO support took the form of scholastic are designed to disseminate messages about materials (exercise books, pens, pencils, HIV prevention, stigma reduction and living mathematical sets, rulers, uniforms, positively with HIV. The main vehicle for sweaters, school bags and graph books) this programme is the network of drama and fees for attending secondary schools groups working out of TASO’s 11 service and tertiary institutions. TASO staff centres. In 2006, these groups staged 957 members themselves raised funds to cover performances, attended by almost 300,000 the cost of supporting 360 school children. people. In addition, TASO used local FM In addition, in collaboration with the US- radio stations (516 radio programmes were based NGO, Trickle-Up, TASO supported broadcast in 2006), in local languages, to 200 young people with training in business reach hundreds of thousands of listeners management and start-up capital. in rural areas. Nutritional assistance: Many TASO clients are extremely poor Community programme and unable to provide sufficient food for TASO continues to support organised themselves and their families. In 2006, community responses to the challenges with support from four international donor of HIV, with the emphasis on providing organisations3, a total of 12,850 TASO clients accurate information about HIV prevention, and over 50,000 of their family members care and support. TASO support takes the received nutritional support in the form of form of training, refresher courses, support corn-soya blend, fortified cooking oil, beans visits and provision of facilitation grants. and maize flour. In the course of 2006, TASO supported 76 communities, who in turn reached Sustainable livelihoods programme: half a million people through educational This small programme aims to enable activities and distributed nearly 250,000 TASO clients to become economically self- condoms. sufficient. In 2006, 286 individuals were Each of TASO’s 11 service centres also trained in income generating skills and has a Centre Advisory Committee (CAC), which is elected at the centre’s Annual 3 Agricultural Cooperative Development Inter­ General Meeting. CACs are responsible national/Volunteers Overseas Cooperative Assistance, World Food Programme, Plan for motivating community members to International and World Vision. undertake HIV-related activities and for

48 TASO services and other activities

Presentation of certificates to trained counsellors (from right to left: Peter Ssebbanja, Juliana Nyombi, Miriam Katende).

TASO helps orphans and children of clients to attend school by providing scholastic materials, school uniforms and (for secondary school) paying school fees.

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Food distribution to TASO Clients in Kampala.

TASO Tororo Drama, Dance and Music Group perform to a village audience.

50 TASO services and other activities  Annet: counsellor

My name is Annet Soobi and I am a counsellor at the TASO Mulago centre. I joined TASO in 2003 as a volunteer before becoming a member of the staff in July 2004. Before joining TASO I was a teacher. I met a friend who worked in TASO and while speaking about the challenges of managing children, she encouraged me to do a counselling course, which I did at the family, they feel welcome. They need TASO training centre in Kanyanya. someone to speak to, to open up to in a The first thing I saw when I joined secure environment so they can share TASO was the family spirit. I imagined their problems. For instance, if a client that maybe people feared those who comes to us with a large family to look were living with HIV, but I found after and no partner to support them, people hugging one another, and I there is need for social support, such was surprised to see clients and staff as food. Most of our clients are very members using the same facilities. You needy. couldn’t tell who the managers were TASO’s biggest contribution to because everyone acted the same. fighting HIV and AIDS has been In my first days in TASO, I would care and support. We give our clients have sleepless nights when I returned psychological help through counselling. home. I used to think about what the They also get social support in the form clients had told me during the day, of food. We also have child clients, and and sometimes I would imagine what TASO makes a contribution to their I would do if the same thing happened school fees. We give priority to orphans to me. For instance, I am married and who have lost both parents. sometimes clients would come with We also reach out to the community, marital problems, and you begin to especially through the drama groups. We wonder whether they are talking about reach out to schools, organisations and your own situation. individuals and give them information I try not to feel emotional but about how to live positively if they are empathetic, so that I can help my already infected and, if they are not clients cope with their problems. Clients infected, how to stay safe and give who come to us really need love and care and support to those living with when we make them feel like part of a HIV and AIDS.

51 United Against AIDS mobilising local resources. They also into risky sexual behaviour. A total of 55 oversee TASO’s activities in the district and ACYC clubs are active in schools. Some advise TASO management on how to ensure activities are carried out in partnership that appropriate and quality services are with other organisations. For example, provided by the centres. in 2006 TASO Tororo conducted ACYC activities in collaboration with the Uganda Children and adolescents Family Planning Association. In 2001 TASO Entebbe started a pilot TASO has also focused on the treatment Child Care and Counselling Centre, which and care of children living with HIV. In demonstrated that there was a huge need partnership with the Paediatric Infectious for a place of quiet and safety for child Disease Centre at Mulago Hospital, TASO clients of TASO. In the same year, we established a model child treatment and received a large grant from USAID, through training facility at Kanyanya, on the outskirts the LIFE Programme, which enabled us of Kampala. This centre provides medical to provide formal educational support to care and psychosocial support for HIV- 1,500 children each year, and apprenticeship positive children, along with practical skills training for older adolescents so they training for counsellors and medical staff could earn a living and support themselves. in child counselling and treatment. Through this programme, TASO was able to train nearly 1,000 adolescents and provide Policy making, advocacy and them with start-up tool kits. Unfortunately, networking due to lack of business skills and start- As one of the leading HIV organisations in up capital, many apprentices could not Uganda, TASO is often invited to participate sustain their businesses. Currently, through in meetings on policy issues at national and assistance from Trickle-Up, we are providing international levels. As long ago as 1988, follow-up support to many of these initially for example, the Director of TASO was unsuccessful trainees. appointed a member of the National AIDS TASO took this experience as a lesson, Control Committee, which gave us a chance and decided to leave vocational training to participate in formulating guidelines to organisations with greater experience and policies on how to handle HIV and and expertise in this area. Instead, we AIDS in Uganda. When the Uganda AIDS supported HIV prevention programmes Commission was formed in 1990, TASO focussing on youth, in particular, through was chosen to represent the views of non- the AIDS Challenge Youth Clubs (ACYCs) government organisations fighting HIV and which were being established in schools. AIDS. We also contributed to the formulation These clubs provide young people with of the first National Strategic Framework, information about how they can prevent which aimed to reduce HIV prevalence by 25 HIV infection, and encourage them to percent every five years, mitigate the health resist peer pressure that could entice them and socio-economic impact of the epidemic,

52 TASO services and other activities

Community Programme members receive bicycles (Noerine Kaleeba on the right).

A TASO-supported workshop for school children, Kampala.

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Children's clinic at Katabira Centre, Kanyanya, Kampala.

Reflexology session at a TASO service centre: all TASO centres provide reflexology and aromatherapy, which are administered by specially trained TASO clients.

54 TASO services and other activities and strengthen national capacity to respond advocate of the rights of people living with to the epidemic. More recently, at the UN HIV, and provides them with facilities and Special Session on HIV and AIDS in New capacity-building support. Each TASO York in 2001, TASO was one of the NGOs centre has a day-care centre, organised by asked to represent the views of civil society and for people living with HIV. In addition, organisations from throughout the world. TASO continues to assist groups such as the TASO was also one of three global NGOs that Maama’s Club in Kampala, which brings participated in the process of establishing together HIV-positive mothers and their the Global Fund in late 2001. children so they can encourage and support At a national level, TASO continues one another, share their experiences and to play a leading role in annual events help one another to deal with problems such such as World AIDS Day, the Candlelight as economic hardship, and getting food and Memorial ceremony, the International clothing for their babies. Vaccine Awareness Day and the Philly TASO also assists the Positive Men’s Union Lutaaya Day. (POMU), which brings together HIV-positive Over the years, TASO has helped in the men to share experiences, encourage one creation of several other HIV prevention, another to overcome stigma, support one advocacy, care and support organisations. another in addressing common problems, These include, for example, the AIDS and also encourage other HIV-positive men Information Centre, the National Community to seek appropriate care and support. of Women Living with AIDS (NACWOLA), Within TASO, HIV-positive clients continue Traditional Healers and Modern Practi­ to contribute to the organisation as staff tioners Together Against AIDS (THETA), members, volunteers and as members of the the Uganda Network of AIDS Service governance bodies, including the Board of Organisations (UNASO), the Africa Regional Trustees. They make important inputs into Section of the International Council of AIDS programme planning and implementation, Service Organisations (AFRICASO), Positive using their personal experiences to promote Men’s Union (POMU) and the Regional what is most appropriate and beneficial to the AIDS Training Network (RATN) in Nairobi, users of TASO’s services. Dr Lydia Mungerera, Kenya. who herself is HIV-positive, is TASO’s HIV Advocacy Training Officer and carries out People living with HIV and AIDS training in advocacy issues and approaches The involvement of people living with HIV and for TASO staff, clients and volunteers. Dr AIDS (PHAs) is recognised internationally Mungerera has also represented TASO at as a key component of HIV care, support many national and global meetings, including and prevention. In fact this strategy was the Board of the Global Fund for AIDS, pioneered by TASO: seven of our 16 co- Tuberculosis and Malaria. founder members were themselves HIV- The involvement of people living with positive. TASO continues to be a forthright HIV in TASO has been a very effective way

55 United Against AIDS of fighting the stigma which still surrounds performances carry educative messages HIV, and the discrimination which still on HIV prevention, care and support. The affects many people living with the virus. song, United Against AIDS, for example, The TASO clients’ drama groups, for composed by Tony Kisule from TASO example, have become semi-professional, Mulago, has become widely known and to the point of being able to raise money popular outside TASO. by performing at weddings and other Twenty years ago, when TASO was still social events. Only 10 years ago, people a small group of volunteers meeting to living with HIV would either not have been pray together and to support one another invited to such events, or would have been in facing the daunting challenges of the cold-shouldered by relatives and friends if HIV epidemic, we did not imagine that our they had attended. efforts would lead to such a wide range of The TASO clients’ drama groups offer activities, on such a large scale. Nor could a double-pronged message. On the one we have predicted that, due to new medical hand, they fight HIV-related stigma and approaches that were in the pipeline during enable more people to reach out and care the 1990s, future TASO clients would no for people living with HIV. At the same longer face the almost certain prospect of time, their music, songs, dances and drama premature death.

56 New medical approaches

Chapter Seven New medical approaches

When we started TASO in 1987, the people samples of some of these remedies but soon who came to us living with AIDS knew, realised that they did not cure AIDS. as we did, that they were likely to die in The Ministry of Health also emphasised the near future. We encouraged them to that these and other claimed cures of AIDS live positively, and we provided them with were hoaxes. However, that did not stop more treatment for opportunistic infections. Yet people from flocking to traditional healers in the lack of an effective treatment for HIV an elusive and desperate search for a cure infection meant that their death was almost for AIDS. Other supposed cures came from always inevitable, either within a few weeks, Nairobi in Kenya and from Kinshasa in the a few months or, in some lucky cases, a Democratic Republic of Congo. In 2001, a few years. clinic in Kampala claimed it had a herbal cure This left us to look around for alternative for AIDS, which also turned out to be fake. remedies like the traditional herbs that would bring relief of some symptoms. Many Antiretroviral therapy people in Uganda, as in many other parts of In the mid-1990s, the prognosis for people Africa, relied on traditional healers to treat living with HIV began to change. Information any ailments they had, resorting to ‘modern’ became available about antiretroviral drugs health facilities only when traditional medicine (ARVs) which suppress the virus, allowing failed. With modern science offering no cure the body’s immune system to fight off for the new disease, we began to see more opportunistic infections, and enabling HIV- and more Ugandans resorting to traditional positive people to live longer, healthier, more healers, including some who claimed to productive lives. For several years, however, possess cures for AIDS. the cost of antiretroviral therapy (ART) I remember a lady called Nanyonga, was prohibitive, so neither TASO nor our who, some time in early 1988, claimed she clients could afford it. In addition, health had received a vision from God that eating professionals in Uganda lacked training in soil from a spot within her compound how to administer ARVs and how to deal could cure AIDS. Thousands of desperate with their side-effects. Moreover, our health Ugandans flocked to her home in vain. services did not have a system to ensure the Some of our clients urged us to try out this sustainable delivery of these drugs. and other remedies. In fact we received At the turn of the millennium, there were

57 United Against AIDS increasingly insistent calls to increase access Over the next three years, we recruited to ART, particularly among poor people in and deployed 500 new staff, revamped medi­­cal the developing world. However, this did not and counselling guidelines to take account translate into widespread access overnight. of ART, and procured large volumes of HIV Before 2004, a few of our clients had started test kits, supplies of ARVs, four-wheel accessing ART as participants in research vehicles, motorcycles and computers. We projects, or, as the prices started falling, by also trained over 1,000 staff and volunteers purchasing ARVs from providers such as the to carry out their functions in the roll-out of Joint Clinical Research Centre in Kampala. ART through our 11 service centres. In 2001 the rock star, Bono, visited TASO The results were remarkable. By the and made a commitment to provide 25 end of 2007, a total of 18,000 TASO clients members of TASO Mulago’s drama group had received ART from TASO and another with ARVs for three years. In addition, 8,000 from other providers. The impact through a research project between TASO of ART on the lives of our clients was Tororo and the Centers for Disease Control, dramatic and heart-warming (see boxes: 1,000 TASO clients were selected to start Christopher, opposite, and Prossy, p. 63). ART on a home-based delivery model. The Moreover, the ART adherence rate has success of this project provided a template been consistently above 95 percent, which which TASO would later use for the scale-up compares favourably with that in any other of ART in other parts of the country. country in the world. It was wonderfully uplifting to see our clients regain their health after starting the ART Consequences of ART regime. We realised, however, that we could ART has completely transformed the not rely indefinitely on the generosity of other prospects of our clients to live longer, providers to keep supplying our clients with healthier lives. In the absence of ART, ARVs. Sooner or later, we would have to have these people would probably be either our own, fully scaled-up ART programme. dead or very ill, and there would be as Hence, in 2004, with funding from many as 80,000 more orphans and other PEPFAR and technical support from the vulnerable children in need of care and Centers for Disease Control, TASO started support. its own ART programme, which aimed to On its own, however, ART has not resolved provide ART to all TASO clients in need of old problems, such as poverty, lack of this treatment. Starting the programme, employment and insufficient food. It has however, was the easy part. We also had to also brought new challenges, particularly convince all stakeholders – especially the the desire to be loved, to start or resume government – that TASO was capable of sexual activities and to have children. delivering ART on a large scale. Fortunately, We have responded to these challenges we were able to achieve that, although not by incorporating them in the training of without difficulty. our counsellors, to ensure that the better

58 New medical approaches  Christopher: farmer

Christopher Omoit Machika’s wife died in 1998, leaving him with six children. When he remarried. his sister-in-law encouraged him to visit TASO and take an HIV test, which was positive. His new wife, however, tested negative. Christopher soon fell ill with carried out last year, show that she is diarrhoea and his CD4 cell count still negative,” he adds. dropped to 16. “I was tending towards With his health improving, Christopher the grave,” he says. In 2003 the is able to work and support his family. Centers for Disease Control started He grows millet and maize, as well as funding an ART programme through groundnuts, rice and onions. TASO, and Christopher was one of the After starting ART in 2003, beneficiaries. Christopher met with other TASO Under TASO’s Home Based AIDS clients in the area and formed a Care programme, Christopher has also support group to share experiences received insecticide-treated mosquito and encourage one another to adhere to nets to prevent malaria, a basic water the treatment, and also adopt safe and purification kit to prevent diarrhoea responsible sexual behaviour. and other water-borne diseases, Co- “The purpose of forming the group trimoxazole (Septrin) to ward off was to educate members so they can opportunistic infections, and condoms abstain, or they can play it safe by to protect his wife from contracting zero-grazing with one partner.” HIV. Christopher’s health has improved The members of the group also dramatically and his CD4 cell count has support one another financially and risen to 270. materially to ensure food security. The “I have moved from the graveside Centers for Disease Control provided to normality,” he says. “In the last 6 the group with a grant through TASO months I have not gone to the clinic in the form of ox-ploughs, groundnut and I have not fallen sick. seeds, pesticides and a spray pump. The “The condoms have really benefited group has already harvested and sold us because my wife is negative and I am its first crop of groundnuts and is now positive. We have been using condoms using some of the money earned to run consistently and her latest results, a revolving loan scheme.

59 United Against AIDS health that ARVs make possible does not of our clients and enhanced the professional undermine the personal responsibilities that knowledge and skills of TASO health belong to positive living. providers. Thanks to our donor partners, In addition, since people on ART also need TASO has been able to acquire the health good nutrition, we have also boosted our care personnel, drugs and laboratories nutritional support programme with assistance which are needed to provide these services. from the World Food Programme. However, we continue to refer complicated cases and patients that require admission to New ‘Basic Care Kit’ the hospitals which host our centres. Between 2001 and 2007 the medical services provided by TASO were greatly Community involvement enhanced by ongoing research, much In order to support our clients receiving of it involving TASO clients and staff, in ART, TASO trained 1,000 HIV-positive collaboration with the Centers for Disease clients to become ‘Community AIDS Support Control and the Medical Research Council Agents’ (CASA). Each CASA was allocated in Entebbe, Masaka, Jinja and Tororo. The 10-20 clients in the community whom they research helped in the processes of revising regularly visited to encourage adherence to and improving some policies in health care the ART regime, to reinforce HIV prevention for people living with HIV, in particular, the messages and to encourage disclosure of development of a ‘basic care kit’ for all TASO one’s HIV-positive status within the family. clients, comprised of: This was followed by the introduction • Antiretroviral drugs for those who require of home-based HIV testing, through the them entry point of existing clients (with their consent). This enables the spouse and the • Septrin (Co-trimoxazole) taken to prevent other members of the household to know opportunistic infections their own HIV sero-status. Those who test • A plastic vessel for storing drinking water HIV-positive are encouraged to register hygienically with TASO and to start receiving care and • Water purification solution support, including ART, if their CD4 cell • Condoms count is very low. • Two insecticide-impregnated mosquito nets Through this programme, we learned to provide protection against malaria that amongst TASO clients there are many couples – as many as 64 percent according • Health education materials to ensure that to a recent study4 – living in discordant clients and their families understand how to use the elements of the basic care kit. 4 “High discordance rates among ART Clients in Overall, the introduction in August 2004 The AIDS Support Organisation”, by Mohamed Mulongo and Francis Wasagami, presentation of ART to the medical services available to PEPFAR HIV/AIDS Implementers Meeting, through TASO has greatly improved the lives Durban, South Africa, June 2006.

60 New medical approaches

Rock-star Bono visits the TASO Mulago Music, Dance and Drama Group in Kampala in 2003.

A TASO doctor explains how to use antiretroviral drugs: 18,000 TASO clients receive ARVs from TASO.

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A laboratory technician takes blood for testing at a TASO service centre.

TASO counsellor and client: home visits are part of a counsellor's responsibilities.

62 New medical approaches  Prossy: TASO client and peer educator

When Prossy Nalubowa, 50, started falling sick in 1997, members of her family and community in Kiboga, about 100 kilometres northwest of Kampala, accused her of contracting AIDS through promiscuity. She was admitted to a local hospital, where herpes zoster of the 25 members of the TASO drama was diagnosed. group who received free antiretroviral The health workers at the hospital drugs, with financial support from asked Prossy’s relatives to pay to have the Irish rock star, Bono. Her eldest her trans­ferred to Mulago Hospital in son, who is also HIV-positive, joined Kampala for better care. The family an antiretroviral drug trial run by members refused. the Joint Clinical Research Centre in “They said that since I was about Kampala. He also returned to school, to die, they would rather buy a coffin with financial support from TASO, and for me than waste money on treating is now set to enter university. me,” Prossy recalls. With the help Prossy’s health has improved; her of a community member, Prossy was CD4 cell count has risen from 101 to 484 transferred to Mulago Hospital, where and her weight has increased from 53kg she was admitted for four months and to 80kg. She is now a peer educator and joined the TASO Mulago day-care assistant supervisor of the day-care centre, where she received counselling centre at TASO Mulago. and psychosocial support. Prossy uses her experience to fight The stigma, however, continued. stigma in society. She once travelled After Prossy’s discharge from hospital, with a TASO drama group to her her late husband’s family threw her out community in Kiboga, astounding those of the room where she was staying, in a who had declared her dead, and teaching suburb of Kampala. Her relatives in the them how they too can live positively village ransacked her property after with HIV. She also appears on local FM she was assumed dead, and her 14- radio stations, and campaigns against year-old daughter was married off to stigma and discrimination towards a 45-year-old man to help pay the bills people living with HIV. for Prossy’s three other children. “I try to help others the way TASO In December 2001, Prossy was one helped me,” she says.

63 United Against AIDS relationships. The HIV-negative partner in This realisation led to the development of these relationships is obviously at high the Positive Prevention programme (see risk of contracting HIV, unless the couples Chapter 8), which will form a major focus take preventive measures, such as the of TASO’s HIV prevention work in future use of the condom, which we encourage. years.

64 Scaling-up and sustaining TASO

Chapter Eight Scaling-up and sustaining TASO

In 2001, when Dr Alex Coutinho became services were poor due to the insecurity and Executive Director of TASO, there was the difficult living conditions in the camps a strong surge in the demand for TASO for ‘internally displaced people’. Stigma services such as counselling. This might and discrimination were also rife, as was have been due to the success of efforts by war trauma. We therefore had to train our the Government of Uganda, TASO and many counsellors to deal with these psychosocial other organisations to reduce HIV-related challenges. Thankfully, the security situation stigma and discrimination. Whatever the has since improved, and we have been able reasons for this increase in the demand for to provide services to a growing number TASO services, we felt we had to respond of clients, most of whom are still living in positively. Obviously, TASO could not be the camps. physically present throughout Uganda. At Our second scale-up strategy was that the time we had only seven service centres: of regionalisation. We established four in Kampala, Masaka, Tororo, Mbarara, regional offices, which have the capacity Mbale, Entebbe and Jinja. We therefore to support TASO services in all 80 districts had to devise a strategy to scale-up our in Uganda. As part of this strategy, we capacity to respond to the demand for TASO also selected 15 government and non- services. government hospitals to become TASO ‘franchises’ – or ‘mini-TASOs’ – through Scale-up strategies the provision of counselling, medical and First, we were able to mobilise funds from community services. TASO then supported international donors to start up four new these hospitals by training their staff in TASO service centres: in Gulu, Soroti, counselling and in the management of Rukungiri and Masindi. The decision to HIV and AIDS, as well as other sexually work in Gulu, in the North of Uganda, was transmitted diseases, and in antiretroviral made at a time when insecurity was still therapy. TASO also provided the mini- rampant in the region and there were many TASOs with grants and other forms of fears about TASO’s ability to operate there. support and supervision. According to the Uganda AIDS Commission, The concept of mini-TASOs was well- the level of HIV infection in the north was received and has led to more clients higher than that of the rest of the country, yet registering for TASO’s services. In 2006

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TASO supported eight mini-TASOs, which centres, day-care centres, and sufficient counselled a total of 45,569 people and counselling and medical rooms. provided medical care to 29,401 people. In 2007, TASO supported another seven Scaling-up HIV prevention mini-TASOs. The mini-TASO concept has TASO has developed a new Five Year Plan become so popular that there have been for 2008-2012, its most ambitious plan several requests to turn them into fully ever. It reflects the collective wisdom of the fledged TASO centres. Due to lack of funds, last 20 years and puts particular emphasis this has not yet been possible. on scaling-up HIV prevention. Dr Coutinho, The regionalisation strategy also involved TASO Executive Director from 2001-2007, is providing support to community-based often quoted as saying: “If you find a flooded organisations (CBOs) which showed house due to a tap of water which was left potential for performing well. TASO trained on, you cannot concentrate on wiping up the the staff of these organisations and also water on the floor before you turn off the tap. provided seed money for purposes such as Otherwise you will easily get frustrated.” renovation of their offices and the purchase There is, therefore, an urgent need to of office equipment. The TASO-supported scale-up our approaches to preventing CBOs have also been successful and popular. new HIV infections, so that we can continue In 2006, TASO supported eight CBOs, which to provide high quality services to those counselled 18,054 people and provided requiring care and support. The TASO medical services to 7,599 people. National Annual General Meeting in The combined effect of these strategies September 2006 paved the way for this new was a sharp escalation in the number of new programme emphasis by adding the words clients registering with TASO: from 6,000 in ‘preventing HIV infection’ to the TASO 2001 to over 20,000 in 2006. This surge in Mission Statement, which now reads: TASO clients can be attributed, in large part, “TASO exists to contribute to a process to the availability of antiretroviral therapy, of preventing HIV infection, restoring free of charge, in our service centres from hope and improving the quality of life the year 2003 onwards. of persons, families and communities The surge in demand for TASO services affected by HIV infection and disease.” also meant that the number of TASO staff had to be dramatically increased and TASO chose ‘Scaling up HIV prevention’ facilities expanded. By the end of 2007, as its theme for 2007, and many of its the organisation had over 1,000 staff, programmes now address HIV prevention compared with 352 in 2001. In addition, issues. The TASO drama groups, for all the existing buildings were extensively example, have developed sketches renovated and 19 new buildings were added. and songs on prevention, home-based All TASO centres acquired fully functional counselling and testing. In addition, laboratories and pharmacies, child-care couple counselling has been intensified

66 Scaling-up and sustaining TASO  Patrick and Lucy: shopkeepers Patrick Olaya and his wife, Lucy Lawino, live in a camp for people displaced by the 20 year-long conflict between government forces and the Lord’s Resistance Army rebels in northern Uganda. When Patrick fell sick and was bed-ridden for several weeks in 2004, close friends and relatives advised him to take an HIV test, which he they opened in the camp. The couple sold did at Gulu Main Hospital. The result off part of their land to pay school fees was positive. Patrick was instantly for their children, and say that joining concerned about how to break this news TASO has transformed their lives. to his wife Lucy. “TASO has helped us very much; it “I was given enough counselling by saved my life, and it is still continuing to TASO and became strong in the heart,” give me counselling,” says Patrick. “This recalls Patrick. “At first I did not tell has made me strong, and encouraged her and went back to the counsellor me to live a happy life. I want TASO and asked if he could go with me to to train me in counselling so that I can deliver the story. He advised me to also help other people in the camp. If come back to the hospital together they come to my shop I can share my with my wife.” experience with them and encourage Lucy recalls: “I was very devastated them to go for testing.” when I got the news. I was pregnant and Patrick and Lucy are now trying for thought of aborting. I went to the TASO another baby. When Lucy’s labour pains counsellor and he told me that if you set in, she will be given Nevirapine, a are pregnant and you are HIV- positive, drug that reduces the risk of mother- there are drugs to keep you alive and to-child transmission of HIV during help you produce a health baby.” childbirth. Lucy was tested for HIV and found to “TASO has helped many people in be positive. Her newborn baby died after Uganda who would have died of AIDS,” two days, but she and Patrick are both says Lucy. “If you don’t go to the receiving ART at the TASO centre. hospital and get tested you keep leading Patrick has recovered his strength a hopeless life. You should always go for and rides a bicycle several kilometres testing and counselling so that you are to Gulu town each day, returning with assisted to live a happy and healthy life, merchandise for the small shop which even with HIV.”

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Dr Sam Okware, Commissioner for Community Health, Ministry of Health, lays the foundation stone for TASO’s new head office building in Kampala, to be called the ‘House of Hope’, November 2005 (Dr Alex Coutinho on left).

TASO's National Headquarters, Mulago, Kampala, was built in 2004.

68 Scaling-up and sustaining TASO and discordant clubs have been started at September 2006 (see p. 66) to include HIV TASO centres throughout the country. prevention. TASO’s government partners and international donors are very clear about what ‘Positive Prevention’ TASO stands for and is trying to achieve. In 2006, TASO initiated a new project known as ‘Positive Prevention’, which seeks to Principles: increase the participation of people living TASO’s principles are the five TASO with HIV and AIDS (PHAs) in addressing values (see p. 23), which have served the the challenges of HIV prevention. This organisation well over the past 20 years. project is particularly important for the many TASO client couples who live in Product: discordant relationships. Having regained Right from the outset, TASO defined its their health through antiretroviral therapy, ‘product’ as ‘positive living’, a term coined many discordant couples wish to resume a by TASO, which has resonated throughout normal sex life and to have children, which the world, giving hope and meaning to may place the HIV-negative partner, or a the lives of many HIV-positive people who new-born baby, at high risk of contracting otherwise might have given up on life. HIV. The Positive Prevention project is training TASO counsellors and peer Proof: educators in education and support for TASO is meticulous in collecting and discordant couples, disclosure to spouses or presenting evidence of the effectiveness partners, sex and sexuality, family planning, and the efficiency of the work it does. We safer sex, and prevention of mother-to-child monitor activities in our service centres HIV transmission. The project has begun by and provide progress and financial reports developing a curriculum and the training of to our donors on a regular basis. We have trainers who, in turn, will train hundreds of established systems for ensuring proper TASO staff and volunteers. financial controls and accountability. This has been necessary to cope with the huge Sustaining TASO growth in TASO’s annual budget: from TASO would not have been able to manage virtually nothing in 1987, to over US$20 the rapid growth in its staff, funds, facilities million in 2007. TASO is always willing for and activities since 2001 if it had not been all aspects of its activities to be inspected by sustained from within by a number of key its funding partners and stakeholders. factors. Dr Alex Coutinho summarises these factors as the ‘Six Ps’, as follows: Partnership: TASO is well aware that it does not work in Purpose: isolation, but in partnership with many TASO’s purpose is summarised very clearly in different institutions and organisations: with its mission statement, which was updated in families, communities, government bodies,

69 United Against AIDS civil society organisations, other NGOs, and needed. We have systems in place to ensure inter­national donor organisations (see sustainability into the future. Appendix). For my part, I would suggest that there is Posterity: another very important ‘P’, for ‘People’. As TASO is committed to HIV work in the we shall see in the next chapter, TASO has long term, for as long as its services are always made a point of investing in people.

70 Investment in people

Chapter Nine Investment in people

One of the main reasons for TASO’s growth The top governing body of TASO is the from a small group of individuals into Board of Trustees, whose members are a large organisation that reaches out to elected by TASO clients and individual several thousand people every day is our members for three-year terms, renewable investment in people – not only our clients, only once. This gives policy guidance to the but also the staff and volunteers who TASO management to ensure that they steer provide them with counselling, treatment, the organisation towards its strategic goals. information, care and support. The Board of Trustees includes two client We have tried, right from the onset, to representatives to ensure that the voice of empower people within the organisation our clients is heard right at the top of the to face the challenges of living with HIV organisation’s decision-making process. and managing their situation with courage The Board also includes representatives and dignity. One of the key components from each of TASO’s regional centres, of this empowerment process has been ensuring that decisions are informed by the creation of a governance structure local realities, and are therefore owned that allows everyone, right down to the by our staff and clients, not simply handed grassroots, an opportunity to participate in down to them. policy formulation and decision-making. The day-to-day running of the organisation is in the hands of the Executive Director, who Structure of TASO is assisted by two Deputy Executive Directors, TASO is a membership organisation: about one of whom is in charge of Finance, 6,500 people from throughout the country Administration and Human Resources, and pay a membership subscription, which entitles the other in charge of Programmes. TASO them to have a say in how the organisation is also has six directorates, namely, Advocacy, managed. At the apex of the organisation is the Human Resource and Administration, Patron and TASO founder, Noerine Kaleeba. Finance, Training and Capacity Building, Although Noerine is not involved in the day-to- Programme Management, and Strategic day running of the organisation, she continues Planning and Information. to inspire us all and to guide the organisation to At TASO’s 11 service centres, the Board ensure that we never lose sight of our original of Trustees is represented by the Centre mission, our values and our goals. Advisory Committee, which includes client

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TASO Annual General Meeting

Ever since 1992, TASO has been holding Clients, staff and volunteers are all free to Annual General Meetings to review comment on their accuracy or to highlight the organisation’s progress and chart issues that need to be discussed before the way forward. The year 2007 is the minutes are adopted. Action points no different. More than 2,500 TASO agreed upon in the previous AGM are clients, staff, donors, board members revisited, and the TASO management and well-wishers meet in Lugogo, on are asked to show that these have the outskirts of Kampala City. In a large been carried out. The dialogue is open hall, usually used to display wares during and honest. Jesse Musobozi, a client an annual trade fair, the TASO clients representative from TASO Masindi, calls display hope, courage and heart-warming for more effort in encouraging ‘positive camaraderie. prevention’. Esther Agali, the team leader for TASO’s Positive Prevention Although each of the 11 TASO service programme, responds immediately, with centres have designated seats, the details of how this is being done. delegates mingle freely, greeting one another with big hugs. Drama groups The Honorary Treasurer presents from the different centres bring the hall his report, and the keynote address is to its feet with catchy songs and jumpy delivered by Esther Kisaakye, Executive dances. Many people are wearing T-shirts Director of the Uganda Network on Law, with slogans like ‘Anybody can catch Ethics and HIV and AIDS, on the rights AIDS’ and ‘Together we shall overcome of people living with HIV to treatment, AIDS’. employment and non-discrimination. The address, delivered in English, is translated The chairperson of TASO’s Board of into Luganda for non-English speaking Trustees, Juliet Tembe, captures the clients. essence of the AGM in her opening remarks: “This is the time we come The Executive Director of TASO, Dr together as a family, to interact, share Alex Coutinho, greets the delegates in at our experiences, take stock of our least six local languages – a testimony to achievements and failures, and plan for the great diversity within the organisation the coming months.” – and proceeds to give his sixth and last report. Flanked by the incoming The minutes from the previous AGM Executive Director, Robert Ochai, and are circulated to the clients and discussed. other senior TASO managers, Dr Coutinho

72 Investment in people

says: “Nothing that TASO has achieved of 10 clients from each service centre has been achieved as an individual. It who have died since the last AGM are has been achieved as a team. As I leave, read out, representing the hundreds who I leave as an individual but the team will continue to die each year. Yet at the end remain. I can attest that the family spirit of the speech, Dr Coutinho ends with a is alive and kicking. Working for TASO celebration of life. is like no other job in the world, as TASO becomes intricately a part of your life and “I want to call on all our clients in your soul. Parting from TASO is one of the the hall to stand up and join me in most difficult things I have had to do.” celebrating life, for surely, without TASO services and in particular antiretroviral Dr. Coutinho highlights TASO’s suc­ therapy, your names would have been cesses as well as the challenges it on that list.” More than 2,000 clients faces. Such duality, of success and rise to their feet. The treatment, care failure, threats and opportunities, life and support that TASO provides to its and death are ever-present in TASO. clients show how thin the line is between Midway through the speech, the names life and death. representatives and other elected community and quick decision-making. The Board of members. Their role is to give advice to the Trustees makes policy decisions on funding, management of each centre to ensure that approves the budget, authorises certain our services reach the people who need levels of expenditure and procurement, them, and with the quality they have come to and recruits the Executive Director and expect from TASO. Each centre is headed by Directors. Above all, the Board maintains a manager whose staff includes counsellors, TASO’s mission and values. medical and clinical officers, nurses and Directors and their deputies make up support staff. The day-care centre in each the senior management team at TASO TASO service centre is managed by a headquarters, where decisions are usually member of staff living with HIV in order to made through regular consultations, provide peer support to clients. including fortnightly meetings to review Clients also elect representatives from their progress and plan ahead. Although the communities to represent them on a Clients’ Executive Director can take some decisions Council, which meets the Executive Director without consulting the Board or the senior at least twice a year to discuss clients’ views management team, major decisions are on the services provided by TASO. taken only after such consultations. TASO has four administrative regions, Decision-making each headed by a Regional Manager Each level within TASO has clear roles in charge of three service centres. The and responsibilities to ensure smooth manager is supported by a Regional

73 United Against AIDS  Eve: evangelist

Bashabire Eve Turyamureeba, 37, and her husband joined TASO Mbarara in February 1994, two years after they had both tested positive for HIV. After the death of her husband in October 1994, Eve continued to visit TASO for treatment, care and support. In 2002, she joined the TASO drama group to help spread messages about HIV prevention in her community. Between 2003 and 2007, Eve was to look after her four children aged a member of the Clients’ Council at between 13 and 18, and TASO also TASO Mbarara, whose role it is to pays school fees for her daughter, suggest ways in which the organisation who is in the first year of secondary can improve the quality of its services school. Under the home-based care to its clients. Clients’ Councils are one and treatment programme, a team from way in which TASO clients are involved TASO recently visited Eve’s home and in the running of the organisation. Each tested her four children for HIV. They of TASO’s 11 service centres elects six all tested negative. members and sends two of them – one “It was my greatest worry that my of whom must be female – to sit on the children might also be infected,” Eve Clients’ Advisory Council at national says. “I was very relieved and happy to level. Two clients are then elected from learn that they are free from HIV and the Clients’ Advisory Council to sit on I pray that it remains that way. I am an the TASO Board of Trustees. evangelist and I continue going around “As clients, we ask staff to improve the community, using my personal on any areas that we think would help us testimony to advise people to protect get a better service, such as treatment themselves from HIV.” and the counselling they provide,” Although Eve no longer sits on the says Eve. “By listening to what we say, Clients’ Council, she continues to share the TASO leadership shows that it is any views she has when the clients meet concerned about the welfare of its at their service centre, or during the clients.” TASO Annual General Meeting. Like other TASO clients, Eve has a “TASO is open; anyone who has lot to thank TASO for. Her allowance something to say can say it and they from the drama group enables her will be listened to,” she says.

74 Investment in people

At TASO Annual General Meetings, all delegates vote to elect the Board of Trustees.

The TASO Annual General Meeting in 2001.

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Staff discuss a report. Every quarter the Management Committee reviews TASO's programmes and administrative systems.

Role play during counsellor training: TASO trains more than 3,000 people a year in skills related to HIV care, support and prevention.

76 Investment in people

Council comprised of representatives from we started developing a curriculum for the Centre Advisory Committees of all the training AIDS counsellors, mainly in order service centres in the region concerned. At to produce trained staff for TASO’s own each TASO service centre, the manager has clinics. Very soon, however, government considerable autonomy to make decisions institutions, NGOs and other organisations without having to consult with the Executive also expressed an interest in having their Director, the Regional Manager, the Centre staff trained by TASO – and not only in AIDS Advisory Committee or the Centre Heads counselling. In fact we often developed of Departments, although most major new courses as we went along, based on decisions are agreed upon through regular emerging needs. By the end of 2007, TASO departmental and staff meetings. offered 14 different training courses on a Every quarter, a Management Committee range of topics including various types of Meeting, comprising of the directors and counselling, peer education, home-based their deputies at the headquarters, heads care and the clinical management of HIV of sections, regional managers and centre and AIDS-related conditions. Training for managers reviews TASO’s programmes and community volunteers is carried out, free administrative systems. This meeting allows of charge, by staff at the 11 TASO service the views from the bottom to the top, to be centres. These courses are much sought- debated, adopted and implemented. after by people and organisations within and outside Uganda. The role of training Some of these courses have been TASO believes passionately in the developed in collaboration with other importance of training to develop the training institutions such as the Regional skills and capacity of its staff members AIDS Training Network (RATN) in Nairobi, and volunteers, as well as members of the CONNECT in Zimbabwe, and Nkumba communities where TASO works. In 2006, University and Mildmay International in TASO trained a total of 3,623 people (1,828 Uganda. TASO has also carried out training females, 1,795 males) at its Training Centre on a contract basis for United Nations in Kanyanya, Kampala, at its four regional agencies such as UNICEF and international centres, and through the TEACH and SCOT NGOs such as ActionAid International. programmes. During the past 20 years, Apart from TASO itself, participants TASO has trained well over 30,000 people in these courses have come from the in a wide range of HIV-related care, support Uganda People’s Defence Forces, the and prevention skills. National Electoral Commission, Ministry of Originally, whenever new volunteers Education, Ministry of Agriculture, Ministry joined TASO we would induct them into of Gender, Labour and Social Development, HIV and AIDS issues, and train them in Ministry of Internal Affairs, private sector ‘helping skills’ to use when interacting agencies and road construction projects, with TASO clients. In October 1988 local and international civil society

77 United Against AIDS  Ignatius: Board Member

Ignatius Biryomumaisho, 55, is one of the two client representatives on the TASO Board of Trustees. He joined TASO in December 1998, after testing positive for HIV at the AIDS Information Centre in Mbarara. He had already lost his job in the Resident District Commissioner’s office after he revealed his HIV-positive status. “I had heard TASO looked after “In our individual centres we have no its clients and their families,” says chance to see clients from other parts Ignatius. “I joined immediately because of the country. This is an opportunity I knew that, even if I died, TASO to meet and compare notes. When we would look after my eight children, the see clients who look well, we ask them youngest of whom is 14.” to tell us what they are doing to stay As one of two TASO client rep­ healthy, and when we see clients who resentatives on the board, Ignatius don’t look healthy, we speak to them says it is his responsibility to inform and try to advise them on better ways the organisation about how its work is to take care of themselves.” affecting the lives of its clients. Ignatius says he would like to see “Our main job is to find out what TASO support its members to start clients feel TASO should do for them, more income-generating activities so how they would like TASO to treat that they can stop being dependent them, and about the changes taking on the organisation for their basic place in our lives. For instance, after needs. He also says that TASO the introduction of ARVs, many young needs to encourage more voluntary girls want to marry, and many women counselling and testing to prevent new now want to have babies. It is our infections. responsibility to inform the board “HIV and AIDS awareness is very about these changes so that TASO can high but we are seeing little behaviour respond appropriately.” change,” he says. “We need to encourage Ignatius says the TASO Annual more testing so that people know their General Meeting brings together clients status and make informed decisions from across the country and enables about their lives and those of their them to share their experiences. loved ones.”

78 Investment in people organisations, and individuals sponsoring workshops on various topics, and enabling themselves. In 2006 TASO received an some to attend courses in universities and income of US$235,000 from its training other institutions of higher education on courses. These funds have been used to a part-time, correspondence or distance- cover deficits in the budgets for other TASO learning basis in order to improve their activities. skills and acquire new knowledge. Despite the huge gains achieved in HIV counselling in Uganda, there are Human resources and still gaps and shortcomings in the quality staff welfare of counselling available, and access to TASO has a transparent and well-structured counselling services is uneven. In 2005 staff recruitment policy, which enables it TASO, in partnership with the Ministry of to select competent and suitable persons Health, the Centers for Disease Control and for its staff, and to deal with staff concerns other partner organisations, established when they arise. Human resource staff are the Strengthening HIV and AIDS Counsellor employed for each TASO service centre and Training (SCOT) project. The purpose of in the national office, thus ensuring that this SCOT is to develop properly accredited, aspect of TASO’s activities is handled in a high quality counsellors with the skills to professional and responsible way. respond to the current and changing needs We often assess the staffing needs within of the epidemic. In 2006, SCOT reviewed the organisation, and either redeploy four training curricula, and trained 64 staff to areas where their skills are better trainers and 364 service providers from suited, or recruit more personnel when various partner organisations throughout funds permit to fill any gaps. Many of the the country. people who are recruited as staff members The TEACH (TASO Experiential Attachment started out as volunteers in TASO, acquiring to Combat HIV and AIDS) project, which extensive experience as well as the family began in 2005, is a programme which spirit that embodies the ethos of the places trainees with TASO programmes for organisation. hands-on, interactive, practical experience To help maintain high staff morale, TASO for one month at a time. Funded by SIDA, offers its staff a package of benefits including TEACH equips trainees with the knowledge, medical care for staff members and their attitudes and practical skills they need immediate family, bonuses, gratuity, to meet the ever-increasing demand for training opportunities, compassionate professional staff trained in HIV-related leave, study leave, annual leave and care, support and prevention. In 2006, bereavement support in the case of death TEACH provided experiential training to of staff, their parents or their children. 186 trainees from 21 African countries. Many staff members have upgraded their We also build the capacity of our own education in institutions and universities, staff by organising refresher courses, with part of their fees paid by TASO. TASO

79 United Against AIDS staff members have also created a Staff for projects such as buying plots of land, Welfare Scheme through which they save constructing houses and starting income money jointly every month. The scheme is generating activities. Others have been administered by a committee comprised of able to pay schools fees for themselves staff members, and is elected at an Annual and their children, buy a car, or deal with General Meeting. The committee meets some pressing domestic issue. Anyone in once a month to review the accounts and TASO, from the highest staff member to approve loan requests from members. the lowest-ranked, can join the scheme Through this scheme, many staff and can continue investing in it until they members have been able to borrow money leave the organisation.

80 The future of TASO

Chapter Ten The future of TASO

When Robert Ochai became TASO’s fourth – have remained one family, looking out Executive Director in October 2007, the for one another. organisation had developed into one of In my time here, I have seen people the largest NGOs in sub-Saharan Africa, come to us on the brink of death, only working in two-thirds of Uganda’s 80 to regain their health a few months later districts. after receiving the treatment, care, support Over the past 20 years, TASO has and compassion that TASO offers to all its counselled, treated, cared for and supported clients. I have seen people come to us more than 180,000 clients and their family fleeing stigma and discrimination from their members. It is estimated that, overall, at friends and family members, only to return least one million people in Uganda have to the same communities, empowered by benefitted directly from TASO services. In the love and acceptance we give them, using addition, several million more have been their personal testimonies to triumph over educated about HIV and AIDS through TASO stigma, and helping other people to protect drama groups, radio programmes or talks themselves against HIV. by TASO staff. The ART programme that we When TASO began, we planned and introduced in July 2004 has enabled 18,000 operated in an atmosphere of great un­ of our clients to extend their lives and has certainty because the exact nature and the ensured that, from helping our clients die full consequences of the AIDS epidemic with dignity in the past, TASO is now helping were not yet clear. There was no cure for them live positively and in dignity. HIV infection, and apparently no prospect of one on the horizon. Public fear of AIDS Looking back led the government and international Looking back at TASO’s humble origins, it is organisations to prioritise HIV prevention, amazing to see how large the organisation while care for those already infected and has become and how many lives we have affected received far less attention. touched or changed over the last two In TASO, however, we decided to prioritise decades. Although TASO as an organisation care and support for people living with or has grown beyond our wildest imaginations, affected by HIV and AIDS, because we were the people within TASO – the staff and the convinced that this was a high priority clients, the volunteers and the supporters area that was being largely neglected. Our

81 United Against AIDS advocacy efforts focused on issues such faith-based hospitals, NGOs, community as the importance of educating the public groups, young people’s associations, local through full and accurate information government authorities, schools, artists about HIV and AIDS, combating HIV- and musicians, and many other sections related stigma and discrimination, enabling of society. This is what we mean by being people living with HIV to be treated for ‘United against AIDS’, in the words of one opportunistic infections, and helping of TASO’s most popular songs. families cope with the psychosocial and The number of new infections has risen economic consequences of HIV and AIDS. over the last three years to more than As the epidemic has unfolded, its nature 130,000 per year. Although an estimated and consequences have become clearer, 90,000 Ugandans can now access ARVs, and we have modified our strategies and these life-prolonging drugs are still too programmes accordingly. expensive or inaccessible for the rest of TASO has always aimed to complement the estimated 200,000 Ugandans who the government’s efforts in combating the need them. Over one million Ugandans are HIV epidemic. We have never wanted to living with HIV, but many of them have not set up health services in parallel to those of tested and do not know their sero-status. the government. We therefore linked our The epidemic itself is evolving; more and service centres to government hospitals, more infections are taking place within establishing them either within, or just marriage and other stable relationships: outside, government hospital premises. nearly two-thirds of TASO client couples This has made collaboration with who were tested in a recent study5 were government health services easy to discordant, with one partner infected while implement. the other was not. Uganda has also had a distracting debate Future priorities in recent years in which the different aspects Looking ahead, it is clear that, despite the of the ABC model – Abstinence, Being gains made in Uganda’s fight against HIV faithful and Condom use – were presented and AIDS, many challenges remain. Our as mutually-exclusive and competing health and social support systems are not modes of HIV prevention. The reality is sufficiently geared towards taking care of that all three options have contributed to the needs of people living with HIV, and the reduction of HIV prevalence in Uganda. their families, through counselling, social People, especially the youth, need to be support and medical care. We need to given accurate information so that they build the capacity of our country to provide these services. TASO realises that it will 5 “High discordance rates among ART Clients in never reach everybody. We cannot put our The AIDS Support Organisation”, by Mohamed Mulongo and Francis Wasagami, presentation service centres everywhere, so we work to PEPFAR HIV/AIDS Implementers Meeting, with partners – with the Ministry of Health, Durban South Africa, June 2006.

82 The future of TASO

U.S. President George W. Bush and his wife, Mrs Laura Bush, visit TASO Entebbe in 2003.

Dr Alex Coutinho with Dr Elizabeth Madraa (HIV/AIDS Programme Manager, Ministry of Health) and Dr Christine Nabiryo (Director of Planning and Projects, TASO). TASO's aim has always been to complement, and not compete with, government health services.

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TASO drama group member gives her testimony during a public performance. TASO is scaling-up its efforts to prevent new HIV infections.

The music group at the TASO Mulago Day-Care Centre, Kampala. Each TASO service centre has a day-care centre, organised by and for people living with HIV.

84 The future of TASO can make informed choices about their and impact mitigation services for sexuality and lives. HIV-infected people and their affected In order to address the changing nature families. of the epidemic, TASO is evolving from an organisation that predominantly provided 3. Contribute to the human resource treatment, care and support to those requirements of the national HIV living with HIV, into an organisation which response through institutional and accords equal priority to preventing new community capacity-building. HIV infections. 4. Contribute to a process of informing and Robert Ochai, TASO’s new Executive influencing the global and national HIV Director, notes: “We will never fight and response through operational research, defeat AIDS if we say we are just going to modelling, documentation, policy treat those who fall sick; we’ve got to stop development, advocacy, mobilisation people from getting infected because once and sensitisation. they are infected, they are infected for life. The key to winning the fight against AIDS 5. Develop and promote partnerships and is in preventing new infections, which is collaborations in HIV service delivery for why everyone has to be involved in this prevention, care, treatment and impact fight.” mitigation. Strategic Plan 6. Contribute to enhancement of gender TASO has drawn up a Strategic Plan (see mainstreaming in HIV prevention, care box, p. 86) to guide its activities through and support services through a rights- 2008 to 2012. The overall goal of the based approach by TASO and partner plan is to contribute to the national and AIDS service organisations. international efforts to achieve universal access to quality and comprehensive 7. Contribute to enhancement of HIV HIV prevention, care, support, treatment and AIDS prevention, care, support, and impact mitigation services in an treatment and impact mitigation services equitable and sustainable approach in conflict and post-conflict areas through through enhanced partnerships. Through appropriate service-delivery models. the Plan, TASO will seek to achieve the 8. Enhance and mainstream the GIPA following goals: principle in all forms of HIV service 1. Provide access to comprehensive HIV delivery by TASO. prevention services to affected families and communities. 9. Ensure adequate financial, human and other resources and systems required 2. Provide access to high quality com­ for the successful implementation of the prehensive care, support, treatment 2008-2012 Strategic Plan.

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Strategic Plan, 2008-2012 The underlying principles of TASO’s Strategic Plan for 2008 - 2012 are:

Evidence-based programming creating awareness about HIV and AIDS TASO programming will be informed by in order to prevent new infections and fight research, information systems and best stigma and discrimination. practices within TASO and other national and global stakeholders. These will Enhancing partnerships include the use of the ABC+ prevention Our training programmes will enable us approach, appropriate counselling to help other organisations improve their models, a basic care kit, home-based ART services, while the mini-TASOs will help and home-based HIV testing, nutritional other health facilities adopt our treatment, supplementation and the GIPA principle, care and support package. and other proven interventions identified in the period. Quality assurance TASO will consolidate this strategy to Greater focus on the family cater for emerging HIV issues, new TASO shall continue to use its clients interventions and to fill gaps pointed out as an entry point to mobilise, sensitise by reviews. and provide services to the other family members. This will improve the welfare Enhancing accountability of people living with HIV, address stigma TASO has developed strong and and discrimination, and contribute to the transparent accountability measures that general efforts to scale-up services. it intends to maintain by ensuring that accountability is true and fair, backed Empowering communities with agreed qualitative and quantitative TASO will enhance community empower­ outputs, clear and agreeable to key ment programmes to contribute to overall stakeholders and implemented at a fair HIV targets and priorities. TASO will use cost. experiences, lessons, findings and best practices by TASO and other key players Value addition to enhance community programmes to The choice of activities and services to contribute in addressing critical emerging be implemented in 2008-2012 will be HIV needs and challenges. based on their potential to add value to the lives of TASO clients, their families Greater Involvement of People and communities. Value-adding activities Living with HIV (GIPA) will include social support, organisational Through interventions such as Positive capacity building, stigma reduction, Prevention, TASO will continue its advocacy and activism and sub-granting pioneering work in putting PHAs at the funds to various groups fighting the forefront of its activities, particularly epidemic.

86 The future of TASO

Consolidating gains cannot put our centres everywhere so Throughout its first 20 years, TASO has we work through partners; for instance, experienced cycles of growth and con­ we work through the Ministry of Health solidation. The first period, between to build their capacity to provide the 1987 and 1990, saw the organisation take services that we do. The health system is shape as we volunteered, without pay, to not yet sufficiently geared towards taking create a support system for the distressed care of the needs of all people living with and suffering people we saw around us HIV and AIDS such as counselling, social and in our homes every day. support, ART and home-based care; we Between 1991 and 1995, as the need to work together to build capacity structure took form and funding became to provide these services.” available to enable us devote more time to TASO is also widening and deepening the organisation, TASO grew rapidly and its partnerships with communities spread out beyond Kampala, resulting through its service centres, mini-TASOs in seven service centres across the and centre-advisory committees, so as country. This was followed by a period of to involve as many people as possible consolidation, between 1995 and 2001, in preventing new HIV infections and when the organisation took stock of its providing the best care, treatment and achievements and started developing its support possible for those people living capacity as a training organisation. with HIV. Between 2001 and 2007, we Despite the emphasis on consolidation, experienced another period of rapid TASO will also seek to play a larger role in growth and expansion through the preventing new HIV infections, especially opening up of four more service centres, through discordance and infection 15 mini-TASOs and partnerships with rates among married people. Robert eight community based organisations Ochai says: “We need to strengthen our across the country. Moreover, we began prevention messages, to remind people working in northern Uganda, where that HIV is still with us and is real, and years of war had decimated whatever strengthen our interventions. There are health and social support networks had certain drivers of the epidemic right now previously existed. – especially the issues of discordance The new Executive Director, Robert and multiple sexual partners. We need to Ochai, has indicated that, between 2008 target our messages to those issues that and 2012, TASO will seek to consolidate are driving the epidemic.” its programmes to ensure that the quality of services we provide to our clients Challenges ahead remains consistently high: In his last speech as Executive Director “TASO realises that it will never reach at the 2007 Annual General Meeting in everywhere and everybody,” he says. “We Kampala, Dr Alex Coutinho highlighted

87 United Against AIDS

TASO client and counsellor: from the start, counselling has been TASO's 'core competence'.

TASO Mbarara Drama Group: The TASO clients’ music, dance and drama groups help to combat HIV-related stigma and at the same time their performances carry educative messages on HIV prevention, care and support.

88 The future of TASO the challenges TASO faces as it embarks on Leaving TASO, but the next phase of its life. These challenges not the struggle include, for example: I remain confident that we have, within the TASO family, the right people, the v Managing the increasing demand for our appropriate systems and the best partners services and empowering clients, families to help us address these challenges and and communities to take care of their day- continue to make a difference in people’s to-day health care and counselling needs. lives. It is particularly important that we evolve from an organisation that only v Ensuring that TASO has a strong HIV provides treatment, care and support to prevention programme, so that we are not those living with HIV, to pay more attention just a counselling and care organisation but a to preventing new infections. key player in preventing further infections. I will leave TASO at the end of 2008 to set up a physiotherapy centre, where v Continuing as a world leader in developing patients can come and where students can innovative models of prevention, coun­ carry out their practical training. Several selling, care and treatment that can be of TASO’s founder members came from scaled-up, that can be reproduced in the School of Physiotherapy at Mulago other settings and which can be adopted Hospital, and I feel that setting up this in other countries. centre is one way of giving something back to the profession. v Maintaining and expanding our current I have led a very busy life in TASO right donor pool and remaining accountable in from the start. I have grown in mind and the four areas of governance, financial, spirit during my time here and acquired programmatic, and cost-effectiveness. skills in administration, management, community mobilisation and leadership. I v Maintaining our volunteers, staff, have met many people and made numerous infrastructure and systems to enable us friends, both within and outside Uganda, to deliver services to as many clients as many of whom I am still in contact with. we can, and It is not easy to leave an organisation that one has been part of for 20 years, and v Retaining our brand, reputation, style, one that is as close, warm and welcoming soul, values, our concern for the as TASO. Yet, it is important that, as TASO downtrodden, and “to remain humble grows we, the founder members, allow in but ambitious and to never forget that younger and more vibrant people to drive ours is to champion the rights, the dignity the organisation forward as it enters a new and the welfare of HIV-positive people, chapter in its life. their families and loved ones”. My message to all members of the TASO

89 United Against AIDS family is to stay true to the TASO spirit. While I am retiring from TASO, I am Remember the TASO mission and values. not quitting the struggle. I will remain a Never forget that TASO is there for our member of the TASO family, and I share clients – whether old or young, male or the optimism of all my colleagues in TASO female, and regardless of class, creed or that, united against AIDS, we shall finally political allegiance. win the war against this epidemic.

90 BIBLIOGRAPHY

Effective HIV/AIDS Activities: NGO Work by M. Hudson, Penguin Books, London in Developing Countries, by UK NGO 1995. Consortium, London 1996. TASO Annual Reports, 1999, 2000, 2001, “Exercising Leadership to make 2002, 2003, 2004, 2005, 2006. Decentralisation Work”, in: The Manager: Management Strategies for Improving TASO Strategic Plan, 2003 – 2007. Health Services, vol. 11, no. 1, MSH Publications, 2002. TASO Strategic Plan, 2008 – 2012.

Living Positively with AIDS. The AIDS The Inside Story: Participatory Eval­ Support Organization (TASO), Uganda, by uation of TASO Services, by TASO, Kampala Janie Hampton, No. 2 in Strategies for Hope 1994. Series, ActionAid, London 1990. Understanding the Process of Organ­ Making a Difference: NGOs and isational Development in Shaping Development in a Changing World, Michael Strategic Change: Making Change Edwards and David Hulme (eds.), Save the in Large Organisations, by Andrew Children and Earthscan Publications Ltd, Pettigrew et al, Sage Publications Ltd, London 1992. London 1992.

Managing without Profit: the Art of We Miss You All, by Noerine Kaleeba, Managing Third Sector Organisations, SAfAIDS, Harare 2002.

91 United Against AIDS APPENDIX TASO Donors, 1988-2007

ActionAid OXFAM Agricultural Cooperative Development President’s Emergency Plan for International/Volunteers Overseas AIDS Relief (PEPFAR) Co­operative Assistance (ACDI/VOCA) Pfizer Foundation AusAID Rockefeller Foundation CAFOD Save the Children Fund Caritas International Swedish International Development Centers for Disease Control Agency CELTEL Uganda Mrs Sally March (late) DANIDA TASO UK Department for International Terre des Hommes Netherlands Development (UK) Development Cooperation Ireland Trickle-Up Elton John Foundation USAID (through AIDSCOM/DISH/ Experi­ment in International Living / European Union John Snow International/UPHOLD/ German Emergency Doctors World Learning Incorporated) Government of Uganda (Ministry of UNICEF Health) UNDP Global Fund to Fight AIDS, UNAIDS Tuberculosis and Malaria Voluntary Service Overseas Heifer Project International World in Need Japanese International Cooperation Agency/Japanese Embassy World Food Programme Johnson & Johnson World Health Organization Medical Research Council (UK) World of Hope

92

NºNº1717

The STRATEGIES FOR HOPE TRUST produces and distributes books and videos that promote good practice in HIV and AIDS work by civil society organisations in developing countries, particularly in sub-Saharan Africa.

Founded in 1989, STRATEGIES FOR HOPE has produced 21 books, five films and the ‘Stepping Stones’ training package. These materials are used for information, education, training, planning and advocacy purposes in over 160 countries. Series Editor: Glen Williams

THE AUTHOR Peter Kitonsa Ssebbanja was one of the 16 founding members of The AIDS Support Organization (TASO) in 1987. He has worked for TASO in several different capacities, and is currently Director of Advocacy.

ISBN 978-1-905746-06-4 ISBN 978-1-905746-59-0 (E-book)

www.tasouganda.org www.stratshope.org