'WE MISS YOU ALL' by Noerine Kaleeba with Sunanda Ray

Death and pain are frequently recurring themes in this highly personal book by Noerine Kaleeba, the founding director of The AIDS Support Organisation (TASO) in Uganda. Yet this is by no means a depressing book. On the contrary, it is engaging, surprising, challenging and absolutely inspirational.

The first edition of WE MISS YOU ALL was published in 1991. Noerine Kaleeba's experience of AIDS had begun five years earlier: "AIDS came to my house," she wrote, "on the afternoon of the 6th June 1986, when the British Council sent me a telex to tell me that my husband Chris was seriously ill in a hospital in England." Chris had been undertaking postgraduate studies in Hull, where Noerine was able to visit him in hospital. She was shocked by how AIDS had enfeebled and emaciated her once-handsome husband. Chris was able to return to Uganda, but a few months later he died in hospital, in severe pain, shunned and neglected by the nursing and medical staff.

After Chris's death, Noerine withdrew to her mother-in-law to grieve. Three weeks later she returned to Kampala and began meeting with a group of 16 friends who were either living with or directly affected by AIDS. These meetings led to the formation of TASO, which aimed to provide medical, practical and psychosocial support to people living with HIV/AIDS. TASO quickly established itself as an effective organisation, mobilising hundreds of volunteer counsellors and other service providers.

But TASO also went further, by pioneering an approach known as 'positive living', which enabled HIV-positive people to retain (or regain) their dignity, to improve the quality of their lives, to overcome HIV-related stigma and discrimination, to plan for the future, and even to prolong their lives. This approach - since adopted by HIV support and service organisations in many parts of the world - was a huge break-through at the time.

Under Noerine Kaleeba's leadership, TASO rapidly developed its services and expanded its outreach, achieving an international reputation for the clarity of its vision and the quality of its innovative work. But suffering and death were never far away. Of TASO's original 16 founding members, for example, 12 died of AIDS within the organisation's first year.

Leading TASO through its early years of growth and development took their toll on Noerine. In April 1995, feeling "totally burned out", she retired as Director of TASO. In the following year she joined the newly established United Nations Joint Programme on AIDS (UNAIDS), based in Geneva. She still works for UNAIDS, as the organisation's specialist in community mobilisation. In this new edition of her book, she describes - with typical, self-deprecating humour - how she has coped with the move:

"My training is in physiotherapy; my experience is in counselling and caring; my heart is in supporting people who are sick. Fighting for budgets and attending meetings and writing reports are not activities in which I excel (ask the long-suffering UNAIDS administrative staff who have to clean up after me!)."

Yet she has been a highly effective and respected spokesperson for UNAIDS at scores of international meetings throughout the world. Moreover, she is still firmly convinced of the supreme importance of the organisation's work:

"I continue to work with UNAIDS because I see it as the only hope, the only way to focus advocacy in order to provide the much needed influence."

Much has changed on the international HIV/AIDS scene since the first edition of WE MISS YOU ALL was published, over a decade ago. The most obvious change is the availability of effective antiretroviral drugs (which TASO is helping to make more accessible in Uganda). Equally important, however, is the fact that people living with HIV are increasingly viewed as important partners rather than simply as victims of the HIV pandemic. This is due, in large part, to the emergence of literally thousands of HIV/AIDS support and service organisations - many inspired by TASO - throughout the world. As a result of these and many other changes, HIV/AIDS is increasingly recognised as a preventable, manageable health condition, rather than as an inevitable fate or as a certain death sentence.

Noerine Kaleeba's book reminds us, however, of the human cost of the HIV pandemic. Uganda is regarded as one of the few 'success stories' on the international HIV/AIDS scene, having reduced HIV prevalence by two-thirds since the early 1990s. Noerine Kaleeba pays tribute to her country's achievements, but also adds:

"I have to put quotation marks around the word 'success' every time I use it, because although the statistics are impressive, it certainly doesn't feel like a success to me or to anyone I know. Too many are still dying and suffering."

In fact HIV/AIDS has continued to ravage Noerine Kaleeba's own family. Since the first edition of WE MISS YOU ALL was published in 1991, 12 of her close family members have died of AIDS. She is now responsible for looking after 14 orphans, in addition to her own four children. Most families in Uganda and many other African countries have similar stories to tell.

Unusually for an international civil servant, Noerine Kaleeba is not ashamed of personalising the HIV/AIDS pandemic. Speaking to the dignitaries gathered at the World Health Assembly in 2001, for example, she described how her own family has suffered from the exorbitantly high prices of antiretroviral drugs:

"I have four siblings who are HIV-positive, and although we had previously agreed with our family that we could not afford ARVs for any of them, the issue is being revisited now - thus placing enormous pressure on me, as I am the key breadwinner of the family!"

Yet Noerine Kaleeba's basic conviction is still one of hope, based on her faith in God, in her children, and in the friends who have supported her for nearly two decades:

"My message to all people in the world remains one of hope. Hope for a future world without HIV and AIDS. This hope will come out of a realisation that the whole population - the infected, the affected and the uninfected - need to join the fight against HIV and AIDS. ... To everyone living with HIV infection or disease the message is of hope, and the courage to fight until a cure is found. We triumph over the virus when we do not allow it to spread!"

Reviewed by Glen Williams (Series Editor, Strategies for Hope)

* WE MISS YOU ALL (second edition), by Noerine Kaleeba with Sunanda Ray. xii + 124 pp; ISBN 0 7974 2525X; published by SAfAIDS, Harare, 2002. Available from SAfAIDS: [email][email protected] Telephone: +263 4 336193/4.