Comic Relief’s HIV Funding – The End of an Era and a Personal Backstory

I have benefitted both personally and professionally from three major Comic Relief grants between 1993 and 2017. I have also, at times, acted as an advisor and grant reviewer. I am adding my voice to those of others who are grieving Comic Relief’s decision to end its HIV grant-making.

I was diagnosed with HIV, while pregnant, in 1992. In this pre-anti-retrovirals era, being told you have HIV, especially when expecting a child, amounted to a death sentence. I could not have been more fortunate in the care, respect and support that I received from my general practitioner who told me the news. She shaped my response through her careful asking me if she could give me a hug – immediately putting me in charge of what happened next and, in so doing, breaking through the almost universal terror in those days of even touching anyone with HIV. Remember those photos of Princess Di daring to shake hands with “AIDS patients?”

My doctor’s deep respect and care for me, and for all those who were fortunate enough to know her, inspired me, as well as a few close friends whom I dared to tell. We resolved to make the most of my diagnosis and to channel the grief I felt over the loss of my baby and the likely end of my own life.

Support for Stepping Stones

Between 1993 and 1995, we created the Stepping Stones program, funded mainly by Comic Relief. The project, led by Strategies for Hope (then part of ActionAid), was designed to promote care, respect and support for everyone in a community — women, men and children alike — regardless of gender, age, HIV status or other diversity.

Stepping Stones was designed for use with girls and boys, aged around 15 and up, as well as adult men and women. It has had a variety of very positive outcomes, for young people as well as adults, in line with many points highlighted in a recent systematic review of positive youth development. The program development took longer than planned, partly because of the enormity of the complex issues to be covered, and partly due to sheer exhaustion. There was a huge amount of emotion involved in working with rural community members in Uganda, where illness and death were the norm. But Comic Relief stuck with us, trusting in us to produce the goods we had promised and respecting our need for flexibility over the timing. This funding resulted in what has become the world’s longest-running and most widely geographically spread community-based program to address gender, HIV, communication and relationship skills.

A randomised control trial of the South African version produced evidence that Stepping Stones is one of the very few community programs known to reduce intimate partner violence, which is now clearly recognised as both a cause and a consequence of HIV and is also the main treatment access barrier for women. Violence against women living with HIV can often result in their not feeling able to access treatment at clinics. This can have a severe knock-on effect on their children’s health also. So, programs to address this violence form a critical part of children’s well-being as well as that of their mothers. The Stepping Stones program has been adapted and translated into many different languages and contexts by huge numbers of organisations, many also funded by Comic Relief. Comic Relief can rightly take much pride in its major contribution to the program’s initial development and roll out.

Support for The International Community for Women Living with HIV

The next time I benefitted from Comic Relief was in 2002, when I joined the board of the International Community of Women Living with HIV (ICW). Due to others’ illnesses, I was rapidly catapulted into becoming Chair of ICW. Owing to various, mainly illness-related crises, the organisation was spiralling into ever deeper debt and on the verge of closing down when Comic Relief stepped in with a grant to save and revive us. This grant was a lifeline at a time when all others were doubting ICW’s viability. With this grant, thanks to Comic Relief’s trust in us, our fortunes turned around and the staff produced important research and advocacy work to promote the rights of women living with HIV. These are too often missing from policies and programs – and yet critical to women’s own health, as well as that of the children in their care.

Support for Stepping Stones with Children

Most recently, Salamander Trust approached Comic Relief to fund the development of Stepping Stones with Children. Designed with our partner, PASADA in Dar es Salaam, Tanzania, this effort was created to support orphans and other vulnerable children affected by HIV (aged 5-14) and their caregivers. I had seen how much anxiety around my own health, coupled with lack of knowledge and stigma around HIV in their schools, had affected my older children as they grew up. Researchers such as Fabienne Hejoaka have documented how carers of their own and others’ children who are affected by HIV are often left overwhelmed and under-supported; and that children can often feel that it is their fault that life is so full of illness, death and stress.

This new program, with lead researcher Gill Gordon, was originally designed to run for three years. Again, its completion was delayed. However the efforts have proven their worth: we have just published an article documenting how the program not only builds psycho-social resilience of the children but also significantly improves the CD4 count and weight of the children living with HIV who participated. In addition, our poster at the recent International AIDS Conference describes the positive effects of the accompanying counselling guide on counsellors and their child clients alike.

These are just three examples of how principled Comic Relief has been in its HIV funding, and how its pioneering focus on funding holistic, rights-based work led to some hugely successful programs. For my colleagues and me, Comic Relief was always the go-to funder for ease of communication, a trusting, more equitable relationship, a flexible timeframe, understanding the importance of holistic programs, and a reasonable grant size.

Programs such as Stepping Stones could just not be produced today under many current restrictive, and often over-simplified, project timeframes. There is a major crisis in funding a rights-based approach to the response for women and children affected by HIV. Comic Relief can be proud of having funded approaches to HIV, which have led to important achievements. We hope that other funders will take up the chance to fund work, which challenges the standard, top-down biomedical response to HIV, and which, instead, focuses holistically on the voices and rights of those most affected.

Alice Welbourn is Founding Director of Salamander Trust. She is a trainer, researcher, writer and activist on gender, HIV, sexual and reproductive health and rights.

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