AIDS AND SOCIETY RESEARCH UNIT (ASRU): A RETROSPECTIVE ON SOCIAL RESPONSIVENESS
When ASRU was set up in early 2001, AIDS was already a burning socio-economic and political issue. About 15% of the adult population was HIV-positive (rising to 20% by 2009) and 200 000 people died of AIDS that year. By the end of the decade, that annual death toll had doubled. That this was a social tragedy is beyond question – but what made the situation even more desperate back in 2001 was the refusal of then-President Mbeki and his Health Minister (Tshabalala-Msimang) to provide antiretroviral (ARV) treatment through the public sector to help prevent mother-to-child transmission of HIV and to extend the lives of people with AIDS.
This posed unique challenges for the nascent research unit. The founding researchers and students believed strongly that we had to do more than gain a better understanding of the various psycho-social and political-economic dimensions of the epidemic, and that we should also be working actively to assist communities struggling with HIV. ASRU was thus initially set up with an ‘outreach’ arm to provide counselling, education and training for HIV-positive people in Khayelitsha.
Our first outreach activity was the ‘Memory Box Project’ which provided support for HIV-positive people and facilitated what we hoped would be a ‘non-exploitative interface’ between researchers from UCT and AIDS-affected communities. The key idea was that HIV-positive people would attend a series of workshops at which they would receive education about living positively with the virus, and begin talking about how to disclose their HIV status to family members. Participants in the workshops would make ‘memory boxes’ and ‘memory books’ out of recycled materials as a way of telling stories about their lives, as a means of communicating with their families and learning from the experiences of others.
Our early research did indeed benefit from this ‘action-research’ environment and ASRU was able to publish a set of studies relating to stigma, disclosure, economic consequences of HIV, family dynamics and gender. We published various working papers (and a book) drawing on the narratives of people living with HIV, and hosted a writing competition (resulting in an anthology of AIDS-related short stories published in 2004) for authors all over Southern Africa. And, by forging working relationships with the Treatment Action Campaign (TAC) and various NGOs through our early outreach activities, we gained a better understanding of the political economic terrain shaping AIDS policy, and the psycho-social responses to the AIDS epidemic.
ASRU’s early outreach efforts soon expanded beyond facilitating workshops, to training peer educators to conduct them. In particular, we invested a lot of energy and resources training a group of HIV-positive activists (known as ‘the A-team’) as facilitators and educators – and subsequently also as research assistants. We developed training materials (and provided then free online) and there was soon a strong demand for memory box workshops in clinics in the Western Cape. By 2003, ASRU researchers and the ‘A-team’ were running workshops as far afield as Malawi, Zimbabwe, Namibia and Botswana for organisations like the Red Cross and Save the Children.
But ASRU’s outreach activities were in a state of constant flux and restructuring. Almost as soon as we started the Memory Box Project – a project drawing inspiration from a Ugandan prototype – its relevance was called into question. The Ugandan project had been set up to assist HIV-positive people disclose to their families and help them and their children prepare for an untimely death. However, by 2001, ARVs were providing new hope for developing countries. Short-course ARV treatment had been shown to be a simple and cost-effective means of preventing mother-to-child transmission (PMTCT) of HIV, and hope was growing that competition from producers of generic ARVs in Brazil and India could lower the price of chronic ARV therapy to affordable levels. In this context, it seemed far more appropriate for ASRU’s outreach work to be contributing to the fight for life rather than counselling people about death. The great blot on the horizon, however, was the South African government’s reluctance to follow the lead of Brazil and Botswana with regard to the public sector provision of ARVs for PMTCT or AIDS treatment. Instead, President Mbeki and his health minister questioned the science of HIV disease and portrayed ARVs as harmful. A great deal of ASRU’s research thus focused on debunking AIDS denialism and critiquing South African AIDS policy. In this regard, our work proved to be highly policy-relevant, but in activist ways we had not initially expected.
Being based in the Western Cape also shaped ASRU’s research and outreach agenda. In sharp contrast to the rest of the country, from 1999 the Western Cape had quietly been introducing PMTCT in government hospitals, and from 2000 had begun an innovative partnership with Médécins Sans Frontiéres (MSF) and later Absolute Return for Kids (ARK) to provide ARV treatment in African townships. This, together with the fact that TAC’s head-quarters were in Muizenberg, made Cape Town an important site of struggle for an ARV rollout in South Africa. It also provided a context in which students and researchers from ASRU could work with clinicians, AIDS activists and community organisations to understand the nature of stigma, the challenges of disclosure, the challenges that biomedicine posed for traditional healing paradigms – and to craft educational materials accordingly.
The outreach program reflected these changes by becoming more activist-oriented and advocating for ARVs.
One of the first projects was a partnership with MSF in which people living with HIV (most of whom subsequently became ASRU’s ‘A-team’) created ‘Body Maps’ – i.e. life-size artistic renditions of their bodies depicting important life events, the impact of HIV and the effect of ARVs. These paintings were made in a therapeutic context in which the act of painting provided an important context for participants to tell their life stories and to learn more about ARVs. But they were also powerful political instruments which could be – and were, to an enormously successful extent – used to advocate for an ARV rollout. The ‘A-team’ showed and discussed these works in many South African venues. Exhibitions were also held in the United States, the UK and Europe. As part of the project, we made available a set of high-quality signed digital prints (which we still produce today for educational and advocacy purposes), and a set now resides in the constitutional court building in Pretoria.
ASRU has enjoyed a good working relationship with TAC, both on the outreach and the research side. Economic research in ASRU demonstrated that it would save the government money if a national PMTCT program was introduced, as there would be fewer AIDS-sick children presenting at hospitals in the short- and medium-term. These findings formed the basis of an affidavit in support of TAC’s successful court case against the South African government to force it to roll out PMTCT interventions in 2002. Subsequent ASRU research indicated strong economic, demographic and social reasons for providing ARVs to AIDS-sick people, and was used to support TAC’s subsequent campaign for an ARV rollout – a campaign which finally bore fruit in October 2003 when cabinet overruled Mbeki and Tshabalala-Msimang.
In sum, ASRU’s early years (2001-2003) were profoundly shaped by the struggle in South Africa to use ARVs for HIV prevention and AIDS treatment. The outreach activities shifted rapidly from disclosure- and bereavement-oriented counselling to a more pro-active activist stance. Our outreach work accordingly shifted from Memory Boxes, to Body Maps, and then, in 2004, to more explicitly educational interventions. This reflected the changing domestic policy context but was also in response to the sea-change that had taken place internationally on AIDS policy. In 2003 the World Health Organisation launched its 3x5 campaign to put three million people on ARVs in developing countries by 2005, and by 2004 the Gates and Clinton Foundations and the American President’s Emergency Fund for AIDS Relief (PEPFAR) had transformed the AIDS funding situation dramatically. This unprecedented global consensus in favour of universal access to ARVs resulted in more funding flowing into South Africa to support, inter alia, the kinds of counselling and outreach activities we had been conducting. As these activities were better conducted by NGOs and community organisations, ASRU steadily shifted out of outreach work and focused more heavily on our core competencies: qualitative and quantitative policy-relevant research. We continued to provide educational materials (especially for ARK) but this role had drawn to a close by 2008.
Probably our most important educational tool was the ‘Visual Body Map’ – an educational package comprising two wooden frames and nine clear plastic overlays, each representing a particular human biological system (e.g. the nervous system, the circulatory system, the digestive system etc) that can be used in a range of spaces to educate people about human biology and side effects of ARVs.We also provided an accompanying manual for peer educators. This package proved to be very popular, and has been distributed to many clinics, TAC support structures, and NGOs like MSF and ARK working with government to assist the rollout.
As ASRU’s outreach activities changed, and then were scaled back, we assisted the ‘A-team’ to gain new skills, notably in research. Some of them went on to work for NGOs as counsellors, facilitators and administrators, others worked as research field workers on various socio-economic surveys in the Centre for Social Science Research and subsequently for market survey companies. They have, in other words, been able to make the transition from AIDS activists, where their very identities were closely bound up with their HIV status, to leading more conventional working lives. This not only demonstrates the power of ARVs to restore people’s health, but also reflects the changed political environment on AIDS.
ASRU now no longer provides Body Map workshops, but instead passes on requests for these services to old members of the ‘A-team’. We continue to provide digital prints of body maps for educational purposes (our most recent exhibition being in Cambridge, UK, in 2008), but as their function and purpose – to advocate for ARV treatment – becomes of historical rather than contemporary interest, the demand for these political and psycho-social works of art is dying a natural death. ASRU’s social responsiveness now comprises primarily support for policy-relevant research. In 2007, ASRU assisted with the secondment of policy and communication advisors to support then-Deputy Minister of Health, Nozizwe Madlala-Routledge. This helped draw together researchers and practitioners and finalised the 2007-2011 HIV/AIDS and STI National Strategic Plan (NSP). However, when then-President Mbeki relieved Madlala-Routledge of her position, this intervention came to a close. As of 2009, ASRU’s most direct form of social responsiveness is to work with the HIV Outreach Program and Education (HOPE) to facilitate communication between traditional healers and doctors training sangomas to recognise symptoms of AIDS and to refer people to ARV clinics. We occasionally assist TAC with information and articles for their publications, notably Equal Treatment. ASRU researchers are engaged at an international level, conducting research for UNAIDS and in collaboration with researchers at Yale.
ASRU’s social responsiveness has shifted a great deal over the nine years of its existence – largely in response to the rapidly changing AIDS policy context. We have shifted away from outreach and now focus almost all of our energies on supporting research. This, we believe, is more appropriate for a university research unit – especially given the existence of other, better-qualified NGOs to provide the kind of outreach we offered. But if the circumstances require it once more, we will become more directly engaged in community work and AIDS advocacy.
References
This reflective piece was provided by Professor Nicoli
Nattrass of the School of Economics.
CURRICULUM VITAE RELATED TO SOCIAL RESPONSIVENESS (ASRU)
BOOKS
2010 Nathan Geffen Debunking Delusions: The Inside Story of the Treatment Action Campaign
2008 Jo Wreford ‘Working with spirit’: Experiencing Izingoma healing in contemporary South Africa
CHAPTERS IN BOOKS
2009 Nicoli Nattrass and Seth C. Kalichman The Politics and Psychology of AIDS Denialism
2009 Nicoli Nattrass AIDS Denialism versus Science
2008 Nicoli Nattrass AIDS inequality and access to antiretroviral treatment: A comparative analysis
JOURNAL ARTICLES
2010 Rebecca Hodes Televising Treatment: The Political Struggle for Antiretrovirals on South African Television
2010 Timothy L. Mah Prevalence and Correlates of Concurrent Sexual Partnerships Among Young People in South Africa
2009 H.B Jaspan, R. Li, L. Johnson and L-G. Bekker The emerging need for adolescent-focused HIV care in South Africa
2009 Rene Brandt Putting Mental Health on the Agenda for HIV+ Women: A Review of Evidence from Sub-Saharan Africa
2009 Atheendar S. Venkataramani , Brendan Maughan-Brown, Nicoli Nattrass and Jennifer Prah Ruger Social Grants, Welfare, and the Incentive to Trade-Off Health for Income among Individuals on HAART in South Africa
2009 Joanne Wreford The pragmatics of knowledge transfer: an HIV/AIDS intervention with traditional health practitioners in South Africa
2009 Nicoli Nattrass Still Crazy After All These Years: The Challenge of AIDS Denialism for Science
2009 Nicoli Nattrass Poverty, Sex and HIV
2009 Nathan Geffen Beyond HAART: scientists and activists need to work together
2009 Nathan Geffen Justice After AIDS Denialism: Should There Be Prosecutions and Compensation?
2009 Rene Brandt The mental health of people living with HIV/AIDS in Africa: a systematic review
2009 Eduard Grebe Contingency, contestation and hegemony: The possibility of a non-essentialist politics for the left
2008 Joanne Wreford and Monika Esser Including traditional African healers in HIV programmes: Preliminary experience from the Western Cape.
2008 Celeste Coetzee The impact of highly active antiretroviral treatment (HAART) on employment in Khayelitsha
2008 Nicoli Nattrass Gender and Access to Antiretroviral Treatment in South Africa.
2008 Nicoli Nattrass Are country reputations for good and bad leadership on AIDS deserved? An exploratory quantitative analysis.
2008 Nicoli Nattrass AIDS and the scientific governance of medicine in post-apartheid South Africa.
2008 Timothy Mah and Daniel Halperin Concurrent sexual partnerships and the HIV epidemics in Africa: Evidence to move forward.
2008 Nicoli Nattrass The (political) economics of antiretroviral treatment in developing countries