Faith, Hope and Science in the Time of AIDS Context and Broader Work 1

DRAFT not for citation please -- work in progress: Burns Giddy Upton 1 Faith, Hope and Science in the time of AIDS Context and broader work 1 Historians of medicine in South Africa have demonstrated that in the late 19th and 20th centuries instances of South African medical research and clinical innovation gained global recognition, notably in malaria and tuberculosis work; in malnutrition and breastfeeding studies; in emergency medicine and intensive care nursing; in occupational medicine (the study of silicosis and related diseases); in community oriented primary health care; and in transplant medicine. In the late 1980s, as activists inside of South Africa and the global community pushed for the final dismantling of Apartheid, the HIV epidemic engulfed Southern Africa. This paper is an extract from a larger work examining the history of one medical institution at the centre of a massive regional response to HIV. We trace the long roots of health care and the layers of institution-making in the Durban area, and the long and complex road leading to the response to HIV -- replete with complex political struggles and with huge energy and overlapping domains of power and resources in the areas of clinical care, social treatment, and pharmaceutical innovation and research. We examine the complex relations between local and international medical scientists, researchers, nurses and doctors from the late 1980s to the 2010s, and weigh the role of northern-hemisphere HIV researchers in the epicentre of the HIV epidemic -- the province of Kwazulu-Natal. These northern researchers mentored, shaped, informed, nudged, nurtured and funded the emerging HIV research activities in this east coast province of South Africa. In writing the history of McCord Hospital from 1985 to 2010 the wider work examines three main themes: Pioneering Medical Research (here we examine the rapidity and breadth of the response of medical science to HIV; the meteoric rise of networks, collaborations, and new entities); Funding (resource imperatives, balances of power and obligation, and staffing); and Research Ethics (complexities contingent on human subject research, knowledge ownership, and publication). We trace this complex and imbricated history of medicine to earlier engagements between northern and southern medical professionals in times of emergencies, epidemics and breakthroughs. Oral histories with more than 30 key actors, as well as archival sources and close reading of published works, form the evidentiary basis of the work and this paper. Drawing on the insights from one set of very telling interviews, we draw on the role of religion and science to root our analysis of this key hospital, and a regional medical school, both of which became the epicentre for globally-significant HIV work, forging links with USA based entities -- Columbia, Yale, UC SF, Harvard; and with the UCL in the UK. Introduction In the early 1990s, as HIV emerged into view in South Africa, often as an end stage series of infections in both adults and children, there were few salient biomedical treatments for HIV, and little knowledge of much more than palliative care for people progressing to AIDS. Knowledge of HIV in the young, especially of the impact in children of HIV infection, was extremely scanty. The complex social, physical and material pathways and causes of HIV infection; the co-infections implicated with HIV; the means and forms of research to address these gaps, and the solutions for prevention and treatment, were, initially, outside of people's grasp. The huge mental, emotional and material toll on the people of the region was however soon clearly visible. The devastating morbidity and mortality associated with HIV infection wracked every institution in the region. McCord Hospital was not 1 This paper is in DRAFT form and has been written by Catherine Burns, Janet Giddy and Jennifer Upton. It is not for citation please in this form, ut for discussion and input. Thank you. DRAFT not for citation please -- work in progress: Burns Giddy Upton 2 spared. Already as Bongiwe Bolani took over her Matronship in 1989 some of the early effects of HIV were being felt at McCord Hospital and by the time Dr Helga Holst took over the helm of McCord in 1992 many admissions were already HIV-related and staff members were beginning to get ill. In 1994 the Board Minutes recorded that McCord was battling with the steep rise in HIV-related admissions. Without efficacious treatment these men, women and children needed long-term chronic care, and stays in hospital wards of many weeks and months. Not since the height of the 1940 to 1960s TB epidemic period had McCord faced such a crisis. Many Board meetings were given over to discussions of how best to adapt. The Board agreed to contact Quarraisha Abdool Karim a social scientist who was already developing expertise in the 1993/4 period around HIV and AIDs. She would later go on to complete her PhD in the field of infectious disease epidemiology and would be a founder member of CAPRISA, and, in the 1994 period, she was about to be appointed as an AIDS advisor to the Minister of Health. This period was the first term of Nelson Mandela's presidency and while there was confusion around the causes of and treatments for HIV and AIDS and many mistakes were made in the scurry to respond in some positive ways, there was no denial of the existence of HIV or AIDS-related deaths and illness at this time. Abdool Karim had close associations with McCord Hospital and in September 1994 the Board had voted to invite her to become a member, but her national position made this impossible. In November 1994, just as her appointment was made public, the Board agreed that Mr Mametja and other staff at McCord would ask to draw on Quarraisha Abdool Karim's expertise and design a study to investigate the expected impact of AIDS (still the nomenclature of the day since most patients were progressing to the last stage of HIV infection), on health care provision for patients and staff at McCord Hospital. The Board reported that, based on their figures from wards and regional reports, … At the moment between 10 to 15% of the KwaZulu-Natal population was HIV positive and by 2002 it was expected that this would increase to 40% of the population. At McCord Hospital 30% of Hospital TB patients were HIV positive and approx. 15% of other patients. 80% of patients who died in the medical wards were HIV positive. At any one time there were between 3-5 children in the children's ward who were HIV positive.2 The meeting went on to discuss a way that McCord Hospital could support a hospice-style care facility that could offer palliative care. The poignant discussion about the facility in Eston (near to Pietermaritzburg the provincial capital and some 45 minutes away by car) called Lily of the Valley Home, which had 50 beds and could cater for children dying from AIDS, makes for very emotional reading today. [add in quotations] What the McCord Hospital staff were searching for, in addition to better treatments and scientific breakthroughs, was space and the resources to assist people suffering the final stages of AIDS in dignity and with good care. To this end, McCord donated beds to the Lily of the Valley Home and staff were encouraged to assist on a volunteer basis and as part of community outreach at the facility. In addition, over time supplies and equipment were donated to the Home whenever possible. The impact of the disease, the associated fear, stigma and related suffering that it brought, motivated McCord Hospital and its many staff members moved by religious faith, to explore the spiritual dimensions of care. Clinical and allied staff at McCord responsed first by offering the best clinical care they could to people with advanced HIV disease. Their second response was to reach out far beyond any other 2 McCord Hospital Board Minutes 24 November 1994, McCord Archive, Campbell Collections. DRAFT not for citation please -- work in progress: Burns Giddy Upton 3 hospital institution in South Africa, for help, to form a broad-based approach to the emergency. Through churches, volunteer organisations, and civic groups rom across the city and region as well as drawing on and igniting global connections, McCord began to draw together a network of experts, services and facilities to support people living with HIV. One early example was the link forged to the “Lilly of the Valley Home”, and many other smaller community-based providers of care and support in the absence of effective treatment. Initially it seemed that there was little else that institutions such as hospitals like McCord could do. HIV and AIDS threatened to destroy the fabric of South African life as well as the functioning ethos of hope of McCord. But out of the work that McCord had already pioneered -- in areas of sexual health and supporting very vulnerable people into clinical care -- the staff began to fight for new treatments and access to drugs. Caring for newborns with HIV and the women who had given birth to these children, began to focus attention at McCord around a message and practice of hope. McCord Hospital was not the only local health and training institution to grow rapidly during the years following South Africa’s first democratic elections. In 2000 a new consortium came together—the Centre for the AIDS programme of Research in South Africa (CAPRISA),3 and between 2009 and 2011 the KwaZulu-Natal Research Institute for Tuberculosis and HIV (K-RITH) emerged as a regional powerhouse, attracting world class scientists and mentoring new cohorts of South African based young researchers.4 These and other smaller clinical, research and advocacy groups, as well as many respected non-governmental organisations, began to make of the KwaZulu-Natal region a veritable hot house of innovation and projects developing in response to HIV.

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