From communities of death to communities of hope.

A number of people have over the years played a role in the development of the TAC and our battle for antiretrovirals. There are too many to mention. In the following pages a small group of people who played a role in one way or another and represent various constituencies, share their recollections of the past and their dreams for the future.

Communities in South Africa, once surrounded by death, especially of the most economically and socially productive members, have been transformed to communities of hope as a result of ARV treatment.

In 2002, CAPRISA (Centre for the AIDS Programme of Research in South Africa) established a research clinic in a heavily burdened rural community in the KwaZulu-Natal Midlands, by invitation from the traditional leadership. The high prevalence of HIV-positive people in the area made it untenable to only undertake prevention research. We knew about triple therapy but it was inaccessible and unaffordable, and none of the clinical staff had experience in providing treatment as it was not in the curriculum of nurses or doctors. I recall each week, driving down to the clinic with great trepidation, wondering how many new tombstones were erected at the homesteads I went past, or how many tents would be dotting the hillsides marking the deaths awaiting burial.

The entire village was under a sombre cloud as the death toll rose. Grandmothers raising infant children whose parents had succumbed to the epidemic, were commonplace. Faith-based healers and clinical staff had the toughest jobs, officiating over funerals or attending to sick patients with little to offer to patients or their families.
And then in 2003, after another dark day of illness and death, we got a call from a colleague at the National Institutes for Health in the USA informing us that the President’s Emergency Fund for AIDS Relief had been established and asking if we would be interested in providing ARV treatment to the communities that we were undertaking research in. We accepted without hesitation. This funding enabled us to provide ARV treatment to patients with AIDS in this rural community.

As word got out, we were inundated with hundreds of very sick patients every day. A few were transported on wheelbarrows, others had epileptic seizures in the waiting room. Staff worked up to 12 hours a day, unwilling to turn away a single patient, and within a short space of time patients, families, community and staff celebrated the joys of return to good health – nothing short of a miracle.

We knew right away, given the demand for care, that a clinician-driven service was not going to be sustainable to meet the immense needs; at the outset, we developed a nurse-driven model of care provision. Ordinarily this community would have had to wait for many years before new health programmes reached them, yet we were able to bridge an important gap by taking treatment immediately to a rural community. This approach paved the way for other technological advances to be rapidly introduced into this community.

However, there is still much to do: health systems must be strengthened to sustain the gains, address stigma and discrimination, ensure retention in care, and continue high therapeutic success rates. Thus far the integration of TB and HIV services is insufficient to offset the high mortality rates from undiagnosed and untreated TB in HIV-TB-co-infected patients.

Gender-based violence, preventing HIV infection in adolescents, high maternal mortality rates, real or perceived stigma and discrimination, corrective rape of lesbians, and a myriad of other human rights challenges remain ongoing obstacles in the fight against AIDS in much of Africa.

There is a growing movement towards the test-and-treat approach against the backdrop of a plateau in donor funding, a crumbling and ageing health infrastructure, overwhelmed health services and sub-optimal ART retention, but it has sobering implications for programme sustainability and success.

In the last decade we have witnessed South Africa:
Implement a continuum of AIDS care to a scale unprecedented in magnitude.
Re-appraise policies and the scope of practice of healthcare workers, resulting in task shifting of healthcare responsibilities.
Invest in the largest global rollout of GeneXpert technology in response to the high morbidity and mortality from HIV-associated tuberculosis.
Now, the advocacy efforts that resulted in victory in the struggle for access to ART treatment need to be shifted toward leveraging opportunities aimed at strengthening our health system for sustainable success. While civil society, the judiciary and donor funding were critical to enhancing ART access, we believe it is the establishment of decentralised, community-based chronic disease management systems (carefully and appropriately capacitating PHC services), and education aimed at enhancing ownership, autonomy and responsibility of patients and communities, that will be key in sustaining our AIDS response. These are just a few of the issues that still need to be addressed before we can say that we have turned the tide on AIDS.