Thembi Ngubane's AIDS audio diary provides a highly personal and intimate look into a year in the life of a young South African woman who is living with AIDS. She is one of about 5 million people — nearly 11 percent of the country's population — who are HIV-positive in South Africa. Young women aged 16-25 make up 75 percent of all new infections in South Africa.
Visit the Radio Diaries Web site to see Thembi Ngubane's scrapbook and photographs from her township and of her family. The site also offers an AIDS action toolkit, more resources on AIDS in South Africa and details on where you can hear Ngubane speak during her U.S. tour.
Ngubane has been receiving medical attention and anti-retroviral drugs to treat her AIDS. But countless others are not as lucky. Even as the South African government has improved programs to provide crucial drugs, accessibility still is patchy across the country, says Nathan Geffen, policy coordinator for the Treatment Action Campaign (TAC), an AIDS group in South Africa that advocates for access to life-saving medicines. He says insufficient political will and a lack of human resources in the health-care system are the two biggest obstacles to ensuring adequate care for people with HIV/AIDS.
Q: How many South Africans with HIV/AIDS are currently getting treatment? How many need it?
About 115,000 in the public sector and an additional 100,000 in the private sector, according to the Joint Civil Society Monitoring Forum as well as the Department of Health. About 500,000 people with AIDS are without treatment, estimates ASSA 2003 (Actuarial Society of South Africa).
Q: Thembi Ngubane has known she has been HIV-positive for about four years now. She lives in the township of Khayelitsha outside Cape Town; she says she is getting good medical care and is taking anti-retroviral drugs (ARVs). How typical is her experience among South Africans getting access to HIV/AIDS care?
That's a difficult question. Most people with AIDS, as the above statistic shows, are not getting treatment yet. Of those that are, some would be satisfied with service, others not. Public clinics in South Africa involve long queues, and overworked and tired nurses and doctors. A lot of people feel alienated from the system.
In Khayelitsha, Doctors Without Borders (Medecins Sans Frontieres) and TAC have worked very well with the provincial government. This has resulted in an excellent pilot anti-retroviral program that has now scaled up. The results of the program are excellent, and I suspect that patients are generally satisfied with the improved level of care they've received over the last few years.
Q: Do South Africans getting HIV/AIDS treatment pay for their care?
Not in the public sector — well, there is a nominal service charge, but from what I gather, few people pay it. In the private sector, people pay, usually via medical insurance; it is very expensive. We have an under-resourced public sector unable to meet demand and an inefficient, over-serviced expensive private sector. Fewer than 20 percent of South Africans have medical insurance. In the 2005 Human Sciences Research Council of South Africa (HSRC) Household Survey, 70 percent of respondents said the public sector is their usual source of medical care.
Q: TAC has been very critical about the government's slowness to provide ARVs. Has that improved? Is the government still holding back?
It is improving — slowly. It's also patchy. Some places, like Khayelitsha, are doing well. In many parts of the country, the rollout is pitiful, such as Limpopo and Mpumalanga provinces. These areas are less urban and less wealthy. But they also lack a democratic culture, giving rise to provincial governments prone to lack of delivery, corruption and pseudo-science.
Q: What role do non-governmental organizations like yours play in getting treatment to people with HIV/AIDS? Do some NGOs currently provide treatment? If so, to how many?
Our role has been to change government policy from not providing treatment to providing it. We have successfully accomplished this. Now our challenge is to make sure that policy is implemented properly.
A lot of NGOs provide treatment. In fact, a large percentage of public-sector treatment recipients are actually getting their treatment through NGO-government partnerships. Doctors Without Borders is a major service provider in Khayelitsha, for example.
But South Africa has the resources to treat everyone who needs it, and it is quite shameful that the government is relinquishing responsibility on such a large scale. The NGOs are doing a fine job stepping in where government has failed to show the political will to implement treatment. The challenge is to ensure that the government takes over from NGOs over the next few years.
Q: Ngubane received AZT to prevent HIV transmission to her baby, and her infant daughter is HIV-negative. What proportion of pregnant women in South Africa is HIV-positive? How many receive ARVs to prevent mother-to-child transmission of the virus? What needs to be done in this area?
Of pregnant women attending public antenatal clinics, 29.5 percent are HIV-positive. More than 90 percent of pregnant women use the public service. No one knows how many receive ARVs for prevention of mother-to-child transmission, because the government is failing to monitor the program.
Ngubane lives in the Western Cape so she received AZT and might also have received single-dose nevirapine during labor if she gave birth in the last couple of years. This substantially reduces the risk of transmission. Pregnant women living outside the Western Cape receive single-dose nevirapine only, which albeit effective, is much less effective than the AZT-plus-nevirapine regimen used in the Western Cape.
We are campaigning for the entire country to move over to at least the Western Cape regimen, if not better. For various historical reasons, the Western Cape provincial government and civil servants have demonstrated greater political will to make the program work and have occasionally acted independently. Also, TAC has been very strong in the Western Cape and, at times, worked very well with the government here. That's changing, incidentally. The current member of the provincial cabinet for health in the Western Cape is also indulging pseudo-scientists, like the vitamin peddler Matthias Rath.
Q: How many South African children are HIV-positive?
The HSRC survey gives an incomplete answer — it only looks at children over age 2. ASSA does estimate that about 60,000 to 70,000 babies are infected annually due to mother-to-child transmission and breast milk.
Q: Although she grows to be very open about her HIV status, Ngubane talks often about the stigma she feels. Is the stigma against AIDS decreasing in South Africa? How big an obstacle is it in preventing people from getting tested and treated?
I think the stigma is decreasing, primarily because of TAC and other advocacy groups' work and the availability of treatment. TAC developed and popularized the well-known "HIV-positive" T-shirt. We have run treatment literacy programs throughout the country. This has resulted in hundreds, perhaps thousands, of people coming out and declaring their HIV status.
Q: What are the current challenges in getting HIV/AIDS treatment to South Africans? What are your realistic hopes for the next five years?
If there was sufficient political will, we could achieve universal access in five years. We need the president, minister of health and government officials to go on radio and television every day and encourage people to get tested, treated and use condoms during sex. But this is not happening.
Another obstacle is lack of human resources in the health care system. The Ministry of Health is also doing too little to address this. The HIV Operational Plan committed to an additional 22,000 health workers by 2008, but even this is too little when taking into account the attrition of public-health workers. The government has just published a human resources in health care framework plan, but it, too, is inadequate.