Mail & Guardian (Johannesburg) - August 23, 2002
Niki Moore

Researchers and doctors working with HIV-positive patients are concerned issues regarding the spread of the disease are being overshadowed by the controversy around the drug.

"The greatest cost and effort does not concern the provision of anti-retrovirals," says Dr Andrew Grant, medical superintendent of Bethesda hospital in Ubombo.

"The doctors here have already been prescribing the drugs out of their own pockets -- a course of treatment costs about R8 per patient and it's an easy drug to prescribe. The greatest cost is the counselling and testing. There is a huge psychological barrier to overcome before people will accept treatment."

Epidemiologist Dr Tanya Welz of the Africa Centre for Health and Population Research in Hlabisa -- the region with the highest incidence of HIV -- agrees that providing nevirapine and other anti-retrovirals is a small issue in the battle against Aids.

"There seems to be an assumption that the moment the government starts issuing nevirapine, women will come charging into clinics for their treatment and the health system won't be able to cope with the demand.

"In fact, the opposite is the case. Our biggest challenge here is getting women to ask for treatment. So much so that the most urgent debate among researchers here is how to make anti-retroviral treatment attractive enough so that people will take it."

Most doctors in rural hospitals in Zululand have been prescribing nevirapine for months. Clinic nurses have been trained as counsellors. Hospitals, clinics and mobile clinics have been offering treatment: the catch is getting people to own up to having Aids.

The results of a worldwide study, presented at the recent Barcelona conference on HIV/Aids, pinpoints the problem. Study groups diminished so much over time that the study was inconclusive. People were dropping out at each step of the process.

"We would get a large group who would agree to pre-test counselling," says Welz.

"After counselling, fewer people would turn up for testing. The greatest drop-out rate would be after testing -- people who discovered they were HIV-positive just didn't want to go further. They didn't want to disclose their status. It was almost as if they gave up hope. When it came to people who were ready to do the course of anti-retrovirals, the remaining number was just a fraction of the people who had started the study.

"Our major problem is trying to get statistics. We are beginning to think our studies are not representative. We can only test pregnant women who come for antenatal treatment and then extrapolate this over the general population -- but as a rule HIV decreases people's fertility so there is a large chance that HIV-positive women are not falling pregnant.

"We know almost nothing about HIV in men -- men simply do not come to clinics.

So usually the first inkling we get that a man has HIV or Aids is when he comes to hospital with an opportunistic infection."

"Eighty percent of the people who come into hospital with TB are HIV-positive," says Grant. "People with TB are more susceptible to HIV and vice-versa. But people will not accept that they have anything more than TB."

The Aids denial problem is huge and multifaceted. "There is a hang-over from the government's declaration that nevirapine is toxic," says Welz. "People don't trust this drug. Then they fear being discriminated against if they declare their status.

"We are looking at two approaches of treatment. We call one the opting-in approach and the other the opting-out approach," says Welz.

"In the opting-in approach, people are told through posters or counselling or just general advice that the treatment is available and all they need to do is ask."

Welz says this simply does not work. "Women in rural areas are not used to making decisions on their own, and often are intimidated by the idea of going up to a stranger and asking for testing or treatment.

"In the opting-out approach, testing, counselling and treatment is given as a matter of course, with the caution beforehand that the person can stop or withdraw at any time that they like."

Welz says this has a higher success rate as women find that their peers are doing the same thing and the decision is taken out of their hands. The problem though is that "many women give birth at home, and they either forget to take the pill or are too embarrassed to tell the midwife that they need to take it".

"Another theory," says Welz, "is just to hand out the anti-retrovirals without even knowing the status of the person, almost like a flu-jab. This, however, creates problems after the baby is born because we don't know whether we should then counsel the family or whether we should recommend breast-feeding or formula. The feeding of the baby is a huge issue for new mothers -- formula is expensive and might be difficult to obtain, yet breast-feeding carries the danger of transmission. There is simply no easy answer."

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