HIV AND AIDS
Focus March 2000
Health Department watchers on the look-out for any hints of change in government policy on AIDS and its treatment have noted that Dr Ian Roberts popped up at the Conference on Retroviruses and Opportunistic Infections in San Francisco in February. Roberts is a special adviser in the department, and his socialist perspective was a crucial influence on former health minister Dr Nkosana Zuma. While in America, Roberts gave an interview to Emily Bass, a specialist writer on HIV/AIDS, for the magazine, Salon. The interview is not just significant because it gives insight into Roberts’ thinking, but also because it indicates the intense interest that international specialists are taking in South African policy — especially on the issue of mother to child transmission of the disease. Refocus reprints some of the key passages below. (The full text is available on www.salon.com)
Bass: Vaccines are a huge priority right now. Where do you see progress coming from in this area?
Roberts: It has to be global effort. All relevant people need to come together one way or another and lose protectionism and desire to leverage themselves and just focus on what we need. It’s not a question of do we have the budget. It’s that if we don’t solve it, the ramifications are going to be enormous. In a sense, it’s a shame we don’t have complete, total global dictatorship for a year where one individual says, "Either you do it or you die."
Bass: Do you see this global involvement happening?
Roberts: On the flight here, I flew next to someone from Shell — it could have been anybody, from any company. I always ask people the same question, partly because it gives them a level of discomfort: "What are you doing about AIDS? What is your company doing about AIDS?" He said, "Well it’s not Shell’s problem." If I had a company, or was managing director of Shell now, I would be very focused on what I could do. Not only because my market place is going to change tremendously, but also because there’s a responsibility when a continent is facing what we are. Three or four months ago, I didn’t have the same sense of urgency I have now, so I can understand if Shell doesn’t have that urgency. Still, it seems surprising to me that it’s not there.
Bass: So, something’s changed for you recently. Where has your sense of urgency come from?
Roberts:It’s hard to say exactly. One thing may be that there are very few people that I’m close to, or that I like, and one of them died recently of non-Hodgkin’s lymphoma [an AIDS-related illness]. He was a fashion designer and worked for Missoni with my wife.
Bass: What about something like nevirapine or AZT for stopping pregnant women from passing the virus on to their babies? Last year a Ugandan study found that a $4, two-pill regimen dramatically reduced the levels of transmission. Will you move forward with that?
Roberts: Often, the easiest answer is for policy advisors to just roll out a [new policy]. So you can say, "We’ll roll out nevirapine," and then AIDS activists can congratulate themselves and say, "We pushed the government into this"; researchers can congratulate themselves and say, "Wonderful initiative — we did all the work." Government can stand up and say, "We’re really doing something in AIDS now" — and at two years old, the kiddies are still dying, and everyone’s lost hope. That’s not saying we shouldn’t intervene. Once we know the results [of South African trials of this regimen], we’ll go back to the minister for her policy decision, which may be that we need more clinical trials, or it may be that we’ll roll out a new policy.
Bass: That almost seems to be in conflict with the urgency of what’s happeningin terms of infections.
Roberts: What I want to avoid is self-perpetuating publication of papers. Science can either produce more publications or it can impact on the social reality of people infected. You have to have some solid evidence about what you’re doing. The danger of rolling out public health policies based on anecdotal evidence is that they’re very difficult to reverse. I think we can be quite loose and make best guesses, but good political decisions are underwritten by good science.
Bass: Still, at this conference, some researchers have been surprised by your hesitation to recommend ideas, like the $4, two-pill nevirapine regimen, that might work, that have been proven to work in other African countries.
Roberts: They’re entitled to their opinion. We’re waiting for the SAINT [South African Intrapartum Nevirapine Trial] study, which will provide important information specific to South Africa. In addition, we’re looking at the total picture — trying to understand reducing transmission in the South African context. I don’t dispute that nevirapine lowers transmission, but we have to deal with the problem from a holistic perspective. Treatment might be important, it might not be. Perhaps it’s more important to improve the child’s quality of life [such as clean water, food, shelter].
***
Pressure on the government to make AZT or nevirapine available to pregnant women with HIV/AIDS is bound to mount. The World Conference on AIDS in Durban in July will turn the spotlight on the South African stance and could well be the scene of demonstrations by local activist groups, as well as critical attack by experts attending the conference. Secondly, the HIV/AIDS Treatment Action Campaign (TAC) plans to launch legal action very soon.
"I believe there is a very strong legal case under the Constitution for giving AZT to pregnant women, both as regards the rights of children to health care and the reproductive rights of women," says Mark Heywood of the Wits AIDS Law Project, which is co-operating with TAC. Although constitutionally the right to health care can be limited in certain circumstances on grounds of cost, Heywood does not think this argument would apply: "AZT can be shown to be cost effective and affordable," he says. "The government knows it’s on weak ground when it comes to AZT for pregnant women."
In fact the AIDS Law Project was about to initiate legal action last year and only decided to hold back following a meeting with health minister Dr Manto Tshabalala-Msimang in which she gave them what turned out to be "false reassurance". The government changed its ground after President Thabo Mbeki claimed that a large body of scientific literature showed that AZT — a medication on the World Health Organisation’s essential drug list — was potentially toxic and that it would be irresponsible to prescribe it for HIV patients until its safety was established.
As Dr Ian Roberts, special adviser at the department of health, said in a recent interview: "Good political decisions are underwritten by good science." But Mbeki’s information has been derived from individuals who, although undoubtedly sincere, are not members of the mainstream scientific community. They include Charles Geshekter, a lecturer in African history at California State University, and Anthony Brink, a Pietermaritzburg lawyer, both of whom contributed opinion page articles to a debate on AIDS in the Citizen. Brink is believed to have referred the president to a South African website promoting the discredited theories of Professor Peter Duesberg, the Californian molecular biologist — that HIV does not cause AIDS and that it is the drug AZT that destroys the immune system.
The puzzle remains why the president and his health minister should be guided by them rather than expert bodies such as the Medicines Control Council and the Medical Research Council. One answer lies in the specifically African perspective on the disease that they offer. In his article, "The Epidemic of African AIDS Hysteria" (Citizen, September 16, 1998), Geshekter argues that Africans have long suffered the symptoms of AIDS — weight loss, chronic diarrhoea, fever and persistent coughs — but that these symptoms are due to the environmental risks caused by poverty not to a sexually transmitted virus. Researchers have wrongly redefined these symptoms as HIV/AIDS and then assumed that, as in the West, the epidemic of immune deficiency was driven primarily by sexual promiscuity. As a result, he says, health professionals have fixated on condom distribution or evangelistic demands for behaviour modification instead of concentrating on improving water quality, sanitation and diet.
Geshekter also suggests a more sinister agenda: "Having millions of Africans threatened by AIDS makes it politically expedient to use the continent for vaccine trials or for distribution of severely toxic drugs like AZT that radically affects the liver and kidneys, causes muscular diseases and destroys red blood cells."
For Mbeki, a committed Africanist, who is trying to keep public spending under control in a country facing the onslaught of AIDS, there must be multiple attractions in this kind of "theory". It sets Africa apart from the West, downplays the weak points of sexual behaviour and exploitation of women, highlights poverty — which no one can deny is the essential social context of the epidemic — and thus increases moral leverage on the developed world for debt relief. And finally it demonises Western researchers, drug companies and, of course, AZT.
***
What is your family background?
I grew up in a small Greek community in Krugersdorp. Our family circumstances were modest: my father kept the local tea-room and later was a bookie’s clerk. He never knew his own age. I joined the Congress of Democrats as a medical student at Wits. Once I had graduated the Special Branch intervened successively to have me dismissed from jobs at the Queen Victoria clinic in Johannesburg, Baragwanath hospital and King Edward VII hospital in Durban. I ended up at McCord Zulu Hospital, a missionary hospital where the Special Branch’s writ did not run. McCord was unusual because it paid black and white doctors the same when others paid whites more. I remember once the minister of health being asked why white doctors should be paid more for exactly the same work, and the reply was that whites had a higher standard of living to maintain! The logic of apartheid.
You are in trouble again even in the new South Africa. A disciplinary tribunal recently found you guilty of bringing former health minister Dr Nkosana Zuma into disrepute because you said she should be charged with manslaughter for refusing to provide the drug AZT to pregnant women with HIV/AIDS. You have been fined R1,000 and warned not to behave unprofessionally again. Meanwhile, the Human Rights Commission has taken up the complaint you lodged with them last November that the government’s policy on this issue is a violation of human rights. Why do you feel so strongly about it?
It stems from my daily experience since I returned to South Africa in 1990, working first in Umtata, where I ran 11 rural clinics and taught at Unitra medical school, and now as the head of the public health department at Cecilia Makiwane hospital in Mdantsane near East London. Already many of the children’s wards in the province’s hospitals are filling up with AIDS cases. One paediatrician I know says he can only admit an infected child once. If the patient returns with a new infection, as they invariably do, all he can do is send the child home with some medication for the mother to administer. There just isn’t space for all them all. Most will not survive beyond the age of seven — and that is the heart of the matter.
I first saw research results which showed how cost-effective AZT would be in reducing mother-child transmission of HIV in October 1998 and wrote many letters to the press and made statements as the PAC’s health spokesman advocating its use. But despite the fact that the lives of some 30,000 children a year could be saved if their mothers had been prescribed AZT in the last weeks of pregnancy, Zuma simply said it was too expensive. Even when Glaxo, the manufacturer of the drug — which had already reduced the price by more than 70 per cent of the world average — offered to go even lower, she didn’t take it up.
President Mbeki switched the argument away from cost when he told the National Council of Provinces in October that AZT might be toxic and a danger to health. He has sowed doubts. Shouldn’t it be tested further?
The president went against the overwhelming weight of scientific opinion when he said that. AZT is not a new drug; it has been around for about 30 years and was accepted by our Medicines Control Council more than ten years ago. It is available in all public hospitals in case any nurse or doctor scratches themselves with a syringe from an HIV positive patient. AZT is not a cure, but it does slow down the rate at which the virus replicates itself. Like all powerful drugs it can have unpleasant side effects, but these occur almost entirely among those who are taking the drug for more than a few months. However, it is not a drug that you should just prescribe and leave the patients to get on with it. As with chemotherapy for cancer they must be carefully monitored so that if side effects do appear they can be countered. This is why I want to see the drug administered within a well-organised national screening programme which would test all pregnant women for HIV/AIDS and give them counselling — we could train thousands of unemployed matriculants to be counsellors. Those who tested positive would be offered AZT before the birth, and formula feed afterwards, if they have access to clean water, since breast-feeding can also transmit the virus to some extent. Rural women need special attention in this regard.
This would be more than a treatment programme — it would be a huge public education exercise in AIDS awareness that could reach a million women a year. The saying "When you educate a woman you educate the nation", is true. The total cost of such a project I estimate would be about R90 million a year, the drug itself accounting for about one-third of that.
When Dr Manto Tshabalala-Msimang took over as health minister in June, it looked as though government policy might change. What happened?
She really gave that impression when she said she wanted to revisit the whole policy on AZT. She went to Uganda and came back very enthusiastic about the new anti-retroviral drug nevirapine, which is much cheaper than AZT. But since then she has just confirmed Zuma’s policy. I think the president’s remarks to the National Council of Provinces took her completely by surprise but, of course, she has to support him. She asked the MCC to look again at the risks and benefits of AZT and when it concluded in two further reports that the benefits outweighed the risks, she rejected the reports as unsatisfactory. Apparently she is now studying more reports, but has made none of them public.
Following my complaint, the Human Rights Commission wrote to Tshabalala-Msimang asking her to explain how she was defending the rights of HIV positive women. After a delay, the health department said it had not received the HRC’s faxes, though the commission says it has proof they were sent. She eventually sent a 16-page reply. In it she now claims that AZT is a potentially toxic drug. The HRC has asked her to enlarge on her response.
I have suggested that one rationale for refusing women AZT is that the government doesn’t know what to do with all the AIDS orphans. If it refuses anti-retroviral drugs to pregnant women then many of those children will die before they are seven and the country won’t have quite so many orphans. Tshabalala-Msimang said these remarks were "insulting and defamatory". In fact I think that, as Zuma always said, cost is the real reason behind the refusal. It does not fit in with its Gear policy, which demands an immediate reduction in social expenditure. The government is frightened that if it starts to provide anti-retroviral drugs to pregnant women it won’t be long before women who have raped will demand them, and then the four million or so people who are HIV positive but who cannot afford the drugs. There’s no way the government’s economic policy can accommodate such expenditure.
Besides the cost, Zuma also argued that the policy would be wasteful because only half of all HIV positive mothers pass the virus on to their child. Thus you would be exposing the other half to a potentially dangerous drug quite unnecessarily.
We do this kind of thing in public health medicine all the time. All mass vaccination programmes are undertaken in the knowledge that only a proportion of the babies vaccinated would have got measles or polio. And the vaccination itself carries a risk. Recently two babies died after being given the whooping cough vaccine. It is a matter of weighing up risks and benefits and the public should always be fully informed about them.
Could nevirapine provide the government with a way out of its dilemma?
Nevirapine is one-tenth of the price of AZT and pregnant women would have to take only one dose. Compliance is therefore much easier than for AZT, which has to be taken twice a day for about four weeks. However, a large comparative trial in Uganda has shown that its toxicity is similar to that of AZT, so logically the president should apply the same "danger to health" arguments to nevirapine. The World AIDS Congress is taking place in Durban in July and I predict that, before it starts, the government will announce there that it is making nevirapine available, but strictly limited to pregnant women who are HIV positive. If they don’t they are in serious danger of being attacked and embarrassed at that conference.
One thing is clear — this epidemic is still in the making and none of the government’s measures so far have done anything to curb it. It calls it a "fight" but it’s a war. The minister herself has admitted that six out every ten admissions to hospital are AIDS-related, but so far she too has failed to declare war on the disease. I remember how whites used not to bother about diseases such as TB which affected the black poor, until they finally realised that they could affect them as well. Sometimes I think the ANC elite feels just the same about AIDS and it is all part of a massive sell-out of the interests of the black poor.
What about the new National AIDS Council?
It’s a completely useless body. None of the important AIDS researchers or specialists are represented on it, but it has 13 government ministers and almost no budget except an expense account. There will be committees at provincial level and task teams. But is only an advisory body and not a war council with the resources and power to act. The day after it was launched I set up the Shadow National AIDS Council (SNAC). I shall be sending out regular e-mail bulletins to academics, research workers and activists in the field about NAC’s "progress". I’m also planning a website.
Considering what some public sector employees get away, with the provincial health department was quick to prosecute you.
That is true. But the ANC hates embarrassment of any kind. The former MEC for health here in the Eastern Cape, Trudy Thomas, was replaced after the election last year because she had made an honest speech describing the dire state of the provincial health service. The new MEC for health, Dr Bevan Goqwana, has loyally supported the government on AZT. He has also attacked me as one of the "foreign doctors recruited by homeland governments", though in fact I am a South African citizen who never worked for a homeland government. It was just a way of trying to say I was a white reactionary. But privately many ANC supporters are sympathetic to my cause. I have been amazed by the number of e-mails I have received from people taking my side on this issue.
Are you appealing against the verdict?
Definitely. Senior counsel Gilbert Marcus has offered to take up my appeal against the disciplinary tribunal’s verdict and the Freedom of Expression Institute is assisting financially. When I made my remarks, which were reported in the Daily Dispatch on April 15, about taking Zuma to court and charging her with negligence and more, I was inspired by the case then going on in France. Three ministers, including the former minister of health Edmond Herve, were prosecuted for manslaughter for allowing AIDS-tainted blood to be used in transfusions in 1985 although a new blood screening test was available. As a result dozens of haemophiliacs died of AIDS-related diseases. Herve was eventually found guilty of two cases of negligence. I was actually speaking during the election campaign as the PAC’s secretary of health and welfare, and my appeal will establish how far a public servant can speak out. Do the bosses have the right to say you are a public servant 24-hours a day and restrict you totally? All I wanted to do was to exercise my rights as a citizen to bring a suit in court and then to allow the judge to decide. Secondly, we want to establish that I am right to pursue AZT treatment for pregnant women and that toxicity is not a reason to deny the treatment.
What changes have you seen in community medicine since your return to South Africa?
I’m not trying to make a political point when I say that primary health care in the Eastern Cape has largely got worse. I’ve seen a static service where attrition has set in. The government is proud of the number of new clinics it has built, but building is the easy part. They don’t say how many have access to ambulances, how many have had their phone, electricity and water cut off or have seen their drugs run out. Maintenance has been completely suspended at my clinics.
Clinics are a basic facility where patients are seen by nurses and only very seldom by doctors. They provide ante-natal care and family planning, immunisation programmes, look after the chronic sick, etc. Their quality has not improved in line with what the government wanted and community participation has not developed. We used to have a clinic committee meeting for community representatives at the hospital every month. It was very successful. They could tell us what was wrong with the clinics and we would hear their complaints. But the province stopped paying their taxi fares and so the representatives stopped coming.
I have just ordered one hundred 25kg bags of soup powder at my own expense — R169 a bag — to give to the TB patients at one of my clinics. It will be enough for 20 patients for a month. The soup is very nutritious and since the health department slashed their nutritional supplements we know they aren’t getting enough. One nurse made a very big fuss about this. It won’t be difficult to distribute because the patients will be coming to the clinic regularly anyway. I’ll carry on with the scheme as long as my overdraft can bear it.
The number of nurses is declining, as we cannot replace those who leave and their morale is very low, especially since their rural allowances were taken away. They had to give up their right to strike without getting anything in return, and now they have even more responsibility. Community health workers are also disappearing, leaving the clinics with no outreach. The gap between the private and public health services has grown wider than ever. I don’t believe in abolishing private medicine, it often sets standards, but I am totally in favour of strengthening the public sector.
What is your political history and why do you remain in such a small party with a history of splits?
I was one of those arrested in the mass raids of July 1964 that led up to the Braam Fischer trial. I was charged with membership of the Communist Party and furthering the aims of the SACP and the ANC. I got two years jail for that and when I came out in 1966 I was banned and couldn’t get a job. I was also refused permission to study public health at Wits. I left for England on an exit permit in October 1968, two months after the Soviet Union had invaded Czechoslovakia. My comrades in London, such as the Bernsteins and Sylvia Neame, were busy justifying this, saying that a democratic Czechoslovakia would be a dagger pointed at the heart of the Soviet Union. I was disgusted and soon left the party. After that, I mixed with other ANC dissidents, met black consciousness people, was always very pro-China, and was even a member of the Green Party for a while.
But it was only when I met up with the PAC representatives in Nottingham that I found a political home and joined them in 1982. Many of the ANC exiles I met weren’t badly off, they could send their kids to school in Cuba or East Germany, they got a lot of help. The PAC was quite different; they were scratching around to stay alive. I am a socialist and Pan Africanist and aim to establish a socialist and democratic united states of Africa. Robert Sobukwe, the party’s founder, said that "there is only one race to which we all belong and that is the Human Race".
It’s true that last year’s election result was no better than 1994 even though we’d had five years to prepare. There is still no clarity in the leadership about how to create a modern political party. At our congress in April, I expect to see changes emerging. We need to be a radical alternative to the ANC — a party that will attack Gear, globalisation and privatisation. The PAC’s splits have been very public, but even big parties can have the same problem — keep your eye on the ANC over the next few years. The ANC alliance is showing cracks, with Cosatu speaking out and the SACP rank-and-file unhappy at their mealy-mouthed leaders. Their top guys know they depend on the ANC for their positions and they want to stay on the gravy train. I’d rather be in a small party than sipping the people’s gravy.
Do you ever regret returning to South Africa?
I have the occasional twinge of regret, but overall I didn’t enjoy living in England that much. I belong in Africa and have become an African. I am due to retire next year. I had hoped to retire earlier as I have diabetes, but while the AZT case is going on I can’t because the government might regard it as a victory. The campaign I’ve launched on this question has attracted enormous support from all quarters and I really can’t imagine backing down now. It’s like the struggle against apartheid. I was found guilty and jailed for fighting against that, but I couldn’t imagine stopping the struggle against apartheid because it was a just cause. I feel exactly the same about AIDS. My cause is just and I have no option but to continue.
Focus is the quarterly magazine of the The Helen Suzman Foundation.