FOLLY OR GRACE?
By Joan Shenton
Continuum Oct. 2000
Joan Shenton reports on the first meeting of the South African Presidential Panel of Inquiry into HIV/AIDS.
Perhaps I should have allowed the wise men to speak because I am a fool. Because indeed when eminent scientists said 'you have spoken out of turn' it was difficult not to think that indeed one was a fool. But I am no longer so sure about that, given that so many eminent people
responded to the invitation of a fool to come to this important meeting.
Words spoken by President Thabo Mbeki as he welcomed those who had accepted his invitation to join his Expert Panel of Inquiry into AIDS (Pretoria June 6th & 7th, 2000). In his quest for a re-examination of the orthodox position on AIDS in Africa and his concern about the toxicity of the AIDS drug AZT, Mbeki had been accused of giving legitimacy to discredited scientists. Today he chose to quote from Padraic H. Pearse's poem The Fool. In it the Irish poet ponders on whether to think the unthinkable, say the unsayable, and dream the undreamable is folly or grace.
Never having been to South Africa before, this was my second visit in one month. Only three weeks earlier, Huw Christie, editor of Continuum magazine and I had travelled to Johannesburg at the invitation of South African science journalist Anita Allen. Allen had been involved in the early planning of the panel and was now creating a network of journalists who could help highlight the issues surrounding Mbeki's initiative.
Thanks to Allens endeavours, and with the help the ANC's head of communications Smuts Ngonyama, we were granted an interview on film with the President in a private reception room in Pretoria's Union Buildings. The interview was broadcast on M-Net's flagship weekly current affairs programme Carte Blanche, to 44 countries across Africa.
Here we were again to cover the Expert Panel proceedings.
This second trip was made possible thanks to the generosity of Deane Collie, director of the US based International Coalition for Medical Justice, donations from Tom di Ferdinando and Michael Ellner at HEAL New York also from Professor Gordon Stewart and help from Dr Roberto Giraldo, President of the Group for the Scientific Reappraisal of AIDS.
It was the first time I had seen hardline representatives of the AIDS orthodoxy like Luc Montagnier, Helen Gayle of the Centres for Disease control, William Magkoba President of the South African Medical Research Council, sitting side by side in the audience with many of the scientists who have been attacking the virus AIDS hypothesis for over a decade - these included Peter Duesberg, Gordon Stewart, Harvey Bialy, David Rasnick, Roberto Giraldo, Joseph Sonnabend, Christian Fiala, Manu Kothari, Sam Mhlongo, Klaus Koehnlein and Etienne de Harven.
Political will had at last made it possible for the many question marks surrounding HIV as the cause of AIDS to be presented before members of the AIDS orthodoxy in a public forum. Over the past decade the general pattern has been for the orthodox scientists to avoid any direct confrontation and to dismiss the doubters as flat earthers.
So great had been the opposition to the panel both in South Africa and in the international press that Health Minister Manto Shabalala Msimang in her opening address felt compelled to praise the courage of those present "for having retained good and clear focus in spite of some of the criticism that the convening of this panel had provoked in some quarters."
Mbeki's opening speech was brief but he was keen to make one central point. Why was the pattern AIDS in Africa so different from AIDS in the USA and Europe? In 1985 the South African Medical Journal had reported that in Western countries the high risk groups for AIDS were homosexual and bisexual males, intravenous drug addicts and recipients of blood transfusions. Of these risk groups, said the article, South Africa only had the homosexual group in common, and HIV was therefore considered not to be endemic in South Africa. This was in 1985, but said the President, over the next six years something changed. A high rate of heterosexual transmission was reported. "Something changed very rapidly in a short period of time. Why? Being a fool I couldn't answer this... As scientists you must be able to respond."
This was the challenge. And here was the world's press, gathered at the Sheraton in Pretoria. The proceedings of the panel were not open to the press, but once the Reuters, CNN, BBC, and SABC journalists had got their sound bites, a handful of journalists stayed on, throughout the two days to gather information first hand when the panelists broke for coffee or lunch. Celia Farber had arrived from New York with her film crew, I was filming with Huw Christie for Meditel and gathering information for ICMJ, Huw was also gathering material for Continuum and the new reclaimthebrain website set up by Rob Drescher; Vivienne Vermaak a South African independent producer was there with her crew and journalists from several South Africa's dailies came and went.
The setting was beautiful. We waited for news from the panellists on the Sheraton Hotel terrace overlooking the huge expanse of trees, lawn and formal gardens leading up to the Union Buildings in the distance. The sun shone and there was a great feeling of hope, expectation and relief that at last things could be hammered out.
But it soon emerged that there wasn't going to be much hammering. The dissident scientists were in a minority and the orthodox scientists were doing their best to avoid answering any knotty questions.
The first person we caught on camera in his lunch break was Dr Roberto Giraldo, President of the Group for the Scientific Reappraisal of HIV/AIDS. "What I think is going to be very difficult is to come to some definitive agreement. The only thing that we can agree at the end is that we dont agree! We are starting to explain that the whole issue of HIV has to be reappraised from the very beginning and we are trying to explain to them that the whole of the research around HIV/AIDS is full of bias."
At lunch time, we spotted Professor Luc Montagnier who had just arrived. Huw Christie had been keen to make contact with him after publishing an interview with him conducted by Djamel Tahi in Continuum magazine, which had focused on questions surrounding viral isolation and the identification of HIV. First Christie asked Montagnier what he thought scientists could contribute to this panel? Was it not already clear what health policy surrounding AIDS should be? Montagnier replied,
"We know about the origin of HIV/AIDS. The causal agent is HIV but it's impossible for a country which has more than 10% HIV infected individuals to use the treatments that have been used in the Western world. It is too expensive. We have to propose - not some alternatives but some adaptation - to this kind of treatment. We also have to propose new ways of prevention, besides education information. Maybe we have to look for co-factors of transmission. So research is also involved. And research should be done not only in the North, it should also be done right here.
The interview moved on to the subject of viral isolation. Christie was keen to find out if Montagnier, when working on isolating HIV (then called LAV), had thought it necessary to start with a purified sample of virus. "No. Not at all", said Montagnier. "The virus can be reproduced by a single DNA molecule which contains all the information. The gene was extracted from molecular cloning of HIV DNA...then put into bacteria." Was the first genome taken from purified virus reiterated Christie? "It was not made from purified virus." replied Montagnier. "But it does not matter because once it is cloned it is pure".
Montagnier later confirmed that cross-reactivity between HIV and other proteins can occur. This is important in the African context, as proteins in blood samples from patients with diseases that are endemic in Africa like malaria, TB, Sleeping Sickness and leprosy (as well as from women who are pregnant) can cross-react with HIV, thus creating mistakenly identified HIV antibody positive cases.
The first day of the panel meeting ended with a reception given by the Deputy President Jacob Zuma. The press was allowed to attend and it was very interesting to meet the delegates in an informal setting. Some of the edged away nervously, recognising us as "dissident" journalists, but on the whole it was a jolly occasion. I was able to meet the panel's facilitator-in-chief, Dr Stephen Owen, from Canada. Professor of law and public policy at the University of Victoria, he was chosen because of his international reputation as an authority on conflict resolution and he seemed to be grasping the nettle with equanimity.
On the top terrace, in order to move to move away from the sounds of the ornamental waterfall and a Sunday morning jazz band below, we interviewed Anthony Brink - advocate, AIDS dissident and outspoken critic of the use of the so-called antiviral AIDS drug AZT. He is currently handling two cases of alleged damage from AZT.
"I have to be very careful to keep my ethical responsibilities and duties in sharp relief. My own hat is the hat of an AIDS activist, so to speak, agitating against this drug. On the other hand my other hat is this. I'm an advocate representing the interests of a client - a wronged plaintiff and my duty in this litigation is not to serve the public good as I perceive it, no matter how strong my conviction is. My duty is simply to get as much compensation as possible [for my client].
What was his position on AZT?
"AZT is an extremely poisonous substance without any countervailing therapeutic value to be claimed for it which might justify it - because chemotherapy is very poisonous but it's said that it's got some therapeutic value. But AZT cannot have the therapeutic value because the pharma-cokinetics just don't pan out. So what was it that had brought Brink all the way from Pietermaritzburg to support the presidential panel?
He said it was a pure accident of history that one September evening in 1996 he had come across the AIDS dissident debate. He then read around the subject voraciously and realised that no one seemed to be able to do anything about it. "I was seized by this irresistible moral and political imperative to act. To do something. I just couldn't turn away. It was like turning away from somebody drowning. Like walking away from the scene of a murder".
Huw then asked German oncologist Dr Klaus Koenlein to tell him what was being said on day two in the panel discussion. Dr Koehnlein told him that the discussion had been focusing on AZT and the damage that had been done to patients on high doses. It was President Mbeki's concern about the toxicity of AZT that had led to his invitation, said Koehnlein. As a doctor he had seen a lot of patients dying in the late eighties and early nineties who had been on the high doses of AZT. The bone marrow damage was too great and doctors had not been aware of the problems because they were expecting their patients to die, so were not very surprised when they did so.
Koehnlein continued, "AZT is a cell killing substance, and we wouldn't use it in oncology because we know about the bone marrow suppression so we would stop [the treatment] in order to give the bone marrow time for recovery. But in AIDS patients the situation is different. They get it as a lifelong treatment and nobody can survive this. So we reached consensus here yesterday that we killed people with AZT. It's just a question of how many we killed - five, fifty or five hundred thousand. That's an open question."
Koehlein believes that the drop in AIDS deaths from the mid nineties which, was attributed to the success of antiviral drug therapies, was actually the result of the reduced doses of AZT, from 1,500 mgs in the eighties to 700 mgs in the early nineties and then 300 mg as part of the more recent drug 'cocktails'.
As the Sunday wore on, faces began to look worn as well, and the initial sense of expectancy began to fade. Could there possibly be a satisfactory outcome to this panel of scientists from opposite ends of the spectrum? Would the minority of dissident scientists be dismissed as eccentric? Was it possible to hope for an outcome that would allow the President's initiative to conclude with grace?
Reporters and film crews gathered once again on the terrace, waiting to set up for the closing press conference.
The Health Minister, took the microphone saying, that this was "the first time a group of such eminent scientists' views had met in one room to deliberate, exchange views and assist in a very robust discussion." She mentioned "refining abilities to differ in a very constructive way" and how she was pleased at the panel's response "to continue searching for answers to some of the questions that have been raised". A task force was to be set up. She said the meeting had gone extremely well. "I certainly have learned a lot, but now I am convinced that there's a lot to do."
It was Dr Owen's turn. He took up the point about further work to be done, "While they [the panel members] still remain deeply divided on many aspects of the science" he said, "they committed themselves to continue working together to design (as the Minister has mentioned) through this task force a series of further research projects to better illuminate - to further illuminate - the differences and the broader challenge of dealing with HIV/AIDS.
Owen later said, "There remains the divergent points of view of the relationship, if any, of HIV to AIDS".
At this point in the proceedings I asked for confirmation of what Dr Koehnlein and others had told us about the panel discussions on AZT's toxicity. "Was consensus reached that AZT at doses at or above 1,200 mg a day has been responsible for the deaths of people who took it?"
There was a moment's silence and then the microphone was handed to Dr Khotso Mokhele, President of South Africa's National Research Foundation. He did not answer my question but explained that there was to be a Government Green Paper posing a list of questions and that the panel would be participating in a six week internet debate. He said that there are "a series of experiments that can be done, a series of experiments that ought no to be too costly, that ought not to take a long time, which may deal with the issue of what medical people call the aetiology of AIDS - what causes AIDS." Mokhele then announced that Helen Gayle of the US Centres for Disease Control, had offered Duesberg and Bialy funds to do research in South Africa in collaboration with William Magkoba, President of South Africa's Medical Research Council. These experiments were to "assist in the resolution of the linkage of HIV to AIDS."
It was highly significant that the panel was officially announcing a period of research into the cause of AIDS. This in the year 2000 when the international scientific establishment and the world's press have stated since 1983 that HIV is the cause of AIDS.
With the proceedings over and as evening fell, we were able to interview a selection of panel members one by one on the terrace.
Professor Sam Mhlongo South Africa's head of Family Medicine and Primary Care was pleased. He said, "I think for the first time - and I'm going to use "orthodox" in inverted commas and "dissident" in inverted commas - the two views have come together. All because President Mbeki created this chance which has never been created anywhere in the world. So from that point of view I think it was useful. So that the other side - the "orthodox" view could not name-call the so-called "dissidents" because that has been the tendency. It was not possible to do that in these four walls here. They had to listen to us and we listened to them. But we've been listening to them since 1982. So for the first time they had a chance to listen to us."
Mhlongo had made a presentation as a primary health care physician and had said there was a need to look at what is making black Africans so sick. "No one has convinced me that HIV is making them sick - Acquired Immune Deficiency - because of 70 different conditions that make them sick. We need to look at those and other environmental issues."
How did he feel now at the end of it all?
"I am as confident as I was when I left South Africa in 1963 that one day we will defeat apartheid. I feel AIDS - and I'm not talking about HIV - AIDS will be defeated in Africa just as much as serious infectious diseases were defeated in Europe."
Dr Andrew Herxheimer then slipped into Sam Mhlongo's seat whilst Mholngo reminded us that he had been Herxheimer's pharmacology student at London University!
Herxheimer is a world authority on drug toxicity. He has played a part in drawing up the WHO's essential drugs list for developing countries and he is a member of the Cochrane Foundation, an international organisation that provides systematic reviews of drug therapies.
He was pleased with the panel proceedings. "I think it's been an extraordinary two days, because it started with a real cacophony of views cutting across each other - people being quite emotional and cross with each other - and then on the second day there was really a big change.That is the people who hold the orthodox view about HIV and AIDS, they discussed in one group what their priorities were, and the group that does not feel at all sure about the cause of AIDS were in another group and they discussed what their priorities were. then the two groups came together and that turned out to be a common agenda, a common starting point for the internet discussion that's going on for the next six weeks.
So at that point everybody felt that their concerns had been aired - had been heard - by the other people. So I think it's a very successful meeting which is going to produce something very valuable. It has never been there before.
I asked Herxheimer his view about the use of AZT, and high dose AZT, in the early days of AIDS. "I think zidovudine [AZT] was never really evaluated properly and that its efficacy has never been proved, but it's toxicity certainly is important. And I think it has killed a lot of people. Especially at the high doses. I personally think it not worth using alone or in combination at all."
Etienne de Harven is well known for his concern about the isolation of HIV. His view is that the traditional procedures for virus isolation have not been adhered to. These involve centrifuging cellular particles that might include virus particles, banding them at 1.16 gms per ml and then taking an electronmicroscopy foto. This was never done initially, and when it was tried more recently all that was identified according to Dr de Harven was cellular debris.
How significant had he found the fact that a series of experiments were to be done to look into the aetiology of AIDS? "First it should have been done 17 years ago. But the fact that at a major conference like this one attended by about two thirds orthodox AIDS researchers and one third non orthodox - that these questions can be presented very calmly without causing any smoke or explosion is extremely significant in itself."
Roberto Giraldo, a specialist in infectious diseases and also head of the 500 strong Group for the Scientific Reappraisal of HIV/AIDS which publishes the journal Reappraising AIDS, looked happy at the end of it all. He had thought it was going to be very difficult but said, "I have to confess that the outcome was very nice. The people who believe that HIV is the cause of AIDS, they are starting to have a little bit of respect for us. How do I come to that conclusion? Because for instance it is going to be very difficult for them to ignore us for ever."
"I will never finish thanking President Thabo Mbeki and his government for having taken this decision and for having the courage to put all of this together for the first time in history. I know many people have been trying to explain these issues for years and years but we have been having all kinds of censorship in the scientific community in many countries. The media has been treating us very badly. So I think this opportunity is going to be very good for us, and I insist not only for us. It's going to be very good for the cause of the people. Because what we are fighting here is the people's cause."
It was Peter Duesberg's turn next. He was drinking a cup of coffee and munching on a biscuit. He thought it was a victory that the conference happened at all, "But I don't think we can count on much more at this point. But that's progress."
What did he think was the most significant step forward?
"That a head of state independent of the US Government and thus independent of the AIDS establishment is calling the virus-AIDS hypothesis into question. That makes us a little more respectable and a little less un-correct [author's emphasis] than we used to be. We could be trashed easily because we are completely dependent on the US Government and its long arm but now at least we have some independent support so we could not be totally ignored any longer - for the time being. They will find ways of getting us back where we were." What did Duesberg think of the way President Mbeki had been strongly criticised about his decision to hold the panel of inquiry? "Well he sounds as though he is a scientist. He is confident in his convictions. He is asking question. That's the hallmark of a good scientist - that he is asking questions and he is standing by his convictions. These two criteria make up a scientist. One alone is not enough. We have a lot of them standing by their convictions and quite a few asking questions but they don't do one nor the other."
Duesberg said he was going to map out some experiments together with William Magkoba (MRC); and Helene Gayle (CDC) and Harvey Bialy.
He gave an example, "Some of them are very easy. We are going to take some diagnosed AIDS patients - diagnosed by the Bangui definition which does not call for an HIV test and test whether they are positive. If some of them are negative, that is not very good for the virus hypothesis. And the Bangui definition doesn't even test them. It's very straightforward - very simple and very doable. And if they're negative I wouldn't treat them with AZT and I wouldn't test them for antibodies in the future and many other things can be deduced from that."
A staunch critic of the current AIDS orthodoxy, Professor Gordon Stewart, has long maintained that the estimates for the spread of AIDS, based on an erroneous infectious hypothesis, have been grossly inflated. His lifestyle/risk associated predictions for AIDS in the UK based on intravenous drug use, recreational drug use, fast track drug assisted sex, multiple sexually transmitted diseases and certain clinical risk groups like haemophiliacs, turned out to be spot on, but no one would publish his articles at the time.
Here in Pretoria Stewart felt there had been a "coming together for the first time" and that common ground had been found. "This could be terribly important for the humanitarian aspects of the problem. It doesn't necessarily solve some of the scientific and intellectual differences."
How did he feel about being invited here by President Mbeki and what did he think of the President's initiative? "First of all I'm honoured. He's been criticised by the hardliners here - criticised and disparaged I'm sorry to say by the mainline medical press in Britain, by some of the responsible newspapers or shall we say irresponsible newspapers now, because although they've got a big name they don't live up to it. And ignored by the various television channels." Stewart felt that television coverage had been "quite inadequate in relation to the scale of the enterprise and to the imaginative aspects of the initiative."
Christian Fiala is an Austrian doctor and writer ("Dirty Tricks: How the WHO gets its AIDS figures" New African, April 1998). What were his thoughts at the end of the panel meetings?
"Usually in the past it was supposed that developing countries were to learn from industrialised countries and I would say this is a very good example that in fact nowadays on many occasions it's the other way round. Europe and the United States can learn a lot from South Africa, from African people, in the way of discussing openly open questions in the field of science. So a discussion that couldn't have taken place over the last ten to fifteen years in Europe and the United States could take place in this country."
Fiala said that today perhaps for the first time there was official recognition that there are open questions about AIDS. He criticised science by majority reminding us that it was only very recently that the Pope "officially accepted that the world was round. And this is a very nice example of where you get if you accept science by majority."
I asked Fiala how he felt about the criticism of Mbeki. "President Mbeki is apparently a very strong personality who doesn't take a decision easily. From everything I have learned, it appears that he took quite some months to inform himself about the subject and then he decided that he should get even more information."
Fiala was pleased "That finally we are back to a pure scientific discussion of what should have taken place 15 years ago". He said it hadn't always been a very polite discussion, "There's a lot at stake. There's a lot of political powerplay still involved, but at least there is some discussion going on."
It was as the light was beginning to fade that Dr William Magkoba agreed to speak to us. He has been an outspoken critic of President Mbeki's continuing flirtation with dissident AIDS theories, as South Africa's Sunday Independent put it (18 March, 2000). The same article quotes Magkoba as saying, "It's a national scandal... Somebody here has to decide that the dissident group is wrong or right, and the only way you make this decision is if the dissidents have ever provided a theory or hypothesis that is testable. The answer is no."
But this evening Magkoba look relaxed and content. He said he felt excited and optimistic, "I think we have reached a decision that nobody expected us to reach. I think a lot of people were predicting gloom and doom and I think we have acquitted ourselves very well, responsibly, and have tried to face the challenges that were posed by the President in this matter."
Magkoba then mentioned his MRC collaborative studies idea put to Peter Duesberg and some of his team "in order to illuminate the dark shadows that surround this very same issue and I have to explain it to a lot people why I made this decision. I am confident that the theory that HIV causes AIDS is correct and I think if I am confident of that, I should have no fear to explore any other issues that challenge that theory. But I do hope that the experiments that we would be able to do would illuminate something that I can also be proud to learn from and something that also Peter Duesberg can learn from. And I think it's by learning from each other, by collaborative work, rather than by ignoring or silencing each other that we are likely to bring a broader perspective around this issue."
And then the light faded and everyone went off to have dinner.
But whirring in my mind were the words President Mbeki had spoken to me a month earlier in his interview. Words that explained his motivation in convening the panel and which may lead to the real truth about AIDS emerging from South Africa one day soon.
"We have to respond correctly, and urgently, and you cant say respond correctly by closing your eyes and ears to any point of view, any scientific evidence that is produced. A matter that is seems to be very clear, in terms of the alternative view that is being presented, is what do you expect to happen in Africa with regard to immune systems, where people are poor, subjected to repeated infection, and all of that? Surely you would expect these immune systems would collapse, and Ive no doubt that that is happening. But then to attribute such immune deficiency to a virus produces a specific response, and what we are discussing here as the South African government is that it seems incorrect to respond to this AIDS challenge, within a narrow band. If we only said theres a virus - safe sex, use a condom, end of story, we wont stop the spread of AIDS in this country."