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Denial Defeated, Hope Reigns

August 2000

The 13th International Conference on AIDS, held in Durban, South Africa, proved to be both the most important and the most unusual meeting since the earliest days of AIDS. This is the first time that the huge international meeting has been held in the heart of the global epidemic. More than any previous conference, this one was forced, by pure proximity, to confront the most rapidly escalating human suffering associated with the disease. It riveted attention on the prohibitively high cost of drugs and the need to build the medical and social infrastructure required to support the complex treatment of HIV. Similarly, it provided an important watershed for many African countries, a time to fully acknowledge the threat they face, to ponder the cost of government inaction and the need for clear thinking about solutions.

Unfortunately, it was also a conference afflicted by great distraction, mostly from the U.S. and European HIV/AIDS denialist movement. The denialists believe that AIDS doesn't exist, even in Africa, or that even if it does, it has nothing to do with HIV. For the first time, such views became a major part of the media coverage of the conference. There could not be a worse moment for such intellectual dishonesty, pseudo-science and arrogance to rear its head. Yet there is still hope that the sheer presence of the conference itself and the attending media attention, whatever its focus, was enough to put the issue of AIDS in developing nations in the spotlight where it belongs. By the end of the conference, attention was shifting back to the issues that really matter, such as prevention, unfair pharmaceutical pricing and the lack of medical infrastructure needed to deliver basic healthcare and treatment for HIV.


What Happened?

Several years ago, the idea of holding the 13th International Conference on AIDS in South Africa seemed like a great idea. It made perfect sense to move the conference to one of the great epicenters of the epidemic. Once that decision was made, the focus on South Africa, and Durban in particular, became fairly obvious. It was not only the right country but also the right city, one of few in the developing world that had the capacity for managing such an event. Moreover, as the wealthiest country facing AIDS in sub-Saharan Africa, there was reason to hope that bringing the conference to South Africa would be preceded by serious prevention and treatment programs that might then serve as examples to the rest of Africa and Asia.

But the outlook for the conference was confounded when South African President Thabo Mbeki stumbled into the camp of the AIDS denialists while out cruising the Internet. President Mbeki's intrigue with denialist theories caused many scientists in Africa and throughout the world to wring their hands in despair and even cancel plans to attend the meeting. Though it is clear that Mbeki made a big mistake in giving a platform to the denialists on a pre-conference panel he created, it is equally clear that he raised some critically important questions that must be addressed if Africa is ever going to be able to cope with AIDS. Unfortunately, too much attention has been focused on his involvement with discredited fringe theories. Lost in the debate are the true challenges he has raised about how to bring solutions to his country.

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A Little Background

Well-confirmed estimates say that 5,000 HIV-infected babies are born each month in South Africa. Among adults, sampling surveys suggest that upwards of 1,700 people are infected per day and that somewhere between one in five and one in ten are already HIV-positive. AIDS denialists complain that the numbers of HIV-positive people are merely estimates and not proven. But short of forced, mandatory testing of the entire population, such numbers are always estimates, based on well-established sampling methods. There is simply no other way to do it.

Efforts to stop the spread of mother-to-child transmission have been hampered by a mix of high drug prices and confusion about the value of the drugs, stirred up by the AIDS denialists. They raised suspicions about the value of using drugs like AZT by inappropriately applying concerns about toxicity in long-term use to the short-term application of treatment around the time of birth. There is still no government plan in South Africa to intervene in mother-to-child transmission. Instead, the government claims it is awaiting the outcome of additional studies and building the necessary infrastructure. Independent efforts by the Nobel prize-winning group Doctors Without Borders, however, have shown that it is possible to do the job even with the existing infrastructure.

Still, no country in Africa is better poised than South Africa to make a dent against AIDS, even if some other African nations have already initiated more and better programs. Preventive treatment against mother-to-child transmission is financially feasible and the country has already invested in a wide network of clinics that could help administer the therapy in the context of pre-natal care. It is frustrating that obstacles to preventing mother-to-child HIV transmission include politics and misinformation.

More challenging, perhaps, are the problems of prevention and delivery of treatment to people who are already infected. Social conditions and deeply engrained cultural practices regarding sex and the role of women render typical Western-style prevention programs all but impotent. Certainly, condoms can be useful, but only if cultural norms support their use. Rape and other abuses of women by men play a clear role in HIV transmission and must be confronted head on. But it will take time to achieve meaningful change and it will come only as a result of an enduring national debate and strong leadership. It is the lack of movement on these fronts that frustrates many AIDS workers and activists in South Africa and much of the African continent.

It is far too easy to focus on drug treatment as the solution to the problem. And President Mbeki is correct in pointing out that Western treatment programs cannot be simply transplanted to the South African environment. Even with greatly discounted drug costs, treatment for the infected population could easily bankrupt even this, the wealthiest of the sub-Saharan African nations. The raw cost of drugs, moreover, is but a single part of the picture, as today's AIDS therapies cannot be used efficiently without large investments in diagnostic tests and services as well as accompanying medical care. (See the article "Drug Pricing, AIDS and the Developing Nations" in this issue of PI Perspective for more information on this topic.)

Confounding these issues is the fact that AIDS is not the only medical problem demanding attention in South Africa. Many other serious illnesses compete for government attention, along with poverty and malnutrition. All are affected by the high costs of potential solutions.

With this background, no one envies the difficult choices that must be made by the government of South Africa. There are no simple or readily available solutions. The last thing President Mbeki needed was confounding input from discredited Western scientists who themselves have little or no experience in dealing with the AIDS crisis. Yet that is exactly what he asked for and what he got.


AIDS Denialists to the Rescue

The U.S.- and European-based denialist movement is mostly made up of scientists who are either long known as eccentrics in their fields, retired or who have a known affinity for contrary opinions. Few if any of them have actually played even the smallest role in AIDS research or care programs, and almost none have treated people with the disease. Most are not physicians nor are they trained in the disciplines needed to determine the cause of a disease. Their arguments have been presented and rejected over and over again in the scientific community for the last decade and a half. As a group, the denialists simply refuse to accept any data that contradicts their own opinions and beliefs, yet they provide no original evidence or data of their own. These factors, while well-known in the scientific community, are not immediately apparent to an innocent surfer of the Internet, nor are audiences who lack formal scientific training likely to see the giant holes in their arguments.

Prior to the Durban conference, President Mbeki learned of the denialist views in a sleepless night while searching the Internet for solutions. He thought he had come upon a group of self-described noble "dissidents" who claimed to be unfairly isolated and rejected by the scientific mainstream. Their own writings fail to mention how many times the scientific peer review process has already evaluated, assessed and rejected their arguments that HIV doesn't cause AIDS, that HIV is harmless or doesn't exist, and that there really is no crisis in Africa. To Mbeki, though, "dissident" is an honored political term that he understandably relates to. He had no way of knowing the history of the denialist movement or the characters who populate its web pages, no way of knowing if they were genuine scientific experts, people pursuing a lost cause or just the latest conspiracy theorists.

Unfortunately, Mbeki's personal experience as a political dissident made him an easy target for the denialist yarn. Soon, he was inviting California denialists David Rasnick and Charles Geschectner to South Africa for consultation. Peter Duesberg was asked to send his book and data. Once the word got out, otherwise unknown writers and fringe activists working the denialist circuit were both singing Mbeki's praises and burying him in their papers, documents and opinions. No similar effort was made to seek input from genuine HIV experts, at least at first.

The scientific community in Africa and internationally were aghast, realizing that Mbeki had inadvertently opened the hen house to the foxes. Instead of getting advice from people with genuine expertise in dealing with AIDS, he was soon being told that AIDS didn't exist, that the disease wasn't infectious, that it was just a manifestation of poverty and there was nothing he need do about it. People who didn't want to see their western governments channeling funds and services to Africa at taxpayer expense were now broadcasting their message through the head of an African state. Mbeki wrote a strange and strongly worded letter to U.S. President Clinton suggesting that those who didn't want him to listen to the denialists were somehow similar to the oppressors of South African blacks in the days of Apartheid. It must have come as a great surprise to Mbeki, however, when the main voice supporting his odd turn of direction was in fact the South African Böerstadt party, itself the right wing political remnant of the Apartheid ruling parties.

World-renowned African scientists joined with AIDS researchers internationally in urging him to reconsider.


The Panel of Experts

Mbeki hoped to resolve the matter by calling for a meeting of international AIDS experts to address the question of HIV's role in AIDS, along with a list of truly important questions about how to deal with AIDS in South Africa. The panel was initially made up of roughly a 50-50 mix of mainstream and denialist-associated voices. The panel make-up was changed at the last minute to include a larger number of practicing AIDS experts and slightly fewer denialists.

Reports from people who attended that meeting suggest that within the first hour it became clear that little or no common ground would be found. Shortly after Mbeki himself decried the tragedy of AIDS unfolding in his country, one of the denialist leaders asserted that there was no proof that there was any problem or anything unusual happening in Africa at all. Two days of discussion went downhill from there, with the mainstream scientists and dissidents breaking off into two completely separate groups. After the weekend meeting, the discussions were to continue over a "closed" Internet discussion group, right up until the week before the International AIDS Conference in Durban. At the final meeting, a vague "compromise" was worked out that would arrange for further testing of the accuracy of HIV blood tests. After all the sound and fury, it was a curiously empty conclusion.


Durban -- The Lost Opportunity

When Mbeki rose to the podium to welcome delegates to the "real" AIDS conference in Durban, there was great hope that he would now put his flirtation with the denialists behind him and call for drastic action against AIDS. He instead offered a classic politician's response, a long vague speech that left everyone wondering what he really believed. Hundreds of conference delegates walked out during the talk, which neither recognized nor denied the role of HIV. For most, it was enormously frustrating to see Mbeki squander a great opportunity to advance the fight against AIDS in Africa. All he seemed to promise was more confusion and delay. Sadly, those who walked out in protest missed the stunning presentation that followed, in which an 11-year-old boy succinctly and passionately made the case that had eluded Mbeki.

The other issues that Mbeki raised in his talk, such as poverty, hunger and sanitation, are indeed critically important. But, as many researchers were quick to point out, these conditions long pre-existed AIDS and were no worse -- and often better today than 50 years ago -- yet the death rate is soaring today while life expectancy plummets. What's new, obviously, is HIV and AIDS. And this is what he failed to address. Instead, he wasted time defending his exploration of denialist views, sending a signal of confusion to patients and AIDS workers throughout Africa.

The harm done may extend beyond South Africa. When a respected head of state publicly muses about whether HIV might be harmless, it makes the job of prevention far more difficult. Unless he now makes clear and unequivocal statements to the contrary, many people -- themselves goaded on by the denialist literature -- may choose to take the easy way out and disregard the difficult messages and behaviors of prevention. His inaction has also at least delayed the initiation of government-sponsored preventive treatment against mother-to-child transmission and may ultimately make women fearful of the drugs used for this purpose.

President Mbeki had the right idea in seeking expert input, but the process was diverted by trying to address the AIDS denialist position rather than the real issues at hand. The true blame here lies not with Mbeki but primarily with the AIDS denialists themselves who have brazenly taken advantage of a lapse in presidential wisdom. Having failed to make their case in the courts of science, they changed the venue to one of politics. They placed their own narrow and repeatedly rejected views above the lives of tens of millions of African men, women and children.

The proper venue for the debate about the cause of AIDS is the scientific community, where differing views are subject to the scientific process and peer review. When a point of view fails repeatedly in this venue, its proponents have no business trying to sell their beliefs instead in the political or public arena where people lack the background and knowledge to evaluate it. If they still wish to pursue their opinions, they are ethically obliged to conduct further experiments, collect more data, and try once again to convince their colleagues. Some denialists like to compare themselves to Galileo or other famous scientists whose views were once considered heretical. But the comparison is false. Galileo and others eventually succeeded through the strength of the data they presented to their scientific peers, not by politics or rhetorical appeals to the public.


Mandela Comes Through

Whatever the weaknesses of Thabo Mbeki as a leader, South Africa still possesses one of the world's greatest treasures in the person of Nelson Mandela. It fell to the man who defeated Apartheid to write the next act in South Africa's fight against AIDS. In a stirring speech at the conclusion of the conference, Mandela subtly and skillfully asked Mbeki to put his pursuits aside and urged all of Africa to aggressively confront the problem of HIV and AIDS. He spoke forcefully on HIV prevention, condom use, treatments to block mother-to-child transmission and education for the masses. With his carefully chosen words, Mandela made it abundantly clear that there was no time to quibble over old issues and political differences. The fire was already at the door. Echoing themes stated in an earlier uplifting speech by PWA and High Court Judge Edwin Cameron, Mandela brought the house to its feet, united in a clear vision of where to go, and what to do next. For the moment at least, all of Mbeki's hesitant and confused responses seemed unimportant, just another sideshow.


Commentary

While it may be fair to say that the South African government has stumbled in its first efforts toward coping with AIDS, the same can be said of all Western nations. Certainly, the early years of the epidemic in the U.S. offer no model for governmental behavior. Whatever mistakes have occurred in South Africa have been at least partially caused by western influences and their arrogance or disinterest in dealing with a developing nation. Had we done more earlier to help support the cost of coping with AIDS and other illnesses and fought to reduce the price of treatment, the denialist diversion might never have happened. Misinformation and false solutions have a way of filling the vacuum when too little is done to solve a problem. The real work of stopping AIDS in Africa and other developing regions is just beginning. We must all do our part.

While the 13th International Conference on AIDS may not have offered as much new science of interest to western patients, it may offer the beginning of hope for tens of millions of people thus far left behind. Governments, companies, researchers and activists must now offer whatever help they can. (A special issue of PI Perspective will shortly follow this one summarizing research highlights from the meeting.)


Back to the Project Inform Perspective August 2000 contents page.



  
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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.
 
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