HIV misinformationBMJ 2000; 321 doi: https://doi.org/10.1136/bmj.321.7263.772 (Published 23 September 2000) Cite this as: BMJ 2000;321:772
See p 722
If you telephone the San Francisco office of the HIV campaign group ACT UP, the AIDS Coalition to Unleash Power, an answerphone message announces two surprising “facts.” Firstly, “HIV cannot possibly cause AIDS.” Secondly, “AIDS drugs are poison.” The San Francisco group, joined by branches in west Hollywood, Toronto, and Atlanta, is on a crusade to challenge what it sees as the medical establishment's intellectual stranglehold on the AIDS community.
The crusade took on a high profile recently with a flurry of media interest in the author Christine Maggiore. Newsweek called her “The HIV disbeliever.” In her book, What if everything you knew about AIDS was wrong?, she explains that HIV tests are unreliable, that pregnant women who are HIV positive cannot transmit the virus to their babies, and that AIDS is not a global health problem. Maggiore was one of the “HIV dissenters” invited to meet the South African president Thabo Mbeki at this year's Thirteenth International AIDS Conference in Durban. ACT UP San Francisco recently took up her cause, inviting her to a public meeting to discuss “the truth” about AIDS in Africa.
This was no ordinary meeting. Outside the hall, activists wandered around in T shirts that declared “WARNING! This area is being patrolled by ACT UP.” They handed out leaflets saying, “Don't Buy the HIV Lie.” The group is famous for its direct action activities, and wherever it goes there is always the feeling that something unsettling is about to happen.
Maggiore proved to be an eloquent and calm spokesperson. While her views may be extreme, and often untenable, she does not come across as an extremist when she recounts her own experiences. She explained that in 1992 doctors told her that she was HIV positive. She had another test that was indeterminate, then a negative test, and finally another positive test. This uncertainty led her to question the scientific knowledge about the virus and the disease, and she went on to set up Alive & Well AIDS Alternatives, a non-profit organisation “founded by HIV positives who have learnt to live in wellness without AIDS drugs and without fear of AIDS.” Her personal choice is perhaps understandable, if not unconventional.
But when she started to talk about Africa her beliefs began to sound increasingly bizarre. HIV disease is not a problem in Africa, she explained, and the figures for the number of infected people are simply false. The sick and dying people she saw in the hospitals could not have had AIDS. “Poverty,” she said, “malnutrition, and lack of access to basic medical care were causing the devastation and disease.”
At this point, Maggiore's partner, a film director, showed the audience a film he made when he accompanied her to Durban. We hear a South African journalist saying, “I'm scared for Africa and where it might go. The only hope is Thabo Mbeki.” We see a young HIV positive man who has stopped all of his antiretroviral medication. “I don't have fear,” he says, “fear is a terrible emotion.”
It is hard to make sense of all this HIV disbelief, but these two voices in the film give some clues. AIDS has been a catastrophic illness, decimating the gay communities in San Francisco and Sydney and now ravaging the developing world. The United Nations estimates that one in two teenagers in Africa will go on to develop the disease. How is it possible to deal with this appalling phenomenon? Perhaps by denying that there is a problem at all. The Boston college psychology professor, Joseph Tecce, who has studied AIDS dissenters, told Newsweek: “The basis of denial is a need to escape something that is terribly uncomfortable. If something is horrific, I might want to pretend it doesn't exist.”
At the end of the meeting, Maggiore took questions from the audience, and the atmosphere turned confrontational. One man screamed at her to “read Medline” for the wealth of evidence about HIV and its treatment. Another explained that his HIV positive friends had responded well to combination treatment and that they had no intention of throwing away their drugs.
The international scientific and medical community has made it clear what it thinks of dissidents like Maggiore. Over 5000 scientists have now signed the “Durban Declaration” (on http://www.durbandeclaration.org/), which states: “The evidence that AIDS is caused by HIV-1 or HIV-2 is clear cut, exhaustive, and unambiguous. This evidence meets the highest standards of science.” The signatories say, “It is unfortunate that a few vocal people continue to deny the evidence. This position will cost countless lives.”
Other HIV activists in the United States and the developing world, including the Nobel prize winners Médecins sans Frontières, are similarly outraged by the dissidents. These activists are campaigning for the fundamental right of people in poor countries to have access to HIV medicines. When Maggiore says that poverty is killing Africa, this, they believe, is only a half truth. Lack of medicines is equally as deadly. The activists publicised their anger at a rally in Durban, carrying placards that read, “One dissenter, one bullet.”
The four rebel ACT UP groups want people to re-examine the orthodox view of AIDS. But if this leads to people abandoning safe sex, have they really done the world a service? There has been a recent rise in the number of new HIV cases in San Francisco, so people cannot afford to be complacent. Maggiore's mantra, spoken over and over at the ACT UP meeting, is that “you have a choice” in whether to take treatment. Perhaps she should tell that to the 24 million people living with HIV and AIDS in sub-Saharan Africa.