Tegenwoordig schrijf ik vooral in het Nederlands, maar voor de website van TEDxRadboudU maakte ik weer even een uitstapje naar het Engels. Eerder al verwees ik naar mijn blog ‘Mandela’s challege’, hieronder kun je mijn tweede blog binnen het thema ‘rebuilding trust’ in zijn geheel lezen. Over een onderwerp dat mij al jaren fascineert en verbijstert: AIDS denialism.
Science needs scepticism: the process of acquiring new insights needs people who ask critical questions, fuel the scientific discussions and won’t accept research findings until they’ve been replicated several times. But what if scepticism turns into denialism and conspiracy thinking? What if distrust in science does more harm than good to the scientific process? In the case of AIDS science distrust has already made many victims. And it still does.
Several denialist theories have been circulating from the 1980s on. The most common theory is that HIV does not cause AIDS. Probably the first and definitely the most prominent advocate of this theory is Peter Duesberg. He is one of the few denialists with scientific credentials. However, as a scientist he got famous for his cutting-edge cancer research. He never researched AIDS. Also, at some point he turned 180 degrees, rejecting his own earlier findings that had meant a breakthrough in cancer research. Nowadays he is known for claiming that HIV is a harmless virus, unrelated to AIDS.
Then what does cause AIDS according to Duesberg and his supporters? They mention several environmental and lifestyle factors, such as drug use, malnutrition, poverty and even the Antiretrovial (ARV) drugs that are part of HIV-treatment. Many denialists believe that ARV’s are toxic and that AIDS is curable. Advice on cures ranges from all kinds of holistic therapies to nutritional ‘medicines’ consisting of vitamins or herbs.
They usually ignore research and statistics that show that ARV-treatment is effective, because they believe there is a worldwide conspiracy between governments, AIDS scientists and the pharmaceutical industry. Some go as far as to claim that AIDS was invented by governments as a biological weapon to commit genocide on specific groups such as homosexuals or Africans.
Does this sound irrational and paranoid to you? You might be wondering who, besides people with a tendency towards conspiracy thinking, fall for denialism in a time in which we know so much more about AIDS than when it first surfaced in the 1980s. Unfortunately, more people than you might think.
People who have recently been diagnosed with HIV or heard that a loved one has HIV are particularly vulnerable to the denialist message. Reading that HIV is harmless and that you just have to take some extra vitamins obviously sounds much better than the fact that you have a disease which is fatal if you do not take ARV’s for the rest of your life.
Besides that, many people who search for information on AIDS have difficulty distinguishing fact from myth. The internet in particular has given denialists a lot of room to vent their ideas. And although there is no scientific basis to their claims, they are very good at making them sound like proven facts to the layman. Denialist rhetoric includes misinterpreting basic facts, using outdated research from the 80s and 90s to support the argument and presenting sentences from research articles out of context. (Denialists also tend to confuse their readers and make themselves sound knowledgeable by using difficult language and presenting elaborate ‘clarifications’.)
A sad example of someone with HIV who got stuck in the denialist web is the Californian Christine Maggiore. Being an AIDS activist at first, she eventually believed that HIV does not cause AIDS. She wrote a book about the subject and founded an organization that stimulates people with HIV to stay away from ARV-treatment.
Sadly, her three-year-old daughter died in 2005. Maggiore and her fellow denialists claimed that she did not die of AIDS, even though autopsy proved them wrong. Maggiore herself passed away in 2008. According to her memorial website she died unexpectedly after she got bilateral pneumonia. Apparently, she was unable to recover from the pneumonia because she was exhausted from the unjust treatment she had received after the death of her daughter.
In the case of Christine Maggiore, it’s one family becoming the victim of denialist propaganda. But what if a president starts listening to denialists? In that case an entire country is victimized. This is what happened in South Africa.
Former president Thabo Mbeki never literally said that HIV doesn’t cause AIDS, but he was known for questioning this. Several members of his presidential advisory panel were denialists. Obviously, this harmed the struggle against AIDS in South Africa considerably. Mbeki’s distrust of science sent out the message that it is useless to get tested for HIV or to take ARV’s when you test positive. His health minister made matters even worse: whereas Mbeki eventually decided to withdraw from the public AIDS discussion, the health minister’s opinion clearly showed in her policy. She was extremely reluctant to spend money on providing ARV’s, but more than happy to support nutritional and vitamin programs. In the meantime, South-African HIV prevalence rates were – and still are – some of the highest in the world.
Things are slowly changing in South Africa. President Zuma might be famous for once stating that he took a shower after sex to prevent infection with HIV, at least he took a public HIV-test to promote getting tested.
But faith in science isn’t restored overnight. Educating people about the facts isn’t enough, according to researcher and psychologist Seth Kalichman. In his book Denying AIDS he pleads for better communication about AIDS research “with people other than our fellow scientists”. The same goes for medical staff. They should make patients understand why they need to take ARV’s, what the side effects might be and how they can cope with them. But medical staff shouldn’t just talk. Listening is just as important, says Kalichman: doctors and nurses should take time to listen to a patients’ doubts about HIV-treatment. Also, they should be careful not to alienate patients by openly disapproving of alternative therapies. Vitamins may not cure AIDS, but as long as patients take them in combination with their ARV’s, it won’t harm them either.