Erin and I were talking the other day about HIV denialism – the denial that AIDS is caused by HIV. I’m still amazed it’s around. I first heard of it when Christine Maggiore came up from Los Angeles to speak back in ’97 or ’98. I was blown away at this HIV+ mom breastfeeding, a high- risk for HIV transmission. But she was an impressive public speaker- charismatic, forceful. What she said went against what I’d learned, but I could see how her own vitality could offer hope in a pretty hopeless time.
Hope was a challenge in the HIV community in the early days, and denialists gave people hope. The idea that AIDS could be avoided if people took charge of their bodies through lifestyle changes was invigorating. But while lifestyle changes can help a lot for health, they can’t do everything when it comes to HIV. Go ahead- quit smoking, take up exercise, get to a healthy body weight, get tested for HepC and STIs, eat well, take supplements and other complementary therapies – but these changes can’t do everything. Louise “You Can Heal Your Life” Hay was huge in those days, but she also annoyed a lot of people with the implication that it was your fault if you couldn’t heal your body.
The humbling reality is that “taking control of your health” goes only so far. Despite the power of positive thinking and action, some disease roadblocks can’t be scaled. Science has shown that HIV progression is one of them.
Things have become more hopeful with the evident success of antiretroviral therapy, despite what denialists say. People who hadn’t expected to live much longer than a few months are looking forward to many more years. Research has shown that HIV treatment during pregnancy can reduce the risk of transmission to less than 1%, or 1 in 100 babies. Without treatment, 1 in 4 (25%) of babies might be infected. Science has also shown that with successful treatment, the risk of sexual transmission can be significantly reduced too, so much that “treatment as prevention” is being promoted (where treatment is readily available).
For Maggiore, refuting the science ended sadly. She went on to get pregnant again, didn’t take HIV medication during pregnancy, and breastfed. According to reports she never had her daughter tested for HIV, as is advised to positive moms. Her daughter died of AIDS related pneumonia (an autopsy finding she denied) in 2005, which relit the fire about HIV scepticism. Maggiore herself died of AIDS-related pneumonia in late 2008.
Last winter an article in the UK Guardian published a piece called Death by Denial, noting that HIV denial is still going strong, and in July an American conservative made denialist statements too. After all these years of research and evidence on the natural history of HIV, transmission routes, and the effects of medications, why would one deny it? Science vs. scepticism goes back and beyond HIV, and still exists in other fields. Rhetoric against scientific evidence shows up frequently in reproductive health battles- see the recent atrocious statements from American Republican Todd Akin about “real rape” not causing pregnancy. Or look at the ongoing controversy on climate change, despite evidence adding up. Scientists must prove their points over and again to face off against the voices who don’t want to hear the news because it doesn’t fit their political or religious agendas. One writer likens HIV denialism to a cult.
HIV treatments are improving and saving lives- I believe in that science. There’s still lots to do in learning about the course of HIV, the best way to prevent and treat it. Science is working on all of that. Is denial?
This was posted on Friday, October 26th, 2012 at 1:41 am and is filed under Body Health, Education & Resources, HIV pregnancy, HIV Prevention, HIV progression, HIV stigma, HIV testing, HIV Transmission, HIV Treatment, Risk factor, sexual health . Feel free to respond, or trackback. Read our comments policy.