Conspiracy theories about HIV do real harm
OPINION - HIV/AIDS conspiracy theories circulate in homes, barber shops, churches, and among activists in the African-American community.
“HIV does not cause AIDS.” “AIDS is a man-made disease created by the US government that got out of control.” “HIV medications are really poison.” “The US government has a cure that they are keeping from black people as a method of genocide.”
Some version of all of these rumors circulate in homes, barber shops, churches, and among activists in the African-American community. But if we’re going to get serious as a community about ending the AIDS epidemic, we’ve got to deal with what we know works, and not let the conspiracies keep us from mobilizing to prevent the spread of HIV.
In fact, the conspiracy theories may also affect blacks who already have HIV. A new study released by the Journal of Acquired Immune Deficiency Syndrome (JAIDS) surveyed 214 HIV-positive African-American men in Los Angeles (only 22 percent of whom were heterosexual), asked them about their belief in various HIV-related conspiracy theories, and then tested their blood for levels of anti-retroviral drugs, to look for drug adherence.
The study found that almost two-thirds (64 percent) agreed with at least one HIV conspiracy belief; about half (48 percent) agreed with 2 or more. Forty-four percent believed that HIV is man-made, 35 percent thought that AIDS was created in a government laboratory, and a third endorsed the genocidal belief related to the withholding of a cure. Conspiracy beliefs about medications were also substantially endorsed, with 22 percent believing that people who take the new HIV medications are human guinea pigs for the government and 17 percent believing that the medications are poison.
The study also showed that the men who believed the conspiracies about the medication itself were less likely to adhere to treatments prescribed by their doctors. Lower adherence to drug treatments means that those with HIV are more likely to transmit the virus to others. People who go on and off their medications are also more likely to develop resistance to the drugs, which makes their HIV more difficult to treat as they run out of effective options.
Unfortunately, the men in this study have good reason to be suspicious of modern medicine, the medical establishment, and clinical trials. Though the Tuskeegee Experiment is always given as the only example of medical misconduct of African-Americans, Harriet Washington’s expertly researched book, Medical Apartheid, gives a harrowing account of medical exploitation of blacks from the chattel slave period through the present. Though Washington herself exposes very grotesque forms of medical violence and exploitation on the backs of blacks, she also explains that blacks need to be involved in science and medicine as researchers and also as participants in clinical trials.
My problem is not that people are skeptical of what they’re told. That’s healthy. But when conspiracies give us an excuse to ignore the epidemic around us, we’re actually participating in our own demise. The South African government endorsed many of the denialist conspiracies for a decade. That decade could have been spent preventing what is now a widespread HIV epidemic in that country.
If we want to end AIDS and to learn about the conspiracies, there are things we can do, and there are some things for which specific institutions are responsible. We can demand that science and medicinal researchers produce and disseminate research findings to communities who need it and not just to each other. We can demand more useful health/science literacy and sex education in our schools. But in relation to AIDS, we are acting almost on conspiracy alone, and not on information that we have available.
In the absence of a cure for HIV, demanding more accountability from the institutions that should be providing better information to communities might be one weapon in the fight.
