Three to four decades ago, gay men, trans-women, injection drug uses and sex workers were falling sick and dying of a mysterious illness and no one knew what was going on. Numerous evangelical and right-wing groups called it a punishement for these sinful and aberrant people. The CDC, NIH, public health officials and drug companies were slow to do research as their priorities was on research for people who mattered more to society. In the meant time, community providers and friends of people fighting to survive came up with their own care tactics before any institutions started caring. For example, when people realized that the disease was likely spread through sexual or blood to blood contact, grass roots efforts made protection available and promoted harm reduction techniques. This went on for awhile and groups and institutions with resources only started caring when activists from ACT UP! , a lot of who had fallen sick themselves, fought hard. The films below provide a good historical background, although mostly from a white, middle-upper class gay male perspective:
I haven’t before written a post related to the work I’ve been doing, namely HIV prevention. I was inspired by a very honest and passionate discussion about HIV denialism I had a with a friend a few months back. I was really riled up because I think HIV denialism feeds into HIV stigma and has sidelined and caused lobbying against access to care for people living with HIV. Care that, as I wrote above, was fought for. Even to this day in my work, we battle stigma and the lack of accessibility to health care for people living with HIV, a disease that disproportionately affects poor people of color.
Putting my emotions aside, my friend, who was definitely not a homophobic, classist or racist agenda in fact doing the opposite, made some interesting points. HIV *is* part of the “medical industrial complex.” Today, HIV research and care is a lucrative industry; there’s money at stake for bigger clinics like the posh SF AIDS Foundation, scientists and research labs and most of all, drug companies.
There have been, likely underreported, cases of corruption, like US congress colluding with pharmaceutical companies creating drugs that falsely claim to work. We definitely need to be critical; however, do I think there’s some big conspiracy between scientists, providers and companies to promote a fake disease, no.
So if one end of the spectrum is big pharmaceutical companies, the other end of the spectrum are tenured faculty, spewing controversial theories to garner attention, namely HIV denialists. While their theories are latently homophobic and not client-centered, the danger of such research side-lining the provision of care and research is long gone as there are very few today who actually agree with denialists.
The current proponent of HIV denialism, Peter Duesberg, a UC Berkeley Professor, claim, among other points, that
1. HIV anti-body testing (current testing practices) is not viable because there’s too large a chance for false positives due to, for example, common flu antibodies.
2. AIDS is not caused from HIV; there are numerous AIDS cases where the patients were not HIV positive. People are being diagnosed with HIV/AIDS without verifying the diagnosis.
“In the last ten years this has happened in America to about 20 percent of all people with HIV, 250,000[including deaths to date] out of a million. But the people who are dying from AIDS are hardly ever your all-American friends of 20 to 40 years of age: Virtually all heterosexual Americans and Europeans who had AIDS are intravenous drug users. And the homosexuals who get AIDS had hundreds if not thousands of sexual contacts. That is not achieved with your conventional testosterone. It is achieved with chemicals. Those are the risk groups, they inhale poppers, they use amphetamines, they take Quaaludes, they take amyl nitrite, they take cocaine as aphrodisiacs.”
Besides the questionable science, I think his tone, usage of the words “the homosexuals” and the false notion that only gay and bi men who are drug users contract AIDS seriously undermines his argument.
Some excerpts of these articles:
“We were running the first program offering ART to the province and had tested nearly 6000 people. But late in 2004 we came to realize that some people in our program did not have HIV, so we re-tested a number of them—and identified almost 50 who were suspect for false positive HIV diagnosis. This news was devastating, considering the consequences a false diagnosis can have on people’s lives…there are feasible solutions that virtually eliminate the problem, such as improving the test algorithm, adding a simple confirmation test, and improving quality control.”
“The existence of immunodeficiency was documented long before the onset of the AIDS epidemic but was extremely rare in the absence of cancer chemotherapy. These immunodeficiencies have a very specific pathogenesis and specific clinical manifestations. Some very rare types of immunodeficiency occasionally present with the clinical symptoms of AIDS. However, surveys conducted in many countries have shown the number of these cases to be insignificant compared to the numbers of cases of HIV -induced immune deficiency.”
Whether or not the Antiretrovirals (ARTs, the drugs given to suppress HIV viral load) are the best treatment for HIV remains to be seen; however, it is clear that this treatment works. Denying this fact CAN cause harm. There is some hope of circumventing American drug companies in HIV care. Generic brands of drugs are being produce in India and the competition has helped the price plummet to nearly $100 for a year supply.
There are questions that definitely still need to be answered. Is research being conducted or data being portrayed in way to be lucrative to stake holders? Is there research about testing and treatment that the public does not know about? Is there negligence and lack of oversight on the part of some providers when it comes to testing and treatment?
However, some these questions and more are already being asked despite the current complacency of the general community. There are dissenting entities like more radical groups such as ACT UP! SF, clinics like St. James Infirmary and Glide in San Francisco and Berkeley Free Clinic in Berkeley. There is good work being done which cannot be ignored; by no means, is everyone just lying down and accepting what people with power and money say.