Michael Weinstein was a pioneer in fighting the stigma around HIV since the early 1980s. So why are people so upset with his activism these days?
Lyndon H. LaRouche is not a name many Californians in the know say with a smile. As many Americans were still learning about the onslaught of a new, deadly and mysterious virus, LaRouche was inciting a panic and devised one of the most notorious propositions in the state’s history: Proposition 64, which qualified for the ballot in 1986 with 700,000 signatures and would have required those who tested positive for HIV as well as those who had been exposed to it, to possibly be quarantined.
But despite LaRouche’s legion of followers to Prevent AIDS Now Initiative Committee (PANIC — yes, ”panic”), the ballot initiative was defeated by Michael Weinstein and a wall of activist opposition with the backing of nearly ever California politician.
By 1986, Weinstein had already been a face of the movement fighting HIV and AIDS, and by the end of the decade, he and a group of friends were building a way to live and die with dignity in the face of AIDS. The AIDS Healthcare Foundation was an early organization created to provide medication, social resources, and research regarding the disease. It started with Weinstein and friends asking passersby on the street for coins. These days, AHF issues 14,000 HIV tests each year and provides HIV and sexual health care for thousands of Californians and Floridians as well as people around the world through the organization, which employs more than 1,000 people, according to its most recently available tax filings. The group’s website says AHF currently provides medical care and services to more than 123,000 individuals in 26 countries worldwide in the US, Africa, Latin America/Caribbean, the Asia/Pacific region, and Eastern Europe.
So decades into the fight to end HIV, why does AHF founder and president Weinstein’s name roll off the tongues of other HIV activists’ names with such disdain?
The issue of discontent these days seem to be pre-exposure prophylaxis, known as PrEP. PrEP involves HIV-negative people taking medication to reduce their risk of being infected with the virus. The only medication currently approved for PrEP is Gilead’s Truvada, which is also used to treat HIV. Studies indicate that if taken daily as directed for PrEP, Truvada reduces risk of transmission of HIV by 99 percent. In a world where no viable vaccine or cure is readily available, the Centers for Disease Control and Prevention and the World Health Organization both recommend that men who have sex with men, along with other high-risk populations, consider a PrEP regimen. And while many see PrEP as a scientific breakthrough after decades of fits and starts in reversing the tide of HIV and AIDS, some are more hesitant. In Weinstein’s case, he is among the most vocally resistant.
The Food and Drug Administration approved Truvada for preventive use in 2012, eight years after it was approved as an HIV treatment. Yet a shockingly low number of people across the country are actually using the drug as HIV prevention (in contrast, 63 percent of all American women of childbearing age are currently using a contraceptive method, such as daily hormonal birth control pills or other devices). When asked why so few people have started PrEP, experts give plenty of reasons — cost, worries about long-term effects, and lack of awareness about the regimen itself among both doctors and patients are chief among them. But one top reason is the stigma of using PrEP.
Weinstein’s name and the name of his organization, AHF, have become synonymous with the stigma surrounding PrEP use. In an April Associated Press article, Weinstein declared that PrEP is “a party drug,” giving license to gay and bisexual men to have casual, anonymous sex. He’s called it a “public health disaster in the making,” as his oft-repeated argument is that the most at-risk people will not adhere to taking a pill each day. AHF has disseminated fact sheets and advertisements, in some instances claiming PrEP is only 50 percent effective in risk reduction (though according to numerous studies, the figure is 90 percent or better).
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