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 every 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).
In the infamous "PrEP Facts" ad that ran in multiple LGBT news outlets this summer, a bar graph seems to show that in multiple studies, PrEP is less than 50 percent effective. However, the graphic is actually about adherence to the regimen, and not the drug itself. He has said the CDC, WHO, and the state of New York, where Gov. Andrew Cuomo has endorsed PrEP as part of a statewide effort to end HIV, are all misguided.
“The bottom line is that people won’t adhere and take the pill,” Weinstein told BuzzFeed in August. “That’s what studies have shown. If this catches on as a public health strategy, that means there are going to be people who will take Truvada irregularly and some will be infected, and some develop drug resistance.”
Weinstein even demanded the resignation of FDA commissioner Margaret Hamburg after the agency cleared Truvada for PrEP.
But on the flip side, there’s sexual health educator and Mr. Los Angeles Leather, Eric Paul Leue, who is calling for Weinstein to step down over his statements. Less than a year ago, Leue was part of an AHF campaign to remind the leather community to practice safe sex. When Leue had first heard about PrEP, he was skeptical too.
“A friend of mine said, ‘I take a pill, and it prevents me from getting HIV, as long as I take it once a day, like I’m supposed to,’” Leue recalls. “And of course it sounded a little worrisome to me, so I thought, let me do some research on this before I say anything. I was skeptical, and I think we all should be. That’s a normal grown-up response.”
Leue grew up in Germany, where he says sexual health is tackled head-on in schools in a matter-of-fact manner. At age 18, when he learned his first boyfriend was HIV-positive, instead of breaking up, Leue met with his boyfriend’s doctor to understand how to prevent transmission. This sort of attitude toward sex and sexual health is emblematic of why the teen pregnancy rate across Europe is significantly lower than in the United States. Meanwhile, annual HIV infections in the U.S. among young gay and bisexual men increased 132 percent between 2002 and 2011, according to the CDC.
“I have no problem in saying I’m wrong,” he says. “I make no money with this. I’m not paid in any way for any of what I do. I have a job that pays me that is related to this now, but that only started in September. But I want my community to be well [informed].” When he saw the AHF PrEP facts ad, Leue says, he felt compelled to take action.
He recalls sitting down with higher-ups at AHF, and after a lengthy discussion, Leue says it was clear the organization was not open to reevaluating its stance on PrEP. So he waged a campaign of his own to get Weinstein to leave the very organization he started nearly three decades ago.
Weinstein is an incredibly powerful figure in HIV activism, especially in California. With his and AHF’s backing, Proposition B was passed by voters, mandating that all penetrative pornography shot in Los Angeles (and there was a lot of it) must feature the use of condoms. Because of AHF’s legal efforts, Viagra advertisements include fine print that state the drug does not prevent HIV, which became an issue after studies showed gay and bisexual men were using Viagra with other recreational drugs and engaging in condomless sexual acts. In 2013, because of an AHF legal action, a federal court ordered the FDA to turn over the internal documentation that led to the agency’s decision to approve Truvada as PrEP. Most recently, a legal complaint by AHF led to the revocation of a $100,000 grant to REACH LA, an organization that provides HIV care and advocacy for underserved minority youth, because AHF said REACH LA was improperly awarded the grant.
"AHF doesn't give up on an issue," Weinstein said in 2010 in the early stages of the campaign for mandatory condom use in pornography, "and we're not going to give up on this."
With an operating budget that is reportedly in the $1 billion range, more than 1,000 employees, and about a dozen top-level employees earning north of $180,000, according to AHF’s 2012 tax filings, many people bring up the group’s fiscal clout in tandem with its social and political sway. There’s no question that AHF is nationally and internationally influential in its directives on policy, care, and treatment around HIV, which is why activists like Leue are concerned with its messaging about PrEP.
“It’s not just PrEP, it’s not just HIV, and STIs,” Leue says. “It’s about how we deal with sexuality. I mean, to call HIV a party drug — are condoms party balloons? The message Michael Weinstein sends by saying a form of responsible HIV prevention is a party drug, basically means that any prevention is a is a party item, and that all we want to do is to have fun. But the reality is that irresponsible fun would be to not take any steps.”
Frank Spinelli, MD, tells The Advocate that the power behind Weinstein’s and AHF’s words may be too potent. As HIV rates have no sign of slowing down, “for him to make a statement like ‘It’s a party drug,’ is just so incredibly insulting to all gay men and anyone who’s ever been at risk of HIV.” Instead of talking about drug cost or the possibility of building up a resistance to Truvada, Spinelli says Weinstein has “branded this concept in a very unflattering way, and that’s unfortunate because I think people will just go by what he said and not look at the science.”
Los Angeles physician Gary Cohan, MD, whose practice caters largely to gay and bisexual men, says Weinstein's statements and position are one of the most “heinous things that I’ve seen happen in my 30 years of treating this epidemic.”
Writer Andrew Sullivan says AHF and Weinstein are stigmatizing medication, to the point that men are being called “Truvada whores” for taking the pill. “Think about it,” he wrote, “if it were 1990 and the news emerged that — just by taking one pill a day — you could avoid ever getting infected with HIV, do you think there would be any debate at all?” Bay Area Reporter columnist Race Bannon called Weinstein and his ilk the “climate change deniers of HIV prevention.”
Longtime HIV and AIDS activist Peter Staley says his contemporary Weinstein is “playing the victim.” In the same Associated Press article in which Weinstein declared PrEP as a party drug, Demetre Daskalakis, MD, said AHF’s opposition to PrEP is “irresponsible,” as the message has reached his clients who would be candidates for PrEP but avoid it. Out columnist and adult film producer Michael Lucas said Weinstein’s views are “so out of line with scientific reality,” and also called for him to be removed from his position at AHF.
Meanwhile, more than 100 of the leading AIDS organizations have publicly sided with the PrEP recommendation, including amfAR: The Foundation for AIDS Research, Gay Men’s Health Crisis, National Minority AIDS Council, and Whitman-Walker Health. This month, the Human Rights Campaign endorsed the use of PrEP, calling for Gilead to lower the price of Truvada so more people can access it. But as Leue points out, “because Michael Weinstein is the only person who says no, everyone writes about it.”
Weinstein is not completely alone, however. Longtime activist and esteemed writer Larry Kramer has voiced his concerns over PrEP, and other advocates and doctors have cautioned that PrEP should be used in tandem with condoms, not in lieu of condoms.
For Weinstein and his colleagues, it seems the road to understanding and opposing PrEP has been full of peaks and valleys. In his 2008 call to end federal funding of an HIV vaccine, Weinstein heralded the possibilities of treatment drugs being used as prevention, which was still being tested at the time. In 2011, before the FDA approved the use of Truvada as PrEP, a group of 618 doctors and advocates sent letters to the FDA and Gilead to stop the pursuit of FDA approval for PrEP, in an effort led by AHF. Then late last year, about five months before declaring Truvada a “party drug,” Weinstein said, “If a person takes Truvada when they are supposed to, they take it every day, then their chance of becoming infected with HIV is close to zero.” But by April 2014, along with his statement came a “PrEP Facts” ad, which cited low adherence as the particular reason AHF takes issue with PrEP.
In fact, Weinstein’s argument seems to be less about whether PrEP is indeed effective and more about whether gay men will take PrEP daily, as instructed. Leue recalls a recent group interview with the BBC in which Weinstein would not back down from his numbers.
“He said, ‘PrEP is only 50 percent effective,’ and everyone else said, ‘No, it’s actually 99 percent effective if you adhere to it,’ but then he says, ‘Yeah, but if you adhere to it,’ and then we said, ‘But that’s the same thing for condoms or anything you do.’ If you don’t breathe, you’re going to suffocate. If you don’t eat, you’ll starve. Everything in life is dependent on adherence.”
The AIDS Healthcare Foundation declined requests to discuss this issue further with The Advocate. But Weinstein still stands by condoms being the most effective tool to prevent HIV, even if the message “may not be fashionable.” And it’s clear this is a fight AHF won’t back down from anytime soon — as Weinstein says and shows, backing down just is not in AHF’s nature.