THE BLOG

Why I Started a Petition to Remove the Head of the AIDS Healthcare Foundation

04/22/2014 09:34 pm ET | Updated Feb 02, 2016
Joe Kohen /AP for AIDS Healthcare Foundation

In an interview with the Associated Press that was published on April 6, AIDS Healthcare Foundation (AHF) president Michael Weinstein referred to a medical breakthrough for the prevention of HIV as a "party drug." His comment agitated many medical professionals, groups and individuals affected by HIV, other HIV organizations, and AHF staff members and providers.

My name is Eric Paul Leue. I am Mr. Los Angeles Leather 2014, I am 27 years old, I was born in Germany, and I am a permanent resident of the U.S.A. I am gay, I'm HIV-negative, I'm not on PrEP, and I primarily use condoms during anal intercourse. For 10 years I have actively supported HIV awareness, safer-sex education, and the alleviation of HIV-related stigma and discrimination. Today I would like to give insight into the reaction that Weinstein's "party drug" comment caused, dissolve confusion about the difference between post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP), evaluate PrEP based on scientific data, describe my experience with the effect of Weinstein's leadership in the AHF today, and explain the reasoning behind the petition I launched.

Weinstein's comment regarded PrEP, which currently consists of a daily dose of Truvada, an antiretroviral (ARV) medication approved by the FDA in 2004 and currently one of the most widely prescribed ARVs on the planet, for HIV-transmission prevention. The FDA approved this new use of Truvada as PrEP in 2012. PrEP protects HIV-negative individuals from being infected with HIV upon exposure.

Since 2004 HIV transmission rates have remained stable, at about 50,000 new infections per year in the U.S., but have actually increased in men who have sex with men. Clearly our current prevention strategy is incomplete. The seriousness of this issue makes people's flustered reaction to Weinstein's unethical comment quite understandable.

But instead of seeking dialogue, Weinstein goes further, saying, "[I]n terms of the people who have been yelling the loudest about this, they've all been associated with bareback porn." You'd think he was trying to slander accomplished figures like Dr. Demetre Daskalakis of the ambulatory HIV program at Mount Sinai Hospital in New York, Dr. Susan Little and Dr. Sheldon Morris of the UC San Diego AntiViral Research Center, and Jim Pickett of the AIDS Foundation of Chicago.

Oftentimes PrEP and PEP are confused. PEP has been a standard procedure since 1996 and consists of a 28-day course of two or three ARVs that must be administered within the first 72 hours after exposure to HIV. Its efficacy depends on how soon after the exposure it commences but is close to 100 percent.

PrEP has been show to have a 99-percent efficacy rate when taken daily. Even Weinstein knows that PrEP works. On Nov. 9, 2013, on a panel held by the AHF-funded subcommittee Impulse, he stated, "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." So Weinstein acknowledges PrEP's high efficacy rate.

But what if people don't take it daily? When looking for an answer, we must compare this prevention method with other medications and activities that we have learned to accommodate daily or in a routine: contraception pills, antibiotics, dental care, and condoms.

When PrEP is not taken daily, its efficacy for HIV-transmission prevention drops. The same is true for condoms. According to the World Health Organisation, "[C]ondom use may be associated with reduced HIV incidence of between 94% and 35%."

Neither PrEP nor condoms is the sole solution. They are neither vaccine nor cure, but both are valid prevention options.

The real question is very personal: Am I more likely to adhere to taking a prevention pill every morning, putting on a condom, or maybe both? Prevention is a personal choice that every individual makes for himself or herself based on his or her knowledge and who he or she is as a sexual being. Providing this knowledge is key.

When involving other sexually transmitted infections (STIs) in this conversation, we have to remember that there are ways of transmissions other than just vaginal/anal intercourse. Gonorrhea and chlamydia, for example, are both smear infections.

To understand the potential side effects of Truvada, we must know what it does in the human body and how it actually prevents HIV transmissions. Emtricitabine (FTC) and Tenofovir (TDF) are the two active agents in Truvada. Both are known as nucleotide reverse transcriptase inhibitors (NRTIs), meaning they block the activity of reverse transcriptase, an enzyme produced by HIV that allows it to infect T cells and reproduce. T cells play a central role in the immune system.

While Truvada has side effects, we have to compare them with the side effects of other medications we are more familiar with -- for example, oral contraception. Oral contraceptives can increase the risk of blood clots (venous thromboembolism) by 600 percent and cause permanent disability or death. Oral contraceptives can also increase the risk of ischemic stroke, cardiovascular disease, high blood pressure and dangerous potassium levels, which can be fatal in combination with other medications. Excess estrogen caused by some oral contraceptives appears to increase cholesterol levels in bile and decrease gallbladder movement, which in turn can lead to gallstones.

Truvada is not new; we have a lot of experience with it and know it is safe. While it has been known to cause kidney and bone issues when used for treatment of HIV infection, none of the studies of the use of Truvada as HIV-transmission prevention showed any serious side effects.

When further discussing PrEP, the low number of prescriptions filled (between January 2011 and March 2013, only 1,774 people filled prescriptions for PrEP) might imply that it is ineffective or not widely accepted as a method of prevention. Again, we must assess this statement with scientific logic: In addition to the filled prescriptions, many people on PrEP were enrolled in studies and therefore did not receive the medication through prescription. Many others do not know about PrEP. To really discuss whether PrEP is indeed ineffective, we would first have to let people know that it exists, what it does, and where to get it.

Of course, one of the biggest criticisms of PrEP is its cost: up to $1,500 per month out-of-pocket. However, California's Medi-CAL program has just eased access to PrEP, and most nationwide health insurance plans cover the cost of this prevention method. The producer of Truvada offers a PrEP Medication Assistance Program.

Beyond Truvada, the future holds promise for other PrEP drugs. The UN AIDS conference has just discussed the first results of a long-acting injectable that could transform PrEP from daily pill-taking to three monthly injections.

When Weinstein's "party drug" comment was published on April 6, I was the face of an AHF-funded campaign produced by Andrew Orozco, head of the AHF subcommittee LEASH. The campaign set out to raise HIV awareness and encourage people to get tested regularly. As a representative of the LGBTQ community, I addressed issues of public concern with the AHF and held a personal meeting with Ged Kenslea, Senior Director of Communications, on Monday, April 7. While I did not request that the AHF do a 180, I did ask for an apology and clarification from Weinstein regarding his statement about PrEP. I also asked for a public statement clarifying my involvement with the AHF, and I asked the organization to produce a panel of different HIV foundations and organizations, medical professionals, and representatives of the LGBTQ community and the adult film industry. The panel would have been intended to encourage dialogue and allow everyone to move forward together in our shared vision: the prevention of HIV transmission.

Unfortunately, Kenslea advised me in a phone conversation on April 14 that Weinstein sees no reason for an apology or dialogue. Orozco, who wanted to raise awareness, prevent transmission, further dialogue and alleviate stigma and discrimination, was fired a few days later, but he and I still share the same mission.

The petition I launched is titled "Remove Weinstein." I have nothing against Weinstein as a person, nor do I mean to devalue his past achievements or the AHF in general. I simply question his role as a leader of an HIV organization and as an influential public figure on HIV issues.

The AHF's mission is to "provide cutting-edge medicine and advocacy regardless of one's ability to pay." PrEP is cutting-edge medicine, and the issue of its cost is, according to the AHF's mission, to be disregarded.

Dialogue would unite everyone over our common goal of preventing HIV transmission, providing accurate information to the public, and alleviating HIV-related stigma and discrimination. The question is: Why is Weinstein not interested in participating?