Despite medical evidence PrEP prevents HIV AHF still doesn’t like it
For two years Justin* was known as a bug chaser — someone who intentionally tried to get infected with HIV. He figured he was going to get it anyway, since he never wore condoms, and was a bottom.
During that time period the 23-year-old that lives in Chicago met several positive men who were more than willing to infect him.
They didn’t succeed.
“I spent a good couple of years bug chasing. I can’t really give you a logical reason why. I just wanted to get it and get it done and over with,” he said. “I was talking to a guy online who told me had HIV. I know this sounds horrible but I was kind of turned on by it. He said ‘If you’re going to bareback you’re eventually going to get it.’ And so that’s when I started to try.”
After a couple of friends found out about his behavior and berated him for it, their opinions eventually struck a chord with him and he started to feel ashamed of his behavior.
But just because he started to have a change of heart didn’t mean he was going to start wearing condoms.
“I’ve never been one to wear a condom. I never liked them. They’re uncomfortable,” he said.
For some unexplainable reason the “condom talk” never resonated with Justin no matter how many times, or people, told him he should use one.
And that’s when he found out about pre-exposure prophylaxis, more commonly known as PrEP when preventing HIV.
Justin now considers himself a “reformed bug chaser.”
“I want to take care of myself now. Using PrEP isn’t for me to be a whore. It’s one of the valuable options out there to protect myself from HIV,” he said. But added, “I am still going to bareback.”
He’s only been on the once a day blue pill for a couple of months. He admits that the first month he missed four to five of his doses. But said he was going to work on better adherence in the future by using sticky notes and setting alarms on his phone to remind him. SFGN caught up with him a month later when he said he had only missed one to two doses the second month.
It’s the adherence part that the AIDS Health Care Foundation has used repeatedly to attack PrEP as a bad alternative to condom use.
In the past four months AHF has released at least three campaigns attacking PrEP and the drug used for it — Truvada. The first ad was titled “PrEP Facts,” the second “CDC: What if you’re wrong on PrEP?” and most recently “What consensus on PrEP?”
But even with those seemingly anti-PrEP campaigns, President of AHF Michael Weinstein insists “we were never against PrEP. We have just been against it being used for a community wide public health intervention.”
Others though would strongly disagree.
“They’re backing off their earlier absolutism. In one press release it said ‘if we’re wrong we’ll happily admit that.’ I find that interesting,” said Todd Heywood, a veteran journalist who reports on HIV policy issues for many publications. “AHF is certainly changing the tenor of the debate. A debate it created by misinforming people about the studies. And now he is somewhat acknowledging that PrEP works.”
Local PrEP advocate Robert Shore, of Wilton Manors, also sees a subtle evolving change in AHF’s positions.
“I personally find it telling that AHF is offering a ‘give’ now. In that, rather than remaining blatantly bent on PrEP being ‘wrong’ from a public health standpoint,” he said. “They are now willing to admit they might have been wrong if it turns out that PrEP is good public health policy and does actually show inroads into decreasing HIV rates.”
But as Weinstein noted above, he nor AHF, has ever been against PrEP.
“We want people to read what we have to say and make their own decisions,” he said.
A Tale of Two Studies
Each side of the PrEP argument uses the original PrEP study, iPrEX, to bolster their side. AHF uses the whole study that includes even those people who rarely took the pill. The other side likes to exclude those people.
In randomized controlled clinical trials there are different ways to analyze the results. The gold standard, and what is most cited in medical journals, is the “Intent-to-treat” method, which looks at how well a drug works among everyone assigned to take it — even those who did not use it regularly, stopped early due to side effects, or for other reasons.
Another method is known as “as-treated” or “per-protocol” results, which only includes the subset of participants who actually took the drug as directed.
Usually the as-treated results will make a treatment look more effective. For instance, if a drug had strong side effects it may be effective, but not practical if too many people can’t take the drug or refuse to take it.
When looking at all of the participants in the Truvada study HIV infections were reduced by about 44 percent. But if you only look at the people whose blood had detectable amounts of the drug in their system Truvada was 92 percent effective. Looking even closer at the results show that those who became infected while on the drug, exhibited lower levels of the drug in their system, than those who did not become infected.
While each side has their own opinions, one fact is clear: the more a person adheres to the once a day regimen the more effective it is.
When SFGN asked Weinstein if he agrees with the 92 percent efficacy rate for those who take the pill daily, he said he does. Nevertheless Weinstein continued to point out that it was about adherence — not efficacy.
“The reality is people don’t take it the way they should,” he said. “People who are at most risk are not going to take it, or not take it every single day.”
And then Weinstein used himself as an example of someone that probably would not take PrEP on a daily basis.
“I am a terrible patient. I am an upper middle class person who lives a somewhat conservative lifestyle,” he said. “I don’t remember to do things. That’s just human nature.”
He points to the study saying it showed that the younger the person was the more unlikely they were to take the pill regularly.
But proponents of PrEP all agree that adherence is a problem. Their solution though is education and promoting adherence rather than discounting the drug.
“I would still like to see AHF turn their powerful marketing machinery into a tool to promote PrEP and teach, as they do through condom campaigns, the public how to be compliant with PrEP,” said local PrEP advocate Robert Shore of Wilton Manors.
Weinstein believes it’s irresponsible to tout the results of the iPrEx study without including all of the participants.
“There has been a very careless discussion about it,” he said.
A later study once again bolstered both sides of the debate. The study followed many of the participants of the original iPrEx study after it ended and offered to continue to give them Truvada. That study showed that those who took Truvada four or more days a week could be 100 percent protected. But daily adherence to the drug, which is what is recommended, was abysmal coming in only at 12 percent. And only 33 percent of the people were taking the pill four or more days a week.
But the above study also showed that those at the highest risk for contracting HIV were the ones most likely to opt to take PrEP. Eighty-one percent of the enrolled participants who chose to take Truvada reported intercourse without a condom, compared with 75 percent of those who opted not to take PrEP.
To PrEP Or Not To PrEP
The Centers for Disease Control is not telling all men who have sex with men (MSM) to go on PrEP. They are, however, recommending it for people who are negative and are at substantial risk for HIV including:
- Anyone who is in an ongoing relationship with a partner who has HIV
- Anyone who is not in a mutually monogamous relationship with a partner
- Gay or bisexual men who have had anal sex without a condom or been diagnosed with an STD in the past six months
- Heterosexuals who do not regularly use condoms during sex with partners of unknown HIV status who are at substantial risk of HIV infection (e.g., people who inject drugs or have bisexual male partners)
- People who inject drugs
The CDC estimates that about 500,000 people meet the criteria above.
Weinstein told SFGN PrEP may be good for some populations in the gay community such as serodiscordent (mixed status) couples or sex workers.
But the leader of AHF is standing by his statements to the Associated Press earlier this year where he said “If something comes along that’s better than condoms, I’m all for it, but Truvada is not that. Let’s be honest: It’s a party drug.”
The party drug label caused a stir in the gay community with people accusing Weinstein of sex shaming. And as Heywood noted above it appears he is backing away from his “absolutism” but not by much. He told SFGN he still stands by the party drug label but added “not 100 percent of the people taking it is using it for that purpose, but a large percentage of people taking it are using it as a party drug to have unprotected sex. There’s an element of people that is using it in combination with meth and other drugs as well as Viagra. People taking Truvada are not using condoms by and large.”
Weinstein goes on to warn “there is grave potential to doing harm, in pushing PrEP.”
He added that AHF isn’t afraid of going against the grain and this wouldn’t be the first time they’ve ruffled feathers with their positions.
“Over the last 28 years we’ve been the lone voice on many issues,” he said.
Some of those issues include harm reduction in barebacking (“pulling out”) and serosorting (only having sex with someone of the same status.)
“Those didn’t work out,” he said.
Weinstein also attacks the maker of Truvada, Gilead.
“Gilead stands to make 5 billion dollars if 500,000 people take this,” he said. “They’re using tons of money to promote this through other organizations.”
The PrEP revolution may be too far along though for AHF to stop it at this point. Despite their continued opposition some communities around the country, like San Francisco, are starting to embrace PrEP as a new tool in their HIV prevention efforts.
“PrEP is a central part of our HIV prevention efforts in San Francisco,” said Scott Wiener, a member of the San Fran Board of Supervisors. “It’s a part of our goal of continuing to reduce infection rates. There are various components of that, frequent testing, getting people into treatments quickly, suppressing their viral load and also encouraging them to use condoms and consider whether PrEP is right for them.”
Wiener made headlines earlier this year by coming out publicly as a user of Truvada for PrEP.
This month PrEP also makes its way to Hornet, a gay dating and hook up app. From the onset Hornet’s founders were strong supporters of HIV prevention including a ‘Know Your Status’ feature in their app. This month they’re giving users more nuanced options in regards to one’s HIV status by letting them disclose whether they are on PrEP, or are positive and have undetectable viral loads.
“Some people take a puritanical view around any kind of sexual health harm reduction measure. They stigmatize those measures and portray people who are using as reckless,” Wiener said. “They want to tell people ‘if you only have sex the way we tell you to it will solve the problem.’ We’ve seen this before with birth control and the HPV vaccine.”
The Condom Culture
Both sides though do agree on a few points, such as, condom messaging has been ineffective, with Weinstein believing there is an attack on the condom culture in the U.S.
But he admits that this “attack” started long before the rise of PrEP.
“Part of the reason is that we’re a victim of our own success,” he said. “Treatment has improved so much that people are less scared of HIV. The younger generation hasn’t lived through the worse of it.”
Justin is a part of that younger generation. Before he started bug chasing he said he did his homework about HIV and the long-term consequences. And at the time he didn’t care.
“When the point came when I got it I wanted to make sure I knew what I was getting in to,” he said. “It sounds crazy.”
When SFGN questioned whether condom messaging is effective, or still works, especially in South Florida, which has been labeled as the epicenter of new HIV infections Weinstein shot back “what condom messaging? I don’t see it anywhere.”
He continued: “Prevention efforts have really declined over the last 10 years. That’s part of the reason we’re pushing so hard on the prevention front. Such as starting the Impulse group. Spending money on advertising. South Florida is ground zero.”
And that’s why Weinstein is confident they’ve already made an impact in one of the nation’s hardest hit counties in regards to new HIV infections.
“I think that we are in the process right now of bending the curve in Broward. We’ve seen a change. We’ve tripled the number of people being screened for HIV and STDs in Broward,” he said. “We are reinventing prevention in Broward. HIV prevention has failed. If you always do what you always did, you always get what you always got.”
Weinstein looks to other Western nations like Netherlands, England, and Germany, countries he believes have done a better job. He also points to developing nations like Botswana, Senegal and Cambodia where HIV prevention is working.
Condom usage in HIV prevention is still AHF’s primary goal. They recently caused a furor in Fort Lauderdale with a racy billboard showing an unrolled condom with the words “Why Worry,” and pointing to their website UseACondom.com.
When asked about the statistic that shows only one in six men who have sex with men use condoms 100 percent of the time he said “There is a group of people that don’t have sex, people in mutually monogamous relationships. They don’t need to use condoms.”
Weinstein insists that condom usage will go down if PrEP continues to rise.
But as noted above condom usage isn’t so good right now.
In fact according to the latest study two-thirds of men reported using condoms 100 percent of the time for at least one six month slot. That’s the good news. The bad news is only 16.4 percent reported using them in every six-month slot.
Another surprising fact from the study is that condoms were only effective 70 percent of the time in men who had anal sex with men and claimed they used condoms 100 percent of the time. That means three out of 10 men having anal sex will acquire HIV using condoms 100 percent of the time. Of course, there may be other factors involved in transmission such as incorrectly using the condom.
Any study of condom usage requires participants to remember accurately and be truthful. So any study that relies on self-reporting could end up being very wrong.
But PrEP, on the other hand, does not just rely on self-reporting. The participant’s blood is analyzed to discern the level of the drug in their system making these studies far more accurate and reliable.
Weinstein Under Fire
One of Weinstein’s biggest opponents over the last year has been Eric Paul Leue, Mr. LA Leather 2014 and the Director of Sexual Health and Education at Kink.com. Early in 2014 AHF recruited the 28-year-old to participate in an HIV awareness campaign targeting the leather community. But after Weinstein began his attacks on PrEP, the relationship quickly soured, with Leue going so far as to start a petition calling for his removal as head of AHF.
PrEP isn’t the only issue that Leue is pissed off at AHF about either. Leue also strongly disagrees with the organization’s aggressive push to ban condomless porn in California. AHF supported a measure that voters approved in Los Angeles County this year through a ballot initiative, Measure B. The porn industry sued unsuccessfully. The Ninth Circuit Court of Appeals upheld the ban in December.
“This is just fear mongering. AHF is the Westboro Baptist Church of HIV prevention,” Leue said. “This is just the same repetitive messaging since the 80s. I’m 28. I’ve lost six people in my life to HIV. I believe that people have the right to make informed choices. It’s shameful for AHF to push out misinformation.”
Leue, who is HIV negative, has been in three long-term relationships with positive guys.
“I knew my statistics and my risk very well,” he said. “I knew their viral loads, their doctors. We still used condoms, but I wasn’t afraid — they were afraid of infecting me.”
Today Leue is on PrEP.
Leue and other proponents of PrEP point out that if you do miss your once a day pill you’re still protected, whereas with condoms, you’re only protected if you use them 100 percent of the time.
Weinstein defends himself saying “Part of our work is speaking truth to our own tribe. It’s not always a popular thing to do but it is necessary and important. Irresponsible elements in the gay community shouldn’t be the ones making health policy.”
What Consensus on PrEP?
In AHF’s latest campaign “What consensus on PrEP?” they have a list of 22 quotes disputing the efficacy of PrEP. The quotes come from a wide range of people from professionals like Gail Wyatt, associate director of UCLA AIDS Institute; activists like Larry Kramer; and even actor Zachary Quinto.
One of the people AHF quotes is Sean Strub, founder of POZ magazine. In the ad he says “treatment as prevention is highly effective at preventing HIV transmission, but it isn’t going to protect you from syphilis, the meningitis thingy that’s now so scary or lots of other nasty pathogens that are transmitted sexually” and “I think it’s the wrong way to address HIV prevention.”
SFGN contacted Strub, who said he had no idea he was being used in AHF’s ad. He also said the first quote wasn’t about PrEP per se but more about all of the “treatment as prevention” methods including treating people whose CD4 cell counts are above 500. Today doctors recommend HIV patients start medication right away versus waiting until their CD4 cell counts drop below a certain number.
As for the second quote he had this to say.
“There is definitely a role for PrEP in HIV prevention — which I've recognized since I first started speaking out on this topic — but that role is one determined by individuals in consultation with their clinicians and should not arise from a population-based public health recommendation,” he said. “I disagree with some of the rhetoric that has emanated from AHF and their representatives, particularly the sex negativity of some of it, but overall they are raising a number of important points that have been inadequately addressed by the public health establishment and others who seem to see PrEP as a panacea and a much larger part of HIV prevention than others view it. The PrEP discourse in the U.S. has too often boiled down to whether one is for it or against it and it just isn't that simple.”
A close friend of Strub’s and long time HIV activist, Peter Staley, admonished AHF’s new ad posting on Facebook “A new low. Weinstein has selectively quoted (stripping out larger context which often says the opposite) the following individuals in his latest anti-PrEP ads. Some might be fine with the inclusions. Most will likely feel used and abused.”
Dr. Demetre Daskalakis, who was also quoted in the ad, joked, “I am too busy implementing PrEP in NYC to worry about quotes taken out of context.”
While AHF’s latest ad spotlights a list of statements that on the surface seem to either oppose PrEP, or question it, there is a growing number HIV organizations who are openly supporting PrEP and the CDC’s new guidelines.
Syphilis and Gonorrhea and Chlamydia…Oh My!
Proponents and opponents of PrEP both agree that Truvada will not stop the transmission of syphilis, gonorrhea or chlamydia.
But supporters of PrEP believe it is disingenuous to constantly talk about the two issues together.
“Truvada doesn’t protect you from syphilis,” Weinstein said. When SFGN pointed out that syphilis can also be passed along by just skin-to-skin contact Weinstein responded, “[condoms are] 70 percent effective against syphilis. And 98 percent effective against gonorrhea and chlamydia.”
Weinstein said there’s a major increase in syphilis cases, especially in South Florida, and he’s alarmed that those cases will increase if PrEP usage gains more traction.
On AHF’s website the main story is “Syphilis Explosion” with the image of a volcano in the background. The press release describes a 10 percent increase from 2012 to 2013 in Syphilis cases.
Weinstein admitted though the increase in syphilis cases started before PrEP was a factor.
In the press releases he uses the opportunity to once again attack condomless sex saying, “While many may be hoping to soon write the obituary of the condom and welcome a new era of condomless sex, the fact remains that there are no pills that can be taken to prevent gonorrhea, syphilis, chlamydia and other harmful STDs. As these latest numbers from the CDC clearly show, condoms still matter.”
Leue pushes back against AHF’s latest syphilis warnings.
“With AHF saying previous years the number of Syphilis cases have doubled, it really is weird that now it is a 10 percent explosion,” he said. “At about 18,000 cases per year, a 10 percent increase is hardly an explosion.”
Weinstein and AHF have also blasted the CDC for changing its terminology in regards to having sex without a condom. In the past that was referred to “unprotected sex.” This year the CDC changed it to “condomless sex,” which they believe is a better and more accurate term to describe sex without condoms.
“The whole concept of ‘safe sex’ is based on HIV not all STDs,” Robert Shore said. “So claiming that ‘condomless sex’ is ‘protected’ with Truvada is just fine since PrEP has been shown to be effective when taken as directed, just like condoms have been effective at preventing HIV.”
HIV organizations across the country, including Latinos Salud, signed a letter earlier this year urging the CDC to stop using the term “unprotected sex.”
“The menu of HIV risk-reduction options now includes other options besides only condoms,” said Stephen Fallon, executive director of Latinos Salud.
The CDC’s decision was in the works before a lot of information on PrEP was even a factor.
“The increasing levels of STIs started long before the PrEP revolution. And that’s an early indicator of condom usage drop off,” Heywood said. “I would much rather get syphilis, gonorrhea and chlamydia than HIV. HIV may be treatable but it’s going to have a substantial impact on my body and how it works.”
*Justin asked that SFGN not use his last name for this story.