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Why aren’t more gay men on the HIV pill?

The drug Truvada can reduce the risk of HIV infection by up to 99 percent, but it faces pushback from an unlikely source

Damon Jacobs has lost so many people he's loved that he said he's become numb to it. For the first two decades of his sexual life, he lived with the constant fear of contracting HIV.

“It seemed like it was going to be this never-ending thing that I was going to have to be coping with my entire life," said Jacobs, a therapist in New York City.

Then, two years ago, the FDA approved the first drug to prevent HIV infection. Truvada is part of a new class of drugs called PrEP, or pre-exposure prophylaxis, which blocks the ability of HIV to reproduce. If taken every day as directed, Truvada can reduce the risk of infection by 99 percent, one National Institute of Health-funded study found in 2012.

Since it was approved in July 2012, Jacobs has taken the little blue pill every day and says it’s completely changed his sex life.

“I can’t think of anybody who has died who wouldn’t have taken PReP if they had had the option to do so,” he said.

But now that people do have that option, not many are taking it.

Last week, the World Health Organization strongly recommended that men who have sex with men and might have substantial risk of infection consider taking PReP, along with the use of condoms. But from January 2011 to March 2013, fewer than 1,800 Truvada prescriptions were filled in the U.S. – and nearly half of the patients were females, according to a study by drugmaker Gilead Sciences.

A hard pill to swallow

Those leading the charge against PrEP may come as a surprise; many are AIDS activists. The multinational AIDS Healthcare Foundation, for example, has been vehemently fighting Truvada for two years. It even urged the FDA not to approve it.

“We believe, based on our experience being the largest AIDS organization in the world, and providing care to 300,000 worldwide for over 27 years in many, many countries, is that the vast majority people who take PrEP will not be able to remain adherent,” said Tom Myers, the spokesman and general counsel of AHF. “If they are not adherent, there is a potential that their risk of HIV infection increases rather than decreases.”

In other words, people on PrEP may stop using condoms and forget to take the pill every day, and become infected with HIV.

One 2010 multi-nation study of “high-risk” gay men, transgender women and other men who have sex with men showed that while PrEP lowered the infection rate by 73 percent for people who used the treatment more than 90 percent of the time, fewer than half of patients took the pill every day, as prescribed.

“Those people are likely the people who would not be giving any protection anyway, said Dr. Anthony Fauci, one of the nation’s leading HIV experts. “So I think you don’t want the perfect be the enemy of the good.”

Fauci, the director of the National Institute of Allergy and Infectious Disease, believes PrEP could even mark the tipping point of the epidemic.

“We have had the misfortune, as a generation, of seeing one of the most devastating pandemics in the history of mankind,” he said. “Now we have the opportunity for the next generation – my children – to see that point where we can actually rid the world of this pandemic. I'm going to be here when they nail that coffin.”

New drugs, old fears

Anthony Fauci, who has cared for HIV and AIDS patients since 1981, remembers when the arguments now made against Truvada were made against the first effective HIV therapies.

Now, Fauci’s agency is funding clinical trials to look at adherence rates among patients who elect to take the drug, not just paid participants.

In the New York trial, more than 95 percent of participants reported no problem taking the drug, according to Sarit Golub, who’s overseeing it. They’ve enrolled 120 people so far, and have a waiting list of 90.

“I think it’s a really exciting new strategy for preventing HIV, and it’s been so long since we’ve had a breath of fresh air in HIV prevention,” she said.

And the fear that people on the drug will go out and have more unprotected sex is just the latest form of an old paranoia, she said.

“It is akin, I think, a lot to some of the press or negative concern that happened over the oral contraceptives, when those were first made available to women,” Golub said. “This idea that … all of the sudden they'll start to go wild in some ways. So I think that's one concern that really has not borne out.”

But that comparison doesn’t sit well with Myers of AHF.

“I think there is a big difference between unplanned pregnancy and acquiring a potential fatal disease,” he said. “And there are adherence problems even with birth control, there are unplanned pregnancies, so again I don't think the analogy holds.”

These fears are also very familiar to Fauci. He started taking care of AIDS patients in 1981 and watched a lot of people die for a lot of years before the first effective therapy came out in 1996.

“People would say, 'Well, now that you have therapy for HIV, then people are going to be more careless and go out and get infected,'” he remembered. “That's true, some might. But I would rather have a therapy for HIV and save hundreds and thousands, if not millions, of lives than having no therapy because some people, since therapy is available, might be practicing risky behavior.”

#TruvadaWhores

Damon Jacobs at New York City's gay Pride March, spreading the word about Truvada.
America Tonight

New York Gov. Andrew Cuomo appears to believe in the potential of PrEP. The morning of the New York’s gay Pride parade last month, Cuomo announced his plan to end the AIDS epidemic in the city by 2020 that included significantly lowering the price of PrEP. Right now, it costs $13,000 a year, but Medicaid and most insurance cover it.

“We think it is a big deal because no government entity in the world has yet committed to ending HIV by a particular day, and really this is the first time in the history of the epidemic we have all the tools to do it,” said Jim Eigo a New York City AIDS activist, although he acknowledged that the number of people taking prevention drugs needs to soar for that to be realized.

Jacobs believes the fundamental issue is awareness. Wearing a T-shirt emblazoned with #TruvadaWhore, he hustled people at the Pride March to spread the word about PrEP. He said it's frustration and anger that drives him.

Recently, Jacobs caught up with a 24-year-old friend he hadn’t seen in a while.

“He looked at me and his face just dropped. And his eyes got watery and he said to me, 'I just tested positive four months ago. Why didn't you tell me? Why didn't you tell me there was a way to stay negative? I would have taken it,’” Jacobs recalled. “And what could I say? Because he was right. I didn't tell him. I had failed him. The community, the prevention community had failed him.”

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