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HIV/AIDS Advocates: PrEP controversy makes job difficult
by Ben Sanders
2015-09-30

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HIV/AIDS remains a serious problem within the LGBT community. According to the Centers for Disease Control and Prevention ( CDC ), in 2013, "gay and bisexual men accounted for 55 percent of the estimated number of persons diagnosed with AIDS among all adults and adolescents in the United States," and "review of studies of HIV infection in countries with data available for transgender people estimated that HIV prevalence for transgender women was nearly 50 times as high as for other adults of reproductive age."

Despite those numbers, Adolfo Luna, the campaign manager for pre-exposure prophylaxis ( PrEP ) at Chicago House and Social Service Agency, and his colleague, Sergio Tundo, are having a difficult time referring individuals who are at risk for HIV for services related to PrEP. Individuals who are currently most at risk for HIV infection include Black men who have sex with men ( MSM ), MSM ages 18-24 and transgender women.

The PrEP intervention primarily involves taking an oral medication, available in the United States as the pill Truvada. Persons taking Truvada for PrEP are directed to take the pill daily, and regularly undergo blood work screenings and checkups to ensure that the intervention is working. According to San Francisco AIDS Foundation, "PrEP protects against HIV infection much like a malaria pill protects against malaria or a birth control pill protects against pregnancy." PrEP is also the only current biomedical intervention against HIV infection that is currently widely available to an HIV negative person.

Luna's team has, since the beginning of the year, referred 40 individuals to Howard Brown Health Center ( HBHC ) for PrEP; their goal is to have 80 persons referred to HBHC by the end of 2015. Chicago House referred 20 individuals to other area providers for PrEP as well this year.

Thus, they're a little behind at this point, but that's not Luna's fault; the group of people he's targeting lack the resources that other segments of the LGBT population might have. And according to Jim Pickett, director of prevention advocacy and gay men's health at the AIDS Foundation of Chicago, this problem is not unique to Luna. He said that organizations all across the country are having a difficult time enrolling at-risk populations.

"From what I can see across the country and in Chicago, the highest uptake is among middle-age white guys," Pickett told Windy City Times. "And there are middle-aged white guys who are vulnerable to HIV and I don't begrudge anyone taking advantage of prevention tools—hat's the goal. But the fact is that middle-aged white guys are not the population where HIV is hitting the hardest in our country. It's hitting the hardest among young gay Black men and among transgender women, and we aren't seeing large uptakes in those populations yet. So we have a lot of work to do."

A huge problem right now for Luna is that people are still misinformed about PrEP and don't view it as a worthwhile intervention, he said. He realized this first-hand while doing outreach work at the event known as Andersonville Midsommarfest in June.

"I don't know if they were joking or not, but some people were saying, 'Oh I'm on PrEP,' and then were like, 'Oh, I'm kidding,'" Luna said. "And others were like, 'Oh, no thank you,' and just grabbed the condoms."

Clearly, he and Tundo have a long way to go before PrEP is universally well regarded. The difficulty is highlighted by the fact that it's a relatively new drug; the FDA didn't approve Truvada for PrEP until 2012.

"It's only been around for three years," Luna said. "That being said, implementation and programs to actually get it out there and for people to actually use it is an even newer task to be dealt with.

"There's a lot of work to be done," he added. "It's about learning by doing."

His difficulty enrolling individuals is heightened by five other key factors.

For one, there's a prevailing viewpoint among many young men that the devastation of HIV/AIDS was just a thing of the past. They feel that it is no longer something they should worry about, because they weren't raised in the '80s and early '90s, when this disease was at the forefront, according to Luna.

"HIV is such a big problem among young men, 18-24, because they are so far removed from that era, so they don't see it as a risk and a death sentence like they used to, which is why they are more likely to have condomless sex," Luna said.

Second, there's plenty of concern right now within the LGBT community that individuals on PrEP will be more likely to engage in risky behavior. But the data would suggest otherwise: A 2013 report published in the Journal of Acquired Immune Deficiency Syndromes indicated that there was no evidence that gay men on PrEP engaged in riskier sexual behavior.

"There's no data that shows that somebody [on PrEP] is more inclined to be having condomless sex, or is more at risk for STIs, or is engaging in sex more frequently," Luna added.

Third, there's the reality that many doctors are still either unfamiliar with PrEP or uncomfortable prescribing it to their patients.

"It's been slow but rewarding," Luna said about the process of trying to inform the medical community about the facts related to PrEP. "Slow in that it's difficult to engage with medical providers, because we're a social service agency and we don't have access to networks that a medical provider would…but when we do tap into some networks of providers, it's rewarding because usually they receive the information pretty well and understand the value that this [PrEP] can have in impacting HIV and AIDS."

Fourth, many people, even if they are aware of PrEP, aren't sure if the intervention is effective. For example, some statistics suggests that PrEP has less than a 50-percent effectiveness rate, but those studies show those numbers increasing dramatically when testing subjects took Truvada as directed.

Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, told Windy City Times that any study claiming that Truvada has less than a 90-percent effectiveness rate is one in which subjects aren't taking the drug as instructed.

"If you take the pill, as directed, every day, without a doubt, and you can document that there's blood levels that prove that you've taken it, it is virtually 95-plus percent effective," he said. "When you don't take the medication, you can get infected… Whenever there is an inadequate result [in a study], it is always related to adherence."

Lastly, there's the issue of expense. Truvada for PrEP is about $1,500 a month, but there are four separate assistance options available, depending on one's situation: The Gilead Co-pay Coupon Card, for individuals who are insured; Gilead's U.S. Medication Assistance Program, for HIV-negative adults who aren't insured and meet certain income restrictions; Partnership for Prescription Assistance Program, which helps uninsured Americans pay for prescriptions at little to no cost, as long as they meet certain requirements; and the Patient Access Network Foundation, a co-pay assistance program, which requires that the patient is insured, resides in the U.S., and makes less than 500 percent of the Federal Poverty Line, which was about $58,350 in 2014.

One financial issue that arises frequently is that none of these programs cover the cost of the four doctor appointments and the four lab visits for blood work that are required each year in order to stay on PrEP. Luna acknowledges that this is a big barrier for enrollment, especially considering that the at-risk community for HIV isn't financially stable. According to Movement Advancement Project ( MAP ) and Center for American Progress ( CAP ), trans people are nearly four times more likely to have a yearly household income below $10,000; and CAP reported that Black male couples have a poverty rates of 14.4 percent.

However, Luna doesn't believe that all of these hurdles are insurmountable. As far as finances are concerned, he said that people "who aren't insured or have really bad insurance" and aren't eligible for the sliding fee scale will be able to receive coverage from the Affordable Care Act as it continues to expand.

In addition, Luna hopes that as more people learn the true facts about PrEP, its image will change—for the better.

"Once quantitative data shows that's it's a successful and effective intervention I think it's going to, one, debunk a lot of the myths and fears around PrEP and, two, help incorporate that into conversations about safer sex," he said.


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