Until recently, George Raya couldn’t talk about the AIDS epidemic that killed hundreds of thousands of gay men in the 1980s and ’90s. He had lost half his address book to the virus during that time in San Francisco, he said, and thinking about it only brought back painful memories of dear friends.
“Instead of putting people in ink, I would put them in pencil because it was easier to erase the name than to put a line through it,” he said, referring to phone numbers in his address book. “It was that bad.”
During that devastating time, Raya was an activist on the front lines of the fight for AIDS treatment. Now he’s leading the campaign for HIV prevention by educating fellow Sacramentans about the procedure commonly referred to as PrEP. Some advocates call the push to make PrEP more accessible the next big LGBT health fight, especially as HIV infection rates rise again among young men.
“We’ve had to be self-advocates,” said Joshua Behn, health programs coordinator at Sacramento’s LGBT Community Center. “If we’re ready to put in the money and open doors and fight like we haven’t since the ’80s and ’90s, we can be ready to gear up for another huge campaign.”
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Pre-exposure prophylaxis, more commonly called PrEP, is a daily pill regimen that, if taken consistently, can protect users from contracting HIV from sex or from used needles. The only drug currently available for PrEP is Truvada, which hinders the virus’s ability to replicate itself by adding a protective shield around the body’s T-cells.
Research by the federal Centers for Disease Control and Prevention has shown that taking Truvada once a day can lower the chances of getting HIV by more than 90 percent for people having sex and more than 70 percent for injection drug users. That’s good news for people who have sex with multiple partners, those in a relationship with someone who’s HIV-positive, sex workers or anyone else at risk, said Janet Parker, director of strategy and market development at Cares Community Health, Sacramento’s nonprofit hub for HIV and AIDS treatment.
“People are saying that we now have the possibility of ending HIV,” she said. “And it’s real; it’s not just a pipe dream.”
Some critics, however, cite concerns about its cost, side effects and potential to deter condom use among a population already at high risk for sexually transmitted diseases. As insurers and hospital systems grapple with how to offer the treatment and to whom, local advocates for lesbian, gay, bisexual and transgender people are on a mission to get the potentially lifesaving drug into the hands of those who need it.
A 2015 study by the CDC showed that an estimated 1.2 million Americans – one in four gay and bisexual men, one in five injection drug users, and one in 200 heterosexual adults – are candidates for PrEP and should receive counseling about the treatment. However, only an estimated 25,000 people have taken PrEP nationally since it became available – most of them in San Francisco – and one in three physicians and nurses say they’ve never heard of it.
That may be because Gilead Sciences Inc., the drug company that produces Truvada, is mainly advertising to HIV/AIDS specialists, Behn said. And fewer professionals are going into that field as HIV rates level out and AIDS becomes a manageable chronic illness instead of a life-threatening disease.
“We’re working to increase the number of physicians in the state who are comfortable prescribing it,” said Gil Chavez, an epidemiologist with the California Department of Public Health. “We’re trying to make sure people in the community know it’s a benefit, and that if they consider themselves to be at risk, they should get it.”
An estimated 137,000 people live with HIV/AIDS in California, many of them unaware of their status, and 13 new infections occur every day, Chavez said.
PrEP has also been slow to catch on in Sacramento. The state health department’s PrEP directory lists Cares as the only provider of the treatment in Sacramento, and out of the region’s four major hospital systems, only Kaiser Permanente and UC Davis said they are actively training doctors on PrEP protocols.
Sacramento County saw 132 new HIV diagnoses in 2013, up from 74 in 2006, according to the county’s most recent HIV surveillance report. An estimated 1,530 county residents live with HIV, and Sacramento ranks 18th statewide for HIV prevalence.
While infection rates for most demographics are leveling out, they’re still disproportionately high, and rising, among Latino men and men in their 20s, said Staci Syas, STD/HIV program manager with the Sacramento County Department of Public Health.
Experts attribute the climbing Latino rates to more people having sex without condoms, and fewer getting tested for HIV. More young men may be getting HIV through unprotected sex in a hookup culture.
Since Truvada won U.S. Food and Drug Administration approval for preventive use in 2012, thousands have taken to social media to spread the word about it, and educational campaigns have been launched in San Francisco, Oakland and other cities.
Raya was living in Sacramento at the time and just starting to date again when chatter about PrEP began spreading.
Getting on PrEP wasn’t easy, he said. His general physician didn’t know anything about it and referred him to a communicable disease specialist. After several weeks of counseling and lab tests, Raya was finally prescribed Truvada. He celebrated by posting a picture of himself and his blue pill on Facebook.
“Part of what I’m about is leading by example, because it has been controversial,” Raya said. “But you don’t want people to get HIV. Once they do, it changes their lives and it adds up in medical bills and everything else. It’s much better to do prevention work.”
Over the next year, the county plans to tackle the PrEP problem by bringing “navigators” into local clinics and helping to launch sensitivity training for physicians.
“We haven’t widely used it here in Sacramento yet, but we’re getting ready to,” Syas said. “The concern with it is not only do we have a general community who may not be aware of its use, we have providers that are not aware of the protocols. In some cases, there’s hesitancy because of a lack of information.”
As part of his role at the resource center, Behn takes his PrEP pamphlets to college campuses, work trainings and health fairs to encourage people at risk to ask their providers about the treatment. On Feb, 5, he’ll host a PrEP Party at Faces Nightclub in midtown where people taking Truvada will talk about their experiences and answer questions from those interested but lacking information. The goal, Behn said, is to create a positive association around PrEP and help people protect themselves without worrying about the stigma that he says surrounds the treatment.
Cares partner services coordinator Gustavo Trejo said physicians need to help patients feel comfortable talking about their sexuality when prescribing PrEP.
“If the patient feels any judgment, he’s going to shut down and not tell you anything,” Trejo said. “Our job is to make the patient feel comfortable. The more information you give us, the more we can help you.”
Truvada for prevention costs $8,000 to $14,000 per year out of pocket. Many private insurance companies cover PrEP, and Medi-Cal started paying for it in 2014, but under certain plans it’s still unaffordable for most Cares patients. The Covered California Bronze plan, for example, has a $50 monthly co-pay for the medication, but only after a $5,000 annual deductible where the patient pays 40 percent of all PrEP-related health expenses.
Most research suggests that Truvada needs to be taken every day to be effective as prevention, though research is determining whether it could work with less frequent dosing to reduce side effects such as diarrhea and liver problems.
Dr. Jason Flamm, an HIV specialist with Kaiser Permanente in Sacramento, has been on the front lines of the PrEP campaign, having already prescribed the treatment to more than 200 patients.
Flamm said he was aware of the drug’s risks and pointed to a September study conducted by Kaiser that found that 657 people in San Francisco using PrEP for 2 1/2 years didn’t contract HIV, but about half of them acquired another sexually transmitted infection within one year. When interviewed six months in, about 40 percent of the subjects reported a decrease in condom use.
“These drugs do have some potential side effects, and the education around them is pretty significant,” Flamm said. “We’re concerned that if people don’t have the expertise to administer programs in the right way, the downsides of doing PrEP will become more prevalent.”
That’s why Flamm and a colleague are training physicians at Kaiser on how to talk to patients about PrEP. They’re also asking for additional staff and resources to work with the medication.
In the UC Davis Health System, family practitioner Dr. Katherine Gardner said she often feels like the only physician sharing PrEP information with patients. Gardner said sexual partners are not always truthful about their HIV status.
“The power to own HIV prevention as an individual really gives agency to someone in terms of what’s going on with their sex lives,” she said. “It’s so important.”
Gardner, along with the other in-the-know physicians and advocates in Sacramento, will continue to spread the word, with the goal of bringing new HIV infections in the county down to zero once and for all.
“It’d really be nice to see that curve change,” Flamm said. “There are enough pockets of places that have been more aggressive with a comprehensive approach to prevention, that we might see it spread further, from the epicenters of knowledge around HIV to the community.”
PrEP Party: Celebrate Health
Where: Faces Nightclub, 2000 K St., Sacramento
When: Friday, 8:30 p.m.
Contact: Sacramento LGBT Community Center, 916-442-0185