Back HIV Prevention Pre-exposure (PrEP) HIV PrEP Forum Discusses Research, Personal Experiences, and Access

HIV PrEP Forum Discusses Research, Personal Experiences, and Access


Nearly 100 people gathered on January 11 in San Francisco's Castro neighborhood to learn about the latest research on HIV pre-exposure prophylaxis -- better known as PrEP -- and how they can get help paying for it.

"Every day more San Franciscans are accessing PrEP, but only 1 in 6 people who could benefit are getting it," said Tim Patriarca, Director of gay men's health and wellness at the San Francisco AIDS Foundation, which organized the "open house" event.

"I can't think of a more optimistic time [in the AIDS epidemic]," added San Francisco supervisor Scott Wiener, who disclosed his own PrEP use in September. "With PrEP and other interventions, we can now see the end of HIV."

PrEP Research

San Francisco AIDS Foundation medical direct Robert Grant of the UCSF Gladstone Institutes gave an overview of the latest scientific data on PrEP. Gilead Sciences' Truvada (tenofovir plus emtricitabine) taken once-daily is currently the only PrEP regimen approved by the U.S. Food and Drug Administration, but several others are under study.

"PrEP works if it's taken, and there's some forgiveness for an occasional missed dose," Grant summarized. "We cannot make any guarantee that someone taking PrEP won't get infected, but it if happens, it's rare."

In the international iPrEx trial, for which Grant was principal investigator, daily Truvada reduced the risk of HIV infection for gay and bisexual men by 44% overall, rising to 92% among participants who took Truvada as directed. In an open-label extension phase of the study there were no new infections among men whose blood drug levels indicated that they took the drug at least 4 times per week.

While only about one-third of people in the open-label extension managed to achieve this level of adherence, San Francisco's PrEP demonstration project, conducted by San Francisco City Clinic, found that 92% of participants took Truvada at least 4 times weekly.

In October the U.K. PROUD trial announced it would offer daily Truvada to all participants after preliminary results showed a protective effect. Soon thereafter the French IPERGAY study -- looking at "on demand" PrEP taken before and after sex -- stopped its placebo arm after seeing unexpectedly high effectiveness in the Truvada arm. Data from these trials are expected to be presented in February at the annual Conference on Retroviruses and Opportunistic Infections.

Grant emphasized that daily Truvada dosing is recommended, as this provides the most forgiveness and fosters daily habits. Also, people may be most likely to miss a dose when they use recreational drugs or alcohol -- which is also when they're more likely have risky sex -- and daily dosing would cover this, he explained.

For people starting PrEP, it takes 7 days on Truvada to be protected from HIV infection through anal sex and 20 days to be protected during vaginal sex, according to the Centers for Disease Control and Prevention (CDC). The data is less clear for people who want to stop PrEP, but Grant recommends staying on Truvada for 28 days after the last sexual exposure -- in which case it also works as post-exposure prophylaxis, or PEP.

Most experts expect that people will not use PrEP forever, but will go one and off as their risk changes.

"We want to get beyond the notion of risky people -- there are risky situations, and people move in and out of risky situations," Grant said. He added that breaking up a relationship "is not necessarily a good time to stop PrEP," as sexual opportunities may be less predictable.

Other PrEP candidates in development include the HIV entry inhibitor maraviroc (Selzentry), now used for treatment, and the experimental long-acting injectable cabotegravir. While these and other drugs looked promising in monkey studies, "the soonest any alternatives could become available would be 2019-2020," Grant estimated.

PrEP Users Speak

A panel of PrEP users described their experience using Truvada for prevention under different circumstances.

Poppy Rock (not her real name) took PrEP while trying to conceive a child with her HIV positive husband, as described in Heather Boerner's recently published book Positively Negative.

Rock's primary care doctor, who she first asked about using PrEP, refused to provide it and would no longer treat her if she did so. Her mother said she would not be happy about the pregnancy until Rock received a negative HIV test. Despite this lack of support, Rock had a successful pregnancy, gave birth to a healthy infant, and is now looking towards "Prep Baby #2."

"There are a lot of women in my situation, but I felt like I was the only one in the whole world," Rock said. "Make sure you have someone you can tell who will be supportive, know what your own reasons are for taking it, and stay true to it."

Paul Urban started taking PrEP because one of his partners is HIV positive. His doctor readily prescribed Truvada when asked and he uses an app to remind him to take it regularly.

"I think as long as I'm able to have sex, I’ll be on PrEP," said Urban, who gave his age as 52. "I prefer the intimacy of not using condoms, and we all know that in the heat of the moment, we don't use condoms." He added, "I know too many people who commit to monogamy but accidentally or intentionally stray. I've seen enough of that to know I don’t want to take those chances."

Adam Zeboski, an HIV counselor known for starting the #TruvadaWhore meme, has been using Truvada for about 2 years, starting in the San Francisco City Clinic demonstration project. His social media and hook-up app profiles state that he is on PrEP and is willing to talk to people about it.

"I started [PrEP] because I care about my own health and my community," Zeboski said. "[I experienced] a drastic decrease in fear, anxiety, and stress, and I'm so happy to be on it now." He added, however, that San Francisco is a "PrEP bubble." "People [here] are very knowledgeable, but in other parts of the state or country it's not that easy."

Nadji Dawkins, who receives Truvada through the East Bay AIDS Center's CRUSH Project for young people of color, said he started PrEP because he"didn’t want to have a fear of catching HIV."

"I thought once I was in a relationship I would probably stop, but now I think I may stay on it, it's become such a habit," he added. "When there's something that's beneficial for your health, why not take it as long as you know the risk? Don’t let other peoples words prevent you from keeping yourself healthy -- there's nothing wrong with having sex."

The panel’s experiences illustrate the variability in doctors’ willingness to provide PrEP. The Bay Area Perinatal AIDS Center has compiled a list of local providers who are knowledgeable about and willing to provide PrEP, both for women trying to conceive and for others at risk for HIV infection.

Barriers to Access

Much of the open house focused on how to get access to Truvada for PrEP, which costs about $1000 per month at full price. Medi-Cal and many private insurers cover PrEP and Gilead offers payment assistance programs, but restrictions leave many people falling through the cracks.

Bronze level plans available through Covered California (the state's Affordable Care Act exchange) have lower premiums than silver, gold, or platinum plans but require higher copayments and deductibles for services and prescription drugs, explained Matt Sachs of SFAF's Magnet sexual health center. Some plans require members to pay a several thousand dollar deductible before coverage kicks in.

Many people who chose bronze plans find that they will not pay for Truvada for PrEP. But during Covered California's open enrollment period -- which runs through February 15 -- they have an opportunity to select a new plan that provides better coverage.

Covered California’s open enrollment period "offers an opportunity to re-examine your coverage," said Courtney Mulhern-Pearson, SFAF's director of state and local affairs. "Until there’s something you need, you may not even consider whether it’s covered."

SFAF, Project Inform, and several other agencies have put together a guide to help state residents find appropriate plans that include coverage for HIV and hepatitis C treatment or PrEP. An accompanying guide to Covered California's 2015 drug formularies details the availability of specific drugs through each plan.

Ruben Gamundi, Gilead's associate director of medical affairs, explained that the company has a patient assistance program for people who are uninsured or underinsured, as well as a copay card that covers up to $300 per month. The copay card is available to anyone and can be obtained at many doctor's offices, pharmacies, and AIDS service organizations.

"Copay cards great for people with relatively low monthly copayments, the issue is the deductible," Gamundi said. "Ask yourself if you can afford a plan that's a little more expensive but can get the deductible down to level where you don’t pay anything with the copay card."

Despite the Affordable Care Act, many people remain uninsured or underinsured. Some insurance companies have classified Truvada for PrEP as a specialty drug and some require pre-authorization. Also, a federal law prohibits drug companies from offering assistance to people who receive federal benefits like Medicaid or Medicare.

"The city knows this is an issue, and when it funds a PrEP program it is likely to first come up with assistance for people without coverage or who fall through the gaps," said Robert Blue of City Clinic.

Blue and Sachs were recently hired as "navigators" under San Francisco's new program to expand access to PrEP. Initiated by Supervisor David Campos and passed by the Board of Supervisors in October, the program received approximately  $300,000 for counselors to help people obtain Truvada for PrEP through existing channels.

Advocates are urging the city to also allocate funding for a PrEP drug assistance program to pay for Truvada for people who cannot get other coverage. Washington State started the first "PrEP DAP" and a similar effort is underway in New York.