Amida Care, Callen Lorde and The Center Present 'Get Schooled on PrEP'

On Monday, November 30, Amida Care, Callen-Lorde, and The LGBT Center presented "Get Schooled on PrEP," an event and webinar on the importance of Pre-Exposure Prophylaxis, launching Callen-Lorde's new "PreP 101" video series. The panel discussion featured Doug Wirth, Amida Care NY, CEO; William J. Nazareth Jr., Callen-Lorde, Director of Creative Media; Cresencio Hernandez, PrEP consumer; Andrew Goodman, MD, Associate Director of Medicine at Callen-Lorde; and Cristina Herrera, The Center, Transgender HIV Prevention Coordinator; and was moderated by Andrew Seaman, Senior Medical Journalist at Reuters Health.

"Truvada is the brand name for the drug that is tenofivir and emtricitabine, a combo of two meds in one pill taken twice a day. That it is also common for HIV treatment may surprise people," said Goodman. "One of the things we've known for quite a while is that when it comes to newly HIV-positive people, there is a good 15-20 days before it has spread through the whole body. This is a good opportunity to block it from getting into the immune system and spreading through the body, where we can no longer eliminate the infection, and can only keep it under control. The idea of PreP is: Why wait for that exposure to happen?"

Nazareth noted that if PrEP is taken consistently, it will protect you from getting HIV. Right now, Truvada is the medicine that works effectively as PrEP, although in the future, there could be other medications, as clinical trials are currently underway to provide other options. The medication is generally well-tolerated, with few side effects other than vivid dreams. If your insurance doesn't cover it, a host of other safety nets are in place to ensure you can obtain and use PrEP. But that doesn't mean you can just walk into the clinic and walk out with a prescription.

"Some testing needs to be done," said Goodman. "Rapid HIV third generation tests are only going to tell me about the sex you had a month or two ago. The window period for infection takes that long to show up, so you need to be tested first and wait for results."

He recommends still using condoms for many reasons: among them the fact that HIV is not the only STI; we want to protect our partners; and that we don't want someone to rely on PrEP forever, but instead try and develop other safer sex tools.

In addition, said Goodman, "We must remember that HIV was out there for 10-15 years before anyone recognized it. Maybe there is something else out there that we just don't know about yet."

Who is PrEP For?

PrEP is right for everyone, gay or straight, who is sexually active and at a high risk for contracting HIV.

"We have to acknowledge that young MSM of color have really high infections rates disproportionate to the population, and some have to be more aware of prevention tools so they can survive," said Nazareth. "But PrEP is not just for one population, because everyone is at risk."

Herrera said that although there is still quite a bit of stigma in the transgender community around taking an HIV medication if you are HIV-negative, PrEP with Truvada is beginning to make inroads.

"We are doing work at the LGBT Center to empower the transgender community around living healthier lives, and tell them if they are having sex with multiple partners and also using substances, these are reasons to consider PrEP," said Herrera. "The way we sell it to them is as something new for the trans community, a pill that keeps you negative, can can make sex more enjoyable. Accidents happen all the time, so knowing you have that layer of protection makes life easier."

But Herrera also warns transgender sex workers not to tell clients that they are on Truvada, because that can cause them to negotiate down on safer sex practices like wearing a condom.

The High Cost of PrEP, in Price and Stigma

Hernandez, who takes PrEP, said he first learned about the drug through Facebook. A lot of his gay friends posted articles about Truvada as a possible tool for HIV prevention, and that led him to his own exploration of the drug.

"It was not an easy decision for me," said Hernandez. "I was not an expert on anything like this; what first caught my attention was the moral implications of it and the controversy around it. It also didn't register as an option for me because I didn't think I could afford it."

Hernandez tackled the twin issues of stigma and cost when he recalled an early doctor's visit that went south. After coming out of a host of addiction issues, Hernandez wanted to get his health checked out. But when he spoke candidly with his doctor, he changed his tone and Hernandez felt judged.

"I didn't want this shame; it prevented me from seeing health care because I was already vulnerable and scared," said Hernandez. "I found my way to Callen-Lorde, knowing they catered to the LGBT community, and was able to start the ongoing process of being honest with my healthcare professional about my potential risks and the choices I make. That doctor opened the door by talking about PrEP. I didn't know it would be accessible to someone like me."

The stigma or slut-shaming around PrEP use is a hurdle that we need to cross. Being sexual comes with stigma, but doesn't change the fact that people are going to engage in sex, and can use PrEP as a tool in their line of defense.

"For me, it came down to the fact that it didn't matter what other people think, it was about me putting the power in my own hands," said Hernandez. "If we look at the losses in the '80s to AIDS, the stigma to the gay community since then, and the feelings of dread and fear I would have every time I got an HIV test, when the doctor prescribed it and said it would only be $35 a month, all that anxiety and fear I'd had... well, $35 was worth it to never have to feel that again."

Wirth noted that in San Francisco, the stigma around PrEP had lessened, because of education to older men in their 40s and 50s that changed the conversation around it being a moral choice, to it being just another tool in the arsenal to fight HIV. We can change this one person at a time, said Wirth, but the first person we have to work it out with is ourselves.

Wirth also informed the crowd that PrEP was a benefit covered by Medicaid, and one that your primary care provider could prescribe. Health plans are not allowed to get in the way of a provider and client, and if this happens, you should let someone know about it. Drug assistance programs also get the drugs from the manufacturer, and the City's End the Epidemic program will also cover it.

"The biggest thing is to start a conversation with a provider who's not judgmental," said Wirth. "We in the community will find lots of ways to get it paid for. Cost should not be prohibitive to access. People living with HIV can cost the government $600,000 in medications, or you can spend $60 on PrEP and prevent a million in expenditures. It's right for people, it's right for providers, and it's the right way for New York State to prevent HIV."

Wirth and others praised Governor Andrew Cuomo's announcement that he would add $200M annually to fund the End the Epidemic blueprint. PrEP is part of the solution for the plan to reduce the 300,000 new HIV infections.

"Gaining access to medications that help bring the virus so low it's undetectable that transmission is extremely difficult -- that's the way we're going to end this epidemic," added Wirth.

Ramping Up Education Around PrEP

Over the past year and a half, Herrera has seen more and more people talking about PrEP. But it still has not reached its ideal audience. There is a fear and ignorance around PrEP that only personal testimonials are able to dispel. Herrera's transgender clients need to hear from their peers that this is something new that works, and can make a difference. She admitted that she wished she'd pushed harder with some of her friends.

"I had three close friends diagnosed HIV-positive this year, and for me as a community educator, that makes me wonder could I have done more?" she said. "We have to work to knock down a lot of false perceptions around PrEP, especially outside of Manhattan, because that info is just not getting out there."

Goodman also noted that although the side effects of Truvada were limited to minor gastrointestinal issues and vivid dreams -- neither severe enough for people to stop taking it - the drug could cause problems for people who had kidney problems or were on dialysis. Testing must be done to determine kidney function.

"I have been on it about a year and a half, and although there was an adjustment period at first and I felt a little out of it at the beginning, it's not something I notice anymore. I have GI issues in general, so I just don't take it to close to when I've eaten, or on an empty stomach, and I'm fine," said Hernandez.

This kind of education is key to the success of Truvada as PrEP. And, adds Nazareth, we should use the latest marketing methods to in the push to educate more people about PrEP.

"We need to use the methods the music industry and retailers use to make people aware of things," said Nazareth. "That's why we are embarking on this PrEP 101 video series. At Callen-Lorde, we believe in using the methods people are actually accessing to reach them, like social media. This PrEP 101 is fun and not too hard, and has no stigma, so it's fun if you share it. You reach more people, they get exposed to that info, and if we take advantage of every tool, we'll reach the community members we didn't know were community members, because they don't come out to things like this."

Wirth said that much in the same way that he was arrested in 1991 for handing out condoms and lube for GMHC at Grand Central Station, we all must work as a community to spread the word about PrEP.

Callen-Lorde finds success by treating the individual, finding out their sexual risk, and then giving them the tools to empower themselves. Herrera goes out into the community to where transgender women are, and help engage people in general conversations about sexual health. After they see workers their regularly, people may trust them enough to be linked with services. They've also created a smart map that lists providers throughout the city. In addition, they send educators to local colleges, high school health fairs, and even a group of seventh graders in a private school.

"We try and use any opportunity we can to reach them," she said.

We must drive health insurers and the government to pay for PrEP. We need to have certain pharmacies able to fill prescriptions, and these need to be available in large pharmacies, so that people can avoid the stigma of picking up their Truvada where people might know them. Patients need to tell medical providers if they're being harassed. And if that medical provider doesn't know about PrEP, we need to refer them to the Centers for Disease Control and Prevention guidelines.

As Goodman notes, ultimately, providers are there to serve people. If they're unwilling to learn about PrEP, there are other providers across New York City that will be happy to do it -- Callen-Lorde is one of them. The mission is to see that every single community health center across New York City has a qualified PrEP primary care provider on staff by the end of 2016.

"The world is not PrEP-ready, but we're going to make the world PrEP-ready; no one else is going to do it but us," said Wirth.