When it comes to getting the HIV prevention drug emtricitabine/tenofovir disoproxil fumarate (Truvada) to more than just white, cisgender gay men, real talk is essential.
But real talk, along with functioning systems, needs to be consciously designed to meet the whole-health needs of the patients who stand to benefit the most from pre-exposure prophylaxis (PrEP), said Darriane Martin, HIV prevention manager with AltaMed, a Los Angeles-based federally qualified health center that serves primarily a Latinx population.
This means that accessing PrEP can't just be about "what's below the belt," she said.
"Sometimes that need for medication is Truvada for PrEP. Sometimes it's Truvada for HIV care," Martin told TheBodyPRO. "But, really, it's about taking that guise off, that veil off, and saying, 'I need to have this honest conversation about this whole person, so I can get this person the care and services they need.'"
To do that, Martin and AltaMed are working to educate providers, remove financial and political barriers to care, and meet people where they are. Martin presented the AltaMed case study at the 2018 U.S. Conference on AIDS (USCA) in Orlando, Florida.
Caring for the Whole Person in Hard Times
AltaMed comprises 43 sites in California spanning Central and East Los Angeles, as well as Orange County. At four of these sites, they also have sexual health clinics where people can be referred for care for sexually transmitted infections, HIV, and PrEP. They have one PrEP navigator each in LA and Orange counties.
But AltaMed's outreach to Latinx and black communities is happening at a time of unequal access and growing fears. Nationally, black and Latinx communities stand to benefit the most from PrEP. But right now, it's primarily used by white, cisgender gay men. The same is true at AltaMed.
Add an increasingly xenophobic climate and increasing raids by Immigration and Customs Enforcement (ICE), and you have a double whammy, Martin said. ICE hasn't raided AltaMed clinics, but the fear of it means people sometimes skip appointments, especially for prevention drugs they may deem "voluntary," she said. Addressing these fears has been the subject of community forums and internal planning meetings.
AltaMed isn't the only organization trying to prepare. One woman from Houston told the room that her group includes about 200 Latinas, mostly women of trans experience. Many are also sex workers and undocumented. So, protecting them -- and finding coverage for them so they can afford PrEP -- has been difficult.
"There should be no barrier to PrEP access," said Ashleigh Garcia, M.S.N., APRN, of Allies for Health + Wellbeing in Pittsburgh.
Taking It Online
Acknowledging these fears, AltaMed is reaching out virtually through Kiki n' Brunch, to appeal to young gay men of color; Fierce/Ella, for Latina and black women of trans experience; and Sin Vergüenza, a telanovela aimed at Latinx communities. All are available for public use, Martin said.
"People may not be willing to have these conversations [about sexuality and PrEP] themselves," Martin said. "So, we have these videos that do that for you. And they all link to the Ask Me About PrEP website."
AltaMed is taking another tack, too: buying ads and working with dating apps like Grindr and Jack'd to highlight what PrEP can do. People who click on the pop ups and banner ads are linked to AltaMed's acuity scheduler and a peer navigator. Between April 1 and May 1, people clicked on the ads 2,813 times, 408 scheduled appointments to talk about PrEP, and 73 of these actually received a prescription for the drug.
"That sounds low," Martin said. "But these are people who went to more than one page on our site; they actually engaged with it."
Now, Martin's plan is to capture data from these clicks and reach out to the people who did everything but make an appointment, to try to bring them into care.
In Miami, one provider said, his clinic put more than 100 people on PrEP in less than six months, aided by an app the clinic had launched, as well as the clinic's website, all of which link people to peer navigators.
"People are busy working," he said. "The Latino community is afraid of ICE, afraid of the cost of PrEP, and they're also afraid they won't understand what the doctor is saying. That's why we have peer navigators to help."
Providing Care and Coverage
That fear of PrEP's cost is also real. So AltaMed and others have come up with their own strategies. AltaMed works with drug companies to give new patients seven- to 10-day supplies of FTC/TDF for PrEP. That way, people who agree to take PrEP leave the clinic with medicine while the clinic figures out how to set them up on their own prescription. This can mean working with private insurance, enrolling the person in Medicaid, or working with Gilead to get clients on Gilead's PrEP drug assistance or copay programs.
AltaMed also provides this service to teenagers who want to start on PrEP but don't want their parents to find out. That one is trickier, Martin said. The clinic can enter visit information in a way that keeps the patient anonymous. But parents will see it if their deductible suddenly changes.
If it is urgent that the parents don't know anything, then teens would either have to pay out of pocket or seek free coverage through Gilead's patient assistant program.
"[Using private insurance] does still create red flags," Martin said. "Part of the conversation [with that teen] is that: 'You are on someone else's insurance. Are you comfortable with this statement coming to your home? How would you like to proceed with this?'"
This is the big barrier that Juan Troy, M.B.A., said his clinic, the Center for Health Empowerment in Austin, Texas, faces. More than once, clients have called the clinic and said that the pharmacy called and told them that the prescription would cost $400.
"We've found that, most of the time, it's incorrect information that the pharmacy just gave the client," Troy told TheBodyPRO. "The client is now discouraged, and they don't want to go on PrEP. So, we're trying to find ways to get ahead of that."
Real Talk for Real Care
Ideally, of course, PrEP wouldn't need to be prescribed through a specific clinic; primary care providers would step in. But doing that requires a level of comfort talking to people about sex in the context of their lives. And as hard as providers try to cut the stigma, sometimes they find themselves reinforcing it. Martin said that when she returned from Orlando, she would be talking to human resources about a doctor who told a patient that, now that they'd been diagnosed with HIV, they should stop having sex. What they should be doing, she said, is talking to the patient about undetectable equals untransmittable (U=U).
"When you leave these conversations to the provider's comfort, you may not be able to have the PrEP rollout you want," she said.
So, Martin and her team are creating an update to their existing training on PrEP for providers that will include a follow-up debriefing and continued support as providers learn how to talk accurately about sexual health.
"We don't think about physicians needing additional support," she said, but when it comes to sexual and whole-person health, they often do need that support. "Having an open conversation about, 'This is the kind of sex I'm having, and this is what I want,' we have to build that efficacy and empowering those physicians to have those conversations. And that means providing a support."