State health departments were most likely to refer heterosexual adults for HIV preexposure prophylaxis (PrEP) appointments and least likely to refer transgender and Black adults, according to the results of a 12-city PrEP demonstration project.
The project, Project PrIDE, was meant to close the PrEP gap between White and cisgender adults and their Black, Latinx, Native American, and transgender peers.
“Black people appear to be less likely to be engaged in PrEP services than other racial and ethnic groups,” Jarvis said at the virtual United States Conference on HIV/AIDS (USCHA) 2020. “We also saw this trend among Black MSM [men who have sex with men], as they had lower PrEP uptake than other racial/ethnic MSM groups.”
The federal free PrEP program Ending the HIV Epidemic: Ready, Set, PrEP on October 29. Inasmuch as obtaining PrEPs requires a prescription, bridging this referral gap will be key to achieving that goal in the United States.
“The disparities in HIV incidence and health outcomes among transgender persons reflect profound inequities, ones that are present and don’t need to be,” said Jonathan Mermin, MD, MPH, director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. He was speaking at USCHA’s closing plenary. “We are working to ensure that HIV does not become a part of these other life stresses.”
Demonstrating Transgender Inclusion
Project PrIDE was funded by the CDC in 12 locales, including New York City, Baltimore, San Francisco, Louisiana, Michigan, Colorado, and Tennessee. Its goal was to collect more data on and increase access to PrEP in underserved populations of MSM and transgender adults, particularly communities of color.
It makes sense. After all, young Black MSM make up a small part of the population but accounted for 26% of new HIV diagnoses in 2018, according to the CDC. Data suggest that transgender adults, particularly Black women of transgender experience, have inequitably high rates of HIV. One study suggested that 14% of transgender women have HIV, and that’s the figure that Mermin used at USCHA.
But early studies of PrEP included few transgender people. Transgender adults have expressed concern over the fact that the medications used for PrEP were not initially tested in large enough numbers of transgender women and that tenofovir disoproxil fumarate, one of the drugs in the HIV prevention pill Truvada (Gilead Sciences), could reduce the effectiveness of feminizing hormones for transgender women. That turned out not to be true, as evidenced by results of early studies. Although Black Americans make up about half of those who could most benefit from PrEP, they account for only 1% of PrEP users. Since 2012, when the FDA approved Truvada for PrEP, activists have been pushing for more projects that make PrEP available to transgender people and people of color.
Low Referrals, High Prescriptions
Project PrIDE is one response to that.
Between 2015 and 2019, Project PrIDE demonstration projects screened 69,438 people for eligibility for PrEP and referred 75% of those to a provider for a prescription. But the referral rates were lowest for transgender adults overall — only 68% of transgender adults who were screened were referred for PrEP appointments with a clinician. By comparison, 78% of heterosexual adults and 75% of MSM received referrals. Overall, 25% of those screened for PrEP ― 11,356 people ― eventually received a PrEP prescription.
Referral rates were lowest for Black Americans: 70% of Black participants received a referral, compared to 72% of White participants and 85% of Latinx.
Once patients were referred to a clinician, the numbers tell a different story. Heterosexual adults, who were most likely to receive a referral, were the least likely to end up with a PrEP prescription — 7%, compared to 35% of MSM.
Only 32% of transgender adults in the population went to an appointment to discuss PrEP, but once they did, most did receive a prescription. In the end, transgender adults were the second most likely group to receive a PrEP prescription. More than half — 57% — of those who received a PrEP prescription were Black or Latinx.
“We’re doing a good job screening eligible clients” of transgender experience, said Erin Starzyk, PhD, supervisor at the Colorado Department of Public Health and Environment, of her state’s participation in the demonstration project. “Once clients get enrolled in our system, they become engaged. We do a really good job of navigating them around the system.”
But it’s that chasm between screening for eligibility and referring to a clinician where the continuum of care drops. In Colorado, the drop was from 133 transgender adults eligible to 36 referred — meaning only 27% of transgender adults who were eligible received a referral for PrEP.
“Where we really see the drop, and we see this at a national level, is going from eligible to referred,” she said. “So a lot of our work is around, ‘What were those barriers?’ “
No answers were presented in the prerecorded session.
Toolkits to Assist Providers and Health Departments
Because the federal Ending the Epidemic plan works through state health departments, those will be critical questions to answer. That’s why the CDC recently launched a toolkit for providing HIV prevention services to transgender women of color and recently changed guidelines to expand access to at-home HIV testing for transgender adults and people from racial and ethnic minorities, said CDC’s Mermin.
How to reach transgender adults is something government agencies have some experience with, said Harold Phillips, MRP, the chief operating officer of the Department of Health and Human Services’ Ending the HIV Epidemic: A Plan for America.
“The programs that were most effective were the programs that hired trans women of color,” Phillips said at USCHA’s closing plenary, referring to a program on HIV care for transgender women. It was important to hire at all levels, he said: “as peer navigators, to help direct and design the program, as program directors.”
United States Conference on HIV/AIDS (USCHA) 2020: Workshop 4: PrEP Uptake Among MSM and Transgender Persons—Project PrIDE; Closing Plenary: Federal Perspectives on EHE Efforts in the Era of COVID-19. Presented October 21, 2020.
Heather Boerner is a science and medical reporter based in Pittsburgh, Pennsylvania.