Centers for Disease Control and Prevention headquarters in Atlanta, Georgia. (Credit: James Gathany for CDC)
Back in 2015, the Centers for Disease Control and Prevention (CDC) announced it would award $125 million for demonstration projects aimed at preventing HIV infections in men who have sex with men (MSM) and transgender people. Over the following three years, this program, dubbed "Project PrIDE," funded HIV prevention initiatives in 12 different health departments across the country.
Recently, many of the recipients of Project PrIDE funding traveled to Atlanta to present their findings at the 2019 National HIV Prevention Conference (NHPC). Because each city is unique, the Project PrIDE demonstrations reflected a wide range of community-informed efforts to improve outcomes and prevent new infections. ("PrIDE" is an acronym for "PrEP [pre-exposure prophylaxis], Implementation, 'Data2Care,' and Evaluation.")
Two projects in particular demonstrated dramatically different approaches to improving engagement and retention in HIV care. In New York, the city's health department made use of Project PrIDE funding to launch a project designed to demonstrate how community-based organizations (CBOs) can help bolster pre-exposure prophylaxis (PrEP) awareness among MSM of color and transgender people. And in Houston, health department staff made use of Project PrIDE's data-to-care carve-out to use existing electronic health data to identify transgender people who had fallen out of care.
Neither of these projects were set up as scientific research studies. Rather, they were designed specifically to meet the needs and nuances of the communities they were trying to serve.
New York: A Tale of Two Models
Like many cities, New York is looking for ways to improve patient retention and PrEP awareness among those who are most at risk for HIV. In 2017, with the help of Project PrIDE funding, the New York City Department of Health and Mental Hygiene launched a project that it hoped would capitalize on the success of CBOs at engaging black and Latinx MSM and transgender people in the city.
The city piloted a project that would incorporate CBO providers into existing PrEP navigation programs and embed CBO staff directly into city-funded sexual health clinics (New York refocused and rebranded its sexually transmitted infections clinics into centers for sexual health prevention and care). All staff received the same PrEP training. Throughout the eight-month pilot, the health department collected PrEP-related outcomes and monitored engagement among MSM of color and transgender people. Findings were presented at NHPC by Lena Saleh, Ph.D., the director of program planning and prevention at the Bureau of HIV/AIDS Prevention and Control with New York City's health department (Abstract 5727).
"We were particularly interested in assessing the feasibility of embedding CBO-employed staff in our sexual health clinics, as this was viewed as a potentially promising model given the clinics' experience engaging key priority populations, and the CBOs' experience with navigation in other settings," Saleh said.
At the sexual health clinics, 284 patients were screened for PrEP and 49 patients (17%) got a prescription. In the CBO-incorporated model, 368 patients were screened for PrEP and 27 patients (7%) got a prescription. Engagement of transgender patients was low in both models. None of the 17 transgender patients screened for PrEP in the CBO-incorporated model ultimately received a prescription, and three out of five received a prescription at the sexual health clinic model.
The total number of transgender people screened for PrEP was so low that researchers dug deeper in their data to understand how to better reach this population. Their data suggested that although community navigators were successful in reaching transgender patients, they were not successful in referring them to PrEP providers. Meanwhile, sexual health clinics get a very low number of transgender patients overall, although those they do see are more likely to receive PrEP.
Ultimately, Saleh and her colleagues concluded that both models were successful for black and Latino MSM, though more work was needed to bolster engagement of transgender people. However, Saleh added that it was impossible to directly compare the CBO-incorporated model against the traditional sexual health clinic model "due to differences in the models' eligibility criteria and definitions of the service elements."
Houston: Harnessing Data to Prevent HIV
In Houston, meanwhile, health department officials took direct aim at the city's poor record of engaging transgender people in care. To tackle this problem, health department officials made use of Project PrIDE funding to leverage the city's existing electronic health records (EHR) to identify which of their patients were likely to identify as transgender, and which of those trans-identifying individuals had been lost to follow-up.
Because electronic medical record forms are often not designed to be trans-inclusive, it's difficult for HIV care providers to properly identify which of their patients are transgender or gender nonconforming.
"The invisibility of this population prevents us from properly serving them," said Raven Bradley, M.P.H., staff analyst for the City of Houston and lead author of NHPC Abstract 5967. According to Bradley, the Houston health department wasn't accurately capturing all the transgender people who passed through city services, so they weren't all identified accurately in surveillance systems. In 2010, for example, the city only identified 29 transgender people living with HIV, while the Ryan White program served 68 transgender people living with HIV the following year.
"We looked at our own system," said Bradley, and asked, "Does the system even have the capacity to [identify] trans people?"
Bradley and her colleagues developed a data-to-care demonstration project that made use of existing EHR to relink HIV-positive transgender people to care. First, they combed their existing EHR data, searching for discrepancies in the gender-identity data. Based on this sweep, they identified 104 individuals who were likely to be transgender or gender nonconforming. Of those, 39 were successfully located by a health service worker, and 28 were eligible for service linkage (meaning they had fallen out of care). Of 17 completed intakes, eight clients were confirmed to be transgender.
In addition to looking back at prior EHR data, Bradley and her colleagues also built new tools to track sexual orientation and gender identity. Finally, they consulted with transgender people to provide cultural humility trainings to frontline and surveillance staff who would be responsible for inputting those data.
According to Bradley, city health department staff and service providers learned a lot about the key barriers to accessing care from the transgender people who they ultimately relinked to HIV services. Chiefly, those barriers were housing, transportation, and the stigma they felt from service providers when accessing services.
"There is not really a competency to serve this population in the way they deserve," she said.
Across the country, MSM and transgender people -- particularly those of color -- have the highest risk of HIV acquisition, yet cities continue to fail to reach them for HIV treatment and prevention services. Various Project PrIDE demonstration studies, such as those in New York and Houston, show that properly funded and well-designed outreach programs can impact a city's ability to provide better services for those specific populations.
For other cities facing similar HIV prevention and retention challenges, the Project PrIDE demonstration projects may serve as models for health departments hoping to launch new programs to improve HIV outcomes.
Sony Salzman is a freelance journalist reporting on health care and medicine, who has won awards in both narrative writing and radio journalism. Follow Salzman on Twitter: @sonysalz.