People in places as high-powered as Congress all the way down to local community providers and advocates have been discussing the role the price of pre-exposure prophylaxis (PrEP) plays in reducing access to people who need it. But there are other issues at work. A paper recently published in AIDS and Behavior points to the ways in which racism and homophobia in health care settings may help explain the slow uptake of PrEP among members of the community where it is perhaps needed most: black gay and bisexual men.
The researchers conducted six focus groups with 44 cisgender black men who have sex with men (MSM) ages 16 to 25 who reported HIV-negative or unknown status. Prior to attending the focus groups, the participants filled out a questionnaire to collect demographic information as well as information about PrEP use. The sessions were led by two black gay research associates, who asked participants questions about experiences of racism, discrimination, and "homonegativity" from health care providers in order to ascertain whether or not these factors impacted PrEP uptake among the group. The audio from these focus groups was recorded, and the content was coded and analyzed using a computer software program for qualitative analysis.
"We conducted these focus groups and asked a range of questions about their experiences and health care, but also beyond that, their experiences with their families and friends and communities, and trying to get at how these different types of oppressions and stigmas play out in their day-to-day lives," said Katherine Quinn, Ph.D., principal investigator of the study and assistant professor with the Center for AIDS Intervention Research at the Medical College of Wisconsin. "But one of the things that was most prominent that was actually not the main focus of our questions were their experiences in health care, because although we did ask a little bit about that, a lot of the things that they told us about their experiences and came up organically."
Barriers to PrEP Point to Experiences or Fears of Being Treated Like a Risk Factor by Doctors
From analyzing the content of the focus groups, the researchers found six themes that emerged in relation to the lack of PrEP uptake among young black MSM. These themes included lack of trust and passive-aggressive racism in health care settings, feeling reduced to their sexuality by doctors, a feeling of being at a structural disadvantage, cultural health care norms, patient-provider racial concordance, and resistance to physicians' recommendations for PrEP.
They found that even if overt forms of racism or homophobia weren't present, the participants felt like the kinds of things they experience, like long waits in emergency rooms and burdensome administrative procedures to receive care, were more present in the settings where they received care as opposed to places where more whites would be seen. They also expressed concern that while their community clinics were preferred for convenience and having more black patients and staff, the care in those places was inferior to that of major hospital systems in Milwaukee, which they felt they were intentionally kept out of. These experiences of feeling as though they were receiving inferior care seemed, according to the study, to also impact how participants viewed the system through which they would have to navigate for PrEP. Researchers noted that this is a particularly important issue locally, as Milwaukee is almost always annually ranked America's most segregated city.
But once in that system, participants also felt like they were often reduced to their sexuality by doctors. In the study, researchers noted, "In every group, at least a few participants had similar experiences of being mistreated, talked down to, or feeling like they were perceived as 'nasty'" by white physicians. The young men reported that being asked about their sexual histories weren't helpful conversations, but actually further stigmatizing, and that as soon as doctors identify them as gay, the doctors' immediate concern becomes their sex life and risk for sexually transmitted infections and HIV. This made having conversations about PrEP more problematic.
"And even if someone has health insurance and knows where to go, getting there and talking about your sexuality is a real challenge for a lot of these guys," said Quinn. "Not because of something about these guys, but because of the way that they're treated within the health care system."
But even some structural barriers can create or reinforce cultural norms that themselves become barriers, due to historically rooted medical mistrust or not having insurance through an employer or public insurance (Wisconsin's new governor has proposed expanding Medicaid but faces opposition from Republican legislators). Many of these young men may not have health insurance, and therefore, have not had the experience of visiting a consistent primary care physician over time. Seeing a primary care physician regularly helps a patient learn to navigate the health care system and become accustomed to routine check-ups -- as opposed to last-minute clinic or emergency room visits when one is really ill.
Not having these kinds of experiences can fuel some of the cultural barriers noted in the study: Many participants questioned the effectiveness of PrEP in preventing HIV or mistrusted the reasons why it seemed as though it was being exclusively marketed to them as black gay men. And while the participants expressed a desire to have black health care providers, that wasn't often the case, which created a further chasm when they were expected to heed the advice of taking PrEP from white physicians, whom they didn't necessarily trust.
Translating Findings Into Actionable Interventions
"In Milwaukee, the African-American MSM community is not as big as [in] most cities, but it's very alive," said Broderick Pearson, study coauthor and medical research associate at the Center for AIDS Intervention Research at the Medical College of Wisconsin. "And there's many individuals that are very, very empowered to be who they are, with no restraints -- but when it comes to their own personal health, it's as if they're accepting whatever is being said to them, versus taking control of their health."
One of the things researchers noted in the study was that although there were eight people who reported they were currently using PrEP in the survey taken before the focus groups, none of those young men mentioned they were PrEP users among their peers in the session. According to Pearson (a black gay man who was one of the group facilitators), this may have reflected feeling of stigma about using PrEP as gay and bisexual men.
"One thing that I remember in a focus group, I asked the participants, 'So if PrEP was offered to your brother who runs the block with his boys or your cousin who you know is promiscuous and is a female or your aunt or your mother, if it was offered to more individuals outside of the LGBT population, would it be more of interest to you?'" he recalled. "Immediately, I heard, 'Oh God, yes yes yes.'"
Both Quinn and Pearson spoke about the need to do more work with primary care providers to increase their capacity to provide care to young black MSM so that PrEP could be offered more widely. They also spoke to the need for more work to make PrEP more available to a wider spectrum of people so that black gay and bisexual men would feel less put upon by public health messaging that has produced more stigma instead of less.
"I think in the short term, one really effective strategy could also be implementing clinics, particularly PrEP clinics, in community-based settings," said Quinn. "And how can we shift the health care for PrEP from bigger hospitals or clinics or non-specialized clinics into community settings that young black gay men already know and trust?"