Lamar Shambley began dating his ex-boyfriend about a year after the FDA approved PrEP, a once-daily oral pill used to reduce a person’s risk of contracting HIV through sex. He now looks back on that relationship in near disbelief: The two mostly had unprotected sex together and he admits he wasn’t always sure of his partner’s HIV status.
“I was just thinking the other day, ‘Damn, I had no idea what PrEP was then,’” the 30-year-old high school teacher, who identifies as gay and black, told HuffPost. “I could have very well [contracted HIV] in those two and half years.”
Shambley started taking PrEP, or pre-exposure prophylaxis, in August 2016 ― about a year after he first heard about it. The pill, which combines two HIV medicines, has been growing in popularity within the LGBTQ community since its approval in 2012. And for good reason: A daily dose of PrEP reduces a person’s risk of contracting HIV from sex by more than 90 percent.
But that popularity has not extended to everyone in the community. Queer black men, for example, are far less likely than their white counterparts to take PrEP.
A recent report from the Centers for Disease Control and Prevention found that while 50 percent of the 1.1 million Americans ― 500,000 people ― who could benefit from PrEP were black, African-Americans accounted for only 1 percent of those filling PrEP prescriptions ― just 7,000 people.
That’s particularly noteworthy because black men who are gay or bisexual are overwhelmingly affected by HIV compared to any other group in the United States, accounting for 26 percent of new HIV diagnoses in 2016. Seventy-five percent of these men were between the ages of 13 and 34.
This disproportionate impact on the queer black community continues despite the fact that the U.S. has seen an overall decline in the number of new HIV diagnoses — which fell 18 percent from 2008 to 2014.
CDC researchers largely attribute the drop to public health efforts encouraging people to get tested or start HIV treatment, which potentially can make the virus undetectable and untransmittable in a patient. The agency says PrEP may have also played a role in preventing new HIV diagnoses during that time.
But the uptake of PrEP among queer black men remains low and reflects broader health disparities affecting the black community in the U.S. ― from higher maternal mortality rates to lower heart attack survivorship. Those inequalities are due to a confluence of factors, including more limited access to health care, higher rates of unemployment, lower incomes and social stigmas.
Experts say the discrepancy in PrEP usage can also be attributed to insufficient outreach to queer black men and a mistrust of medicine within the black community rooted in a long and painful history of racial injustices by the medical establishment.
Public health advocates say understanding these dynamics and using more culturally-competent messaging is key to increasing PrEP uptake in the black community ― a population that, they insist, already has an appetite for information about the pill.
When Phill Wilson, founder and CEO of The Black Aids Institute, analyzed the data on PrEP uptake from the CDC, he was hardly surprised to see how few black Americans are taking the pill. “One of the reasons is because there has not been a large enough, robust enough, effort to even introduce PreP in those communities,” he told HuffPost.
Wilson, who has spent nearly 20 years at the head of the institute, described initial messaging for PrEP as geared mainly toward white gay men. Little to no attention was given to black and brown communities, or women, until recently, he said.
“It’s like you release a movie and you do not advertise it or promote it, at all,” he mused. “And then you wonder, ‘Why didn’t anyone come to my movie?’”
PrEP Outreach Has Traditionally Skewed White
The San Francisco Department of Public Health, like many city health agencies, has grappled with how to effectively introduce PrEP to the black community.
A city official acknowledged that a 2016 PrEP campaign failed to reach the city’s black residents in part because public ads featured overly sexualized black and brown people partying and drinking ― negative stereotypes that repelled potential patients. Nikole Trainor, a PrEP health educator, said billboards for the campaign were also mainly placed in predominantly white gay neighborhoods, like The Castro.
In February, the city launched a new campaign, “PrEP Supports,” in the hopes of reaching more black residents in the Bay Area. Trainor, the lead coordinator on the campaign, told HuffPost that the new initiative seeks to overcome mistakes of the past campaign.
After the first campaign, Trainor said she heard certain conspiracy theories ― that PrEP was designed by the government to harm the black community, for example ― from many of the men she counseled. “When I was out there in the communities, I was told by some young black men that I was a traitor, and [asked] why was I promoting this drug for our community,” said Trainor, who is black.
Billboards for this year’s “PrEP Supports” campaign have been placed in neighborhoods of color and Trainor said messaging was also placed on buses and trains that travel across the city so no one community feels explicitly targeted.
“In communities of color, trust and relationship building is huge and I think that’s where we’ve missed the mark,” she added. “What we’ve heard before from my personal conversations is that it all centers around mistrust. You have a government agency and [people think]: ‘They don’t support any of our social justice issues and now they want us to take a blue pill?’”
‘Why Hasn’t Anybody Talked To Us About This Before?’
Wilson insists it’s not a lack of willingness but a lack of information that results in low uptake of PrEP in the black community. During a national PrEP tour designed by the Black AIDS Institute last year, he said attendance at sessions was four times higher than expected and many attendees frequently asked, “Why hasn’t anybody talked to us about this before?”
For Wilson, further proof of the widespread interest came less than three months ago after the institute opened a new weekly prevention clinic, which offers PrEP services. Within the first several hours of the first day, he said they tested 29 people for HIV and about 20 percent of these patients agreed to receive a PrEP prescription.
“When you offer PrEP to black people and the people who are offering the services are black, the people doing the outreach are black, and the messages that are being created are created by black people ― black people are interested,” Wilson said.
When you offer PrEP to black people and the people who are offering the services are black... black people are interested." Phill Wilson, founder and CEO of The Black Aids Institute
Preston Mitchum, a policy analyst for Advocates for Youth, a sexual and reproductive health nonprofit based in Washington, D.C., echoed Wilson’s point on how ineffective messaging has left the black community even more vulnerable to HIV.
“It’s not as though black people don’t want information,” said Mitchum, who identifies as gay and black, and has been taking PrEP for more than a year. “It’s whether the access to that information is provided to black people.”
The 32-year-old lawyer and activist said he often finds himself having unexpected in-depth conversations about PrEP with white queer men at clubs and bars, but that black LGBTQ men generally know very little about the pill.
“Why is it that we’re not talking about PrEP more in black communities?” he said. “Why are pharmaceutical companies not driving the PrEP conversation in a way that’s culturally sensitive, culturally competent ― in ways that impact us?”
Overcoming A Legacy Of Racism
Perry Clark first heard of PrEP in 2014 ― the pill, it’s function and usefulness would frequently come up during dinner with his non-black friends. The 41-year-old marriage and family therapy associate, who identifies as gay and black, told HuffPost he was mainly intrigued by the pill because he “didn’t want to be a statistic.”
“At first, I was pretty much on the fence,” said Clark, who lives in the San Francisco Bay Area. “I was one of those that argued that it’s not 100 percent [protection]. But after a while, I remembered nothing is 100 percent except death.”
Clark, who’s now been on the pill for almost three years, is thankful for PrEP and the periodic monitoring he gets alongside it. But he said he pushed through feelings of distrust within his community in order to get the care he needs.
“I have dealt with some people who argue that aspect of, ’You’re trusting medicine, but they have poisoned us in the past,’” he said. “And it’s like, yeah they have done that. And, yet, what is our alternative? … We still need to function in this world and right now this is one of the best options I have. I’m not going to trust my health to your mistrust.”
I have dealt with some people who argue that aspect of 'You’re trusting medicine, but they have poisoned us in the past.' And it’s like, yeah they have done that. And, yet, what is our alternative?" Perry Clark, PrEP user
Harriet A. Washington, author of “Medical Apartheid” ― a comprehensive history of the ways in which the medical establishment has used black Americans as test subjects without their knowledge or consent ― believes that the problem is not black mistrust but an untrustworthy health care system.
“The focus tends to lie on African-American distrust, but African-American distrust is only half the problem,” she told HuffPost. “If we only focus on African-American mistrust, the implication is there’s something pathological or at least erroneous within African-American culture of thinking. And that’s not the case.”
“I emphatically believe the centuries-old racism and sexism in medical spaces is why black folks do not trust providers in ways that are going to be helpful to us,” Mitchum said. “To be honest, I should probably be more nervous going to a provider than I am.”
“I believe that for the medical community to come to terms with hopeful uptake of PrEP in black communities, we have to reconcile with the medical racism that has occurred for hundreds of years,” he added. “If not, we’re not going to get an uptake of PrEP. And we’re certainly not going to defeat HIV.”