Is Race a Factor in HIV Prevention?

Monday, April 17, 2017

HIV rates are declining as a whole among men who have sex with men, but rates aren’t decreasing for Black and Latino populations. The goal is Getting to Zero, but are the institutions dedicated to the cause actually dedicated to these groups?

“Xavier” (not his real name) has held positions in multiple Public Health Organizations that work in HIV prevention. He said that in his experiences, he’s found that institutions supposedly committed to bringing down risk have shown a harmful apathy towards the black community.

Xavier is a cis, black, gay male, a part of a population that is at the highest risk for HIV infection. A very high risk, in fact: the Centers for Disease Control and Prevention projects that at the current rates, half of black and one quarter of Latino men who have sex with men (MSM) will be diagnosed with HIV in their lifetime. Realizing such horrific discrepancies, Xavier saw this as a call to action.

“I came to San Francisco looking for community and I realized that being in HIV prevention was a great way to meet people I most identified with,” he said. “A lot of us are involved in HIV prevention because the gay community has been fighting this for so long. Certain groups are impacted more by HIV than others and I wanted to see if I could make an impact in the field.”

Through his years of work, however, Xavier has found that the major organizations guiding the field have repeatedly erased black bodies in the community and black opinions in the workroom, a vicious pattern that has only served to halt momentum in lowering rates among his group.

Locating the Problem

One seemingly successful initiative is Mobile Testing, in which a mobile unit travels to various locations around the city to provide free and spontaneous HIV testing, often during hours that primary clinics may be closed. But what are those “various locations” in San Francisco? Just two, Xavier points out: the Castro and SoMa.

As many who have walked down Valencia Street have figured out, San Francisco is becoming increasingly gentrified, and in many respects, white. This holds true for The Castro and SoMa, the two gay “centers” of San Francisco that are predominantly white and have a history of discrimination against queer people of color (QPOC).

Without safe enclaves for QPOC like The Pendulum (closed in 2005) and Esta Noche (closed in 2014), QPOC have had to seek their own spaces if they choose to avoid whiteness. And yet, Mobile Testing has not made an effort to find such spaces.

Xavier recalls protesting, “If black folks are most impacted by HIV and one population where rates continue to increase, why aren’t we going to those areas and testing them?”

He said his response was, “Well, people can come here.”

The mobile unit provides a potential solution to an ongoing issue of black MSM not receiving testing, but those in charge choose the path of least resistance, reflecting a cultural ignorance endemic to the organization.

As Xavier notes, “Their go-to is ‘We’ve tried that idea before.’ The way that some of these contracts work is that they’re based on numbers. The testing wasn’t getting the numbers they needed for the contract to get the money so they abandoned it.”

This appears sound enough. But, Xavier emphasizes, most of these initiatives are white-organized and white-led, with little input from people of color. The execution is flawed from the start if the community directly impacted has no say in its conception — once again, cultural ignorance becomes a factor.

Walking into a huge van with “AIDS” emblazoned on the front can divulge things that a person may not be comfortable with, and the work should be done without the expense of outing oneself. For a marginalized person to get tested they need to essentially come out of the closet and disclose their sexuality, and in many communities a label can be the same thing as a target.

“In my experience it seems arrogant to assume you want to disclose who you are to the rest of the world,” said Xavier.

And the issues aren’t just centered in initiatives these organizations believe to have tried and failed, but also ones that they genuinely believe are already in place. Instead of realizing that marginalized communities may need specialized attention, those in power often choose a “one size fits all” approach. The subtext is that if it works for white gay men, it should work for all gay men.

Xavier remarks that when QPOC try to come up with new ideas to reach black/latino MSM, they’re often blocked. He attempted to pitch a group of gay black men to serve as ambassadors and engage the community in sexual health, but was told that such programs were already in place.

“But no one that looks like me goes to those programs. We’re not a monolith, and we need people that know that in order to have a bigger impact in HIV prevention.”

Invisible Bodies, Invisible Opinions

Problems of inclusion are also apparent in outreach efforts, keeping groups who would most benefit out of the public eye. One of the biggest breakthroughs in modern HIV prevention was the approval of pre-exposure prophylaxis (PrEP), a once-a-day pill called Truvada designed to prevent HIV from populations at high risk of infection. The bright blue pill was approved by the FDA in 2012, yet advertisement to people of color is only a recent occurrence.

“PrEP didn’t start getting promoted to us until literally last year. Finally showing black/brown people, women, trans women. That took four years to do, and that to me says a lot,” Xavier said.

In 2014, Xavier worked alongside individuals who spearheaded one of the first real pushes to bring PrEP into mainstream consciousness: the “Truvada Whore” campaign. Originally used as a term to vilify those on PrEP, assuming that gay men will use it to engage in unsafe sex without fear of HIV infection, “Truvada Whore” was reclaimed as a label of pride with the suggestion that it’s okay for all gay men to be on the pill without stigma. Unfortunately, the advertising did not reflect that suggestion.

“I watched a co-worker create this T-shirt and a movement build. The T-shirts were super popular, but it was a very white-centered campaign,” said Xavier. “That colleague made a zine for the campaign and there were no black or brown people. When I brought this up, he pointed to someone who was so light-skinned you couldn’t tell. We never talked about it again. I asked if there’s anything being done to give PrEP to my community, to black folks, to brown folks. People kept saying yes, that’s why you’re here, but they would never do anything that supported that claim.”

In essence, Xavier said, he served as a token for the staff driving the movement. He watched as his community, the one that needed PrEP the most, was willfully ignored along with his own opinions. Two more years would pass before he would be represented, years in which many people like him may have escaped infection if they knew PrEP was “for them.”

These same experiences were pervasive even at the level of basic research. Xavier told of a briefing he attended for a pilot study on the efficacy of PrEP. In this study, no African-Americans were included in the preliminary statistics. He asked, “If black people are the ones most impacted by HIV, why aren’t they in the study?”

Their response? “That’s what we hired you to do, that was your job (to recruit black participants).” It wasn’t.

If this seems familiar, it might be reminiscent of President Donald Trump’s suggestion that a black reporter set up a meeting between him and the Congressional Black Caucus primarily on the basis that she was well, black. Was that her job? Of course it wasn’t, but it’s easier to shift blame to the black community for not helping itself.

“Deflect, deny, derail is my experience with whiteness in HIV prevention,” said Xavier.

The Business of HIV

This pattern came to a head the day Xavier decided to quit one of his jobs in HIV prevention. On this day, a few of his colleagues returned from a conference saying Native Americans were disproportionately affected by HIV and it was important to get them engaged for care. Those higher up took this as a sign to call a meeting to discuss the objectives of the organization.

A man in authority put it bluntly: “We are not in the business of hunting easter eggs. That’s not our job.”

As Xavier says, “You could argue that the black community is an easter egg too. They are what’s funding HIV prevention. To equate a marginalized community to an easter egg and to say they’re not going to do it, that should be your job. If you’re going to get to zero you need to find these easter eggs.”

For someone who is directing HIV prevention to suggest that certain high-risk populations aren’t worth the attention was too much for Xavier, and should frankly be too much for anyone. These are the people that are evaluating studies and guiding funding to programs. In those statements, lives are lost, and communities suffer. But because those communities suffer, they keep HIV rates higher. And if there’s still a significant problem, there’s money to be made. And the money continues to go to those with the highest visibility.

“HIV Prevention, let’s face it, is big business. Are you here because of your career or to get to zero? That’s the real question.”

In these larger organizations, people will choose career. In one of his most vivid and blatant examples, he remembers a discussion with federal departments about funding for a five-year program targeting young black gay men.

“I just hear a bunch of people telling stories, conflating numbers and talking about work that they’re doing that they didn’t do and use words that I used in regards to how we should view the black community,” said Xavier. “They used my words to tell the compliance officer that they were doing the work. To have people that I respected in a room and know that this compliance officer was being lied to, that just broke my spirit.

“I couldn’t work in an industry where people are flat out lying. People need their paychecks in this city, and I understand that, but when you have a responsibility to a community of people, and you’re not fulfilling your obligations to that community, that I have a problem with.”

For Xavier, the story does not have a happy ending. From his experiences, he believes institutionalized racism is ever prevalent in healthcare, and organizations dedicated to public health will pick and choose which sections of the public deserve to be healthy.

A Second Opinion

In response to Xavier’s story, I attempted to reach out to San Francisco-based major health organizations involved in HIV prevention (The SF AIDS Foundation and the SF Department of Public Health) and get an official statement on his allegations of neglect.

The SF AIDS Foundation did not respond to inquiries. The SF Department of Public Health eventually routed me to Dr. Hyman Scott, the medical director at Bridge HIV, which is a clinical trials unit centered on developing and evaluating biomedical and behavioral HIV prevention interventions. Dr. Scott’s particular focus is using these interventions to reduce and eliminate disparities among young black and latino men.

Dr. Scott did not attempt to refute Xavier’s allegations. He believes if those are his lived experiences, they deserve to be told. He recalled a similar story of institutional racism written as a thesis by Daniel Dangaran, a Yale student who observed the inner workings of the SF AIDS Foundation during the summer of 2014, which was reported by the Bay Area Reporter with some controversy.

Dr. Scott, like Xavier, self-identifies as black and gay. He said the SF Department of Public Health’s leadership does indeed reflect the communities that are disproportionately affected by HIV. He believes that his opinion is heard and valued at the department, and there is a dedicated effort to increase cultural humility among the staff there.

He feels the internal operations and culture of an organization are often set by the leadership, and that diverse representation is essential to addressing underlying issues with structural racism.

“We need to ensure that the leadership of the organizations is reflective of the communities that we hope to engage,” he said.

While there is always work to be done, he says that what the department is doing to ensure awareness of personal biases is a step in the right direction.

He went on to detail his own work, which addressed some of Xavier’s complaints: Dr. Scott’s research evaluates structural barriers that perpetuate health disparities, such as poverty, incarceration, racism, and stigma. His goal is to help people navigate these barriers and find alternatives — for example, encouraging home HIV testing for those experiencing stigma at HIV testing sites.

Importantly, Dr. Scott’s studies are heavily based on qualitative work: focus groups, interviews, and consortium meetings, which aim to receive community input all along the spectrum of race, gender, sexual identity, and sexual orientation and give a voice to those impacted.

He uses these opportunities to gather data and feedback from the community to inform future approaches. Reciprocally, he provides transparency by informing the community on the most recent national and regional data on the HIV epidemic.

Dr. Scott maintains that his perspective of the health department is his own, and that he holds some privilege in his views as a physician. While he does not intend to speak on behalf of the entire organization, he is resolute in his personal goal:

“I will never be content until we eliminate HIV and the disparities that exist.”

We need to work to dismantle systemic oppression, give a voice to those without one, and put humanity over money and ego. Unless we are able to relinquish power and visibility to the communities most affected by HIV, they are destined to perish.