Medical Distrust: The Real Reason for PrEP Misgivings in the Black Community

February 26, 2016

At this year’s National African American MSM Leadership Summit on HIV/AIDS and Other Health Disparities (#NAESM2016), a white doctor stood before a room filled with hundreds of black men at the opening plenary luncheon and talked about how many people “need” to get on PrEP.

I get it. PrEP is the one of the best biomedical prevention tools available to people at risk for HIV infection today. PrEP is safe and effective. PrEP works if you take it correctly. I get it. What I don’t get is why a white doctor would be invited to stand before a room full of black men and tell them that they need to use this medication. The message may be appropriate, but the messenger (and how the message is delivered) matters.

There are lots of barriers to PrEP uptake among black MSM, but beyond the issues of risk perception, healthcare access, provider and consumer PrEP knowledge, PrEP stigma, and homophobia, the elephant in the room is still the history of medical distrust in the African-American community. Distrust of the medical system has been a barrier to care for African Americans since long before the AIDS epidemic started. Black people in the US have the highest mortality rates due to heart disease, diabetes, and some cancers, partially because of our distrust of medical providers. There is also the lingering legacy of mistreatment by researchers—particularly during the Tuskegee Syphilis Experiment—which left black people in the US wary of medical programs and clinical trials.

Medical distrust existed decades prior to the shocking revelations over the 40-year-long Tuskegee study, wherein black men with syphilis were left untreated in order to observe the natural progression of the disease. Dangerous, involuntary and unethical experiments have been carried out on African American subjects at least since the eighteenth century. Accounts of medical and personal violation were passed down orally, from generation to generation. Medical distrust could contribute to the slow uptake of PrEP among black men.

Beyond the importance of both the message and the messenger, we have to recognize that HIV prevention has been medicalized. After 30 years of abstinence, partner reduction, and condoms, we can’t talk about ending HIV today without talking about research and pills and big pharmaceutical companies that make (and charge) ridiculous amounts of money. That looks suspicious as hell to a whole lot of black folks.

Perceptions of greed and racism in routine medical care all contribute to the distrust of physicians. What other people may see as routine medical care is often perceived by African Americans as experimentation, especially when the message is that a certain number of black men “need” to be on PrEP. (Again, how the message is delivered matters.)

And – in the spirit of Black History Month in the era of #BlackLivesMatter – we don’t trust the police (or any part of the criminal justice system). They will pull you over for driving-while-black, beat you off-camera, and say you did it to yourself. We don’t trust politicians (or any part of government). They will have you drinking water from the Flint River as if it were red Kool-Aid. People who have experienced racism or discrimination from individuals or institutions are less willing to be vulnerable and place trust in a system of unknowns such as medical care.

We’ve been beating around the bush. We’ve been picking the low-hanging fruit because issues of medical distrust are too difficult to deal with head-on.

Solutions such as the recruitment of minority healthcare administrators and executives and the presence of Community Advisory Boards that represents the the people help to change the perceptions of African American patients, but we have to do better. Short of a revolution at the polls or in the streets we need to expand support for efforts like AVAC’s PxROAR and the Black AIDS Institute’s African American HIV University, which aim to develop leadership and expertise in the communities most impacted by the epidemic.

There are all kinds of ways to frame it. The GIPA principle recognizes that personal experiences of people living with HIV and AIDS are important in shaping the response; Abraham Lincoln said that government systems should be “of the people, by the people, for the people”; and the name of 90’s American hip hop clothing company FUBU is an acronym for “For Us By Us”. If gay, black men are the group most at-risk for HIV infection in the United States, then they must be allowed to take lead roles in educating our communities about HIV prevention options.

The messenger matters. Gaining the trust of black men in the health care system is imperative if we are to reduce health disparities including incomparable rates of new HIV infections in young, gay black men.