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After 60 years, medical mistrust continues

Dominique Maria Bonessi

Two weeks ago, state officials gathered in a shopping center parking lot in Dundalk to declare August first Henrietta Lacks Day. Last night, the Baltimore City Council adopted a resolution to follow suit. The resolution honors the woman whose cancer cells, taken by Johns Hopkins doctors in 1951 without her knowledge or consent, led to advances in treatment of polio, cancer, HIV/AIDS and other diseases.

Lack of patient consent, compounded by a history of mistrust of medical institutions, still reverberates in Baltimore’s gay black community.

Many became familiar with the story of Henrietta Lacks through the HBO movie, "The Immortal Life of Henrietta Lacks," based on the non-fiction novel by Rebecca Skloot.

There was also the infamous case of 600 black men at Tuskegee University in Alabama whose syphilis went untreated, without their knowledge or consent, as part of a U.S. Public Health Service study from 1932 to 1972. Their story was dramatized in the 1997 movie "Ms. Evers Boys."

The relationship between medical institutions and the black community has come a long way since then. There are now laws requiring patients to sign consent forms, so patients know what they’re getting into. But those stories still resonate, especially in Baltimore’s gay black community.

"I used to live close to Johns Hopkins during grad school," says Kehinde Bademosi, the social innovation marketing manager at the Bureau of HIV Services for the Baltimore City Health Department. "I remember at night when I was coming from college, the driver would be like, 'Don’t go out at night because they could pick you up for research."

Bademosi says that even in 2014 a lot of his neighbors around Johns Hopkins believed the driver’s warning.

"I’m sure he didn’t mean it that way," says Bademosi "He just wanted me to have some sort of hatred towards the institution."

When Bademosi learned more about Henrietta Lacks he understood where these thoughts were coming from. Those negative narratives and misconceptions of medical institutions are barriers that make it difficult to get young gay men with HIV into treatment, says Yvonne Kingon, a care provider with the Baltimore Health Department.

"I’ve found that there were plenty of young people that I worked with who were for many, many complicated reasons were unwilling or unable to adhere to a medication regimen that I would recommend," says Kingon.

Kingon worked for 13 years in New York City as a nurse practitioner with HIV-positive patients. She says many young people with HIV fail to keep follow-up appointments because they feel judged or stigmatized by their disease, society, or care provider.

"Which is often heard as what is wrong with you? Why can’t you do this? What don’t you understand? Do you want to die?" says Kingon. "Very, very judgmental questions that may not be said out loud, but that is how they are received."

In an effort to make more young, black gays feel more comfortable talking about the challenges they face with their disease and seeking care, Bademosi and the Baltimore Health Department have started a YouTube series called "Baltimore in Conversation."

In one video, 26-year-old Stephan Hernandez speaks to a support group for young, gay black men. He’s talking about one of the support groups he was in prior to coming to Baltimore in Conversation. Hernandez says when he was told he had HIV he didn’t like the type of "one-size-fits-all" treatment he received prior to coming to the city.

"I got frustrated and I got angry because I thought it was such a generic model. I thought it didn’t meet me at my needs," says Hernandez. "And I was lucky I had friends who supported me. But there are so many people out there who do not have those support systems because they can’t even get through the phrase of saying I have HIV."

Hernandez is not alone in feeling stigmatized. Corey Bradley volunteers with Kehinde Bademosi at the health department. He is a doctoral candidate at Johns Hopkins Bloomberg School of Public Health. Bradley, also a gay black man, wonders about other factors that make his peers feel vulnerable.

"Now tell me if I’m wrong because this is coming from the community," he asks Bademosi and Kingon. "When testing vans are out and you say I need to be tested, they can actually pull your name up and they can see whether or not if you are positive or not? How long you have been in care and if you are currently in care? Is that true?" 

Bademosi nods his head yes. Bradley replies that he would like to see some system that notifies patients when someone looks up their medical information; something akin to "when you submit for a credit report, it will let you know that so and so has looked up your credit and it has effected your credit in one way or another."

Bademosi and Bradley say they recognize the importance of scientific research and reporting the results of HIV and other sexually transmitted diseases to the Center for Disease Control and Prevention in combating new diseases. But constant requests for blood samples from Baltimore’s gay black community to do that research reminds people of the past.

"And begins to make people feel like why are we over studied, why are you always coming to us," says Bademosi.

"And we’re not getting any better," Bradley chimes in.  "You know I collect data, I do research, you keep collecting this data and the rates of HIV are going up."

In 2014, 76 percent of people living with HIV in Baltimore were black, according to AIDSVU, a National Institute of Heath-funded website to prevent the spread of HIV and other sexually transmitted diseases. And black men in Baltimore are 11.1 times more likely to be diagnosed with HIV than white men.

Bradley says he and his Hopkins colleagues struggle with the delicate task of making data and information about HIV relevant, accessible, and meaningful to the people they serve, given the hospital’s lingering reputation.

"So people just don’t feel that we keep coming and running an HIV test collecting blood and writing papers and getting rich," says Bradley. "We also need to be clear that Hopkins has the reputation it has now this is tough to deal with, Hopkins is who it is because of the suffering of people in Baltimore."

Kingon says the health department’s care providers have changed the way they interact with patients in hopes of changing the negative narratives. She says rather than looking just at the disease, they look at the whole patient and try to create rapport.

"We would say things like, 'Why don’t you just come in every three months, I promise I won’t talk about meds. We will do some labs if you are okay with that. Let me just know how you are doing,'" says Kingon.

Meanwhile, Bademosi is taking a different approach to ease suspicions and help young men with HIV stay in continuous care.

"So we need to find stories," says Bademosi. "Stories are going to help us understand you know all these very mysterious things about healthcare. Let’s humanize healthcare."

Bademosi says he hopes that through storytelling he can change the narrative and mend the wounds of the past.

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