Breaking the Silence Through Storytelling: Confronting Medical Mistrust to Advance HIV Prevention

Breaking the Silence Through Storytelling: Confronting Medical Mistrust to Advance HIV Prevention

Kehinde Bademosi: For every HIV infection, there is a story behind it. Narration: Baltimore Maryland is a city of over 600,000 people; the birthplace of our national anthem, and the epicenter of difficult conversations about disparities based on race when it comes to health, education, and safety. It is also a city where the African-American population feels a deep mistrust of the medical community, for reasons both current and historic. (music) The Baltimore City Health Department is working to alleviate some of that mistrust, through storytelling. The Health Department launched two projects called Baltimore in Conversation and Project Presence, in partnership with community-based organizations. Baltimore in Conversation brings people together informally to share their stories about accessing healthcare and focuses on HIV prevention. Project Presence is a photo project that showcases community members and their stories. Both aim to create a dialogue and bring the community closer. Dr. Renata Sanders: I remember walking out to this dark stage with just one strobe light. I’m the first storyteller. I am a physician at Johns Hopkins, here in Baltimore, and they– Michael and others asked me to tell my story. It was completely amazing. I mean, I think initially I was very nervous. I tend to be an emotional person; I was very concerned that I’d get up there and just start crying and bawling, which I did. Narration: Dr. Sanders is a clinician for HIV-positive patients and took part in the storytelling night hosted by Baltimore in Conversation. Kehinde Bademosi: Baltimore in Conversation start with cell meetings of people in six or five where we just go and share stories. We’re still continuing with that. That’s actually our fulcrum, that’s our big platform. Narration: In addition to the story circles, Baltimore in Conversation hosts a storytelling night twice a year. Cedric Gum: The power behind it is the fact that you’re getting real people telling real stories and they are pretty much being vulnerable in a room of people that they don’t even know. Kehinde Bademosi: Our theory of change is if we can create conversations, you know, if we can make people talk more about the problems, then maybe we can break the barrier of silence. And if we can break barrier of silence, then we can begin to address all the issues about HIV, about prevention, about treatment. I don’t know, for me, it hits me differently because we talk about HIV and we talk about the black, gay community, and for me HIV doesn’t impact me as far as being a black gay man because the first person I knew who was HIV positive was my aunt. Ali Moody: What brought me to the project was just the fact that um, you know, it was something different. I wouldn’t have probably done it under any other circumstances because again of my camera shyness. But everybody on the project made me feel pretty comfortable and that support system definitely the difference and still does. Narration: Cedric and Ali are peer navigators who work with community-based organizations in Baltimore. They are actively involved in the health department’s efforts to promote dialogue. Kehinde Bademosi: Baltimore, as you know is, it’s you know, racially, you know very tense and that’s just gone back in history. Ali Moody: The first thing somebody thinks of when I say I’m from Baltimore is oh I must’ve been– I must have been a drug dealer…I’m 6’3″ with long hair and you know, I dress urban so, you know, people think the worst first, until I open my mouth and, you know, rainbows and butterflies come out (laughs). Kehinde Bademosi: There’s been a lot of mistrust in Baltimore about the medical society and uh– so that was affecting people adhering to their HIV medicine. Dr. Sanders: And some of that comes from having, you know, historically been experimented on, particularly for African-Americans. Whether or not you think about Tuskegee or you know here we wrestle with the HeLa cells and that history associated with that. Narration: One of the obstacles that used to face medical researchers was the difficulty of finding human cells that would keep multiplying in the culture of a petri dish. That problem was solved in 1951 when one doctor took cells from the cervix of a poor, African-American woman, who was dying of cervical cancer. This line of immortal cells that have contributed so much to science is called HeLa cells, named after Henrietta Lacks, the woman from whom the original cells were taken without her knowledge. The “he” in HeLa is for Henrietta, the “la” is for Lacks. It took 25 years for her family to find out about HeLa cells. Her daughter Deborah wondered, “if our mother’s cells have done so much for medicine, how come her family can’t afford to see doctors?” Dr. Sanders: I think that that mistrust has to be addressed head on. And it was important for me to understand what my son was going through the changes that he was going through trying to transition from the boy that I gave birth to, to the woman he now is. It was hard. Kehinde Bademosi: And I was able to say, what if you put yourself in the shoe of the mother? How would it feel if your son, that you’ve been calling you know Michael all his life, suddenly begins to transition and now she wants to be Michelle? You know, and all of that, which is empowering for her but for me, as the mother, what’s my story? So that’s what we’re trying to do with Baltimore in Conversation. But that’s my baby and I’m proud of her. She’s um she’s working in the LGB… Did I say it right? LGB…Q, T community…so I’m learning, I’m trying to learn all this stuff. Dr. Sanders: And I think the most striking thing for me was not just the fact of telling the story but there were so many people that came up to me afterwards that were just like thank you thank you you know one guy I remember and he has stayed in contact with me because he’s involved in the community but he was like “how can you be my doctor?” And you know that struck me in that I had clearly struck a chord with him to say you know I need you to be my doctor to take care of me because I see your passion and your compassion and your commitment and that was probably the most impactful experience. Kehinde Bademosi: HIV is a social justice issue. Ali Moody: Nobody can actually stay adherent to medicine if you don’t have a place to live. Narration: Baltimore had 315 new HIV infections in 2014, 88 percent of which were among those who identified as non-Hispanic black. 12,600 people are estimated to be living with HIV in Baltimore, and though African-Americans only make up sixty-three percent of Baltimore’s population, they account for eighty-four percent of those living with HIV. Baltimore also has higher percentages of people living below poverty compared to the US and Maryland. Homelessness is a concern as well with nearly 2,800 men, women, and children finding themselves homeless on any given night in Baltimore, according to the Mayor’s office of Human Services. Kehinde Bademosi: It’s not the fault of Public Health but it affects the entire platform of what we want to say because the same people are fighting the police brutality, they’re trying to survive and we are trying to tell them to use condom or to be on PrEP? No, they have a lot to deal with. Ali Moody: This is the first time that you know everyone in the city has come together for a common cause to bring awareness to PrEP and HIV care in a way that’s that’s been really different and really innovative and the community supports it. Cedric Gum: It’s important to have that face-to-face interaction so that you can build that trust and build that rapport and that will make it easier for you to access care and access those resources that you need. We don’t want people to sit and feel that they don’t have any resources or they can’t trust, you know, the health care system because you know there are places where a lot of people don’t feel comfortable. We want to make sure that we help you or help them find those places where they can actually access that take care. Kehinde Bademosi: Human-centered design is about looking at the human in all our approach to public health, to transportation to whatever it is, you know, can we go back to the person we really are trying to address? We look at the power structure. We believe that stories should not be single point of view. We have exhibitions. The last one was held at the city hall. That was where the powers that be, you know, actually are so they’re able to interact with these stories. And we are trying to influence the way they make new laws, new legislations, we’re trying to see if they can begin to acknowledge that, you know, the LGBT community in the city, they actually exist, they’re present. Dr. Sanders: These conversations are so key because we often don’t talk about how providers communicate and how it may impact someone. Those things can’t be unpacked through just like a paper, right? Or through just like data that’s shared but it has to happen sort of on a more personal level. Kehinde Bademosi: I really believe that going forward that’s what’s public health intervention should be about. It should be about going to the root of the people we’re trying to talk to, the human behind this thing. Cedric Gum: I do think it’s working, um, it’s going to take a while to get it to where we wanted it, of course, because there’s still such a stigma around sexual health and sexual identity. Even when it comes to PrEP, people don’t want to take PrEP because they feel that if somebody sees the bottle they’re going to automatically be labeled as a whore or labeled as a person that’s, you know, having unprotected sex or doing all of these things. Kehinde Bademosi: People are educating themselves through their lived experiences: how they survive insurance navigation, how they survive paying for their rent, how they got a new job, and all of that so those are the stories that people share. Cedric Gum: What I love about us is the fact that, you know, we do bus ads, or we have the potential to do billboards, but we go out into the actual communities that we’re trying to reach. Dr. Sanders: I think the health department was trying to foster that in the community conversation to really try to address some of these issues to say well we hear you and the key issues that you’re saying are important and hopefully in doing so, we can–you will trust us. Kehinde Bademosi: And when they talk with each other, with one another, there seems to be that element of trust coming back and that element of we can do this, we can change this community. Ali Moody: Everybody came together on that project in a way that was just so supportive that we all are kind of like brothers and sisters now when before we probably wouldn’t have associated with each other and under other circumstances. Kehinde Bademosi: Uh, there’s something about storytelling. Storytelling is is so powerful, it’s the way the world has come together. Cedric Gum: And that’s what makes that so successful is because we’re talking to real people about real stories– getting their real stories. We don’t like edit it, we don’t filter it. Ali Moody: So, as long as, you know, we keep coming together as a community, you know, the sky’s the limit. Kehinde Bademosi: I think it’s going to happen, one one block at a time, one conversation at a time like we normally say in our group. My desire and my hope is to work with with men–with young black MSM after the fact, and meeting them also before the fact and speaking to them about just how to live, and just how to thrive, and how to survive and that you can be gay and you can be black and you can be HIV positive and you– in this country, and still live everything. Kehinde Bademosi: HIV is going to be cured. We’re going to find a cure, you know and then people are going to run out of what they want to do with HIV. (laughs) But the stories will never end. (music) you you


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