Drug treatments for HIV have given new hope to patients with the virus. But the Holy Grail for researchers is finding a way to prevent HIV from being transmitted in the first place. Scientists are testing vaccines, drugs, gels that kill the virus – all without success. The only way to prevent HIV transmission – still – is to convince people to change their behavior. And that’s not easy. A group of people in Durham are trying to find better methods for HIV prevention – and they’re using techniques refined by researchers working in other cultures.
Last Friday was a busy day at Lincoln Community Health Center in Durham. It was also National HIV testing day and volunteers were in the lobby recruiting incoming patients to get tested.
"We’re offering free HIV testing and counseling today? Would you all be interested?" a volunteer says.
About 30 patients accepted the offer of free HIV testing Friday. Sandra Gomez is a nurse with Lincoln who organized the day. She says they need to reach out to everyone.
"Your normal housewife, your husbands that goes to work every day, he has children because they don't see themselves at risk and they don't understand that yes, maybe now you are monogamous now you are not using any drugs but when do you did when you were 20, 25, can affect your health now," Gomez says.
And Durham needs that outreach. Durham County has one of the highest rates of HIV acquisition in the state. In 2008, 102 new people were diagnosed, and now there are more than two thousand people living with HIV in Durham. And the people getting HIV at fastest rate are young black men and women between 18 and 30 years old.
"And especially on the college campus, African American college campuses. It's really skyrocketing," says Reverend Rhonda Royal Hatton, the Lutheran campus minister at North Carolina Central University. She says there are number of things driving the spread of HIV in young African Americans – they might feel ashamed about their sexual behavior, they might feel invincible, and they might a need to look like they’re doing all the right things. "They are studious, they are refined, but if my grandmother or my mother or my father who worked hard to provide this for me, that I would be able to go to college and make the family proud, whether I am the first one to go or whether I'm from a legacy, a generation. Oh... I am going to hear it in a big way. In a big way," she says.
So that drives their behavior underground. And Royal Hatton says prevention messages directed at this population have been too preachy, and so haven’t hit the mark. That’s why she decided to join a working group for the LinCS 2 Durham project.
"The LinCS 2 Durham project is about researchers, but it's about the Black community in Durham," says Kate MacQueen, an anthropologist who works with the non-governmental organization, FHI. She’s one of the leaders of the LinCS 2 Durham project. Usually, she works overseas, helping scientists understand the communities where they’re doing research. "In order to do good HIV prevention research, with the people who are at risk for HIV, we are going to have build trust," MacQueen says.
Essentially, it’s cross-cultural research. MacQueen says scientists and researchers don’t understand the lives of the people they study. That’s why it’s important to engage those people up front. MacQueen says too often, researchers take a top down approach, looking for the one group that meets their needs.
"You gotta find people and they have to meet certain types of criteria or you won't be able to answer the research question. So you’re basically coming to people and saying this is what we want to do, it's a really great idea, we really want you to do it with us, will you do it with us...?" she says.
The study or the intervention lasts maybe a year or two, the researcher gets his or her data, and leaves. And who benefits? The people who gave their blood, or who filled out the questionnaires? Or the researcher who studied and published and then moved onto other things?
"What's different about what we are doing, you know, is we’ve come in and we've said we don't have a particular prevention trial that we want to do in Durham," she says. "But we want to know, if in Durham, if this community is interested in doing something. What would that look like? And if you are interested, then let's do it together."
MacQueen has done this before, working abroad in a number of countries. But for this project, she’s working in her back yard. She’s collaborating with Randy Rogers, from the Durham Health Department. He says studying HIV prevention in Durham will be a long, slow process of building relationships. One reason is, people have seen it all before.
"We are saturated. Overly saturated," MacQueen says. "Because there is so many different types of studies that have been done in the Durham community, specifically in the black Durham community."
And community members haven’t seen the results. When they don’t get any benefit, they end up feeling used. Rogers says people in the black community are sensitive to that. It’s happened before – infamously – with the Tuskegee study, where black men were allowed to have syphilis for years, so researchers could see how the disease progressed over time.
"Just this level of transparency that I think is critically important when you are trying to establish trusting, healthy relationships," Rogers says. "And really wanting the best health outcomes for your research respondents. And that has not always been the case when you look at black persons in America in relationship to research."
Now, Rogers and the others have to get the word out about the project. He says that can be a challenge in a place like Durham, because there are few places in Durham where everyone in the African American community goes – there’s no one bar or restaurant or club where people go every weekend. Instead, what Rogers and the working group realized is that Durham’s social life is driven by events. Like the Juneteenth festival in downtown Durham a few weeks ago. Research assistants Alexandria Horne and Kim Gibson sat in a tent on CBC Plaza talking it up.
It’s all an attempt to find out what will work to reduce the rate of new HIV cases in Durham. And if down the road there’s a clinical trial for a vaccine, or for a medication, then, maybe people in Durham would be more willing to participate. Because there’s trust that’s been built up. Rogers says the conclusion the working group reaches might also be that Durham isn’t the right place.
This group can evolve into kind of like the clearinghouse to examine the future opportunities that may come into this area just based on the relationship," Rogers says. "Because you are not going to go far with any type of study, truth be told, if you don’t have the support of the community."
For now, the working group is starting by creating a questionnaire, and they plan to roll it out in the community this summer.
You can read more at the Global Health Connections Blog