Clinical trials are not often diverse — meaning medical solutions often don’t account for the needs of a wide range of communities. A 2020 global analysis of participation in clinical trials found that 76% of participants were white, 11% Asian, and 7% Black.
Working to change this, the HIV Vaccine Trials Network — the world’s largest publicly funded international collaboration focused on testing and evaluating vaccines to prevent HIV — is expanding its Faith Initiative, which aims to lay a foundation of knowledge and trust in biomedicine in the United States so that many different types of communities feel comfortable enough to participate in and support HIV vaccine trials.
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“Belief systems and faith leaders really play a significant role in the decisions that people make about their health and wellness,” said Dr. Ulysses Burley III, who runs a consulting firm focused on the intersection of faith, health, and human rights and also leads the initiative.
Faith networks
In 2020, HVTN — with funding from the National Institute of Allergy and Infectious Diseases at the U.S. National Institute of Health — established the COVID-19 Prevention Network, or CoVPN, to monitor and evaluate U.S. government sponsored COVID-19 vaccine trials. As part of this effort, an initiative was established that expanded HVTN’s existing Faith Initiative.
In the CoVPN Faith Initiative, a group of faith leaders across the country have worked to educate communities on COVID-19 and its vaccine trials, build trust in the research process, and counter vaccine hesitancy, Burley said.
He added there was “a racial and ethnic component to our engagement, in that black and brown people were being disproportionately impacted by COVID-19, because of the social determinants of health.”
These efforts were successful , in terms of the number of people they were able to reach — and convert from vaccine skeptics to supporters of vaccines, he said.
“We've learned with COVID-19 that you can make a vaccine with 95% efficacy, but if zero percent of the population trusts it, or is willing to participate in it, then it's just science on the shelf.”
— Dr. Ulysses Burley III, founder, UBtheCURESpringboarding off those successes, the HVTN and the U.S. government are expanding this work once again in the context of HIV and HIV vaccine trials, enlisting faith leaders in Christianity, Islam, Baháʼi, and Buddhism from New York City, Washington, D.C., Atlanta, Little Rock, Los Angeles, Chicago, and Houston with backgrounds in work on HIV.
Through this network, faith ambassadors will engage communities of color, LGBTQ populations, women, children, and other marginalized groups around HIV, as it relates to their faith, Burley said, while continuing to provide information on COVID-19.
“We want to leverage this moment in history where people's awareness of vaccines, clinical trials, pandemics, biomedicine and our immune systems — all of these things that we've all been inundated with for the last two years — we want to leverage that awareness now to re-center the conversation around HIV and AIDS, to remind people that globally, HIV is still the deadliest pandemic of our lifetimes,” Burley said.
They will do that using their “relationship capital” with communities through events where people can ask questions and contextualize HIV in their own faith.
“It’s community engagement, education, boots on the ground, actually sitting in church pews, sitting in people's homes, and leveraging those intimate relationships with the people who ultimately will benefit from whatever it is that you're creating,” he said.
Building up a broad competency in biomedicine
Partly, the initiative sprung from the realization during the pandemic that there isn’t a “cursory competency for science and medicine” in the U.S. It aims to build up that basic level of understanding, so people feel comfortable getting an HIV test, taking pre-exposure prophylaxis or antiretroviral therapies, and ultimately engaging in clinical trials, Burley said.
“We know that there's an under-representation of communities of color in clinical trials and that leads to the research and development of biomedicines that might not necessarily be effective for some of those communities, because they weren't represented in those trials,” he said.
The approach must be different than HVTN’s previous initiative around COVID-19, given that HIV is primarily transmitted through sex, Burley said.
“This work, that prioritizes HIV, won't necessarily be the same type of work that we've done over the last year as it relates to COVID-19,” he said. “We understand that those conversations have to grow, to also be conversations around sex, sexuality, gender and identity, personhood, and humanity.”
When trials are announced in the U.S., they’ll need to be diverse, Burley said, adding that “they'll need to enlist an array of the population to produce the best results.”
And if HIV vaccines are developed, it’s important to lay the groundwork so communities can use them.
“We've learned with COVID-19 that you can make a vaccine with 95% efficacy, but if zero percent of the population trusts it, or is willing to participate in it, then it's just science on the shelf,” he said.
Globally, experts say the world is still a long way away from an effective HIV vaccine, despite advancements in the field of research. Results from a promising vaccine trial in HIV proved ineffective in 2020 and was stopped.
Compiling the data around faith involvement
This initiative is an effort to take a closer look at the social determinants of health.
“How does one's neighborhood; one's education; one's access to healthcare; but also one’s faith, where one worships: How does that relate to one's engagement with biomedicine?” Burley asked.
The biomedical community is well rooted in quantitative data analysis, he said. “And for years, we have not done a good job at quantifying the work that is done on a community level. It's not necessarily science in a laboratory or patients and hospital beds. But it's conversations over dinner; it's community outreach; going out into the community and knocking on doors. And oftentimes, funding for these types of initiatives is based on some level of quantitative data.”
For this initiative, HVTN will poll before and after events, to gauge people's understanding around various topics related to HIV. Having a body of data will hopefully lead to increases in funding.
And while this is an American initiative, Burley said he hopes that they can make the case that the model is beneficial and sustainable, so that lessons learned from their efforts can help international partners deploy these models more broadly.
“I hope that our success will be a blueprint for something that can be replicated throughout the world,” he said.
Devex, with support from our partner GHR Foundation, is exploring the intersection between faith and development. Visit Focus on: Faith and Development for more. Disclaimer: The views in this article do not necessarily represent the views of GHR Foundation.