It’s not uncommon for one of DeMarcus Jones’ two cell phones to ring as early as 4:30 a.m. or as late as 11 p.m. Jones, who works at St. Jude Children’s Research Hospital, knows the importance of being accessible—he’s part of an international effort to prevent the spread of the human immunodeficiency virus (HIV).
St. Jude has been making progress against HIV/AIDS since 1987, when hospital founder Danny Thomas declared AIDS a catastrophic disease of children. In the decades since, the St. Jude HIV program has become a well-respected clinical care and research program with a strong community outreach component.
The hospital’s latest effort involves a worldwide clinical trial to test the effectiveness of a long-acting, injectable HIV prevention and treatment drug called cabotegravir.
St. Jude is one of 27 U.S. institutions in the study and one of only three pediatric institutions. The clinical trial, called HPTN 083, plans to enroll HIV-negative, at-risk individuals around the globe. Research suggests that one injection of cabotegravir every eight weeks can prevent HIV infection. HPTN 083 is the largest study to date to confirm this. Clinicians will track participants for four-and-a-half years.
Worth a shot
Currently, people at risk of contracting HIV have only one medication option for prevention, a daily pill.
“The Food and Drug Administration licensed one pill once a day for prevention several years back,” says Aditya Gaur, MD, of St. Jude Infectious Diseases, the project’s principal investigator at St. Jude. “That drug works well for those who take the pill regularly, but taking a pill daily falls back to a commitment, and not everyone can do it consistently.”
A long-term injection is a welcome option.
Part of Jones’ role at St. Jude involves working with community partners to promote the study as well as building rapport with study participants to ensure retention. Since many enrollees come from low-income backgrounds, Jones also ensures they have transportation to the hospital.
“We provide education so they understand and feel empowered about making informed decisions and becoming a part of the study,” Jones explains.
“Once they enroll, they spread the word to their peers. From there, it’s a chain reaction of much-needed education in the community.”
Jones’ colleague Andrea Stubbs has spent more than a decade at St. Jude, working with schools, government officials, health agencies and HIV/AIDS organizations to spread the word about the hospital’s HIV clinical trials, activities and ongoing efforts.
“We’re trying to change the course of the HIV epidemic in the U.S. as well as locally, and it’s looking promising with these emerging prevention options,” she says.
Kickball and clinical trials
Stubbs and Jones coordinate local events that cater to the study’s target population. At dances, fashion shows, karaoke nights and kickball games, individuals interested in HIV testing, education or study enrollment can learn more in private sessions with St. Jude staff members.
At first, study participant Jessie Claudio was skeptical of taking part in the clinical trial. After learning more, he felt a sense of empowerment and enrolled in July 2017.
“Participating in this study is important to me, because I get to be one of the first to try something new and revolutionary that can possibly save the lives of hundreds from contracting HIV,” he says.
Claudio also shares his experience with others, stressing the study’s benefits and the importance St. Jude places on care and education.
We’re trying to change the course of the HIV epidemic in the U.S. as well as locally, and it’s looking promising with these emerging prevention options.
HPTN 083 allows St. Jude to make an even stronger contribution to HIV education and prevention.
The Memphis metropolitan area ranks 41st in population nationally, but ranks eighth in the rate of new HIV cases and 12th for newly diagnosed AIDS cases. To date, 78 youth have joined the study at St. Jude, making the hospital the trial’s highest enrolling center worldwide. This shows the enthusiasm among youth for research and the strong relationship St. Jude has with community partners engaged in HIV prevention.
Study participants have shared stories of changing behaviors and reconsidering risk-taking actions.
“Working with youth can at times be frustrating,” Gaur says. “They’ll be no-shows for appointments, or they may take ongoing risks despite being cautioned. Participants’ feedback about how the study has changed their lives and their decision-making is encouraging and energizing. It keeps the team going.
“Our staff’s experience working with youth, our resources, and our track record as a high-performing HIV prevention and treatment center uniquely position St. Jude to take cutting-edge HIV prevention research to the community,” he says.
From Promise, Summer 2018