A Seat at the Table

Youth Help HIV/AIDS Researchers

 

By Elizabeth Jane Walker • Illustration by Brandon Stelter

 

With hugs and laughter and enthusiastic chatter, several young-adult patients burst into a conference room at St. Jude Children’s Research Hospital for a fun meeting with a serious purpose. These vibrant and engaged young leaders meet once a month to help clinicians and scientists nationwide improve the research and treatment of HIV/AIDS.

Each member of the Youth Community Advisory Board (CAB) is a St. Jude patient who has been affected by the disease. Under the guidance of Nurse Practitioner Carla London, this close-knit group of seven to 10 patients provides feedback to investigators developing studies of youth with HIV. It’s a duty the board takes seriously. And it’s a service the researchers appreciate.

Research assistance

According to the Centers for Disease Control and Prevention, youth between the ages of 13 and 24 account for more than a quarter of all new HIV infections in the U.S., with more than half of those individuals unaware they are infected.

Ronald Dallas, PhD, a clinical research scientist in St. Jude Infectious Diseases, has sought the CAB’s input for grant proposals and clinical trials centered around medication adherence.

“Teens have many reasons for not taking their medications,” he says. “They may have funky schedules. Or they may not see the importance of taking their meds, since they currently feel fine. Or they may not want their family or friends to know they have HIV. When we’re designing a study to encourage teens to take their meds, it’s great to have the CAB offer input.”

Megan Wilkins, PhD, a clinical psychologist in Infectious Diseases, has consulted the group several times, including for one study evaluating body image in youth with HIV.

“The CAB gave really helpful feedback about the wording of questions and about acceptability among youth with HIV,” she recalls. “In fact, their feedback was used to modify the wording of questions, the way we presented the protocol and our efforts to recruit patients.”

The scientists view the CAB as an invaluable research partner.

“Every time I’ve gone to this group, they’ve provided something unique that we hadn’t considered,” Dallas says. “They ask insightful questions that make us think.”

Empowered to help

The CAB has also offered input for protocols created through the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN), a national research network. Projects created by ATN institutions have the power to transform the treatment of HIV and AIDS. Many of those projects are focused on prevention research, since the U.S. has one of the highest rates of HIV infections in youth. According to the ATN, 3,300 young people are infected with HIV every day. The CAB members know the decisions they make have the potential to help change those statistics.

“The CAB is so important, because they give direct feedback to the principal investigators about things that need to be tweaked,” London says. “What better group of people to give that feedback than those who are battling HIV themselves? I tell them all the time that they are vitally important because they have the authority to change the face of this disease and the interventions that are created to combat it.”

Every time I’ve gone to this group, they’ve provided something unique that we hadn’t considered. They ask insightful questions that make us think.

Ronald Dallas, PhD

A family and a voice

In addition to helping with research, the St. Jude Youth CAB reaches out to the community. They have spearheaded toy drives for children with HIV, organized dances for the hospital’s Infectious Diseases staff and patients, and sent representatives to state and national HIV/AIDS meetings. The CAB members agree that the group empowers them, gives them a sense of purpose, and provides them with a way to give back to the institution that has offered them hope and understanding, as well as medical care.

Eighteen-year-old CAB member Miguel vividly recalls the day, three years ago, when he discovered he was HIV positive.

“I just froze,” he recalls. “It was like a movie where I hit the ‘pause’ button, and I saw myself standing there with tears in my eyes. I was overwhelmed and disappointed, full of doubts and insecurities. But when I came to St. Jude, I felt like I was brought into a family. Everyone made me feel like I’m at home. I can talk to them about anything, and I feel loved when I come here.

“I’m thankful to be here and to be able to take part in the CAB,” he continues. “This is a great opportunity for our voices to be heard.” 

From Promise, Summer 2016

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