The hospital known for researching children’s cancer will unleash its medical arsenal to fight another deadly disease at this year’s Cooper-Young Festival, September 14th.
St. Jude Children’s Research Hospital employees are getting out from behind their test tubes and computers and into the neighborhood to help educate adolescents and young adults about HIV. As part of this outreach effort, the hospital will host an educational booth, complete with knowledge quizzes, on-site testing, and referral-agency information.
“We offer a five-question quiz to see where people are in their HIV knowledge,” says Sally DiScensa, family nurse practitioner and HIV outreach leader. “When you hear the questions [from the public], you realize people don’t know how the disease is contracted, how it is transmitted, and other diseases that can result from HIV.”
Nearly 50 volunteers, including St. Jude data analysts, doctors, and nurse practitioners, will operate the booth. Last year, volunteers quizzed more than 750 festival attendees and conducted 119 tests. This year, the noninvasive, oral ORASURE test will be administered to anyone who thinks they are at risk for the disease. “The test takes only three minutes and is done with a swab similar to bite-wings used in dentists’ offices,” says DiScensa. “Regardless of the results, everyone [is scheduled] for post-test counseling, which reviews risky behavior patterns and sexual partners.”
In addition to St. Jude employees, booth volunteers from other outreach agencies, including the Memphis/Shelby County Health Department, Friends For Life, and Memphis Regional Planned Parenthood, will also participate.
When cases of HIV infection in children started hitting the news media in the early 1980s, treatment of this disease was a natural segue for St. Jude. The first cases the hospital handled were perinatal (mother-to-child) infections and HIV-tainted blood transfusions.
“St. Jude recognized that this was going to be a problem at that time,” says Dr. Pat Flynn, St. Jude’s lead infectious-disease specialist. “Very early, we realized that HIV was going to be a disease that had a lot of similarities with the way we managed leukemia.” Similar infections and social support systems for cancer and HIV patients led to the beginning of the hospital’s program in 1987.
Since that time, the program’s clientele has changed, because mother-to-child infections have dramatically decreased (due in part to studies performed at St. Jude) and donated blood now undergoes rigorous testing. In 1993, the program began treating adolescents, most of whom had contracted the disease through sexual transmission. According to the Centers for Disease Control, half of newly infected individuals in the United States are under 25, one-fourth are under 22, and the Southeast region of the U.S. is seeing the most new cases.
Besides conducting disease studies, the program is designed to identify adolescents with the disease and get them into care. Flynn says the patients are usually disenfranchised and come to the program with additional problems that must be addressed.
The regional program runs in tandem with the hospital’s in-house programs, sharing support services, lodging assistance, and some staff. Each year, about 20 new teenagers are referred to the program from area agencies, hospitals, and gynecologists. No child has been turned away. Each of the 80 adolescents currently enrolled will be tracked until the age of 24, when they will be referred to adult care. The program’s social-work division also helps clients obtain their GEDs, enroll in Job Corps, and acquire employment.
“One of the things with these kids is that you have to be very forgiving,” says Flynn. “Monday, they may be ready to go, take their [medication], exercise, and by Friday, they may say, ‘Let’s start this next week.’ Unlike what usually happens with cancer patients, most of these kids don’t have support systems. It gets very frustrating sometimes when it seems like for every step forward, we’re taking two steps backward. And sometimes the frustration of ‘why did this have to happened to this kid?’ gets to us. These kids have already taken so many blows before they get to us.”
Flynn and her staff decided to attempt to curb the adolescent-infection rate two years ago with the implementation of their community-outreach initiatives. In addition to the Cooper-Young Festival, the staff also distributes information at health fairs and presents high school workshops.
“I would be content not to see new patients coming at the rate at which they are coming. Hopefully, that’s where our outreach efforts will balance our new-patient accrual,” says Flynn. “We would consider it a tremendous success if we were able to reduce the new-infection rate in Memphis.”
