His first thought when he saw the test results was not confusion or anger. It was disappointment.
He was a young black man living in Miami-Dade County, and he had gotten HIV from sex with a man. He was in the group most likely to contract the autoimmune virus in a national epicenter for HIV infection. He’d known the risks — and the consequences.
His mother became HIV positive when he was a child, when treatment consisted of a cocktail of drugs with terrible side effects. He remembers her headaches and the fistfuls of Aleve she would swallow — anything to help her sleep.
And he remembers the day his aunt showed up at his home. He was 8, hadn’t been to school in days and his aunt found him curled up in bed next to his mom, who in her pill- and illness-induced stupor had defecated and urinated on herself.
“When they did take me out of the bed I was covered in it and everything, but I wouldn’t leave her side,” he said.
His mom died that year, and he vowed he would never let the disease get him, too.
But 13 years later, he became one of the 26,000 people in Miami-Dade living with HIV. He was 21, had no support system and no doctor. Now 25, the young man — who doesn’t want his name used because he fears the stigma that still exists — credits his survival to a clinic specifically designed for young people like him.
Promote to Protect is the only program in Miami-Dade that specifically works to link HIV-positive teens and young adults to care, which usually is their in-house dedicated youth HIV clinic. The 95-patient program, at the Mailman Center for Child Development, is part of UHealth — the University of Miami Health System. It’s also facing a change in funding that could slash half of the program.
“We are kind of like the hub for the rest of the efforts in the community,” said Alex Moreno, clinical head of the program. “When it comes to adolescents, we are that specialty.”
Without the youth-only clinic, Moreno said he can see other clinics feeling the strain of picking up the slack. Worse, he fears fewer young adults would stay in care without the level of attention his clinic offers.
The primary care clinic is the part of the program at risk, he said. Money to pay for finding, testing and linking young adults to care is secure.
The program runs on money from UM, Health Resources and Services Administration HIV/AIDS program and the Adolescent Medicine Trials Network for HIV/AIDS Interventions, which is a part of the National Institutes of Health.
Every five years, research teams that are focused on youth HIV apply for ATN funding. But changes in this year’s funding process mean money is uncertain, and the future of some programs is up in the air. Instead of paying 17 to 19 groups to research, ATN now wants to focus on four or five bigger, regional research centers.
UM applied to be one of the centers, but it won’t hear back until later this month. Dr. Bill Kapogiannis, program director for Adolescent Medicine Trials Network for HIV/AIDS Interventions, said that despite the funding shifts, the mission of the organization continues to be “addressing the crucial scientific and public health knowledge gaps among adolescents affected by HIV in this country.”
The change in the way research is funded “produced a gap,” said Dr. Lawrence Friedman, head clinical physician for Promote to Protect, the Miami group.
“Existing studies are about to finish,” he said. “And new ones won’t even be available until the beginning of 2017.”
Less research on youth HIV means less available medicine targeted to teens, who would have to be folded in to adult and pediatric studies.
If the clinic doesn’t win an ATN grant, five employees likely will be cut and some crucial programs will end.
“The main thing is, when we do our work, we wouldn’t have a clinic to link to,” Moreno said. “We have patients that would be displaced. We’d have a doctor who’d be completely overwhelmed and taking care of 99 patients on his own.”
The other program that may be chopped is a support group for HIV-infected youth that the 25-year-old man helped found.
His first topic when he started the group in 2014 was “how and why you should come out to your family,” something he had never felt he could do. After he was diagnosed, he kept quiet, especially after he saw the fallout when one of his family members revealed that she was HIV positive.
“It was hell,” he said. “Different family members treated her different. You only drink out of this cup and eat out of this plate; use this fork.”
He doesn’t want to face the stigma of the disease alone, so he looks to programs like the one he founded for social and emotional support. But that program was cut after the staffer who ran it was laid off.
Other money might be available for the clinic, which is applying for grants “like crazy,” Moreno said. He’s pinning his hopes on the clinic becoming a contracted testing site for the state health department. The extra money would help the program expand to rapidly test for syphilis and other diseases as well as HIV.
Another option is combining programs at UM with the pediatric infectious disease clinic and HIV program Ana Garcia coordinates, which serves people who were infected at birth. But cases of perinatal infection have dropped off, leaving a fully stocked clinic with a diminishing population of patients.
Garcia said she has a clinic and staff ready to go, which would make the transition close to seamless.
“This is the world of research,” she said. “You’ve got to figure out how you’ll sustain.”
For the 25-year-old man with HIV, the virus gave him a new mission. He recently graduated from college with a degree in healthcare and wants to work with HIV patients. His experience with medication, lack of family support and discrimination gives him the kind of perspective that can help others who are sick, he said.
If you don’t get what you need, “you can go downhill real fast, and it’s hard to get back up,” he said.