A high school senior has gone from taking pills every day to getting a shot every two months to treat her human immunodeficiency virus, or HIV. “It’s a big help,” she said of the injections she gets at the MUSC Children’s Health R. Keith Summey Medical Pavilion.
“When I was younger, I had to take a gigantic pill. Then they shrank it, but it was still yuck.”
The shot, Cabenuva, is a long-acting treatment designed to keep her HIV at an undetectable level. It’s a welcome change for a young woman who’s had HIV since she was a baby. “I think I got it from my mother’s breastfeeding,” she said.
“For the first, I think three years of my life, I didn't take any medication, and I was extremely sick. I did end up having to go to an orphanage, and in the orphanage, I started taking medication.”
Those difficult early years of illness and loss led to her adoption at age 4. She’s grown up in a loving, supportive family able to make sure she gets the care she needs. That doesn’t mean it’s always been easy.
“When I was younger, I thought having HIV was really scary. And I thought I would never live a normal life. But now that I’m getting a little older, I don't think that. I would like to tell people who are younger that you can live a normal life. It’s really not that big of a deal.”
Adeline Koay, MBBS, the teenager’s HIV doctor, loves to hear that she feels that way. “I want all my patients to know that they can live normal lives from the get-go. Sometimes they don’t feel that way. I may not be able to change that. But I can try to help them to feel at ease with the diagnosis,” she said.
When I was younger, I thought having HIV was really scary. And I thought I would never live a normal life.
“I know plenty of people with HIV who have their own children, and those children don’t have HIV. It’s because the parents have seen doctors. They’ve taken care of themselves.”
The MUSC Children’s Health HIV program has about 20 patients, ranging in age from babies to people in their early 20s. Anyone who gets the Cabenuva shots has to be at least 12 years old and weigh at least 77 pounds. “It’s up to 98% efficacious for children and adults who get it, as long as they don’t have any HIV resistances,” Koay said.
She talked about how some of the kids she treats got HIV. “So we are seeing an increasing number of teenagers who have had condomless sex, which places them at risk for getting STIs and HIV. Most of the young children that we see in our clinic acquired HIV through their mothers because they weren’t getting the appropriate treatment or did not know that they had HIV during pregnancy.” STI stands for sexually transmitted infection.
Pregnant women who know they have HIV can be treated with a combination of medicines called antiretroviral therapy to reduce the risk of passing on the virus to their babies to less than 1%. You can find other important HIV prevention information from the National Institutes of Health here.
The local high school senior now getting injections to treat her HIV wants people to know that it’s a blood-borne virus that’s treatable with life-long care. She was frustrated by the way it was described at school one day.
“When I was in a sex-ed class about STDs and stuff, we talked about HIV. I felt so embarrassed about how they were describing it. They made it sound like a disgusting thing that you’re never going to get over your entire life. And it’s really nothing like that.”
If you are living with HIV, you can have a nice, happy, healthy life. You can have a family with children that do not have HIV, but you need to get the treatment.
Koay agreed. “I want teenagers to know about this. I want adults and parents to know about this. Parents, as hard as it is, should feel like they can have open conversations with their children and, at the same time, maintain privacy. Teenagers’ parents should be asking doctors questions – not just about HIV, but also prevention, because we do have other medications as well that can prevent STIs in general,” she said.
“So that includes gonorrhea, chlamydia, syphilis. But we obviously want people to have safe sex. We want people to know that all of this can be prevented. And at the same time, if you are living with HIV, you can have a nice, happy, healthy life. You can have a family with children that do not have HIV, but you need to get the treatment.”
The MUSC Health Adult and Pediatric Infectious Diseases clinics both offer Cabenuva for HIV treatment. They also offer Yeztugo, which is a twice-yearly injectable to prevent HIV infections. Koay said interested patients should discuss this with their medical providers.
Helen Adams
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