Yet not everything is quite as it should be. Many of the group received their childhood vaccinations before they were put on HIV medications but after their immune systems had been compromised. This has made them more susceptible to certain viral diseases, such as shingles and its complications, as well as bacterial infections that can cause pneumonia and meningitis. “Their immune systems were not in optimal shape to make a lasting protective response. That’s something fairly unique about this group,” says Siberry. “We need to do something different to protect them against vaccine-preventable illnesses.” Some ideas about how to tackle this problem include starting anti-retroviral therapy in infancy, before they are given their childhood vaccines, to preserve immunity to vaccine-preventable diseases. An alternative could be to re-vaccinate young children once they’ve been on the therapy for a few years.
Another hot-button issue for this unique cohort is that of drug resistance. Kingon, who inherited Ledlie’s cases in 2010 when she retired, finds her biggest challenge is getting her patients to adhere to their drug regimes. “Adolescents are always going to do what they want to do. If you order them around, they’ll either get fed up and leave or they’ll ‘yes’ you to death,” says Kingon. When adolescents become lax about their treatment, it can have serious medical repercussions. Skipping HIV meds gives the virus an opportunity to start multiplying rapidly again and to develop drug resistance.
The daily medications have always been Tanya’s biggest challenge. Taking your life-saving medication may seem like a straightforward and obvious thing to do for someone in her position, but taking “meds” is not just a simple case of popping a pill once a day. There are more than 20 different drugs approved for the treatment of HIV in the US and Europe. Many patients take a combination of drugs, often two or three at a time, to reduce the likelihood of developing resistance and make treatment more effective. In the past, HIV-positive people used to take as many as 30 pills a day. Although things have improved so that many of the drugs are combined into a single pill, some patients may still need to swallow a tablet two or four times a day. Even after her mother died of Aids and substance abuse in 2004, Tanya didn’t stick to her regime, says Ledlie. Together, Ledlie and Tanya worked on a week-to-week schedule. “I would call her and ask her to do good just for a week,” says Ledlie.
Although Ledlie is not Tanya’s physician anymore, she can’t seem to shake that role. “Have you been taking your meds?” she asks casually. Tanya shakes her head, but insists that she knows she should. “I know you know,” Ledlie says, holding Tanya’s gaze for an extra beat. Tanya says she realises the dangers of drug resistance and is ready to change her attitude - particularly if she wants to have kids someday. “I hear Susan’s voice in my head all the time when I walk past my meds on my dresser,” she says. “I’m getting older and I want to change before it’s too late.”
The need for holistic medical care like Ledlie’s is becoming obsolete in the west. The sick helpless babies who have survived HIV infection are now independent grown-ups who need to transition safely into adult HIV healthcare. “These children - I still call them that, though they aren’t - they really are the pioneers,” says Siberry. He says it’s important for the medical community to stay in touch with this generation to see how their bodies and minds respond to the virus and the medications through adulthood. “For their sakes, but also for younger children who will be following them in future decades.”