This week WNYC is presenting a series of reports on young people who have been HIV-positive since birth, having contracted the virus from their mothers. In the second part of our series, Sharon Lerner reports on the medical advances, human kindness, and luck that have kept thousands of these children alive.
Robin: I used to lie in bed and think about my children’s funerals.
In the early 1990s, Robin became a foster parent to three HIV-positive siblings. Ashley was the oldest – and the sickest.
Robin: Up until she was 5 years old. We were losing her. Her T-cells were down to 13, and someone who’s healthy generally has anywhere from 500 – 1000. Ashley’s skin was all covered in sores and she couldn’t walk to the corner anymore and, at five years old, I had her in a carriage.
Even though Ashley, her sister, Annie, and her brother, Sammie, required round-the-clock care, Robin decided to adopt all three children:
Robin: What they did tell me was, Robin, your children are going to die. Keep in mind when you’re taking these children, they’re going to die.
For years, Robin lived as though her children could be gone at any moment.
Robin: When Ashley was 2 and Sammy was 1, I made them a party, a birthday party, and I guess you could call it the equivalent of their wedding. We had a six-piece band and over 100 people. Every Disney character that you could think of, plus a clown. open bar for the adults.
Ashley got what she wanted – whatever it was:
Ashley: Like once we went to Disney World like my mom had taken everyone and it was fun and she just wanted to do all the things she wouldn’t have wanted to regret and one time, we went to Sesame place, and when we were going home I cried. And then we went back the next week for a couple of days.
In 1995, when Ashley was 5, she started taking protease inhibitors, anti-viral drugs that, back then, were only available through experimental trials. Within three months, her condition visibly improved. Her sores began to heal. She gained weight. She walked. Then she ran. And the level of t-cells in her blood, an indicator of the body’s ability to fight the virus, began to rise.
Robin: We joined the trials and Ashley’s T-cells gradually went up, from 13, to the 100s, it was like 183, I remember Dr. Hendelton saying, Ronin, I have fantastic news for you.
Today, Ashley is a strapping sixth grader with big brown eyes, long, gangly limbs and more than 700 t-cells – a healthy number even for someone who doesn’t have HIV. She plays softball. She’s in her school’s bowling club. Perhaps most impressive, Ashley keeps pace with her ever-expanding family in Robin’s Brooklyn row house.
Robin: Let’s see- there’s Ashley, Sammy, Annie, Mo, Chrissy, Julian, and Joey – that’s 7. It sounds like there’s always a party going on here because there pretty much is.
Robin: That’s why most children who do come to our house they vomit when they have to go home. They don’t want to leave ever. Joey comes over here and he wants to stay, and stay, and stay, and stay. [kid’s voice:] You want to stay, stay, stay…
But, at some point every day, the party gets interrupted – or at least it moves to the kitchen, where prescription bottles and medicine droppers are lined up alongside cereal boxes.
Robin: Guys, medicine time. [moaning] … I know. I’m sorry. Bring everything to the table. Annie, medicine time, let’s go. Come on, bring it over to the table. This is done 2x a day, once in the morning before they go to school and then hopefully 12 hours later. We vary from 11 to 12 hours but we try to keep it on schedule because it’s very important that the medication stays in their system at the same level all the time. [Kid’s voice:] Right now I’m taking my Zerit…. Ashley has a unique way of taking her medicine…
Ashley takes 3 antiviral drugs. Firsts there’s Epovir, a clear liquid she sucks out of a medicine dropper.
Ashley: It tastes like bubble gum
Then she swallows one tablet of Zerit, and gulps down 8 Viracept pills, four at a time.
While they sometimes complain, Robin’s troops know they have to choke down their meds. For her part, Robin welcomes the ritual. The drugs saved her kids. And though medicine time may be hectic, it’s nowhere near the ordeal it was just a few years ago:
Robin: At one time, they were too young to take the pill form, so everything had to be in the liquid form or powder and then we had to mix it with something. We’d start like at about midnight because it was 3x a day at that time, and we wouldn’t get finished until maybe one o’clock in the morning. And this is 7 days a week.
Child by child, thousands were saved with this kind of meticulous care. The graph of AIDS-related deaths in this country looks like a steep ski slope. 1995 is the peak, when some 53,000 people died of AIDS. Then it’s a steady downhill plunge straight through 2001, when there were fewer than 16,000 AIDS deaths nationwide.
This downturn can be almost entirely attributed to protease inhibitors. On their own, these drugs interfere with the virus’s ability to copy itself and spread. But it’s the combination of protease inhibitors with other anti-retroviral drugs that forces HIV down to levels so low it can’t be detected in an infected person’s blood. Protease inhibitors have become famous for allowing adults to go back to work and resume their normal lives. On kids, the impact has been even more dramatic.
Olesky Over a very short time the protease inhibitors really made a difference.
James Olesky is a white-haired pediatrician at the University of Medicine and Dentistry of New Jersey. He treated some of the earliest cases of HIV-positive children in the US - though, for years, there was little he could do for them:
Olesky I mean I was in the hospital with 12 patients having to talk to parents about whether we should decide to have the child DNR Death and dying were with us. Pain. In fact in 1995, I remember specifically, we had about 34 deaths that year in our own program here in Newark, that’s like losing a classroom of children.
Last year, only one of Dr. Olesky’s patients died.
Olesky Some days I just can’t be happy enough that this stopped.
The antiviral drugs are hardly perfect. They don’t cure AIDS, and they can cause a wide range of side effects - nausea, liver problems, dizziness, lethargy, even hallucinations. And even when they help, their effectiveness against the virus often gradually decreases as a patient become resistant to them. Dr. Olesky, a true fan of the new drugs, acknowledges they play only a part in keeping kids alive:
Olesky This might strange coming from a physician, but I think the most important factor in why children had done well was because they had a supportive loving home environment. That they had people who cared about them.
If love really helps kids stay alive, it makes sense that Sammy, Annie and Ashley are thriving. Robin has given them everything she possibly could.
Robin: I’m so thankful my children will grow to be adults, but I have spoiled them so, thinking they wouldn’t be here anymore, and now I don’t know how to stop it. I still can’t say no.
Spoiling her children is hardly Robin’s biggest concern. Ashley, Sammy and Annie are too young to remember what they’ve been through. But Robin remembers. Her personal history of fighting HIV in her own children makes her appreciate every moment with them even more.
For WNYC, I’m Sharon Lerner.