(NEW YORK) — Hydeia Broadbent was born with HIV coursing through her veins, invading her white blood cells and eroding her immune system. Her adoptive parents would find out three years later, after her biological mother and brother tested positive for the virus.
The year was 1987, six years after the first 159 Americans came down with a mysterious disease that would soon be known as AIDS. And at the tender age of 3, Broadbent became a guinea pig in the quest for an HIV treatment.
“My mom signed me up for a trial,” said Broadbent, now a 28-year-old HIV and AIDS activist. “She knew that was my only hope. She knew the doctors would look at me really carefully, so that’s what we did.”
Back then, death was the norm, according to Broadbent, who saw more kids die from the complications of HIV than survive them. Even she “coded couple times,” she said, meaning she “died and came back.”
“I’ve had brain infections, blood infections,” she said. “I once had an infection that my doctor hadn’t heard of since medical school.”
When Broadbent heard that a baby born with HIV had been “cured” by high doses of antiretroviral drugs shortly after birth, she tried to imagine what her life might be like.
“I wouldn’t have to go to the hospital so much. And I’d be pill-free, which would be a blessing,” she said.
The prospect of curing HIV in infants has doctors and activists excited, and rightly so. Despite advances in treating and preventing HIV transmission, an estimated 9,522 Americans alive today contracted the virus at birth, according to the U.S. Centers for Disease Control and Prevention.
“It would mean quite a lot,” pediatric HIV and AIDS specialist Dr. Mark Kline of Baylor College of Medicine in Houston said of a cure. “It would mean thousands of children could come off of a lifelong treatment regimen.”
Broadbent takes three antiretroviral pills a day, on top of a handful of supplements to keep her body strong. The pills give her headaches and stomach cramps. But if she misses a dose, the drugs could lose their potency against the fickle virus.
“If you miss one dose out of every 20, you’re likely to develop resistance over time,” said Kline, who has been treating HIV-infected children since the virus was discovered. “And these kids have to be monitored. They have to come in and see a doctor on a regular basis to get blood drawn, have their livers and kidneys checked, their blood counts checked.”
For Broadbent, the medications and checkups take a heavy financial toll. The lifetime cost to treat HIV is an estimated $379,668, according to the CDC — money Broadbent says often comes out-of-pocket or through financial aid that’s only available for those living below the poverty line.
“HIV is not a death sentence, but it’s a life sentence,” said Broadbent. “You’ll be taking pills forever, going to the doctor and fighting for insurance forever.”
If there were a cure, those burdens would vanish. And so would the stigma of a contagious disease intractably linked to unprotected sex and intravenous drug use.
“Kids just want to be normal,” said Kline, recalling how pediatric HIV patients were once banned from schools and public swimming pools out of fear. “Even though we don’t hear the horror stories we did in the early days, this disease is stigmatizing and people feel the diagnosis is something they have to shroud.
“And there are the life issues that come up over time, when teenagers become sexually active,” Kline added. “What do they tell their partners? What about marriage? What about having a family of their own? A cure would offer them the opportunity to do all those things that every other person wants to do one day.”
But Kline said he is wary of the term “cure.” So far it has been used in the case of one Mississippi baby, who was treated aggressively after being born to an HIV-positive mother and testing positive for the infection shortly after birth.
“It’s an interesting single case, not unlike cases I have seen personally and others have seen,” he said, describing how infants sometimes have signs of infection after birth that disappear with time. “They don’t occur commonly, but they do occur.”
Kline described the case of a baby boy who tested positive for the virus, and then negative, and then positive and then negative again. Twenty-two years later, the patient still has signs of the virus but remains healthy — having never received treatment.
“These are unusual cases and I do think we have something to learn from them,” Kline said. “But to say this baby was cured because we gave him powerful medications in the first 30 hours of life, I think that’s a real stretch.”
The case also raises ethical questions, since antiretroviral drugs can have toxic side effects, according to Kline.
“I think that’s actually one of the overriding concerns here,” he said, adding that most babies born to HIV-positive mothers actually escape the infection. “I simply do not think this one case has any potential to change the clinical management of infants born to HIV-positive mothers.”
Even Broadbent, a “guinea pig” herself, had concerns.
“I don’t know how I feel about testing on children,” she said. “I think all pregnant women should be tested and treated. Hopefully it will become mandatory and routine, so there will be no more children born with HIV. That’s very possible.”
Copyright 2013 ABC News Radio