Stigma lingers amid challenges of caring for babies born with HIV

They’ve been telling me since age 3 that I would die,” Tom Cosgrove said quietly. “Then age 6, age 8, age 10.”

Tom Cosgrove, 20, at home in Warwick, RI, is considered the longest-living person born infected with HIV in his state. But every year has brought struggle.

As a toddler at a shelter for children infected with HIV from birth, he watched others die. Then, Aids killed his mother and newborn brother. At 8, his body rejected medication and he became temporarily unable to walk.

He raged with anger, once even striking a teacher with a chair. Classmates, paranoid about his disease, refused to shake his hand or sit at his lunch table. Friends’ parents forbade them to visit, and he could not join basketball teams or karate classes.

Even now, medications impair his short-term memory, making school, and job prospects, difficult.

“We call them his stupid drugs,” said Barbara Cosgrove, who adopted Tom at three. “But, as I say to Tom, ‘You’re either stupid or you’re dead.’ ”

At a time when HIV in the United States has become a manageable disease for many, Tom Cosgrove and others like him are proof of the epidemic’s troubling, lingering legacy. They are the survivors, born beginning in the 1990s to the first big wave of people with Aids, babies practically destined to die. Improvements in drugs, along with some luck, allowed some 10,000 of them to live — and these days only about 200 children a year are born with HIV, thanks to vigilant drug treatment of infected pregnant women.

But life for those first HIV babies now entering adolescence and adulthood has been a battle, and their experience is considered so significant — not only in this country but also for the millions of HIV-positive babies worldwide — that federal health agencies have begun an extensive study to follow these young people as they grow up.

Some are weakened by years of yo-yoing symptoms that early drugs failed to treat. Some have developmental delays or other problems related to having HIV at birth. And their medications often have harsher side effects than those taken by people infected more recently as teenagers or adults because complications from their illness, or previous drugs they took and became resistant to, have made their disease more stubborn to treat.

Emotionally, they grapple with hostility toward parents who infected them, grief that those parents suffered and usually died, and anxiety about trusting others with a secret that still provokes hazing and fear.

And a serious problem is emerging: some are rebelling or asserting independence by skipping or stopping medication, which can make HIV spiral out of control and become impervious to previously effective therapies.

“It ain’t over yet,” Dr Ellen Cooper, medical director of pediatric and adolescent HIV at Boston Medical Centre, said about keeping these young people alive and healthy. Although she has not lost a patient in five years, she said, “I’m expecting a second wave” of these young people “dying because they’re not adherent” to medication, or because of “complications from treatment.”

Dr Lynne M. Mofenson, chief of pediatric, adolescent and maternal Aids at the National Institute of Child Health and Human Development, said that despite HIV babies’ increased survival, their “mortality is still thirtyfold higher than similarly aged children,” and there is “a lot of research that’s needed, and interventions to improve their lives.”

Seven agencies of the National Institutes of Health are following 451 HIV babies ages seven to 16, monitoring their hearts, cholesterol, bones, brains, hearing, sexual development, school performance, language ability, behaviour and mental health.

Preliminary findings show many of their current lifesaving drugs cause high cholesterol, raising fears of serious heart problems, said Dr Russell Van Dyke, the study’s co-principal investigator. Their bone density appears poor. And many have mental health and behavioural problems, although it is unclear to what degree those problems are related to the disease or to the children’s often-difficult family circumstances.

“There is a lot of concern,” Dr Van Dyke said, “about how the kids adapt to living and what sort of challenges they have. The lessons are going to be applicable to the rest of the world.”

Davi Morales is the kind of young person doctors worry about. He has HIV-related cognitive disabilities, and spent months homeless after uncles who raised him in a Providence, RI, housing project returned to Puerto Rico.

Davi, 20, lost Social Security disability assistance because the government now considers most HIV-infected people able to work, said Scott Mitchel, a counsellor with Aids Care Ocean State, who got him into an apartment that his agency owns. But Davi has trouble staying employed, following rules, working with managers.

“I don’t think right now he can go out there and support himself,” Mr Mitchel said. For one thing, his medication, five pills twice daily, causes severe insomnia and diarrhoea.

Nowadays, people contracting HIV through sex or drugs may take one easily tolerated pill, but the HIV-baby generation often needs complex multipill doses with irritating side effects, making pill-skipping more likely.

In desperation, doctors sometimes allow them to stop medication altogether rather than take their “last rescue regimen poorly,” Dr Cooper said. Davi sometimes skips several days, and “when I feel down, like I just want to give up, I don’t want to take my medicine at all,” he said. “If I didn’t have that kid, I probably never would take them.”

That kid is the son born three years ago after Davi, who was 16, told his girlfriend at the time, who was 14, “I want to have a kid” and “she was cool with it,” he said. “I didn’t really know what I was really doing.”

She took medication during pregnancy, and their son is uninfected. Her family, fearful of Davi’s disease, blocked access to the boy for a while, and the couple broke up. He is facing assault charges for striking her during an argument, but now sees his son regularly.

He said he wants to stay alive, but “maybe my lifespan is not as long as a normal lifespan. I was born this way and that’s what it is.”

Medication is not the problem for Elizabeth. Eighteen, white, from a wealthy Massachusetts suburb, she has been ostracised and tormented, “ ‘HIV slut’ being yelled across the hallway, anything you can think of,” she said.

Blood transfusion

Elizabeth did not know she had HIV until the age of 14, when her parents and physician appeared at her therapist’s appointment and told her.

“I couldn’t speak or really breathe,” said Elizabeth, whose mother was infected through a blood transfusion before she was born.

Elizabeth, who asked that her last name be withheld, said her mother “wants me to be completely closed about it,” and even Elizabeth’s little sister, who is uninfected, does not know. Keeping it inside feels “like holding your breath underwater for too long.”

But close friends she confided in betrayed her. Her best friend gossiped about it, and a boyfriend she broke up with “told everyone to get back at me,” she said. Schoolwork suffered as she constantly feared hazing and “focused on having to deal with this.”

At 16, she told a new boyfriend, who “promised that he’d never judge me upon it, that he’d never break up with me, that he’d never tell anyone,” she said. “The next day he broke up with me because of it.” They reunited, but his parents scorned her and he sometimes hid their relationship from friends, said Elizabeth, who recently stopped seeing him.

She said people in her well-educated community, who should know that HIV can be well controlled with medication and protected against with condoms, have been surprisingly intolerant. “There’s no need to think I’m dirty,” she said. “I’ve basically had my trust for people completely taken away.”

Things get harder as HIV babies grow up and leave the “very nurturing network” of pediatric Aids clinics and programmes, said Rena Greifinger, who formed the One Love Project to help such young people. “At 18, all that support melts away,” plus some of them “have been completely rejected by their families, the leper child.”

At a weeklong retreat at Babson College in Wellesley, Mass., One Love provided music therapy, role-playing about disclosing HIV status, and explicit discussions about sex and having children.

-New York Times