Never a day without HIV
It has shaped the lives of those infected as infants at Cedars in the ’80s.
They belong to a club that no one else will ever join. Its numbers are dropping and notoriety is fading, and they risk becoming little more than a footnote in the history of the AIDS crisis.
They were infected with HIV as newborns at CedarsSinai Medical Center, through transfusions of donated blood that carried a virus so virulent it was killing healthy young men, and so new and bewildering, it did not yet have a name.
It was 1985 before a blood test was developed that could detect the virus. And it was 1987 before CedarsSinai began notifying parents whose babies might have been infected in its neonatal unit.
Studies suggested that as many as 200 infants at the hospital were infected through donated blood between 1981and 1985.
I met four this week, at the home of Bruce Kasper, whose daughter Anique was one of those infected. Anique died in 1992 at age 11. Kasper has waged a campaign since then “to make sure what happened to these children is not forgotten.”
They are not children anymore.
Alex Ghaffari, who turns 30 next month, has become the public face of the survivor group.
He carries around a thick red binder, filled with hundreds of letters he has written and received from activists and politicians — including then-u.s. Sen. Barack Obama.
They offer good wishes, but little else.
Ghaffari was infected as a preemie undergoing heart surgery. When he was 5, his mother had him tested, but kept the diagnosis to herself.
She told him the medicine he took each day was “for a kidney problem,” he said. “I went to a private school in the Valley. If people had known, they would have been horrified.”
It was understood that this was a secret to be kept. They came of age in the era of Ryan White, the Indiana teenager who, after his 1984 AIDS diagnosis, was treated like a leper.
All but Ghaffari asked that I not use their names in my column. The hysteria may have faded, but the stigma hasn’t.
“Life is pretty good right now. Why mess it up?” asked one young woman who has an English degree and a job she likes and doesn’t want people to “freak out.”
That woman, call her Holly, is 29 and a newlywed.
Her mother still remembers crying as she held the screaming 4-year-old for the blood test that would confirm her HIV status.
“The doctor told us she would probably not make it until 12,” her mother said. “He said, ‘Do not tell family, do not tell friends.’
“You’ve just been given a death sentence — a slow one — for your child. How do you look your child in the face? How do you tell them?”
Most were simply told they had something wrong with their blood — “bad blood,” one mother called it; “special blood,” said Holly’s mother.
“I told her no one else should touch her blood,” Holly’s mother said. “If she was cut or to bleed, she should grab something and cover it.”
For Holly, then 9, that was explanation enough. “When you’re taking 30 pills a day, getting your blood tested every three months, you kind of figure something’s going on,” she said.
It wasn’t until years later, at a high school assembly about HIV and safe sex, that Holly realized her “special blood” was considered a death sentence. “That’s when it became real to me.”
The diagnosis shaped their lives: Indulged children became indifferent students and irresponsible young adults.
“I was allowed to get away with so much, I became used to that kind of thing,” said another woman, who chatted with us in a soft voice, as her two rambunctious toddlers ran wild. At 30, she has four children, from 2 to 13. All have tested negative for HIV.
She, like some of the others, didn’t see the need to study; she might be dead before graduation. Their outlet for teenage rebellion was refusing to take their medication.
“I had a lot of mental instability,” said the third woman in the group. She spent much of her adolescence ill. She lost weight, her hair fell out, she went to the prom “barely able to walk.”
“I felt like ‘I’m not going to make it to 16.’ Then 16 came. And I said 18. Then 18 came. Then 20.” At 25, it hit her: “I’m still here.” At 30, she is about to graduate from college, interns at AIDS Project-los Angeles and plans to get a master’s degree.
“It would have helped to know someone else like us growing up,” she said. “For a long time, I thought I was the only one left.” She may not be far off. Dr. David Hardy, who now heads the hospital’s division of infectious diseases, manages medical care for survivors and knows of only about a dozen who are still alive.
“I inherited these young people,” he said. “They are an amazing example of psychological resilience.”
They grew up isolated from the larger HIV community, where victims were gay men, drug addicts or hemophiliacs.
“I know everybody [with HIV] is innocent,” Ghaffari said. “But we’re like totally innocent. We didn’t do drugs, or have unsafe sex.… All we did was be born.”
That perception carries its own sort of burden.
Their survival defies conventional wisdom, said Hardy, who has studied the virus for 28 years. “They were infected in the first weeks of life, when the immune system is so inadequate.” They were teenagers before drugs were developed that turned HIV from deadly to chronic.
“These are individuals who were dealt a very difficult hand at a very small age,” he said. “They are some of the longest-living Hiv-positive people in the world.”
The four that I met this week cautioned me against painting too rosy a picture. Some still swing between anger and gratitude, balancing the miracle of their lives with the magnitude of their struggles.
They measure their health in T-cell counts and viral loads. They battle fatigue and hospital officials. They question every ache or chill, and wonder what and when to tell new friends.
They can’t recall life without HIV. “You think about it every day,” Holly said, “when you take that handful of pills.”
They feel blessed by ordinary things: Four healthy children. A college degree. A man who sticks around after you announce — on a first date, as Holly did — “I have something kind of heavy to tell you. I have HIV.”
“I didn’t run off,” Holly’s husband said, “because I was already crazy about her.”
They are finally resigned, 30 years in, to a journey that is making history.
“Magic Johnsonwas a game-changer,” Ghaffari said. The Lakers star “made a tremendous difference in how people see HIV.
“But we’ve had it 10 years longer. He celebrated his 20th anniversary, we’re celebrating our 30th. ‘Take that, Magic!’” Ghaffari joked.
The group gave themselves a little cheer, then wearily rose to go.