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THE FORGOTTEN ONES

Footnotes to a tragedy

Infants infected by transfusions -- 33 at Cedars-Sinai -- faded from view as AIDS exploded. A survivor and a grieving parent forged a unique bond.

July 15, 2007|Charles Ornstein | Times Staff Writer

'DO I have AIDS?"

Sixteen-year-old Alexander Ghaffari was eating breakfast, getting ready for school, when he put the question to his mother.

It wasn't a charged or dreaded moment. He can't even remember what prompted him to ask. Maybe he'd overheard someone talking about it, although he doesn't think so.

More likely it was all the visits to infectious-disease specialists or the fistful of pills he took twice a day.

But Ghaffari, now 25, remembers well what followed.

"She said, 'Yes,' " he said.

"And then I started to cry -- right then," Ghaffari said. "I broke down."

His mother, Ann Dubinet, tried to reassure him. The virus, she said, was completely under control; he had HIV, not full-blown AIDS.

She gently led him to a room upstairs. They lay down together to talk. He was weeping.

"I remember my mother just telling me, 'You're healthy, and you're extraordinary.' "

Then she told him a story. It began in April 1982, days after he was born.

He had been seven weeks premature, and doctors at Cedars-Sinai Medical Center in Los Angeles were struggling to save his life. He needed emergency surgery to connect a valve to his heart. In the process, he received at least one blood transfusion.

Back then, AIDS didn't yet have its name. The first cases of the syndrome had only recently been identified. It would be three more years before a blood test could screen for the human immunodeficiency virus.

Alex went home, apparently healthy.

Five years later, his family got an alarming phone call from the hospital: Some of the transfusions given to newborns a few years before had been tainted with HIV. Would Alex be tested?

After the results came in, Dubinet kept the diagnosis almost entirely to herself. She didn't notify his teachers. She didn't even tell his father, her ex-husband, who was living abroad, for fear he might spurn the boy.

"Back then, it was so taboo," she recalled. "You mentioned it and you were a complete pariah."

She told her young son that he had kidney problems. That's why he needed so much medicine. She crushed the awful-tasting antiviral pills, mixed them with water and chocolate syrup and served the concoction to him in a shot glass.

Dubinet, a film executive, made sure that her son had as carefree a childhood as possible. He went with her to the Cannes Film Festival in France, to Greece, Turkey, England and Switzerland. "I was so happy," he said. "I was going places."

That day in his mother's bedroom, Ghaffari wondered if his life was over. But his mother refused to let him think that way. She sent him to school that afternoon, and the next day. She advised him to keep his condition to himself, and he did, striving for what he saw as a normal teenager's life.

After a few weeks, "I ignored it," Ghaffari said. "I pushed it to the farthest brinks of my brain. I just wanted to have fun and hang out with my friends."

By the time he reached his early 20s, people infected by HIV-tainted blood had largely been forgotten, footnotes to the wider tragedy of AIDS.

For Ghaffari, new medications had made living with the disease more manageable. But as he dated and attended college, he began to wonder: Why him? Could Cedars-Sinai have prevented it? Were there many others like him? Were they alive?

In the summer of 2004, Ghaffari began to look for answers. Through his mother, he got in touch with a former Cedars-Sinai doctor. She knew a man named Bruce Kasper, a Realtor in his 60s, whose daughter, Anique, had been infected at Cedars-Sinai in 1980.

The girl died at age 11.

Kasper was still angry, still demanding accountability from Cedars-Sinai and others. On a website dedicated to his daughter's memory, he had written: "This fight for the truth and justice is far from over."

Ghaffari felt he had to meet him. He called Kasper's Playa del Rey home that November from his apartment in San Francisco, where he was attending college. Ghaffari, less than two years younger than Kasper's daughter would have been, told the older man that he wanted justice too. He wanted to learn more. He needed help.

They joined in a common quest.

NOWADAYS, THE RISK of receiving HIV-tainted blood in the United States is virtually nil -- 1 in 1.5 million transfusions, according to the American Red Cross.

But a quarter century ago, cases like Ghaffari's represented a crisis in this country, one that revolutionized the way it safeguards its blood supply.

Nationwide, at least 386 children under 13 and 9,334 adolescents and adults contracted AIDS through blood transfusions, nearly all in the early 1980s before a test for the virus existed.

Most did not survive. In those early years, children died from AIDS much faster than adults did, their developing immune systems no match for the virus.

Unlike hemophiliacs or gay men, the transfusion recipients who survived had no reason to know each other and no easy way of connecting. They had grown up, many of them, with a secret shared only with close friends and family.

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