Science

Footnotes to a tragedy

"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.

Now they are young adults, marrying and pursuing careers, all the while trying to integrate what was once a deadly diagnosis into their lives. Some, like Ghaffari, only now are coming to terms with what happened so long ago.

Cedars-Sinai, a nationally renowned medical center, was an epicenter in the crisis. In the early 1980s, it had both a large neonatal intensive-care unit where transfusions were common and an internal blood bank that relied, in part, on the donations of gay men from nearby communities.

At least 33 newborns were infected through transfusions at Cedars-Sinai during that period, according to a federally funded study published years later in the journal Pediatrics. But the number was almost certainly larger: Of 775 children who received transfusions from 1980 through 1985, more than 330 either came from families that could not be located or, like Kasper, declined to participate in the study.

By late 1982, federal reports were suggesting that the disease could be transmitted through blood. And by the fall of 1983, Cedars-Sinai was aware that at least one of its tiny patients had died of AIDS, probably the result of a transfusion at the hospital three years earlier.

Samuel Jared Kushnick, who had received transfusions at Cedars-Sinai shortly after birth, died of pneumocystis carinii pneumonia that October. His death certificate listed AIDS as the underlying cause.

Cases like Sam's had been popping up at other hospitals too, leaving blood bank and hospital officials in a quandary: Should they tell all transfusion recipients that they might be at risk for AIDS, for which there was no treatment at the time? Or should they keep quiet to minimize fear and stigma?

Before the HIV test was approved in the spring of 1985, Cedars-Sinai generally opted for silence. "We would have had to have contacted individuals, told them that they were at risk of developing HIV infection, without being able to provide any assurance that they did not have such infection," Dr. Dennis Goldfinger, the longtime director of the Cedars-Sinai blood bank, said in sworn testimony later, in response to a lawsuit by Kasper.

Goldfinger declined to comment for this story.

Only in 1987, as part of the federally funded study, did Cedars-Sinai contact most of the families of children who had received possibly tainted transfusions and urge them to be tested. Some parents — including Kasper — said they were encouraged not to share the diagnosis with anyone else.

"In the context of the events back then, I think we tried to do the best that we could," said Thomas M. Priselac, Cedars-Sinai current chief executive and president, who has held various posts at the hospital since 1979.

In hindsight, nearly everyone involved in the crisis nationally moved too slowly, according to a 1995 report by the Institute of Medicine, an arm of the National Academy of Sciences. As a result, the institute concluded, "Perhaps no other public health crisis has given rise to more lasting anger and concern than the contamination of the nation's blood supply with HIV."

If nearly everyone involved was implicated, no one in particular was held responsible. When patients or their families sued hospitals and others, they often found it impossible to prove negligence. Cedars-Sinai said it never lost a case in court but settled at least two.

Hemophiliacs who had been infected through a blood-clotting product were far more successful in winning court awards and settlements from manufacturers. They also effectively lobbied Congress, obtaining up to $100,000 each in compensation.

Transfusion recipients received nothing from the federal government.

Over the years, children like Ghaffari have been relegated to the annals of AIDS history, a distant memory even to AIDS activists.

But Bruce Kasper hasn't forgotten them. Ghaffari learned that the first time they spoke. Kasper had every detail on file.

The two settled into a pattern, talking every day. The younger man paced his small apartment, sharing his questions and fears, as the older one, in raspy tones, revisited the events of a generation before.

KASPER STILL CALLS IT THE DAY "my world collapsed."

On Feb. 11, 1987, he was at his office in downtown Los Angeles when a Cedars-Sinai physician telephoned and said Kasper's kindergartner might have been infected with the AIDS virus.

Born seven weeks premature in September 1980, Anique had been treated for jaundice at Cedars-Sinai. She received several blood transfusions in her first week of life. One of them, barely enough to fill three tablespoons, was contaminated with HIV.

With the call, "everything just fell into place," said Kasper, now 66. Her childhood illnesses had seemed to last longer than normal; doctors never could pinpoint a cause. A test months later confirmed that she had HIV.

Within a few years, Anique was wasting away. Photos from that period show a blond girl with skeletal features and a taut smile. She developed a racking cough, asthma and difficulty speaking.

"You're standing there watching your child slip from you, and there's nothing you can do," Kasper said.

He asked Cedars-Sinai to pay for her treatment at Childrens Hospital Los Angeles, correspondence shows, but the hospital refused.

If she needed AIDS-related care, Cedars-Sinai President Sheldon S. King wrote her father in March 1990, she could get it free — at Cedars-Sinai — after her insurance picked up its portion. That, he wrote in a later letter, "more than adequately satisfies any moral or ethical responsibility we might have."

The letters are part of Kasper's voluminous files — the evidence he has carefully gathered. So is Anique's own plea to Cedars-Sinai, dated Jan. 5, 1992.

"Dear hospital," the three-page handwritten letter began.

"...I'm really angry. I'm always in the hospital and being sick. You do not know how I feel and how my parents feel. They're always scared when I get very sick. They're scared that I'm going to die."

In closing, she wrote: "I would like somebody to read this and not throw it in the garbage."

Six months later Anique died in her mother's arms, on the way home from summer camp.

Kasper "went right away to anger," said Mara Kasper, whom he married in 1986 after he and Anique's mother divorced. "I don't think he ever got through that."

Kasper admits he did not mourn in the usual way. He can remember crying just once in the months before his daughter's death.

After she died, he felt compelled to act.

He hired Johnnie L. Cochran Jr.'s law firm to sue the hospital. He pieced together evidence of what he saw as a coverup.

Sam Kushnick's mother had given Kasper a memo prepared by her late husband two months after the boy's death in October 1983. In it, Jerrold Kushnick recalled insisting to Cedars-Sinai officials that they warn other families whose children were in the same unit as his son about the boy's infection through a blood transfusion. His hope, Kushnick wrote, was "that we could possibly save another child's life."

Anique was in the unit at the same time as Sam, Kasper said. He should have been warned. Why wasn't he?

In the course of his lawsuit, Kasper obtained documents showing that Cedars-Sinai knew that at least three people who received blood from the same donor as Anique were identified between 1983 and 1985 as having AIDS. Again, why wasn't he warned until 1987?

Kasper's suspicions gained no traction in the courts. A judge threw out his case before trial, ruling that Cedars-Sinai and blood bank director Goldfinger had met accepted standards of care.

Kasper's anger only grew. His face still turns red as he recalls that Cedars-Sinai never even offered him an apology. Though he tells the story methodically — by now, it is nearly rote — his fury occasionally breaks through in a string of vulgarities.

His ex-wife, Nicole Pascale, doesn't fault Kasper for wanting "to make things right somehow." But, for her, it isn't possible to summon such emotion any longer.

"You can be consumed with rage and madness and despair and bitterness or you can … just accept what is, and move on," she said. "His choice was different."

Priselac, the Cedars-Sinai president, said his hospital has done what it can for Kasper and the other tainted-blood recipients. Unlike many other hospitals, Priselac said, it offered AIDS-related treatment and medications with no out-of-pocket costs beyond what insurers covered.

"We ultimately decided it was the right thing to do," he said. (Some families such as Ghaffari's accepted the offer, made in 1993. Others, including Kasper's, did not.)

As for Kasper's campaign, "it is absolutely not for me to judge or express an opinion about how other people deal with as tragic a situation as this is," Priselac said. "As a parent myself, I can't imagine what it must have been like for them."

In ensuing years, Kasper drafted missive after missive imploring congressmen, senators, even the FBI, to help him find answers. The responses grew more and more perfunctory or stopped altogether.

It was exhausting work. In April 2000, he had a stroke. He began walking with a limp.

His family yearned for normality and affection. Jaye Kasper, Bruce Kasper's daughter with Mara, was just 3 when her half sister died. All her life, she said, she has overheard her father's "constant" conversations about Anique.

"He's told me that she was his priority," she said matter-of-factly. "I knew that growing up."

But by 2004, even Kasper wondered if he shouldn't just quit.

"I couldn't think of anyone else to write to," he said.

IN THE MONTHS THEY SPOKE to each other by telephone, Kasper came to see Ghaffari as a fellow crusader — only fresher and more sympathetic. For the first time in a long while, he saw possibilities.

"I felt he had the potential to be the next Ryan White," Kasper said, referring to the Indiana boy who famously was barred from school in 1985 because he had AIDS. "The goal for us together would be to find the next Elton John" — a celebrity ally.

Ghaffari saw Kasper as a paternal figure. He asked for advice on how to tell former girlfriends that he had HIV. He felt bad that he hadn't told them sooner, although he said he had always used a condom.

Inspired by Kasper, Ghaffari continued his search for others like him. With help from Dubinet and the Internet, he found Kristen Lee, a soft-spoken, affable young woman who had given a speech at her former high school about how her blood transfusion at Cedars-Sinai changed her life.

Kasper dug out other names from his computer files. Together, the men decided that everyone affected should meet face to face. These people weren't like the politicians 2,500 miles away who had no reason to care. They were angry or bereaved parents like Kasper; they were babies like Ghaffari who had survived into adulthood.

"I had never met anyone with HIV before," Ghaffari said, let alone anyone infected in the same way he was.

The January 2005 gathering was in Kasper's spacious living room, just feet from the office where he kept documents amassed about the Cedars-Sinai tragedy in the last two decades.

The guests mingled for a time, enjoying light snacks. Kristen Lee and her mother were there, as were another HIV-positive young adult, Noelle Simeon, and hers.

Accompanied by Dubinet, Ghaffari was the last to arrive. He was excited.

"This was going to be the time when we could triumph and take on a terrible injustice," he said. "I thought we were going to gather and we were going to take them down. Everybody was going to get into it as much as I was."

Kasper got down to business, blunt as always. He saw evidence of a clear conspiracy among the hospital, health officials and the government, he said. He laid out examples in painstaking detail.

A case in point: He had requested information from the federally funded study of newborns at Cedars-Sinai, but the U.S. Centers for Disease Control and Prevention responded in 1998 and 1999 that it did not have the documents he was looking for. Yet another CDC letter, from 2000, said one key document had been destroyed a year earlier — after Kasper's first request.

Ghaffari looked around the room, studying everyone's faces.

"I could just see that everybody was being turned off by what [Kasper] was saying," he said.

When Kasper appealed for support, Ghaffari and his mother eagerly volunteered. No other hands went up.

Simeon's mother began to cry. In the past she had helped Kasper with letters, even traveling to Washington, D.C., with him to meet with senators in 1999. But now she worried that her daughter would be ostracized if she went public with her story, and that Cedars-Sinai would stop paying for the treatments and drugs she received there.

Lee's mother told the group that she wanted her daughter to focus on the future, not the past.

Kristin Lee remembers being struck by the toll Kasper's crusade had taken on him.

It "can eat people alive," she said. "Bruce has been working on it for so long, since his daughter died, and he has his own health problems. I'm just like, I don't know, I'd rather live my life the way I want to … enjoying my time when I'm here."

Kasper later said he had no expectations that day, summing up his guests' reaction with a curt: "They don't see it the same way."

But Ghaffari was deflated. "It just backfired," he said.

The meeting broke up with no plans to meet again.

Pretty soon, Simeon and Lee stopped returning Ghaffari's calls.

AFTER GHAFFARI returned to San Francisco for his last semester of college, his need for answers did not subside. In a strange way, the failed gathering made his quest seem all the more important.

Kasper, it appeared, was his sole ally.

Within weeks, Ghaffari sat down to write his first letters, carefully checking with Kasper first to make sure his tone would be just right.

"Hello," he wrote to Sen. Barbara Boxer (D-Calif.) in February 2005. "The series of events I am about to tell you are not pleasant ones. My name is Alexander Ghaffari and I have been HIV positive for 22 years."

After finishing his story, he closed with a plea: "To me, this spells C-O-VE-R-U-P in capital letters! I ask you as a survivor of these events to help Bruce and me find the answers to the logical questions we are looking for."

One letter followed another. He wrote President Bush, First Lady Laura Bush, the U.S. attorney general and an assortment of senators, representatives and governors across the country.

But as the months passed, his letters drew no action beyond polite referrals to other people or agencies. His requests were outside everyone's purview, it seemed.

He got no further than Kasper had.

From Cedars-Sinai, he got no new information. The hospital said it couldn't find the medical records from his birth and childhood, violating its own policy of keeping them on hand for 25 years.

Ghaffari, who now lives in Los Angeles, began thinking about how much time he was spending on his crusade. He didn't have a job, beyond an unpaid effort to produce a website and screenplay on the Cedars-Sinai tragedy.

He looked at Kasper and began to wonder: He talks so much about his fight for justice but not much about his daughter. What was she like? What did he miss about her?

"All he concentrated on was her sickness, the health problems, the doctors," Ghaffari said.

"He lost focus of what was truly the most important thing of it all — and that was his daughter."

Earlier this year, tests showed that Ghaffari had grown resistant to nearly all of the drugs on the market. He is now pinning his hopes on an experimental medicine through a clinical trial.

Meanwhile, he is getting his care at the hospital he has grown to deeply distrust, depending on Cedars-Sinai to treat him.

For all he has learned, he sometimes wonders if he ever should have started asking questions in the first place.

"Meeting Bruce was probably the worst thing and the best thing that ever happened to me," Ghaffari said. "I met Bruce, I saw evidence of a crime and I can't do anything about it.

"Where does that leave me?"


charles.ornstein@latimes.com

Copyright © 2014, Los Angeles Times
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