Anique Kasper arrived in the fall of 1980, a four-pound preemie with a case of jaundice. In the neonatal intensive care unit at Cedars-Sinai Medical Center, she received what should have been a routine blood transfusion.
Now, Anique's life revolves around her bedroom in her mother's Hancock Park home. Her bird-like body has shrunk to 35 pounds. She has difficulty speaking; a racking cough rumbles relentlessly in her throat. Friends long ago stopped coming by to play.
Anique Kasper, age 11, has AIDS, the price of that transfusion.
Her mother, Nicole Pascale, has had to sell her jewelry, borrow against her life insurance and take out a third mortgage on her house--all, she says, to stay afloat amid the escalating insurance premiums and co-payments on Anique's medical care.
Angry and desperate, Anique's father has appealed to Cedars: He wants the hospital to pay for her continuing treatment--wherever and for whatever she needs. He may have no legal claim, since AIDS was unknown in 1980; but he is certain he has an ethical one.
"I'm talking morality here," Bruce Kasper said recently. "I'm not looking for a pound of flesh. They are a multimillion-dollar institution . . . (and) you're talking about financial devastation for the families if they have to go through this on their own."
Anique Kasper is one of about 450 children and 6,060 adolescents and adults with AIDS in the United States who became infected through blood transfusions and blood products, mostly before the March, 1985, release of a test to screen blood for the AIDS virus.
In many cases, the parents had no idea that their child had received a transfusion--common in the care of premature babies. They learned of it only years later when the child became sick or, as in the Kaspers' case, when the hospital notified their pediatrician.
Hundreds are suing, arguing that hospitals and blood banks were slow to take steps to limit the risk of exposure to tainted blood. But most of the suits have failed, with juries finding that institutions were using procedures accepted throughout the industry at the time.
Nevertheless, specialists in bioethics are divided about whether such families deserve more, even if no one is technically liable, or whether they are merely groping for a culprit in the face of a painful injustice for which no one is to blame.
"To me, any time somebody goes into the hospital and they come out more injured than when they came in, even if the hospital wasn't actually negligent, I think there is some ethical responsibility toward that person," said Larry Gostin, a Harvard University bioethicist.
But Dr. Griffith D. Thomas, a Los Angeles pathologist and lawyer who has represented families in such cases, contended, "People (may be) harmed through no fault of their own or of someone else. Bad things happen to people, that's part of life. So I could not stand back and say, 'Well, they have a moral obligation to pay me for the damages that occurred, even though it's not their fault.' "
In Anique Kasper's case, it was clear there was something wrong from the beginning, her mother says. As a small child, she was bedeviled by infections. There were colds, pneumonia and spleen and gastrointestinal problems. She even seemed slow to begin to walk.
Then in 1987, Bruce Kasper got a call from Anique's pediatrician. The pediatrician had been called by a doctor at Cedars doing a "look-back study." It appeared that Anique might be one of a number of babies who had received blood from a donor who later died of AIDS.
Kasper called Pascale, then his ex-wife, at her office. She recalls screaming so loudly, even "the elevator guy heard me. (Bruce) said they wanted her to go in for a test. But I didn't have to go through the test. I knew (something was wrong) all along."
The Cedars doctor offered to enroll Anique in the study. She would be tested and the family would be counseled. There would be no charge for those services. But if Anique were to need medical care as a result, her family would have to foot the bill.
"We were appalled," recalled Pascale. "We couldn't believe it. You're talking maybe 30 children. And you're talking bankruptcy for most people with this disease. But if you're . . . a hospital, 30 people is nothing to take care of."
In disgust, the family rejected the offer and took Anique to a pediatric AIDS specialist at Childrens Hospital of Los Angeles. Once her disease had been diagnosed, they opted to keep her condition a secret from all but a few relatives and close friends.
There began for the family a strange double life. For example, Anique would head off to friends' houses to spend the night, once at the home of a daughter of a Cedars physician. Her mother would instruct her, "Remember to take your AZT and don't let anyone see."
At Childrens Hospital, Pascale believes the AIDS families were discreetly kept apart from each other. Once, she says, she recognized one of the other mothers. Through a social worker, Pascale sent a message suggesting they talk. A message came back: No, thanks.
"There's such a stigma, still, about not wanting the Beverly Hills society to know," said Pascale. "She said, 'Tell her I don't really want to talk to her, and she shouldn't talk to me if she sees me at a party or any other event.' "
Over time, Anique's health deteriorated. In 1987, her T-cell level was between 450 and 600 per cubic millimeter of blood. A critical measure of immune functioning, the T-cell level in a healthy person is 1,000 to 1,500. Anique's level has since dropped to 2, her doctor said.
At least every three weeks, Anique pays a visit to the hospital and spends two to three hours hooked up to an intravenous drip. She is on multiple medications, which leave her nauseated and drowsy. She stopped growing, her parents say, several years ago.
The struggle has also taken a toll on Kasper and Pascale. Each describes a devastating bout with depression. It long ago became difficult for Pascale to focus on work, but if she didn't continue, there would be no insurance for Anique.
In early 1990, Kasper says, the financial burden became intolerable. Anique's health was insured through a group policy covering Pascale's small business. The premiums had shot up and Pascale says she was facing either bankruptcy or cancellation of the policy.
So Kasper appealed to Cedars to pay for Anique's care. He had explored the possibility of suing but had been told by lawyers he had no case: The infection had occurred a year before the disease had even been identified, at a time when there was no way to screen blood for the virus.
When Kasper told one lawyer he was going to ask Cedars to pay, the response came back, "You've got two chances: Slim and none."
Surprisingly, Cedars offered to take on Anique's care. It would accept her insurance as full payment for any treatment. If the insurance were canceled, and Kasper could prove he could not replace it, the hospital would provide the care for free.
There would be limits, however. Anique would have to be treated at Cedars--which would require leaving the Childrens Hospital program she has been part of since 1987. And Cedars would cover her care only for conditions directly related to her AIDS virus infection.
"I think we really went beyond the bounds of what reasonably could be expected," said Elaine Auerbach, associate vice president for medical affairs at Cedars. " . . . It was really out of compassion, that was the pure reason. We know that we are not liable."
Kasper, however, has rejected the offer.
In his view, it would be traumatic for Anique to be taken away from the physicians and others she has come to know at Childrens. And, if the insurance then lapsed, she would have no coverage at Cedars for any condition unrelated to her AIDS diagnosis.
But he has no intention of dropping his demands.
Kasper learned recently that another baby who received a tainted transfusion at Cedars died of AIDS as early as 1983. It infuriates him that the hospital waited four years before contacting his family or Anique's pediatrician to warn them there might be a problem.
After all, it was possible in 1983 to identify AIDS as the cause of death, even though no blood test was available.
"If you're fighting for a just cause, and I know this is just, and you scream long enough and loud enough and in the right ear, you will be heard," he said bitterly. "Fortunately, I know a lot of people. I could make a lot of noise."
The question of liability for AIDS virus infections that resulted from transfusions before March, 1985, has become a hot issue in the courts nationwide. In most cases, the plaintiffs argue that even though there was no AIDS test available, the blood bank or hospital was negligent nevertheless--either in collecting blood from high-risk groups or in not using a "surrogate" test to try to screen out dangerous blood.
For example, critics say that after AIDS was identified in 1981 and epidemiologists identified groups at especially high risk, blood banks did not do enough to identify members of those groups among donors and to discourage them from giving blood.
On the other hand, it was not known at that time that a virus was causing the disease. And strong evidence that the infection was being carried by blood did not surface in the medical literature until 1982 and early 1983, attorney Thomas pointed out.
As for screening donated blood, the AIDS test became available in March, 1985. Before that time, there was no test for the AIDS virus. But there were tests for other infectious agents often found in the blood of the same high-risk groups.
In early 1983, for example, the U.S. Centers for Disease Control informed blood banks that even though there was no test for the cause of AIDS, a high percentage of those with the disease also happened to test positive on a certain hepatitis screening test.
Michael James Moriarty, a San Francisco attorney who has tried five transfusion-associated AIDS cases, is among those who argue that if blood banks and hospitals had immediately begun using that test they would have prevented many cases of AIDS.
Blood bank officials counter that no one in the field was using the test for that purpose at that time. Insisted Dr. Dennis Goldfinger, head of transfusion medicine at Cedars, "Before 1985, there was absolutely no evidence that this would have been helpful."
"If you look at it today, it does look as though had the screening been done in those early days, it may have eliminated those dangerous donors," he said. "But through the retrospectoscope, people become geniuses. In 1980, it was not even a discussed issue."
For that reason and others, the earlier in the epidemic a tainted transfusion occurred, the harder it has been to prove negligence, said Timothy R. Pestotnick, general counsel to the AIDS Foundation of San Diego, who has been tracking transfusion-related litigation.
"Obviously, it's a much more difficult case before there was (an AIDS) test," said Pestotnick. "The jury will hear (the defense attorney say) 'You're asking my client to have warned (the patient) about something that medical science had no test for.' "
But winning compensation may not be the sole purpose of an anguished parent's fight.
"Families really grapple for something to do, some sense of retribution," said Marcia A. Gonzales, a social worker with the Los Angeles Pediatric AIDS Network. "For most of us, suing is the best way to do that. A lot of times, the outcome doesn't matter."
Under the circumstances, several lawyers representing families in similar cases were surprised to hear of Cedars-Sinai's offer to Kasper. They said they knew of no other case in which a hospital had taken such a step in the absence of a court judgment.
"I would back off in a minute if a hospital said we will provide medical care for the balance of your client's life," said Moriarty. "I would back off and say (to the client) that's better than the settlement proposal."
"I've watched a lot of hospitals walk down this path and I think that's a very admirable position to take," said Pestotnick. "I feel sorry for the patient here, but given his or her legal standing, I would certainly consider their offer."
One afternoon recently, Anique sat in her mother's living room, a tiny figure perched on a large couch between her parents. In a voice at times barely audible, she spoke about her life and what has happened.
These days, she said, she spends most of her days sleeping. The drugs make her drowsy, but at night coughing keeps her awake. She has been too sick to go to school since last summer. And she can no longer visit her young half-sister, for fear of picking up germs.
"I'm scared that I'm not going to make fifth grade," she said. "If it takes a little more energy, I want to do it." As for what happened at the hospital, she said she, too, is angry.
"They took my life away. They did."