Debate Growing Over Priorities In Medical Care

MINNEAPOLIS - At 65, Jeanette Dix was dying. The gray-haired homemaker appeared frail and sad, beaten by a rare liver disease.

At 18, Dawn and Kristen Winfield were dying too, but their story was different. The identical twins, who suffered from leukodystrophy, a rare genetic disease, had pretty smiles, photogenic faces and courageous charm.

With no insurance to pay for expensive transplants, Dix and the Winfield twins opened their lives to the news media, campaigning for donations like politicians stumping for votes.

Dawn and Kristen, of Davie, Fla., managed to raise $380,000 and win a promise from the governor of Florida to pay the rest of their bone-marrow transplant bills.

Dix raised only $8,000 and never received a new liver.

She died last October.

``It was distasteful when you had to spill your insides on the television screen,'' said her husband, Norman Dix, 64, of Margate, Fla. ``All I did was repeat myself and nobody listened.''

Too often, medical experts say, needy patients are forced to appeal to public sympathy to raise cash for risky medical procedures. For these patients, finding a donor is no longer the greatest challenge. Finding someone to pay for it is.

Dawn and Kristen had no trouble raising cash for their transplants, which were performed at the University of Minnesota Hospital. They became instant celebrities in south Florida, attending bake sales and car washes, rock concerts and dinner parties. Dawn died Jan. 16, two months after her sister.

``Kristen and Dawn didn't want to do this. They didn't want to become public figures,'' said Ronne Melnick, a bank administrator who oversees the twins' $380,000 trust fund. ``But it was do that or definitely die. That's wrong.''

Taxpayers likely will pay about two-thirds of the Winfield twins' hospital bill, which could run as high as $1 million. When the trust fund money is spent, Florida's Children's Medical Services and Medicaid dollars will pay the rest.

The Dix and Winfield cases raise troubling questions: Should taxpayers spend huge sums on patients with slim chances of survival? Or should the money be spent on underfunded state programs like prenatal care? And is it fair that only the telegenic few are given private donations and a large chunk of limited public-health money?

When willing news media broadcast a dying child's saga, many Americans reach for their checkbooks. The poignant stories touch people, who become eager participants in the drama. Savvy politicians promise to pick up the rest of the bill.

``We're the only country in the world that determines who can get a transplant by using a quiz-show begging format,'' said Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota Medical School.

``It's inexcusably pathetic, dehumanizing and unfair to children,'' he said. ``It's a spectacle that society somehow tolerates. Even though it's awful, we enjoy watching it unfold.''

People are willing to pay for one needy family, but not for every needy family, medical experts argue. The system works for those who can afford it. For those who can't, it often fails.

``In our society, we are not egalitarian when it comes to health care. We do not support the notion that health care is a right,'' said Dr. Phillip Pennell, director of the ethics department at the University of Miami School of Medicine.

Lawmakers and medical experts are making some difficult choices.

In Oregon, for example, the state legislature has virtually eliminated state-financed transplants, choosing to spend the money on more common medical problems, like drug-addicted babies and prenatal care.

``Florida and every other state should be asking in a dispassionate way: How do we buy better health care for our children?' '' said former Colorado Gov. Richard Lamm, who refused to spend state money on a teen-age girl's liver transplant in 1984. The transplant was privately financed, and his decision was widely criticized.

``The answer is not on bone-marrow transplants that cost $200,000 apiece,'' Lamm said.

Last August, Florida Gov. Bob Martinez pledged to help Dawn and Kristen. He said the state would pick up their medical expenses once the trust fund ran out, regardless of the cost.

``This happens all the time. It's almost an American tradition,'' said George Annas, health-law professor at the Boston University School of Medicine. ``In the broad scheme of things, a half-million dollars is trivial. A governor gets a helluva lot of political mileage. It's cheap.''

``When you have scarce resources and there are many, many needy people, it's a difficult judgment call,'' said Pennell, the University of Miami ethics expert. ``Is it not possible it could have worked?''

Dr. William Krivit, the twins' physician at the University of Minnesota, figured they had a 60 percent chance of surviving the procedure. ``The opportunity to change their lives around was something the patients deserved,'' he said.

In Oregon, the state legislature voted in 1988 to restructure its health-care system. The new policy provides services to the needy according to a list of priorities. Medical services falling below a cut-off point are denied, even if it means the death of a patient.

Lawmakers reasoned that the money from one risky transplant could help dozens of other patients. A 2 1/2-year-old boy with leukemia was one of the first to die in the state when his mother's plea for a bone-marrow transplant was turned down.

Some public-policy experts say other states should follow Oregon's example.

``It is the harbinger of where all of the United States is headed,'' Lamm said.

Even though Kristen died last November and Dawn died in January, doctors say they learned some lessons about the complicated disease. Friends say the transplants gave the twins hope.

Norman Dix wanted the same chance for his wife. He lobbied newspapers and TV stations, visited churches and synagogues and phoned his congressman. He even called the White House.

``It was like the `Wheel of Fortune,' hoping you would hit the big one,'' Dix said. ``It never happened.''