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Experts discuss agony of deciding "who lives, who dies"

A 27-year-old law student suffers from a rare inherited disease that causes him constant pain. His body lacks a protein that processes certain fats, so they accumulate in his liver and spleen. His bones are brittle and likely to break. The disease, although not life threatening is lifelong.

The fact that last April the U.S. Food and Drug Administration approved a therapy that can help him manage his disease should be good news, but there's a catch. The treatment will cost $300,000 every year for the rest of his life. It takes 12 average Americans working full time to make that much in one year.

Is it worth it?

On the front page of the New York Times is the story of a one-month-old premature infant weighing just over one pound. The child has suffered major bleeding in the head and requires a respirator to breathe. Treatment is costing $2,000 each day. Statistics say that only 35 percent of such children survive, and of those, many will have suffered irreparable damage.

Should the plug be pulled?

"We're not going to give you the answers. What we are going to do is make the agony of decision making so intense that you can escape only by thinking," said Fred W. Friendly, moderator of "Who Lives, Who Dies: Technological Advances and Ethical Choices," one of five roundtable discussions presented Monday, Sept. 30, as part of Stanford's centennial celebration.

Friendly, director of the Columbia University Seminars on Media and Society, posed questions related to these two cases to a panel of physicians, scientists, health policy makers, theologians and ethicists.

Although the first case is hypothetical, the disease, called Gaucher's, and the new drug therapy, offered by the trade name Ceredase, are real. Canadian physician Ann Clark, currently working on a master's degree in health research and policy at Stanford, would advise the patient suffering from Gaucher's to try painkillers and other treatments less costly than the newly approved therapy first. But should that route fail, she would recommend considering Ceredase in this case.

Ann Bremers Von Gehr, physician and administrator at Santa Teresa Community Hospital in San Jose, says that in the Kaiser health maintenance organization, the treatment would be covered by insurance and that the insurance system has adequate funds to treat a small number of patients with the disease.

But does that mean only patients who have insurance can get the treatment? What about those who don't?

Nobel laureate Paul Berg feels that the treatment should be made available and is confident that the cost will come down. As the therapy receives further validation, scientists will learn more about it and find ways to produce it less expensively, he explained.

"This is an extraordinary paradox," said Berg, the Willson Professor of Biochemistry and director of the Beckman Center for Molecular and Genetic Medicine. The U.S. government is providing money to researchers to develop treatments for many diseases, coming up with new ways to save lives, he said, but then is unable to pay for the costs.

Pierre DuMaine, first bishop of the Roman Catholic Diocese of San Jose, sees the Gaucher's disease story as an analogy for exactly what society is confronting.

"Just as [the patient] has agreed to therapy, he has to agree to the economic consequences," DuMaine said. If the Gaucher's patient gets his drug, for example, there may be many uninsured mothers not receiving adequate prenatal care, which could have prevented the problem of the premature infant.

"We're spending enough on health care," said Alain Enthoven, Marriner S. Eccles Professor of Public and Private Management in the Graduate School of Business and professor of health research at Stanford University Medical School. Already the federal government is spending twice as much on health care as on education and almost twice as much as on defense, he said.

The problem, Enthoven suggested, is in how that $750 billion is spent. He proposed changing the incentive for health care systems, encouraging the elimination of waste, duplication of services and unnecessary surgery, for example. In the case of the premature infant, he would like to see a system in which a committee studies the question of neonatology and develops uniform standards that are applicable to all and applied regardless of ability to pay.

Disagreement on panel

The need for restructuring is clear, but the panelists disagreed about who should decide who lives and who dies, who gets treated and who doesn't.

John Kitzhaber, physician and senate president for the state of Oregon, advocated Oregon's system, in which funding decisions for health care are made by legislators in the broad context of funding for all other social services. Then prioritization for how the money is spent is made by health care providers and recipients, through town hall meetings, for example.

But other panelists, such as Berg and Woodrow Myers, former health commissioner for New York City, are uncomfortable with such important decisions being left in the hands of legislators.

"There are no good ways for legislative bodies in most states to deal with those kinds of decisions," Myers said.

Society as well is ill-equipped to do a good job with these decisions, Enthoven said. If Kaiser is the only insurance group that decides to provide coverage for Gaucher's disease, for example, then all patients will find a way into that system and bankrupt it. "There has been a mismatch between willingness to provide services and insistence to have them," said Berg.

"What we need is a supreme court of medical technology," Enthoven said, one that could look at and objectively weigh the costs versus the benefits.



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