Health

Feds: Sickest Go To Head Of Line

February 26, 1998 / 5:55 PM EST / AP

The nation's transplant program must offer donated livers to the sickest patients first, the government said Thursday, promising to overthrow a system that gives priority to patients who live closest to the donor.

The action caps a nasty political fight that has dragged on for more than three years as the Department of Health and Human Services debated rules governing the transplant program. The dilemma is how to distribute 4,000 livers each year among 7,000 waiting patients.

On one side is the United Network for Organ Sharing, which runs the transplant program and established the current policies. The network is controlled by transplant centers, most of which benefit from the policy that assures small programs will be offered organs donated locally.

On the other side are relatively few larger centers that care for the sickest patients and have a largest number of people waiting. Led by the University of Pittsburgh, a giant in the liver transplant field, they have lobbied for a system based on medical need.

HHS still has not issued rules governing the transplant network, but it released a letter Thursday saying it will require that the organ network put patients with the greatest medical need "at the head of the list."

"We can assure Americans that organ allocation policies are equitable, and that those who need organ transplants will be treated according to medical need, no matter where in the country they may be hospitalized," HHS Secretary Donna Shalala said in a six-page letter to 89 members of Congress who have expressed interest in the issue.

The waiting time for livers is five times as long in some parts of the country than in others.

Joel Newman, spokesman for the organ network, did not defend the substance of the current program but said it was created by a consensus of transplant professionals.

Patients and advocates demonstrated outside HHS Thursday, prodding Shalala to issue the formal rules. They delivered 1,000 daffodils to symbolize each of the patients who has died waiting for a liver in the past three years.

"How much longer must I wait?" asked 13-year-old Daniel Canal of suburban Maryland, whose skin and eyes are yellowed from liver dysfunction. He's been on the transplant list for five years waiting for a liver, small intestine and pancreas. "My body is gradually wearing down," he said.

HHS sent the flowers to patients at the National Institutes for Health's clinical center.

The United Network for Organ Sharing runs the transplant program under a federal contract. Legislation establishing the system was signed in 1984, and network administrators wrote their own rules in the absence of HHS regulations. The rules will affect all organs, but livers have been the only ones to engender fierce debate.

Politically, the network has had a powerful ally in Sen. Bill Frist, R-Tenn., a heart transplant surgeon who lobbied HS to continue allowing the network to set its policies.

On the other side are Pennsylvania's Republican senators, Rick Santorum and Arlen Specter, who chairs the subcommittee that finances Health and Human Services' programs. A friend of President Clinton with ties to Pittsburgh did some personal lobbying in 1996 and helped move the process forward.

There was one issue all sides agreed on: the best solution is increasing organ donations.

More donations "would substantially reduce the number of Americans who die while awaiting a transplant," Shalala said. "That must be our first goal."