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HHS To Overhaul Transplant Program

February 27, 1998

WASHINGTON (AP) _ It took an $8,000 flight to get Cleo Gilmore his new liver. Fearing he would die before reaching the top of the local waiting list, the Philadelphia man signed up in Miami. Two months later, he had a liver.

``The system is grossly unfair,″ Gilmore said, noting that not everyone can afford to charter a midnight plane ride.

Responding to similar complaints, the government said Thursday it would change the controversial system that gives local patients first crack at locally donated organs. The system should help the sickest patients first regardless of where they live, said Donna Shalala, secretary of the Department of Health and Human Services.

``We have not achieved equitable distribution to those with greatest medical need,″ Shalala said in a letter Thursday to 89 members of Congress who have expressed interest in the issue. When the final rules are eventually issued, she said, they will that put patients with the greatest medical need ``at the head of the list.″

Still, after more than three years of debate, HHS still hasn’t issued formal regulations that would force a new system.

``It doesn’t mean anything until she signs them and gets them out,″ said Craig Irwin, president of the National Transplant Action Committee.

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 policy. Organs first are offered to all patients locally, no matter how sick they are. Then they are available regionally, and then nationally. The network is controlled by transplant centers, most of which benefit from the policy that assures small programs will be offered organs donated locally.

But because donors and patients are not evenly distributed across the country, the waiting time is five times longer in some parts of the country than in others.

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

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 including Gilmore demonstrated outside HHS Thursday, urging 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.

HHS officials, who sent the flowers to patients at the National Institutes of Health, said the letter’s release on the same day as the rally was coincidental.

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.

These rules _ first discussed in 1994 _ will be issued ``as soon as possible,″ HHS spokesman Campbell Gardett said. ``They’re very complex, sensitive and divisive,″ he said. ``We want to get the balance right.″

The issue is important to many medical professionals. It’s prestigious and lucrative for a hospital to run its own transplant program.

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

On the other side are Pennsylvania’s Republican senators, Rick Santorum and Arlen Specter, chairman of the subcommittee that controls Health and Human Services’ budget.

Backers of the system say offering organs locally encourages people to donate organs and supports many programs. Since the system was put into place, the number of liver transplant programs has increased from 71 to 124.

Meanwhile, Pittsburgh, which performed 555 transplants in 1990, a year before the current system began, did just 250 in 1995.

This debate is unrelated to another contentious issue in liver transplant policy: which medical conditions should receive priority for the scarce livers. The network has largely resolved a controversy pitting patients who are acutely ill against those who have chronic diseases.

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