Shalala seeks to revamp organ-donor policy

Art Nadler

Friday, June 5, 1998 | 9:54 a.m.

Local people awaiting organ transplants may find themselves waiting longer if a proposed change at the federal level takes place.

As it stands, kidneys, pancreases, hearts, livers, lungs and other organs are received by patients within the region they are harvested, according to local priority lists.

But Secretary of Health and Human Services Donna Shalala wants a national priority list, whereby organs harvested in Las Vegas, for example, would be delivered to Minnesota if that was where the greatest need existed nationally.

Around the country, there are about 60 regional centers that manage organs, including those in Las Vegas at University Medical Center and Sunrise Hospital and Medial Center. Shalala wants the organization that oversees these centers, the United Network for Organ Sharing (UNOS), to establish the new nationwide priority list.

The proposed change has erupted into a bitter feud between UNOS and Shalala.

UNOS says people on their waiting lists will be bumped by patients at larger centers in major cities with longer waiting lists.

Representatives from UNOS and Shalala's office are poised to begin negotiations Monday in Washington with the hope of reaching an amicable compromise. But that may be difficult.

Shalala, accusing UNOS of undermining her regulation change, fired off a terse letter Monday to members of Congress.

"I am deeply concerned about the recent effort by the contractor... UNOS, to misrepresent the provisions of the regulation ..." Shalala wrote.

"Patients who need an organ transplant should not have to gamble that an organ will become available within a particular arbitrary geographic area. ... Instead, patients throughout the country should have a more equal chance of receiving an organ, based on their medical condition and the judgment of their physician."

Dr. Jose Zamora, chief of transplant surgery at UMC, said the problem with giving organs to patients who are most ill is that they have the greatest chance for rejection and death.

"Everyone who gets transplanted shouldn't be on death's door," the surgeon said.

Claudia Swift, transplant coordinator at Sunrise Hospital, says Shalala's proposal would force smaller centers to close, leaving only the larger transplant facilities to flourish. Patients would be forced to go out of state, she said.

"One of the biggest things for patients is having a support system," Swift said. "Relatives wouldn't be able to go out of town. It would be too expensive. If there were complications, the patient would have to go back, and that could get expensive."

Cathleen Downney, 36, has been undergoing kidney dialysis for 1 1/2 years. She's been on a transplant list for more than two years. Downney is high on the local list because she's been on treatment for so long. A national list, she feels, would lower her status.

"I disagree with it (Shalala's proposal)," Downney said. "I think the organs should go to the healthier patient because their chances of survival are better."

But Dr. Berge Dadourian, a Las Vegas cardiologist, thinks expanding the organ- donation program nationally could widen the patient base, once tissue types were matched. The surgeon says small centers might close, but the larger ones with more experienced physicians will survive. And centers that have surgeons with more experience, Dadourian said, tend to have fewer complaints.

Originally scheduled to take effect July 1, Congress delayed implementing the regulation changes until Oct. 1 to allow more public comment. Also, the Senate Labor Committee and House Commerce Committee will hold a joint hearing on June 18.

Rep. John Ensign, R-Nev., said he signed a letter encouraging Shalala to delay her decision.

"This would prevent us from expanding," Ensign said of Nevada's existing kidney and pancreas transplant programs. "It could also bring politics into organ transplants. Bureaucracy could slow down the process."

Ensign said that he supports the local donor program, but that some changes need to be made.

A spokeswoman for Sen. Richard Bryan, D-Nev., said he is undecided and will have to measure the pros and cons of adopting a national donor program.

In a written statement, Sen. Harry Reid, D-Nev., said: "My wife Landra and I are both organ donors, and we believe strongly in organ transplantation. I have been working to improve the nation's organ transplantation system since I first went to the House, where I worked closely on the science committee with Vice President Gore. ... I plan to examine her (Shalala) response closely.

"My concern is that a fair and equitable system is developed, and that no deserving patient is closed out of the transplant process."

Ken Richardson, executive director of the Nevada Donor Network, thinks Shalala's proposal is being pushed by large transplant centers with long waiting lists and not enough donor organs. He feels it would be unreasonable to make patients travel outside their communities. He added that transporting perishable organs between states is problematical, with such problems as possible delays by airlines.