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THE BIG WAIT
SOME SEE UPSTATE SHORTCHANGED IN ORGAN TRANSPLANTS

For Charles Rechlin to get a second chance at life, someone else must die.

He has spent six months in Buffalo General Hospital waiting for a heart transplant with that thought gnawing at his gut.

If Rechlin lived in a city outside New York State, he would get first crack at a matching heart donated from that city before it was offered elsewhere. But New York distributes donor hearts and livers statewide without regard to where they are donated.

This statewide sharing drains upstate New York of organs, according to members of the organ transplant community in Buffalo, Rochester, Syracuse and Albany.

They say upstate New York donates far more than it receives in a system that concentrates organs in the larger transplant centers in New York City with the longest lists of waiting patients.

"That sucking noise you hear is the sound of our organs going downstate, and it's creating a sense of futility up here," said Dr. James P. Houck, Rechlin's doctor.

With organs so scarce, some patients are lucky. Others aren't. About 4,000 people nationwide died in 1996 while waiting for transplants of all types.

Nowhere in medicine does emotion run so deep as in how to choose who will get a transplant.

New York's system for sharing hearts and livers distributes them regardless of where they are donated based on a patient's medical urgency, blood type and time spent on a waiting list.

The system is supposed to make the allocation of organs fairer and give smaller transplant centers access to a larger pool of donors. It doesn't work so easily.

With demand for organs outstripping supply, what's fair to one group is inequitable to another.

Surgeons and organ procurement officials involved with the smaller upstate transplant programs cite a host of problems. But the complex nature of the transplant system makes it hard to prove their case.

Among the upstate concerns:

They can't do enough transplants to ensure high standards or justify their existence.

So many patients await transplants downstate that the only way for upstate patients to move up in line is to accumulate time on a list.

With little consensus on when to list patients, the lists have been manipulated by loading them with patients early.

If organs were offered to local people first, it would generate publicity and encourage donation.

State health officials said they don't plan to change the system but have promised to help upstate transplant programs if the concerns turn out to be true.

"If we find upstate is unfairly disadvantaged, we'll look at an intervention," said Dr. Barbara DeBuono, health commissioner. "But we've got an objective approach to organ procurement and sharing."

Indeed, the Clinton administration is looking at New York as a model for how to reorganize the nation's organ distribution system.

Program needs organs

Recruited in 1996 to build up the heart transplant program in Buffalo, Houck instead has experienced frustration.

Buffalo General did nine transplants in 1996, four in 1997. Until mid-March, the only hearts offered to Houck in the last eight months were organs that had been rejected for poor quality by the state's biggest transplant centers, Columbia-Presbyterian and Mount Sinai medical centers in New York City.

Houck recently flew to another hospital to pick up a heart for Rechlin only to learn it wouldn't support his patient.

Rechlin, a 57-year-old former Erie County water treatment plant operator from Derby, chokes back tears when he talks about his disappointment. Hospital staff had prepared him for surgery.

He lives in a cardiac care unit tethered to a mechanical device that pumps blood into his heart, which was damaged in an attack last June. Each day is filled with an agonizing mix of fear and hope.

Grief is always nearby. Rechlin's soul mate in the unit, another transplant candidate on an assist device, died last week.

"If it wasn't for my family and the nurses here, I would go nuts," Rechlin said.

Quality is threatened

With organs so scarce, Houck is not doing the minimum 12 transplants a year required to stay approved by Medicare, the government health program that pays the bills for patients 65 and older.

It's harder to maintain quality.

The sharpness of the transplant team during and after surgery is key to a patient's survival. Studies show low-volume centers -- those that do fewer than 12 to 15 cases a year -- post lower survival rates.

Houck said the small size of his program keeps local cardiologists and health insurers from referring patients. Instead, most area transplant candidates go to hospitals in Pittsburgh or Cleveland.

The organ shortage only worsens as medical science improves.

In 1988, when the Buffalo General program began, there were 1,030 people in the nation waiting for hearts. The number has nearly quadrupled to 3,698 in 1996. During the same period, the number of donor hearts increased by only one-third, from 1,793 to 2,393.

Keeping an eye on Rochester

If statewide organ-sharing works, Dr. Oscar Bronsther's liver transplant program at Strong Memorial Hospital in Rochester may provide the evidence.

To kick-start the program, the state until Jan. 1 allowed locally recovered livers to be offered first to the sickest local patients.

Bronsther performed 44 transplants in 1997. But he said he expects to see a decrease this year and an increase in patient waiting times, which were good compared to other liver programs while he was exempted from the rules.

Bronsther criticizes statewide sharing, saying it increases costs and leads to illogical situations.

For example, he said the system nearly resulted last week in his shipping a liver to New York City while a New York City hospital prepared to ship a matching liver to him.

"Things don't get any goofier than that," he said.

Bronsther offers statistics that suggest Rochester is not well-served by the state's system. He said residents receive liver transplants at the rate of about 11 per million population compared to 17 per million downstate.

But the transplant community is flooded with statistics to back different arguments.

To James Piper, director of Westchester Medical Center's liver program, keeping organs local is better, but he can't prove it.

"You're seeing a hot debate over how to allocate scarce resources," he said. "The problem is no one has the data to see which side is right."

How allocation works

Debate in New York over how organs should be allocated occurs against the backdrop of a much noisier national controversy.

An independent agency, the United Network for Organ Sharing, governs how organs are procured and distributed. The network comprises 63 nonprofit organ-procurement organizations in 11 regions across the country.

When an organ becomes available in one of the 63 areas, it is offered first to a patient in that area and then to a patient in the region. If no match is made on the regional list, the organ is made available to patients nationwide.

New York is the only state that is its own region, and unlike other regions, it does not offer hearts and livers locally first.

But pressure is building in the nation to adopt New York's policy.

Federal officials last month said they planned to dismantle the regional network and offer organs to the sickest patients regardless of where in the country they lived.

Donna E. Shalala, secretary of Health and Human Services, questioned the equity of giving preference to local use of organs when the organs could be used to save the lives of sicker patients.

For example, she said in 1996 more than 60 percent of livers were used where they were donated, and more than 50 percent of them went to patients not sick enough to be hospitalized. But in the same year, nearly 400 of the 953 patients who died while waiting for livers were hospitalized.

As in New York, the national debate pits smaller transplant centers that want to keep organs local against larger programs interested in access to a bigger donor pool.

State to look at inequities

Health officials defend statewide sharing, saying it is the fairest system as long as physicians agree on how patients get on waiting lists.

Physicians accuse each other of "loading" the lists. But there has been movement, especially with livers, to reach a consensus on when patients should be entered.

Dr. DeBuono said she has asked two state groups, the Liver Consortium and Transplant Council, to review policies for listing heart and liver patients. She also vowed to review Rochester's liver program after six and 12 months.

Help for Buffalo's heart program problems may be another matter.

Plans originally called for Buffalo General and Strong Memorial to cooperate, with each sending the other patients. In that way, they might attract business from large health insurance companies, which look for transplant hospitals that offer "one-stop shopping."

Not only has that not happened, but Strong Memorial has applied to the state to open its own heart transplant program.

State officials said they would prefer if the programs cooperated and if Buffalo General tried to increase referrals from local doctors.

Houck said he's interested in cooperation. But he's also planning to ask officials if he can do with hearts temporarily what Rochester did with livers -- keep them local.

"We would get more referrals if we had a better program. But to be a better program, we need more organs," he said. "It's the old chicken-and-egg problem."

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