After years of complaints that Maryland's organ transplant agency borrows far more donor kidneys from other states than it supplies, the U.S. organ allocation system has decided to bump Marylanders awaiting kidneys to the bottom of the national waiting list.
When the policy takes effect in a few months, patients such as Christine Rickard, of Ellicott City, and Paul C. Ganz, of Abingdon, may face extra months or years of dialysis before they are offered a transplant.
Unless they are matched with a Maryland donor, virtually every other kidney patient in the nation who is matched will be offered the chance before them--no matter how long they have been waiting.
If the new policy were already in effect, 44 of the 50 Maryland patients who were offered matched kidneys from outside Maryland in 1998 wouldn't have been approached, Maryland officials said.
"If they think they're punishing the state, they're not--it's really affecting the patients," said Ganz, 29, who works on a department store loading dock and survives by administering self-dialysis four times a day. "It took me four years to get where I'm at now, near the top of the list."
Organs generally are made available first within the service area of an organ procurement agency. If no matches are found, they are offered to those on regional and national waiting lists. But that protocol, distributing organs by geography, sometimes gives organs to relatively healthy patients who are near available organs while sicker people die waiting. Each year, 4,000 people die awaiting transplants. More than 60,000 are now waiting for organs.
Because Maryland has two world-class transplant centers, drawing patients from across the nation, it tends to transplant a disproportionate number of kidneys. Every time a Maryland hospital transplants a kidney delivered from another state, Maryland's debt increases by one--even if the recipient is from out of state.
The United Network for Organ Sharing, the Richmond-based transplant consortium with a federal contract to manage organ allocation policies, decided last month that the Transplant Resource Center of Maryland must start reducing its kidney deficit by offering organs from Maryland donors for use by other states. The center broke no rules in falling so far behind, but the national organ network has lost patience with the imbalance, which has come at the expense of southern states, officials said.
The center--the organ procurement organization for all of Maryland except Montgomery, Prince George's and Charles counties--has 1,619 people on its kidney waiting list.
It currently owes 57 kidneys to sister agencies, down from 68 last year. But Maryland remains far and away the biggest kidney debtor in the country, said James Wynn, director of kidney transplants at the Medical College of Georgia and vice chairman of the organ network committee that changed the policy.
"When organs are siphoned off to Maryland, patients elsewhere in the country aren't getting transplants with those same kidneys," Wynn said. "The UNOS [organ network] board has gone way down the road to give the Transplant Resource Center of Maryland time to make substantive progress. I don't believe they made the kind of progress the board hoped to see."
But center officials and Maryland transplant surgeons say the state is being punished for its well-deserved reputation as a leading center of transplant surgery. Johns Hopkins University and the University of Maryland Medical System draw many patients from out of state. Many of these patients also are on waiting lists in other states--a way to increase the likelihood that a kidney match can be found.
"Why are patients being penalized for the success of the hospitals?" asked Marion Borowiecki, CEO of the Transplant Resource Center.
"Because of their success, nearly 4 percent of the nation's waiting list for kidneys is at these two hospitals," he said. "However, we are asked to supply that 4 percent by donations of kidneys from a relatively small population that makes up only 1.25 percent of the nation's population of potential donors."
The difference comes from out of state.
Demand is driven higher by the fact that Johns Hopkins and the University of Maryland both transplant organs that other programs reject, according to statistics from the organ network. "Many times, programs turn down an organ based on reasons that are faulty," said Stephen T. Bartlett, head of transplantation at Maryland. "We have a systematic method for assessing these kidneys to determine whether they are appropriate for transplant."
Bartlett and Borowiecki have asked Maryland's congressional delegation to pressure the national organ network to back away from the new policy, which the network's board adopted in Atlanta last month.
Ultimately, the issue could be settled by the U.S. Department of Health and Human Services, which has been tangling with the organ network for several years over the way it allocates donated livers. Last week, the Institute of Medicine issued a study largely backing HHS Secretary Donna E. Shalala's proposal to change priorities for allocating donated livers to favor the sickest patients instead of those who live the nearest.
But it isn't clear whether the federal plan will spark a legal challenge or how long it might be before a similar protocol could be adopted for kidneys.
Borowiecki and Bartlett are trying to boost organ donation in Maryland so the debt can be paid and so more Baltimore transplant operations can involve Maryland donors. The center obtained organs from 69 Maryland donors last year, roughly the national average based on population. Critics say it needs to be higher.
Every Maryland driver's license states whether the holder agrees to be an organ donor, and the self-described donor rate has climbed steadily since 1977. It now stands at 36 percent of the state's 3.4 million drivers.
Laytonsville, a Montgomery County town with 285 residents, is trying to become the first U.S. municipality with 100 percent of its residents pledged as organ donors. Since the campaign kicked off two weeks ago, 35 families have made the pledge, but it already seems clear to Mayor Charles T. White that all 103 families are not going to sign up.
"They're in the thinking stage," the mayor said. "We have a few that have indicated they're not interested. Some people are selfish. They would be willing to give one of their organs if one of their family needed it, but they didn't want to do anything more than that."
In the meantime, Rickard, a 65-year-old retired federal employee who has been waiting for a new kidney for six years, is torn over the dispute.
"I hope that Maryland and Hopkins both can continue to do a lot of kidneys, but they may have to back off," she said. "I would like to see fairness done. I've seen patients who are on dialysis who need a kidney bad, a lot worse than me. It's a hard thing to call."