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Organ donation guidelines could harm CF patients
Saturday, April 24, 1999 By Christopher Snowbeck, Post-Gazette Staff Writer
A University of Pittsburgh Medical Center surgeon says new international guidelines for placing patients on waiting lists for donated lungs aren't useful when considering patients with cystic fibrosis.
If transplant centers were ever forced to adhere to the guidelines, people with cystic fibrosis might not be eligible for a transplant until it was too late, said Dr. Robert J. Keenan, UPMC chief of lung transplantation.
Keenan based his conclusion on his study of 164 cystic fibrosis patients evaluated for transplant at UPMC between 1990 and 1998. The international guidelines assess patient conditions by measuring the volume of air that can be expired and the percentage of oxygen and carbon dioxide in their bloodstream.
Keenan presented the findings yesterday at an International Society for Heart and Lung Transplantation meeting in San Francisco.
Cystic fibrosis affects about 30,000 children and young adults. Characteristics of the disease include the production of thick mucus, which can disrupt organ function and lead to chronic respiratory infections. Patients benefit from double lung transplants, but there are not enough organs to match the need. Also, in the competition for donor lungs, cystic fibrosis patients are outnumbered by patients with other diseases.
Doctors representing heart and lung transplant associations from around the world agreed last fall to create guidelines on when patients should be put on waiting lists; the guidelines also give doctors advice on when to refer patients for transplant. The concern has been that if patients are put on the list too early, they might receive a transplant when they could live without it, Keenan said. That could deprive a sicker patient of the organ.
But cystic fibrosis patients need to be put on the list at an earlier point than the guidelines would suggest, based on the level of carbon dioxide in the blood, according to Keenan's study. The other guideline -- the volume of air than can be expired -- did not help predict when CF patients would die on the waiting list, he said, and therefore isn't useful.
Keenan's study found that the presence of infection-causing organisms and the inability of patients to walk 800 feet within six minutes were significant predictors of death on the waiting list. But those predictors are not included in the guidelines.
Dr. Robert Love, director of the lung transplant program at the University of Wisconsin, said the findings are worth considering.
"CF does have some specific peculiarities that make it hard to put those patients into the categories of standard listing," Love said. "Maybe CF patients ought to get an additional 3 to 6 months on the waiting list."
But Love disagreed with Keenan's overall assertion that the new guidelines, combined with the current U.S. organ allocation system, will lead to an increase in the number of CF patients who die waiting for transplants.
UPMC officials have criticized the United Network for Organ Sharing for its policy of directing organs to patients in the same geographic region as the donor before offering the organs to other regions. The University of Wisconsin is one of the transplant centers that supports the current allocation system, in part because the state of Wisconsin has had success boosting donation locally.
"We generally don't send a lung out of the state, not because we don't wish to share with other people but because we always have someone who is appropriate to transplant," Love said.
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