Transplant leaders are debating national rules for the distribution of deceased donors’ faces and hands, tackling ethically challenging questions such as which disfigured patients across the country should get priority for these surgeries as they become more common.
The thorny issues are likely to include whether certain patients, such as children or the most severely maimed, should go to the top of waiting lists for donor faces and hands.
The organization that oversees kidney, liver, heart, and lung transplants in the United States has assembled 18 industry leaders, including two from Boston, to recommend policies for faces and hands, a step that signals mainstream medicine’s growing acceptance of these once-futuristic operations.
Dr. Bohdan Pomahac, a member of the group and director of plastic surgery transplantation at Brigham and Women’s Hospital, said national criteria for selecting patients and evaluating transplant programs’ performance are necessary to help recruit more donors and to convince health insurers to cover transplants, which are still considered experimental.
“Right now no one wants to pay for it,’’ said Pomahac. “In the end they are right. We have to provide the data. We have to show that patients are doing well.’’
Arthur Caplan, a bioethicist at New York University Medical Center, cautioned that it is too soon for widespread expansion of face and hand transplants. He worries that the promise of government or insurance reimbursement for the operations in the near future may be “fueling too many programs coming in too fast.’’
Given that the first US face transplant was done just over five years ago, Caplan said, “these transplants are by no means ready to be called a therapy. If you have five or six programs with operations out 10 years, then you could really see what is going on’’ long-term for patients.
Transplant surgeons, though, said the best way to monitor results is to establish national standards.
Since 2008, three US hospitals have performed seven face transplants, while 20 patients have undergone hand transplants, though many more hospitals are developing programs.
“There isn’t even a national registry of who is being transplanted and what their outcomes are,’’ said Dr. Sue McDiarmid, medical director of hand transplants at the University of California at Los Angeles Medical Center, and chair of the group developing policies. “We are way back in the dark ages even in terms of knowing something so simple and basic.’’
So far, the number of procedures has been small, but as comfort with the transplants grows and if insurers start covering them, interest is likely to expand. When that happens, the organ sharing network will need criteria to rank patients waiting for faces and hands because of disfigurement caused by cancer, accidents, assaults, or war injuries.
The US Department of Health and Human Services set the stage last July, when it decided that
faces and hands qualify as organs. It directed the United Network for Organ Sharing, a private group hired by the government to oversee transplants, to develop rules and monitor transplant programs.
For other organs, patients who have waited the longest or are most likely to die without a transplant generally go to the top of the list. Children, too, usually are given an advantage, said Richard Luskin, president of the New England Organ Bank and co-chair of the policy group.
Surgeons from three Boston hospitals that offer hand transplants — the Brigham, Massachusetts General Hospital, and Boston Children’s Hospital — met last year to work out a priority system for recipients in the region. They agreed that transplant candidates and potential donors should first be matched by size, age range, and approximate skin tone. If more than one transplant candidate matches a donor, then doctors would look at several other criteria, including the likelihood of rejection.
In addition, patients who need two hands get preference because of their greater disability. But the Boston surgeons could not agree on whether children should be ranked higher. This would become an issue only if an older teenager was competing with a young adult for the same donor.
Arguing that children should get priority, Dr. Amir Taghinia, a hand surgeon at Children’s Hospital, said nerves regenerate more quickly in the young, which could lead to better outcomes. But Pomahac wondered how doctors weigh a teenager’s need against that of a 20-year-old who lost his arm to a land mine while in the military.
“We ran into issues of where do we draw the line,” he said.
Another tricky decision will be how transplant centers measure success. For recipients of traditional organs, the benchmarks are relatively straightforward: How long did the patient live following surgery? How long did the organ last?
But face and hand transplants are not life-saving. So determining success will be more subjective, and may include factors such as aesthetics and how well the patient can smile or grasp a pen.
Pomahac said a national system could expand the number of donors for potential transplant candidates.
The Brigham has three patients waiting for face transplants, and one for hands. They have been waiting between two and 18 months. While families have offered to donate loved-ones’ hands and faces, they have not been good matches for these patients, Pomahac said.
Outside of New England, only the Cleveland organ bank has agreed to recruit donors for Brigham patients. Other transplant programs nationally are facing similar challenges recruiting donors from a wide area. Some procurement agencies are reluctant, in part because they lack procedures for training staff, obtaining consent from donor families, and retrieving the organs.
“Right now, we just try to do the best we can for individual patients,’’ said McDiarmid of UCLA. “It makes it difficult for the field to go forward.’’