The United Network for Organ Sharing recently altered the rules of the organ transplant system. Geography is no longer as crucial a factor in securing a needed organ. Some view this as a blessing. Others suspect inequity has shifted rather than vanished. Follow the story below or at the original source to learn more.
Sharon Fawcett is 53. She has end-stage liver disease. Roscoe, her husband, and Sharon just celebrated their 29th wedding anniversary. She finally got the New York skyline dinner she’d wanted. Unfortunately the whole thing took place in a hospital lounge due to her illness. Sharon was too sick to really enjoy much of the food. “I’d rather not have had to give it to her that way,” expressed Roscoe.
Sharon is one of over 14,000 people in the United States in line for a liver transplant. One in every ten people will die before an organ becomes available.
The amount of time a person waits varies across the nation. At Mount Sinai, where Sharon is, there are 350 people on the transplant list. Less than one in four is likely to receive the organ they need.
In North Carolina, Duke University has a waiting list of about 50 patients. It is estimated that about 70 percent of these patients will receive a liver for transplant.
Some people can live for a long time on the transplant list. Roscoe Fawcett says his wife won’t be able too.
The United Network for Organ Sharing (UNOS) is a nonprofit group that regulates and oversees the US’s organ transplant system.
A vote was recently cast to revise how the system functioned.
Geographic regions have great determining power on transplants. UNOS aims to loosen the boundaries. They say this move will improve odds for the sickest patients even in areas where livers were most needed.
UNOS’s new rules have been debated over for five years. There are many critics who see the move as simply redistributing the need rather than solving it.
“They don’t actually want to solve the problem,” says Sommer Gentry.
Gentry is a mathematician at the US Naval Academy. She proposed a more involved makeover of the organ transplant system. UNOS rejected her plan in May. Gentry’s plan would have lowered the number of geographic regions. She shifted the boundaries to balance the number of predicted donors with the number of patients in need.
“They’ve decided to do as little as possible,” adds Gentry.
Committee chair Dr. Julie Heimbach says the final proposal divided the transplant community. She admits that the revisions are a compromise.
“It’s been a very long and arduous path,” she said.
Heimbach believes, however, that this compromise will drastically decrease the wait for the patients most in need.
UNOS members also feared inaction would invite intervention from the federal government. This would compromise the ability of UNOS to act on its own. Letters to congresspeople have been written requesting such federal involvement.
The new process UNOS voted on still favors the sickest regional patients first. It also increases the range of access to 170 miles beyond the boundaries of a region.
Any change to the transplantation system has a cost and a benefit. Unfortunately, these costs and benefits are measured in human lives. The problem remains that no matter the system, the number of people in need of an organ greatly outweighs the number of available organs nationwide.
This is why many medical experts are arguing that the focus of these solutions is in the wrong place. More attention should be given to the issue of donors than the system.
Regions need to do a better job of encouraging people to become donors. New York, for example, had the fewest number of organ donors in 2016, per capita, than any other state. Between 2004 and 2014 the national average for organ donors increased by 20 percent. In New York, the number decreased by 10 percent.
Others are concerned about the way wealth creates inequality in the system. Wealthy patients can survive the system better by enrolling in transplant in several regions simultaneously. They have the ability to relocate, travel, and stay near hospitals far from home.
Sharon Fawcett has considered the option of relocating to a more favorable region. She worries, however, about leaving those most crucial to supporting her. Any move would place far from friends, family, and doctors familiar with her case. She and her husband are considering a move to North Carolina. Rates are better than in New York, and their daughter is poised to graduate college in the state.