For the past 60 years, doctors have been able to take an organ from one person and transplant it into another. The practice got off to a bumpy start, sometimes extending lives for only days, rather than the years we now expect. But it was soon prey to its own success: By the 1980s, there clearly weren’t enough organs to go around. Hospitals needed ways to decide who would live and who would die, and early criteria included a tally of who had been in the hospital the longest and notions of “social worth”—income, education, community standing.
The case of Sarah Murnaghan shows how far we’ve come since then. The 10-year-old has cystic fibrosis, and she wasn’t likely to survive without a new set of lungs. Transplant ethics now aim to maximize utility—assessors try to calculate the “transplant benefit measure,” or additional days of life a recipient could have—rather than to practice social Darwinism. But only for adults. While Murnaghan had her whole life ahead of her, the rules also aim to reduce the risk of wasted organs, so she wasn’t eligible to receive an adult lung that might not take. When her family, state politicians, and a judge intervened on her behalf, they became part of the long struggle to find a scientific sweet spot between urgency and outcomes—and highlighted how far we’ve come since the former ruled the day.
The transformation began slowly, as medical developments pushed providers to make decisions based on science rather than social status. For now, there’s no legislation on the books about how to calculate the number of years someone is expected to live beyond a transplant. The National Organ Transplant Act of 1984 made it illegal to buy and sell organs (a fear born of the widening supply-and-demand gap) and set up the Organ Procurement and Transplantation Network, run by transplant surgeons and others who decide the allocation policies for each body part. This group, which manages some 120,000 patients on U.S. organ-transplant waiting lists, is overseen by the Health and Human Services Department.
The OPTN says, for example, that potential lung recipients are scored according to 13 criteria, including pulmonary artery pressure, body-mass index, and the distance a person can walk in six minutes. Children have a separate list, because the OPTN says it lacks sufficient data on these transplants, such as procedures to pare adult lungs for children’s chests. Kids’ place in the queue is governed more by the old-fashioned rules: How urgent is their need? So when Murnaghan’s parents begged to have their daughter moved from the under-12 list to the adult list, which has access to a much larger pool of lungs, their appeal went all the way to HHS Secretary Kathleen Sebelius.
Last month, Sebelius declined to intervene. “The worst of all worlds, in my mind, is to have some individual pick and choose who lives and who dies,” she said at a House hearing. “You want a process where it’s guided by medical science and medical experts.” The Murnaghans sued. Sen. Pat Toomey and Rep. Pat Meehan, both Pennsylvania Republicans, publicly urged Sebelius to exempt Murnaghan from the OPTN policy. In June, the federal District Court in eastern Pennsylvania ruled that Sebelius could not keep Murnaghan and another 11-year-old with cystic fibrosis, Javier Acosta, off the adult waiting list.
But could the young bodies assimilate the grown-up organs? Arthur Caplan, director of the division of medical ethics at New York University’s Langone Medical Center, estimates that in the 10 years since the lung-paring procedure was developed, maybe 20 adult-to-child transplants have been done. The OPTN cites the absence of data as the reason for its separate-list policy, but the court allowed Murnaghan onto the adult list, saying it wasn’t clear a transplant wouldn’t work. “This was an area that was more open, if you will, to debate or political arm-twisting, because it’s not as well-established a procedure,” Caplan says. “But, in general, the notion that we would distribute organs according to who could mount a PR campaign, get the attention of a congressman and a judge, is not the way to distribute organs.”
This isn’t the first time political forces have advocated on behalf of patients. In 1983, an 11-month-old Texas girl, Ashley Bailey, was dying of biliary atresia, a disease that causes liver failure. President Reagan used his weekly radio address to aid the search, offering an Air Force jet to transport the liver if necessary. (More broadly, he urged Americans to become organ donors.) Bailey died, because organs are rarely available for babies. But Reagan’s intentions notwithstanding, ethicists say it’s best for politicians not to interfere: It gives some recipients an unfair advantage—one not earned on the outcome-focused standard. The science-based approach is supposed to give everyone a fair shot.
Of course, as cases like Sarah Murnaghan’s illustrate, it’s not always clear what constitutes a “fair shot.” She received her transplant one week after the court ruling. But her political advocates didn’t know the medical risks, and they effectively pushed organ allocation, in her case, back to a time before proven science dominated the calculus. It also revealed just how far the science has progressed—that we, as patients and consumers, now expect quality outcomes. Murnaghan’s initial lung transplant failed right away. She received a second transplant later in the month and now appears to be making small steps toward recovery. “This is an incredibly agonizing situation, where someone lives and someone dies,” Sebelius told lawmakers last month. The terrible reality of organ transplantation today is that there just aren’t enough organs.