Transplantation and the Ten-Year-Old

Arthur Caplan

Can the United States ration health care? This question looms large as the nation moves to expand access to health insurance. Some say rationing will never happen in the United States because we cannot even say the word without charges of death panels filling the air. But America has been rationing care according to patients’ ability to pay for many decades.

One area in which money alone does not rule the day in America is transplantation. Since 1984, the nation’s system for deciding who gets scarce organs for transplant has relied both on the ability to pay and a rule-based, physician-determined rationing system. It is about as close as the country has ever come to making tough decisions about who gets life-saving therapy. A young girl recently put that system to its most severe test ever.

This past May, ten-year-old Sarah Murnaghan began suffering acute lung failure. Sarah, who grew up in Newtown Square, Pennsylvania, was born with cystic fibrosis. When her lungs began to fail, she was moved to Children’s Hospital of Philadelphia (CHOP), where she was placed on a ventilator. She had been on a waiting list for a lung transplant for eighteen months, but no suitable organ had become available.

Shortly after her admission to the hospital, Sarah’s parents told members of the media that they had learned that their daughter was not eligible to receive adult lungs from cadaver donors. The system of rules for rationing scarce organs run by the United Network for Organ Sharing (UNOS) had implemented a rule in 2008 that gave children under twelve priority for lungs donated by the families of deceased children but reserved lungs from adults for people age twelve or older. Those over the age of twelve were given an allocation score by UNOS based on how urgently they needed a transplant and the severity of their medical condition. For children under twelve, lungs from children who died were to be allocated based on length of time spent on the waiting list.

Child lung donors are very rare. In 2012, just ten transplants were attempted for those in Sarah’s age group. More than 1,700 were done in adults. As of July 22, 2013, 1,692 persons were awaiting lung transplants—twenty-two under the age of twelve and forty-two ages twelve to eighteen.

Sarah’s parents were not willing to accept their child’s exclusion from access to adult cadaver lungs. They launched a publicity campaign that drew wide media attention worldwide. This in turn elicited attention from members of Congress, including Senator Patrick Toomey (R–PA); Rep. Tom Price (R–GA); and Rep. Charles W. Boustany (R–LA). Congressman Lou Barleta (R–PA) asked Secretary of Health and Human Services Kathleen Sebelius to void the ban on adult lungs for children under twelve. He noted that “with the stroke of a pen [you] could have granted Sarah a waiver” that would have given her a chance to live.

What Rep. Barletta failed to note was that if Sarah received an adult lung, someone else might not. When Secretary Sebelius, deferring to medical expertise about the optimal use of scarce donor lungs, refused to overrule the UNOS policy, the family sought the assistance of a prominent Philadelphia law firm. With Sarah intubated and dying, an emergency hearing was held before a federal judge in Philadelphia. On June 7, 2013, the judge ordered Sebelius to allow Sarah to be transferred to the adult lung-transplant list. The appeal led to an emergency meeting of a key UNOS committee charged with rationing lungs. They granted a route for children like Sarah to appeal their exclusion from the adult list and added her. On June 14, 2013, Sarah received transplant lungs from an adult donor. They did not work. She received another set three days later.

Never in the history of UNOS has a federal judge intervened to void the rationing rules. The basis for the rule excluding children under twelve from adult lungs was that nearly all donor lungs come from adults and there is some evidence that children fared better when they received complete juvenile lungs rather than partial lobes of adult lungs—required because adult lungs do not generally fit into children’s bodies. The judge deemed that rule to be arbitrary and ordered access for Sarah.

The evidence-based UNOS system has done a good job of distributing scarce organs without favoritism for decades. Sarah Murnaghan’s parents, in deciding to fight for their daughter’s chance for life, threaten to topple one of the few allocation schemes that is not based solely on money or celebrity and that has secured public and governmental support.

With an aging population suffering the consequences of lifestyle-based chronic illnesses, the need for transplants will only grow. The same is true for other expensive medical interventions. If transplant allocation is to continue to function well—and also to serve as a model for how other scarce resources might be responsibly rationed—it is important to understand that publicity and empathy focused on a single person ought not drive the apportioning of scarce resources. If they do, then attackers of the current rationing system who have an interest in promoting the welfare of particular patients—and who have no alternative to offer except to grant access to the highest bidder or the most photogenic patient—will increasingly have a hand in determining who lives and who dies in the health-care system for many years to come.

Arthur Caplan

Arthur Caplan is director of the University of Pennsylvania’s Center for Bioethics and a nationally prominent voice in the debates over cloning and other bioethical concerns.