Ten-year-old Philadelphia resident Sarah Murnaghan only has a couple weeks to live unless she receives a lung transplant soon. Sarah, who has end-stage cystic fibrosis, has waited for over a year to receive a lung from a child donor, even though she is at the top of the pediatric organ list. Because there are no child donors available, Sarah is also on the list to receive an adult organ — but at the very bottom, due to a rule that requires that all adults waiting for a lung in her region get priority before children under 12, regardless of the severity of their condition. If Sarah were just two years older, she would likely be at the top of the adult list.
Kathleen Sebelius, Secretary of the Department of Health and Human Services, has ordered a review of the policy, but stopped short of personally intervening in the process. The Murnaghan family is now appealing to the public, begging for anyone with a viable lung donation to designate it for Sarah. They’ve also circulated a petition with over 339,000 signatures asking the Organ Procurement and Transplantation Network (OPTN) Lung Review Board to make an exceptional ruling to give Sarah the lung that could save her life.
As the petition explains, children under 12 were excluded from a policy change in 2005 that allowed people with urgent medical need to skip the long line for transplants. As a result of the more need-based organ allocation system, the number of patients who died while waiting for a transplant plummeted by half. The average waiting time for all adult patients also immediately decreased from 800 days in 2004 to 130 days in 2006.
In general, the tough decision process of who should receive the very limited number of donor organs has become more flexible in a number of ways. Besides the prioritization of emergency cases, the types of allowed organ donors have also been expanded. Transplants have historically relied on donors who have been declared brain-dead even though their heart is still beating. But now, more organ donations are permitted from people whose circulatory system has shut down. This has especially helped children waiting for transplants. As these organs become more available, far fewer children have died while waiting for a transplant, making Sarah’s case thankfully rare.
While Sebelius may not have the authority to intervene in Sarah’s case, the Murnaghans’ plight is helping to raise questions about a formerly obscure policy, which they themselves did not even learn about until last week. “All we want is fair treatment for all of these children, including Sarah,” they said in a statement.