Sarah Murnaghan, the 10-year old Pennsylvania girl with end-stage cystic fibrosis—whose need for a lung transplant has touched off a health-care policy debate in Congress over the fairness of transplant rules for children under age 12—may have found a lung donor. The family’s Facebook posts don’t make it clear where the donor lung came from. But it is that information that has been at the crux of the family’s campaign and legal battle to exempt her from transplant rules.
The U.S. District Court of eastern Pennsylvania, where the Murnaghan family filed suit, ruled in their favor last week, with federal judge Michael Baylson ordering "U.S. Health and Human Services Secretary Kathleen Sebelius to suspend a 12-and-over age requirement.” This means Sarah was to get a chance to receive a lung from an adult or adolescent sooner than she could otherwise have expected, since the 12-and-over age requirement states that child candidates can only apply for the few lungs that become available from child donors. Or, in special certain circumstances, if a child is put on the adult donor list, they must be listed at the end of the line, even if they are more gravely ill than others—because the medical community just doesn’t have enough data to know how a child would fare with an organ donation from an adult.
Children's lives hang in the balance, but the nation has a limited supply of organs.
So has Sarah’s case changed policy? Maybe, just a little bit. On Monday, the Organ Transplant Procurement Network had an emergency meeting of it's Executive Committee and approved a revision to its policy for lung transplant candidates 11 or younger. According to a policy notice from the non-profit, which administers the donor lists, lung transplant candidates may now "submit a request to [a review board] for lung candidates younger than 12 years old to have an additional listing, at the same hospital, ranking the candidate amongst adolescent lung candidates (12 to less than 18 years old) for offers from adult and adolescent donors based on the candidate’s Lung Allocation Score." LAS is the number by which the OPTN ranks teen and adult patients’ medical urgency, and the duration and quality of health they are likely to experience post-transplant, compared to historical outcomes for patients with similar conditions.
Children's lives hang in the balance, but the nation has a limited supply of organs. The data is murky, but according to one transplant expert I spoke to who has applied for pediatric patients like Sarah to receive adult lungs, outcomes for children who receive a lung transplant from an adult might be worse than in adult-to-adult transplants cases. Adult-to-child transplants can be complicated by size differences between an adult organ and a child’s organ cavity, among other factors. According to the same expert, it could be three to five years until the medical community has enough data to accurately rank kids next to adults based on the complex algorithms used to place people in an order that is considered most fair. Experts are divided as to whether a patient like Sarah would have a longer, healthier life than the adult recipients Judge Baylson has pushed behind her.