In the past few days, some members of Congress (mostly Republicans) have been pressing HHS secretary Kathleen Sebelius to intervene on behalf of a little girl named Sarah Murnaghan, who is suffering from cystic fibrosis and awaiting a lung transplant at a Pennsylvania hospital. Because she is under 12 years old (she is 10), she is on the children’s waiting list, and so is not eligible for adult donor lungs — which become available much more frequently than those of children. At a hearing yesterday and in various venues today, Sebelius has been pressed to use her (vaguely defined) discretion to bend the rules of the Organ Procurement and Transplantation Network and get Murnaghan on the adult list, where she would have a better chance of getting a lung before it’s too late. Representative Lou Barletta of Pennsylvania yesterday pushed Sebelius directly, telling her, “I’m begging you, Sarah has three to five weeks to live. Time is running out.”
It’s a terribly tragic case, and it’s impossible to contemplate the Murnaghan family’s situation without wanting to move heaven and earth to help. But what Sebelius is being asked to do would be a gross abuse of her authority, and she is right to resist it. The attempt by some to paint her as the villain here, and to tie her unwillingness to bend the rules to the logic of Obamacare or otherwise use this situation to score political points, is ugly and absurd.
No one can blame Murnaghan’s parents for doing absolutely everything they possibly can to help her. Surely any of us would do the same. But should that mean that those of us better positioned to make our case should push those who aren’t to the back?
Children are on a separate list for lung transplants because transplants of adult lungs to children don’t have a great track record. If there is new evidence that should cause a rethinking of that separation (as has happened with kidney and liver transplants) then the Organ Procurement and Transplantation Network, which basically functions as a federal contractor, should review its procedures. Sebelius in fact asked them for such a review, because of this case, late last month. If they end up doing it, it would have to happen in an orderly and careful way and would take some time — the children’s waiting list is not prioritized by medical need but more or less on a first-come-first-serve basis, and if children were integrated into the adult system there would have to be some criteria for comparing them to people already in that system.
Kathleen Sebelius has done a whole lot of things worth complaining about in her term at HHS, but in this instance I think she is right, and members of Congress should think very carefully about how they are using the power they have been entrusted with in pushing her to intervene.