Quotes of the day

A federal court judge has granted a temporary order that will allow 10-year-old Sarah Murnaghan, who is dying from cystic fibrosis and desperately needs new lungs, to join an adult organ transplant list

In a statement issued late Wednesday afternoon, the family said, “We are experiencing many emotions: relief, happiness, gratitude and, for the first time in months: hope.”…

The Delaware County family retained a lawyer this week and quickly filed their lawsuit, arguing the rule keeping Sarah off the list is “discriminatory.”


But the ruling immediately raises concerns about fairness — and the risk of more lawsuits, said Art Caplan, director of the division of medical ethics at NYU Langone Medical Center. While it’s admirable that Baylson chose to try to help Sarah and others, the decision threatens the integrity of the nation’s existing organ allocation process, he said.

“It is not clear why everyone now waiting at the bottom of any transplant list would not seek relief in federal court,” Caplan said. “Unless the judge has reason to think the lung distribution rules are simply a product of age discrimination and nothing more — which seems highly unlikely — then this becomes a troubling instance of non-doctors deciding who is the best candidate to receive a lung or other scarce medical resource.”…

Nationally, about 1,700 people are waiting for lung transplants, including 31 children 10 and younger, according to OPTN data. In Region 2, Sarah’s region, 222 people are waiting for lung transplants, including six children 10 and younger.


“Finally, we have some positive news for Sarah and her family,” said Sen. Toomey. “I applaud today’s ruling and am grateful to Judge Baylson for quickly issuing his decision on such an important matter.

“Now Sarah has a chance for a lung transplant, and I plan to keep fighting for her and others who deserve to be eligible. As I’ve said all along, Secretary Sebelius should use her authorities to make medical need and suitability, rather than age, be the primary criteria in determining how organ donations are prioritized. I hope this court ruling will encourage her to make this important policy change.”


Sixty adults with LAS scores above 50 died in 2012, while 513 received transplants. More than 400 adults with scores below 35 also received transplants, while 18 in that category died waiting.

According to Ruddock, Sarah’s doctors say she would have an LAS score of 66 if she were an adult…

Sweet said a transplant would improve Sarah’s cystic fibrosis symptoms, but lung transplants are risky. Even with the procedure, he said, her life expectancy would average three to five years. “This just buys her some time,” he said.


Centralized rationing (and even regionalized rationing, as is usually done with organ transplantation) in our huge country will inevitably be basically utilitarian. In the case of an organ waiting list, there is no avoiding this zero-sum problem, and moving the decision from a relatively objective system of allocation to the discretion of a cabinet secretary is a very bad idea. On what grounds is Sebelius supposed to do this? Because this poor girl’s parents figured out how to get the attention of reporters and politicians? Are people with less-savvy relatives supposed to be punished, and perhaps left to die, as a result?…

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.


We do not want to show up at the DMV and have the order in the queue determined by who can tell the manager the best sob story. The basic rule — first come, first served — does not take into consideration all the many different circumstances which might argue for why a later-arriving mom with six kids should actually cut in line, so she can make a soccer game; but the basic rule, in its bright-line simplicity, is acceptable as fair. Not always optimal — but fair.

Emotion-based appeals and emotion-based relationships are perfectly normal — and perfectly desirable — in affectionate relationships, familial relationships, friendships. But they are simply corruption and cronyism in the context of dealings with the state. Dealings with the state cannot, or at least must not, devolve into simply currying favor with bureaucratic decision-makers…

Make no mistake: We are headed for this dark and dire place where everything you wish to do is subject to a vote of the Committee of the Whole, and everything you do will therefore require appealing to the Committee of the Whole, and outright bribing them for their indulgence by offering property or services to secure their goodwill.

And it’s all by design. This is how they think the world should work.



Via Mediaite.