HHS Secretary refuses to save dying girl; “someone lives and someone dies”
“Someone lives and someone dies,” shrugged Health and Human Services Secretary Kathleen Sebelius, when passing bureaucratic judgment upon the life of a 10-year-old Pennsylvania girl who will die in a matter of weeks unless she gets a lung transplant. And a lot of someones owe Sarah Palin a huge apology for doubting her prescient warning about “death panels.”
Senator Pat Toomey (R-PA), who along with Rep. Pat Meehan (R-PA) is asking Sebelius to exercise her discretion in the case, reviews the situation at his website:
Sarah Murnaghan has Cystic Fibrosis and is fighting for her life at the Children’s Hospital of Philadelphia as she awaits a life-saving lung transplant. Doctors believe she has only a few weeks to live.
The Department of Health and Human Services mandated that organ allocation policies must be based on medical need rather than waiting time or other considerations.
While Sarah’s need is acute, because she is only 10 and not 12, she can’t be on the list to receive an adult organ. Pediatric organ donors are in short supply and there is little chance that Sarah will receive a pediatric lung in time.
Toomey and Meehan are not asking for an exemption for Sarah, but rather asking the Secretary to follow rules available to her now. The lawmakers wrote that the Secretary has two options specified in the existing policy governing the organ transplant network. She can set aside the under-12 policy on an emergency basis. Or she can direct the organ donor network to conduct a pilot program to add to the research about the suitability of adult organs transplanted into children.
Toomey and Meehan elaborated further on the options available to Sebelius in a letter they sent her on Monday:
Attorneys for Sarah have sent you a detailed legal opinion outlining our point which is that you have the ability and the authority to intervene to allow for Sarah and other children under the age of 12 to become eligible for adult organs.
This is permissible for two reasons. First, you have the ability to set aside the under-12 policy on an emergency basis according to Section 121.4(d) of the organ donation regulations:
“Policies or practices that are subject of critical comments remain in effect during the Secretary’s review, unless the Secretary directs otherwise based on possible risk to the health of patients or public safety.”
Second, we believe the regulations allow for you to direct OPTN (Organ Procurement and Transplantation Network) to conduct an experimental variance under Section 121.8(g). In Dr. John Roberts’s response to your request for additional information regarding organ donation policy, he indicated that medical literature suggests that such pediatric lung transplants have comparable outcomes but small sample sizes. An experimental variance in Sarah’s case could help better inform the medical community’s understanding of how these transplants work in pediatric settings.
Another Pennsylvania Republican, Rep. Lou Barletta, made the same appeal to Sebelius, as recounted by the Washington Examiner:
“Please, suspend the rules until we look at this policy,” Barletta, a Pennsylvania Republican, asked Sebelius during a House hearing Tuesday on behalf of Sarah Murnaghan, a 10-year-old girl who needs a lung transplant. She can’t qualify for an adult lung transplant until the age of 12, according to federal regulations, but Sebelius has the authority to waive that rule on her behalf. The pediatric lungs for which she currently qualifies aren’t available.
“I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies,” Sebelius replied. “The medical evidence and the transplant doctors who are making the rule — and have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different that other organs — that it’s based on the survivability [chances].”
Barletta countered that medical professionals think Murneghan could survive an adult lung transplant. During the exchange, he also said that the girl has three to five weeks to live.
Sebelius reminded Barletta that 40 people in Pennsylvania are on the “highest acuity list” for lung transplants.
Writing at Fox News, Dr. Manny Alvarez calls the restriction against using adult organs until the age of 12 “archaic,” noting that Sarah Murnaghan’s surgeons believe it will work, and says “it should not have taken a case like this for Secretary Sebelius – whose tenure has lasted for the past four years – to ask for a revision today.”
Secretary Sebelius has only ordered a revision of the policy, which could take a lengthy amount of time – something Sarah does not have. To me, this shows lack of leadership and, certainly, lack of compassion. Doctors and nurses make instant decisions when it comes to helping others in need, and I believe that someone who is in charge of the largest health care agency on the planet should have a more proactive approach when dealing with these kinds of emergency situations.
Fox News also points to a Facebook page created to seek a lung donation for Sarah.
According to the Philadelphia Inquirer, Sarah’s family has asked a federal judge to intervene and prevent Sebelius from enforcing the “so-called Under 12 rule.”
The U.S. media doesn’t seem eager to relay what Sarah’s parents have been saying about Sebelius’ decision, despite their normally passionate interest in aggrieved families, but the UK Daily Mail headlined its story on the case by quoting the little girl’s mother crying, “She’s about to be killed by red tape.”
‘She [Sebelius] said “Oh I’m so sorry I know this isn’t what you wanted to hear,’” Sarah’s distraught mom Janet told Fox45 after hearing of Sebelius’ verdict.
‘It is in her legal authority. We’re going to let a kid die over red tape. Somebody needs to stand up and say this isn’t right. This is a human issue this isn’t politics.’
“One moment they say we’re asking for an exception for Sarah. The next moment they say we’re asking for sweeping changes and it has to be studied,” added Sarah’s aunt.
More bureaucratic control over health care sounds like a great idea, especially once we get the IRS involved, ObamaCare leads to doctor shortages, subsidies blow the deficit into orbit, and it’s time to get down to the hard-core rationing. Doubtless it will all be administered with the same professionalism, transparency, and impartiality as the IRS Tax Exempt Division, especially since a veteran of that fabled division has been placed in charge of ObamaCare enforcement. And you can bet all these little rules will be enforced with unwavering determination against the politically connected and their children.
Update: CNN reports that the judge has granted the order requested by Sarah’s family, preventing the enforcement of the “Under 12 Rule.”