Sure, you can go ahead and relate 10-year-old Sarah Murnaghan’s battle with cystic fibrosis to the disaster that is Obamacare, but in reality, the rules have been in place for years, long before President Obama got into the White House or Obamacare was passed. Let’s use this time to look at the rules and determine if they should be changed instead of taking time to politicize this terrible situation.
Sarah’s family and doctors are claiming the current rules don’t make sense, but we’re only hearing from those close to Sarah at this point and they do understandably have a bias. Certainly, we should look if the system is fair, and if medical technology has improved to the point where the rules should be revised. Too many people – including Sarah Palin and many in Congress – think the secretary of HHS can just sign an order and all would be fixed. I don’t think that’s the case at all. A little bit on the process from Politico.
Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network [OPTN] working with the United Network for Organ Sharing under contract with HHS. It’s inherently charged and complex because there aren’t enough organs for everyone who needs them, and people do die waiting.
While Sebelius can certainly order a policy review, as she did in a May 31 letter to the procurement network, her authority to intervene in a specific case is unclear.
Rep. Tom Price (R-Ga.) told Sebelius that “[i]t simply takes your signature” to help this child.
Caplan said: “It isn’t clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.”
Setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretary’s discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN.
The policy that the Murnaghan and their advocates are questioning is one that puts children under 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids their age. But far fewer of those are available.
Is the system inherently charged and complex? Certainly! I can’t imagine having to make the decisions about where organs go and where they do not go. I assume each case is “graded” to determine who is next on a list, and those making the decisions don’t even know the names of the recipients. That’s a very good thing. For any government official to intervine at this point because of media attention would not be good.
There is a very sad but possible solution. Since Sarah is on the kids list, she must get a donation from another kid. As mentioned, the availability of organs for kids is the problem … there are not enough. That said, there is a provision allowing a directed donation that can not be challenged by OPTN or anyone in the government. Those authorized – the parents or guardians of a deceased child – can request the directed donation of their child’s lungs to Sarah. The media attention this story is getting may help Sarah and other children during the next few weeks.
What can the secretary and leadership in this country do? Sebelius has already ordered a review of the process a week ago, but everyone can step out and ask people to become organ donors. They could even ask the parents of a children to consider a direct donation to Sarah if tragedy strikes, but I really don’t think that would be appropriate since there are many other kids – not just Sarah – waiting for lung transplants today.
Say a prayer for Sarah this morning as we hear she’s having a more difficult time breathing and may need to go on a ventilator today. Her condition is getting worse as expected.