Short Takes On News & Events

GOP Lawmakers Press Sebelius To Help Child Awaiting Transplant

By Mary Agnes Carey

June 4th, 2013, 6:31 PM

A child in desperate need of a lung transplant clinging to life. Long waiting lists of patients who need organs and too few donors to meet the demand.  Rules that govern who gets what life-saving organs – and when.

Photo by Karl Eisenhower/KHN

Department of Health and Human Services Secretary Kathleen Sebelius had to confront all those issues on Tuesday when Republican lawmakers asked her repeatedly why she would not use her authority to make sure a 10-year-old Pennsylvania girl gets a lung transplant that could save her life.

Sarah Murnaghan, who is suffering from end-stage cystic fibrosis, needs a lung transplant or will die in two to three weeks.  Current organ donation rules make her ineligible for an adult lung and there are fewer children’s lungs that come available.  She has been on a waiting list since 2011, according to published reports.  The Organ Procurement and Transplantation Network, whose duties include collecting and managing scientific data about organ donation, says that nearly 1,700 people nationwide are waiting for lung transplants.

Rep. Tom Price, R-Ga., drilled Sebelius about the situation during a Capitol Hill hearing on the HHS budget Tuesday. Murnaghan cannot get the transplant she needs “because of an arbitrary rule that if you’re not 12 years old, you’re not eligible to receive an adult lung,” said Price, who is a physician.  “Madam Secretary, I would urge you this week to let that lung transplant move forward … It simply takes your signature.”

Sebelius said she has spoken with the girl’s mother and “can’t imagine anything more agonizing” than what the family is going through.   Sebelius said about 40 very seriously ill people in Pennsylvania over the age of 12 also are waiting for a lung transplant, as are three other extremely sick children in the same Philadelphia hospital as Murnaghan.

“I would suggest that the rules that are in place and are reviewed on a regular basis are there because the worst of all worlds, in my mind, would be to have some individual picks who lives and who dies,” she said. “I think you’d want a process guided by medical science and medical experts.”

That answer didn’t satisify Rep. Lou Barletta, R-Pa.

“Why do we have such bullcrap around this place and we have the chance to save someone’s life. … Why wouldn’t we do this?” he asked.

While Sebelius has ordered a review of transplant rules to analyze their fairness, “a study will take over a year [and] this young lady will be dead,” Price said at the House Education and the Workforce Committee hearing.

After the hearing, Sebelius told reporters that HHS lawyers “very much disagree that there is any ability for an individual to reach in” and change the current organ rules.

20 Responses to “GOP Lawmakers Press Sebelius To Help Child Awaiting Transplant”

  1. justin says:

    ‘Some individual who picks’? The article doesn’t address the issue of ‘picking’. The little girl’s plight, while sad, doesn’t seem to mean that a donated lung will be cast aside. It seems most likely that any donated lung would simply go to someone who is eligible according to the guidelines. Is that other person, who fits the rules crafted by doctors, somehow not deserve the same amount of consideration?

  2. randy says:

    There’s no question that Sarah needs our help and prayers but what about the 42,000 Pennsylvanians that lost their healthcare when Governor Corbett ended adultBasic for low income residents? Or, what about the estimated 700,000 Pennsylvanians that will not get coverage through the Medicaid Expansion because Governor Corbett refuses to participate in the program? Don’t these people need our help and prayers too? Yes, Sarah deserves all the help we can give to her but so do 50 million uninsured Americans all across America. Don’t they deserve our help just as much as Sarah? The Medicaid Expansion would do just that! Sadly, we are talking about angry and hateful Republicans and about how much they hate helping poor people. It is the main reason why Governor Corbett will probably not be re-elected in 2014.

  3. Kristen says:

    This article is about a life or death situation for a young girl, why would you think it’s an opportunity to spout off about Medicaid expansion and why Republicans are “hateful”. My guess is because you saw “GOP” in the title of the article and feel it’s best to go on a political rant rather than take the time to keep Sarah in your thoughts and hope for a positive end to this situation. Be respectful and keep things in perspective.

  4. ME says:

    ” Sebelius said about 40 very seriously ill people in Pennsylvania over the age of 12 also are waiting for a lung transplant, as are three other extremely sick children in the same Philadelphia hospital as Murnaghan.”

    This alone should be enough to turn down the media rhetoric on this situation. There are three children at this hospital alone and who knows how many children across the state….not to mention the number of adults also in line. We don’t even know via these reports where she stands on the list!

    I can easily empathize with the families situation. I couldn’t imagine losing my child to a debilitating disease like this. But to come out and say that “the government killed my child” as they did has only sensationallized the problem and puts in place an environment of desire to make exceptions for people where exceptions should never be considered. She may claim she doesn’t want an exception, but by making these statements, thats in effect what she’s hoping for.

    Making transplant list universal between adults and children is something worth researching and considering based on realistic goals and not a snap to judgement from a bunch of congressmen that clearly have no clue. Especially with the advances in child transplant options. Buit no person should be able to arbritrarily decide who gets the next lung based on what the current touchy feely story of the day is. Its unethical and sets a bad precident.

  5. Joe says:

    I pray that this girl will find a donor. We need more organ donations. Maybe if there was a small monetary gain for the donating family it would help bring more organs into play.

  6. killroy71 says:

    Can a healthy, compatible donor contribute a lung to this girl? Put your lungs where your mouth is, people — you wanna save a life, ante up a lung.

    Otherwise, stop sensationalizing this child’s death, which is no more- or less – tragic than the thousands of other children who die in our country every day. It just gets headlines.

  7. Jess Holmes says:

    How could they possibly think cutting ahead of this list to save one life would be better than saving any others ahead of this girl. I agree with killroy71 in the above comment: just because someone gets headlines it does not mean their situation is any more dire than the other children in the same hospital as Sara.

  8. Thought says:

    No one, especially congress, should be pleading for specific individuals. Give her the option to enroll in an experimental trial where a lung is grown using stem cells. If this type of technology is advanced then there would not be supply and demand issue or a waiting list.

  9. Thought says:

    No individual, especially congress, should be choosing who receives this limited supply of transplants. Everyone on the list deserves a transplant regardless of their age or situation. I would suggest that we give patients the ability to enroll in special clinical trials designed specifically for this type of situation where they get an organ grown specifically for them from stem cells or another technology. They all deserve this type of chance, especially if they are unlikely to receive an organ. If these types of technologies are advanced then there would not be a supply and demand issue or a waiting list.

  10. randy says:

    Yeah! right! We should all be respectful and keep things in perspective, huh? Meanwhile, untold numbers of uninsured Pennsylvanians needing an organ transplant have absolutely no hope whatsoever while Republicans are in control. Fact is, if Republicans have their way, the uninsured will never get on the organ transplant list. The uninsured are the forgotten in our society. Uninsured Americans might have a glimmer of hope had GOP governors any compassion for poor people and accepted the Medicaid Expansion. Fact is, THEY COULD NOT CARE LESS ABOUT POOR PEOPLE! How many of the 50 million uninsured Americans and the 25 million underinsured Americans need an organ transplant? Do they have any hope? Will they get on a list? Who has any respect for them? Who is keeping them in perspective? Who is fighting for them? Republicans? Don’t make me laugh! Republicans are a joke! When it comes to healthcare, Republicans are angry, spiteful, hateful, people with absolutely no healthcare reform plan of their own and absolutely no compassion for those less fortunate than themselves. The GOP is one ugly bunch of Americans!

  11. ME says:

    randy, your spiteful misplaced rants are a joke. QFT.

  12. brodavefla says:

    It sure has been disappointing to see how politicians have caved in to the well-publicized demands of one family. Rest assured, there are legitimate reasons a child would not be a good candidate for an adult organ. Size, for one thing, and this is a more weighty issue in lung transplants than in some other solid organs. Being the beneficiary of a “feel-good” story isn’t going to help this unfortunate young person be a better organ recipient. Since when is popular opinion more valid than evidence-based medical research?

  13. Thomas says:

    The girl’s family have since come forward and said they don’t expect their child to be put in the front of the line — they just want the rule about no adult lungs for young children to be changed, and Sebelius has said the rule will be reviewed. It’s only the politicians who are shamelessly turning this into a “save Sarah” campaign with no regard to the thousands of others who are waiting for organs.

  14. randy says:

    Move Sarah to the front of the line? Guess what you morons? There are rules about organ transplants. I guess Republicans don’t understand that, do they? Secretary Sebelius is following the exact rules that were mandated by Congress regarding organ transplants. She can’t circumvent the law. If she varies from the letter of the law, then members of Congress like Darrell Issa and others GOP members in the House will have another excuse to drag her into a Congressional hearing and try to crucify her just to score political points. Isn’t that what Republicans have been all about since the GOP managed to squeak control of the House by a very small margin. Trust me, the GOP’s control of the House will not stand in 2014. Not if they continue their hateful, spiteful, vindictive and negative behavior. Nevertheless, Republicans are on a political crusade. Fact is, they could not care less about Sarah. They are using Sarah to score political points. If you want to be respectful and keep things in perspective, as someone mentioned, Republicans should not use Sarah as a political football just to continue their assault on the Obama Administration.

  15. Tom says:

    What rant? I don’t see any rant. Anybody see a rant? What some might call a rant looks more to me like the raw truth. Republicans don’t like truth. They like spin. Feeling too much heat? Get out of the kitchen!

  16. lauren says:

    Congressional hearing after Congressional hearing, it’s obvious to Americans that House Republicans have a very bad case of sour grapes. They where it like a badge. They have no clue how ugly they appear in the media to average voters. However, they will in 2014.

  17. lauren says:

    Where? Spelling error…

    Should be, “They wear it like a badge”…

  18. Carrie says:

    Rules on organ transplants are based on evidence and include issues like blood type and other markers (reducing rejection), and certainly age of donor vs age of recipient due to the size issues. And of course donors are too rare….partly because not everyone is committed to organ donation nor have we all signed our donor cards. It is tragic for any family to face the impending mortality of a loved one. It is also tragic that in order for an organ to be donated, another family must lose a loved one. Dragging this emotionally charged issue into the political realm reminds me of the Terry Schiavo case. Just because it’s tragic doesn’t mean it should be a political issue. On the contrary, especially because it is so painful, we need clear, evidence-based rules that are carefully crafted, updated as new evidence comes to light, and enforced strictly. Otherwise the most photogenic victims, or those with the most media-savvy allies, will have people like Rep. Price agitating until they jump to the head of the line.

  19. lauren says:

    You need to understand that Congressional Republicans talk a big story about protecting our individual freedoms until it comes to scoring political points in “their” own home district. Republican members of Congress talk a big story about shrinking government until a tornado or other natural disaster hits “their” home district. Republicans don’t want government messing around in our private affairs until one of “their” constituents needs medical help like an organ transplant. Republicans don’t want the government involved in our private lives unless doing so can win elections. Your see, Republicans are hypocrites! There was once a time when Republicans were practical and rational. That time has long since past. They are nothing but a bunch of whining cry baby hypocrites bent on winning the next election!

  20. Paula says:

    Lauren,

    You forgot to mention all of the Neanderthal Republcan governors and the Cro-Magnon Republican legislators that are in favor of cutting taxes, shrinking government and protecting individual rights and freedoms and yet pass laws mandating vaginal probes.

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