Wanted to post something inspiring. Here is Sarah Murnaghan on her 11th birthday taking her first steps after receiving two lung transplants. Is there anything better to start your weekend than the smile of a child?
On Wednesday, June 5th, Judge Baylson of the federal court in Pennsylvania ordered Secretary Kathleen Sebelius to allow an exception to the rule that children under 12 cannot be placed on the adult recipient list for a lung transplant. Prayers of thanks and my utmost respect go out to Judge Baylson.
Unfortunately, the night she learned that she was placed on the adult list, Sarah Murnaghan’s condition worsened. I have researched many sites trying to understand the complicated Lung Allocation System (LAS) and have been unsuccessful. What I do know is her score was 36 and is now 78 (Fox News Channel) – that is, apparently, not good.
Today, her medical condition took another turn downward. Sarah has been intubated and may be placed on a heart/lung machine if a donor cannot be found soon (Fox News Channel). This machine would be a last grasp at hope for her family.
If Sebelius had not been so flippant with her “some people live and some people die” attitude, maybe Sarah would have received her lung transplant by now. Perhaps not. But, by refusing to waive the age requirement until she was ordered to, precious days ticked away. It wasn’t like she couldn’t sign the waiver when she was out soliciting funds from the Robert Wood Johnson Foundation for Obamacare. Signing a piece of paper only takes a moment.
If this is the type of treatment families can expect when their children are in urgent need of medical care before Obamacare is fully implemented, what is going to happen to our children once it is? All it would have taken was a signature to give Sarah a better chance. The same person will be holding the pen in 2014. If this does not give every parent, grandparent, aunt, uncle, or family friend chills up their spines, I do not know how better to bring the point home.
Well, let’s try this – Only the chosen will survive. The rest of us are fucked.
Please pray for Sarah and her family.
Worst case scenario – the life of your child is in the hands of Washington bureaucrats. A nightmare beyond comprehension.
It was reported on Fox Report with Shepard Smith that HHS Secretary Kathleen Sebelius has the ability to override the laws currently on the books if there is a potential danger to the patient or the public and get the wheels moving to get a pair of lungs for Sarah Murnaghan. She is reviewing the case. Really…reviewing the case. Hey, BITCH, a ten-year-old girl is dying and you are REVIEWING THE CASE? This beautiful little girl has about 2 weeks to live.
Sarah has Cystic Fibrosis. She is 10. If she were 12, this would not have made the local news, let alone Fox. At 12, Sarah could be placed on the adult recipient list. Sarah is medically at the top of both the pediatric and adult lists for transplant recipients. However, pediatric donors are rare. Medicine has advanced leaps and bounds since these laws were written and adult lungs can be made to fit pediatric patients. As usual, the law has not kept up with technology.
I can understand giving someone my age a hard time. I’m a big girl. I can handle it. But, how DARE they screw with a child who has everything to live for. Think of the things she will never do. I won’t list them here. I’m certain you can inventory your own life and come up with a million things you feel blessed to have experienced. Sarah will not have such a list, nor will her parents.
“Secretary Sebelius’ decision to not exercise her very clear authority under the law to intervene and mandate a variance that would help save Sarah’s life is devastating,” the family said in a prepared statement (abcnews.com). I can’t even imagine. At this point, even if she did intervene, the chance of finding a matching donor will most likely take longer than Sarah has to live. Had Secretary Sebelius acted when the parents first requested assistance, the ending of this story could have been quite different.
This may not help, but maybe it will. If you feel as strongly about Sarah and her family as I do, please write to Secretary Sebelius at:
The U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Toll Free: 1-877-696-6775
Or go to their website at http://www.hhs.gov/contactus.html
At the very least, please keep Sarah and her family in your heart. Dammit, she is just a little girl…
AN ADDENDUM TO THIS POST – A “MUST READ”
June 4, 2013 | 1:07 pm | Modified: June 4, 2013 at 3:10 pm
by Joel Gehrke – Commentary Writer
“Health and Human Services Secretary Kathleen Sebelius rebuffed an appeal from Rep. Lou Barletta on behalf of a girl who needs a lung transplant but can’t get one because of a federal regulation that prevents her from qualifying for a transplant.
“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.”
I would like to thank Mr. Gehrke for writing this article and keeping the public informed. I felt it was important for those who read my blog to see the latest developments… ~Katrina