Parents to Sebelius: Tweak Transplant Law, Save Our Kid

Girl with cystic fibrosis needs adult lungs fast

By Matt Cantor,  Newser Staff

Posted Jun 3, 2013 10:56 AM CDT

(Newser) – Parents in Pennsylvania are calling for Kathleen Sebelius' help: Their 10-year-old daughter could have just weeks to live without a lung transplant, but current rules stand in her way. Suffering from cystic fibrosis, Sarah Murnaghan has been waiting for 18 months for a transplant. She's at the top of her region's list for pediatric lungs. But adult lungs are available much more frequently, and doctors say modified adult organs could help Murnaghan. Trouble is, she's not eligible to get adult lungs unless everyone on the adult list rejects them.

"We have sent a letter to Secretary Sebelius, stating for her why this is in the scope of her ability to change this law for all of the children rather than let her wait and die," Sarah's mother, Janet, tells CNN. The health secretary has told the family she can't intervene in an individual case but is calling for a review of the rules. A change to the law, however, could take two years."This isn't politics; this is a human issue ... We're gonna let a kid die over red tape?" the mother asks.

US Health and Human Services Secretary Kathleen Sebelius attends the 66th World Health Assembly at the European headquarters of the United Nations in Geneva, Switzerland, Monday, May 20, 2013.
US Health and Human Services Secretary Kathleen Sebelius attends the 66th World Health Assembly at the European headquarters of the United Nations in Geneva, Switzerland, Monday, May 20, 2013.   (AP Photo/Keystone, Jean-Christophe Bott)
A screen grab from CNN video of Sarah Murnaghan.
A screen grab from CNN video of Sarah Murnaghan.   (CNN Video)
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