The family of Sarah Murnaghan, a 10-year-old Pennsylvania girl in severe need of a lung transplant, is upset with Health and Human Services (HHS) Secretary Kathleen Sebelius for not doing more to help with her condition.
“Sarah is being left to die,” said the girl’s father, Fran Murnaghan told ABC News. “Not only Sarah, but there are many other children in the same situation.”
Under the guidelines set by the Organ Procurement and Transplantation Network (OPTN), a federal agency under HHS purview, Sarah, who suffers from cystic fibrosis, is not eligible for priority placement on the national adult transplant waiting list until she is 12 years old. But doctors have told the Murnaghans that she is not likely to live that long.
“Last week, things got critically worse,” her mother, Janet told ABC on Sunday. “They felt like she was on the verge of needing to be intubated, which is, for CF, when you’re waiting for lungs, the last step.”
ABC reported that, while 1,500 adult lungs were donated for transplant purposes in 2012, only 20 childrens’ lungs were donated. OPTN officials said in a statement on Monday that it cannot give Sarah’s case priority.
“OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others,” the statement read.
CNN reported on Monday that the United Network for Organ Sharing, the agency that handles the federal transplant list, agreed to a request from Sebelius on Friday to review its policies. Sebelius also ordered HHS to examine new approaches to promote organ donation for children and adolesecents.
But Fran Murnaghan told ABC that while Sebelius had the power to step in, “she has decided to do, to be honest, not much of anything. In my opinion, she has kicked the can down the political road.”
Watch ABC’s report on Sarah’s struggle to get a lung transplant, aired Sunday, below.