Thursday, May 30th, 2013
Sarah Murnaghan is ten years old, with end-stage cystic fibrosis. She’s been at Children’s Hospital of Philadelphia for three months, and has been on the lung transplant list for 18 months. She does not have much more time left to live, a few weeks at most. Sarah is eligible to receive adult donor lungs—but because she’s not yet 12, the law says she can get them only after adults (including those not as sick as she is) have the opportunity.
Back in 2000, the Department of Health and Human Services (HHS) changed organ donations laws so that availability was based on medical necessity, not the order of the waiting list. The resulting process run by the Organ Procurement and Transplantation Network (OPTN), however, applies only to patients 12 and older. “Sarah is therefore ineligible under this system, despite the fact that she is a top priority on the waiting list,” wrote Pennsylvania Senator Pat Toomey in a letter to HHS Secretary Kathleen Sebelius this week. He asked her to do everything she could to help Sarah get new lungs.
“We’re not asking for preference for Sarah, we’re asking for equality,” said Sarah’s mother, Janet, in a press release. “We strongly believe Sarah should be triaged based on the severity of her illness, not her age.”
It would be downright criminal if this child wasn’t granted permission to be eligible for an adult set of lungs.
There’s a petition up on Change.org asking that an exceptional ruling be made for Sarah to get lungs. You can sign it here. Please do.
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Tags: cystic fibrosis, organ donor laws, Sarah Murnaghan | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max