Sebelius Prompts OPTN Revision of Transplant Policy for Pediatric Patients in Response to Judicial Intervention and Media Blitz

The Organ Procurement and Transplantation Network (OPTN) issued changes to its transplant policy for lung candidates under the age of 12 on June 11, 2013, after a meeting of the Executive Committee. The Secretary of the Department of Health and Human Services (HHS), Kathleen Sebelius, prompted the meeting in response to the controversy surrounding the case of Sarah Murnaghan. Sarah Murnaghan suffered from end-stage cystic fibrosis at 10 years old and was on the waiting list for pediatric donor lungs. On June 12 Sarah received a transplant, with adult donor lungs, in contravention of the former OPTN policy for children, but in accordance with the temporary restraining order (TRO), issued by Federal Judge Michael Baylson from the Eastern District of Pennsylvania, that stopped Sebelius from enforcing the policy.

Sarah’s mother, understandably, launched a media blitz after her daughter was denied an exception to the policy. However the public-relations onslaught and subsequent judicial intervention troubles some bioethicists. Members of the Executive Committee voiced serious medical and ethical concerns at the meeting. To resolve the matter, the Committee incorporated a review process into the policy for children. The process allows for an exception application for anyone under 12 years old, to request that the person be classified as an adolescent in order to receive either adult or adolescent lungs. Dr. Arthur Caplan, a renowned bioethicist, stated that in implementing the review system the OPTN is addressing the concerns raised by Justice Baylor, while simultaneously issuing a warning. Dr. Caplan believes it is inappropriate for bureaucrats and politicians to decide how organs are allocated based on the medical complexity of a case.

Related stories can be found by clicking on the links below:

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