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Toomey, Meehan: Secretary Sebelius, Use Existing Rules To Help 10-Year-Old Girl Get New Lung

Monday, Jun 3

WASHINGTON, D.C. - U.S. Senator Pat Toomey (R-Pa.) and Representative Pat Meehan (R-Pa.) told the Department of Health and Human Services Secretary Kathleen Sebelius that, in keeping with the spirit of policy regarding organ transplants for those with the greatest medical need, she should use existing rules to help a 10-year-old Newtown Square, Pa. girl, who only has weeks to live.

Sarah Murnaghan has Cystic Fibrosis and is fighting for her life at the Children's Hospital of Philadelphia as she awaits a life-saving lung transplant. Doctors believe she has only a few weeks to live.

The Department of Health and Human Services mandated that organ allocation policies must be based on medical need rather than waiting time or other considerations.

While Sarah's need is acute, because she is only 10 and not 12, she can't be on the list to receive an adult organ. Pediatric organ donors are in short supply and there is little chance that Sarah will receive a pediatric lung in time.

Toomey and Meehan are not asking for an exemption for Sarah, but rather asking the Secretary to follow rules available to her now. The lawmakers wrote that the Secretary has two options specified in the existing policy governing the organ transplant network. She can set aside the under-12 policy on an emergency basis. Or she can direct the organ donor network to conduct a pilot program to add to the research about the suitability of adult organs transplanted into children.

The text of the letter is below.

June 3, 2013

Secretary Kathleen Sebelius
U.S. Department of Health and Human Services
Hubert Humphrey Building
200 Independence Ave SW
Washington DC 20201

Dear Secretary Sebelius,

We appreciate your continued engagement regarding the circumstances surrounding 10-year-old Sarah Murnaghan. Attorneys for Sarah have sent you a detailed legal opinion outlining our point which is that you have the ability and the authority to intervene to allow for Sarah and other children under the age of 12 to become eligible for adult organs.

This is permissible for two reasons. First, you have the ability to set aside the under-12 policy on an emergency basis according to Section 121.4(d) of the organ donation regulations:

"Policies or practices that are subject of critical comments remain in effect during the Secretary's review, unless the Secretary directs otherwise based on possible risk to the health of patients or public safety."

Second, we believe the regulations allow for you to direct OPTN (Organ Procurement and Transplantation Network) to conduct an experimental variance under Section 121.8(g). In Dr. John Roberts's response to your request for additional information regarding organ donation policy, he indicated that medical literature suggests that such pediatric lung transplants have comparable outcomes but small sample sizes. An experimental variance in Sarah's case could help better inform the medical community's understanding of how these transplants work in pediatric settings.

We do not have much time to wait. We respectfully request a meeting as soon as possible to discuss your response to this urgent matter. Thank you for your consideration.

Contact Senator Toomey

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