Casey to HHS: Is Current Policy Negatively Impacting Child Transplant Recipients?

Senator Raises Questions Regarding Pediatric Transplants

Three Pennsylvania Children Ages 6-10 years old, including Sarah Murnaghan, Await Lung Transplants

Washington DC- Today, U.S. Senator Bob Casey (D-PA) released a letter to Health and Human Services (HHS) Secretary Kathleen Sebelius asking critical questions that could aid children seeking lung transplants, and in particular could aid a Philadelphia constituent awaiting a transplant. In his letter, Senator Casey raises concerns regarding the allocation of adult lungs between adult and pediatric candidates for transplantation, resulting in higher mortality rates for children.  Given these disparities, the Senator specifically asks the Secretary what is preventing a suspension of the policy while these concerns are being appropriately reviewed, studied and resolved. 

“Given the urgency of the situation, it’s critical that Secretary Sebelius give immediate attention to these crucial questions,” Senator Casey said. “HHS should explain why they can’t suspend current policy until we are confident that children have equal access to life-saving treatment and that Sarah, and others like her, are given the best chance of survival.”

The full text of Senator Casey’s letter can be seen below:  

The Honorable Kathleen Sebelius


U.S. Department of Health and Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

I appreciate your continued consideration of organ allocation policy as it relates to children under 12 awaiting lung transplants.

Following our discussion last week, I request your immediate attention to several crucial questions regarding the effect of the current policy for allocating donor organs, specifically lungs, to transplant recipients.  The parents of my constituent, Sarah Murnaghan, have made the case that children under the age of 12 are unfairly treated by the present system for deciding how donor lungs are allocated to patients in need of a transplant.

According to data that have been presented to us, since 2005 the rate of adults receiving donor lungs is much higher than the rate of children receiving donor lungs, because the current system gives preference to transplanting adult donor lungs among adults and child donor lungs among children, even when children can be medically able to receive adult donor lungs.  As a result, the death rate (i.e., the percentage of people on waiting lists who die while waiting for a lung transplant) is much higher for children—46 percent versus 26 percent for adults over the years 2009 to 2011.

Therefore, I ask the following questions:

  1. There appears to be a disparity regarding the allocation of adult lungs between adult and pediatric candidates for transplantation, resulting in higher mortality rates for children.  Can you assure me that the current policy regarding lung allocation is not contributing to this disparity?
  2. In addition, what reason does the Department of Health and Human Services (HHS) or the Organ Procurement and Transplantation Network have for keeping children under 12 from being considered for any organ that would be an appropriate match?
  3. Given that you have agreed to review the policy as it applies to recipients under age 12 (a relatively small group), what is preventing HHS from suspending the current system while these policies are appropriately reviewed, studied and resolved?

I understand that these are highly charged issues, literally matters of life and death.  As an elected official, I cannot substitute my judgment for that of medical experts who perform and support life-saving organ transplants every day.  However, I believe it is necessary that the questions I have asked be answered in a full and fair manner, especially because they affect decisions regarding the allocation of lung transplants to children.

Thank you for your attention to this most important matter.  I request that you provide my office an update on this matter no later than Wednesday, June 5, 2013.  If you or your staff have any further questions about this matter, please contact my office.


Robert P. Casey, Jr.

United States Senator