June 19, 2013

Sarah Murnaghan is a very special ten year old girl.  She has battled Cystic Fibrosis since she was 18 months old and has spent her life in and out of hospitals.  In December 2011, her condition took a turn for the worse and she was placed on the pediatric lung transplant list, which is the list for those who are eligible to receive donated lungs from a child donor.  Her condition continued to deteriorate culminating in her doctors’ approval in November 2012 for her to receive an adult lung.  The pool of adult donors is 50 times larger than the pool of lungs donated by children.  Sarah has spent the last 107 days at Children’s Hospital of Philadelphia, the last two weeks of which have been in intensive care.  In May 2013, she was given weeks to live.

The National Organ Transplant Act of 1984 (“NOTA”), 42 U.S.C. § 274(b)(2), requires donated organs to be allocated equitably by the Organ Procurement and Transplantation Network (“OPTN”).  However, the United States Department of Health & Human Services under current Secretary, Kathleen Sebelius, has in place a policy called the “Under 12 Rule” that requires children under age 12 on the adult list to go to the back of the line despite medical urgency and only become eligible when everyone on the list ahead of them has declined the transplant.  Sarah became an unwitting victim of the Under 12 Rule.  Despite urgent and emergent requests through proper channels the Secretary would not terminate application of the Rule as to Sarah, even though doing so could save Sarah’s life.

With the dire prognosis, Sarah’s parents challenged the Secretary’s determination and obtained an emergency order from the United States District Court for the Eastern District of Pennsylvania that immediately ceases application of the Under 12 Rule as to Sarah. The Court found that the Under 12 Rule was an abuse of discretion, noting the strong evidence the Rule discriminates against children and serves no purpose given the small number of children nationally who are subject to it.

Javier Acosta, age 11 is a patient at Children’s Hospital of Philadelphia and in similar circumstances as Sarah.  His parents filed a similar challenge against the Secretary and received the same emergent injunctive relief.  With the attention generated by the Acosta and Murnaghan families and the Court’s ruling, the OPTN executive committee met and created an appeals board comprised of lung transplant surgeons from around the country who will review cases of children under age 12 waiting for a lung transplant.  More formal review by the Secretary and OPTN of the Under 12 rule may not occur until July 2014.

The Murnaghan and Acosta families are currently pursuing permanent injunctive relief that would terminate the application of the Under 12 Rule.