All tied up and no place to go

Analiese N. Bagley

First Posted: 6/4/2013 PHILADELPHIA &#8212; The U.S. Secretary of Health and Human Services said she won&#8217;t intervene in an &#8220;incredibly agonizing&#8221; transplant decision about a dying Pennsylvania girl, noting that three other children in the same hospital are just as sick.
Kathleen Sebelius told a Congressional panel Tuesday that medical experts should make those decisions.
But relatives of 10-year-old Sarah Murnaghan said Sebelius&#8217; remarks confused them because they want a policy change for all preadolescent children awaiting lung transplants, not just Sarah.
The Newtown Square girl has been hospitalized at Children&#8217;s Hospital of Philadelphia for three months with end-stage cystic fibrosis, and is on a ventilator. Her family wants children under 12 to be eligible for adult lungs because so few pediatric lungs are available.
Under current policy, only patients 12 and over can join the list. But Sarah&#8217;s transplant doctors say she is medically eligible for an adult lung.
The change would add perhaps 20 children from ages 8 to 11 to the adult waiting list, which has more than 1,600 people on it, according to Sharon Ruddock, Sarah&#8217;s aunt.
&#8220;One moment they say we&#8217;re asking for an exception for Sarah. The next moment they say we&#8217;re asking for sweeping changes and it has to be studied,&#8221; Ruddock said Tuesday.
Sebelius has called for a review of pediatric transplant policies, but the Murnaghans say Sarah doesn&#8217;t have time for that.
&#8220;I&#8217;m begging you. &#8230; She has three to five weeks to live. Please suspend the rules,&#8221; U.S. Rep. Lou Barletta, R-Hazleton, urged Sebelius at a House Education and the Workforce Committee hearing on her department&#8217;s budget.
Sebelius conceded that the case was an &#8220;incredibly agonizing situation,&#8221; but said that many complex factors go into the transplant-list formula.
Researchers have less data on lung transplants in preadolescents because only about 20 a year are done. And young children suffer from different lung diseases than adolescents and adults, making it harder to weigh their risk versus their chance of surviving a transplant, according to a letter to Sebelius from Dr. John P. Roberts, president of the Organ Procurement and Transplantation Network.
Amid concerns about the higher mortality rate in pediatric patients waiting for lung transplants, the network has tweaked its policies in the past few years, Roberts said. The new rules give the younger children priority over adults when adolescent lungs become available and give the sickest children priority in a 1,000-mile radius, a broader range than used in the adult system, he said in the letter, which was shared by the office of Rep. Patrick Meehan, R-Pa.
Meehan, in a letter to Sebelius, said Sarah&#8217;s doctors are confident they can perform a successful transplant on her. And he said she would jump to the top of the adult list if placed there, given the stage of her disease.
&#8220;If she was 12 this wouldn&#8217;t be an issue,&#8221; Meehan wrote. &#8220;Sarah is not asking to be placed ahead of another, but rather she is petitioning for the ability to compete for equitable treatment based on sound medical judgment and that she be accorded her appropriate place in line. Her need and survivability are the critical factors.&#8221;

Health and Human Services chief won’t intervene in transplant case