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Transplant Group Rejects Lung Rule Changes, Creates Special Appeal And Review System

PITTSBURGH (CBS/AP) — The national organization that manages organ transplants on Monday resisted making emergency rule changes for children under 12 who are waiting on lungs but created a special appeal and review system to hear such cases.

The executive committee of the Organ Procurement and Transplantation Network held a teleconference to consider children who seek to qualify for adult lungs, and many members voiced serious ethical and medical concerns about a recent federal judge's ruling that questioned the existing system.

The meeting was prompted by the cases of two terminally ill children, 10-year-old Sarah Murnaghan, of Newtown Square, and 11-year-old Javier Acosta, of New York City, who are awaiting transplants at Children's Hospital of Philadelphia. Last week, federal Judge Michael Baylson ruled that they should be eligible for adult lungs after U.S. Health and Human Services Secretary Kathleen Sebelius declined to intervene in such cases. Both children have end-stage cystic fibrosis, and Javier's brother died two years ago while on the waiting list.

The families challenged transplant policy making children under 12 wait for pediatric lungs to become available or be offered lungs donated by adults after adolescents and adults on the waiting list had been considered. They said pediatric lungs are rarely donated.

One expert on transplant ethics said the network is trying to acknowledge the concerns the judge raised but also issue a warning.

"I think what they're trying to tell the judge is, 'We have a system. It's working. Let us decide, not you,'" said Dr. Arthur Caplan, a bioethicist at New York University Langone Medical Center.

He said the judge's ruling "did hit a moral nerve" because the network recognizes the need to examine the claim that the 12-year-old distinction for lung transplants is arbitrary but the network also tried to "preserve the integrity of the system by not changing the rule" based on court intervention.

The Murnaghans' said in a statement that they consider the creation of the appeals process "a tremendous win for Sarah" and all other children waiting for lungs, but they added that the biggest issue is finding enough donors to help people who need transplants.

"We hope Sarah's story moves people to become organ donors," they said.

The Murnaghans' attorney, Steve Harvey, said the vote creates "a little appeals process" and Sarah's case may go back before the new network review board. But he added that they plan to ask Sebelius to keep Sarah eligible for adult lungs, as the judge instructed, until such a review is over.

The family has said that Sarah may have only a few weeks to live and that no suitable lungs have been found for her, even with the emergency exemption.

Committee member Alexandra Glazier, who's with the New England Organ Bank, said during the call that while she can't comment on specific transplant cases, judicial intervention is "not an appropriate approach" to managing organ donation. Glazier said that while an order by any judge might be well-intentioned, it would "inevitably fail" to take into account the many complex medical and ethical issues that go into crafting broad national rules.

"The message that lawsuits are a mechanism" to deal with complex medical or ethical issues is a dangerous one, Glazier said.

Dr. Steven A. Webber, of the Vanderbilt University Medical Center, said the network's pediatric committee voted 14-0 not to recommend emergency changes to existing rules.

"We did not feel that there was overwhelming compelling evidence" to make changes, Webber said.

While members of the network's executive committee voiced sympathy for anyone who is waiting for a transplant, they noted that making any sudden change to the system to help one group risks harming some other group. The existing system was created after years of reviews by numerous medical professionals and members of the public.

The network said in a statement after the teleconference that there are 1,659 candidates nationwide waiting for lung transplants, of whom 30 are age 10 or younger. The group said it was not immediately clear how many children may consider the option of a review under the new appeals process.

The network said that since 2007, only one lung transplant in the United States has occurred from a donor older than age 18 into a recipient younger than 12.

Republican Senator Pat Toomey and Democratic Senator Bob Casey both commended the Organ Procurement and Transplantation Network's decision.

Sen. Toomey released a statement Monday night:

"I commend the Organ Procurement and Transplantation Network for acknowledging that the status quo is flawed with respect to children under 12.   I appreciate that the OPTN was open to considering substantive reform. 

"While I am still reviewing the policy changes, I am concerned about a seven-day waiting period during which a child with an urgent need, who is a suitable transplant candidate, is excluded from the transplant list while a panel reviews the case.  This strikes me as problematic. 

"Nevertheless, this issue could be solved at once if Secretary Sebelius would use the authority granted to her by existing law to stop the discrimination that is occurring against children under the age of 12.  Medical need and suitability, not age, should be the criteria determining how organ donations are prioritized."

Sen. Casey also released a statement:

"I am grateful that the OPTN, tonight, decided to give kids the opportunity to be evaluated for lung transplants based on their medical need and suitability rather than just their age. While I would never substitute my judgment for that of medical experts, it is important that we remain vigilant in re-examining policies, especially when lives are at stake. We all have an obligation to do whatever we can to ensure that children and others awaiting transplants are given the best chance to survive.  This includes encouraging individuals and families to consider organ donation so that more people waiting for organs are given the gift of life."

Republican Congressman Patrick Meehan released the following statement:

"Today's unanimous approval by the OPTN Board of a new, temporary policy acknowledges that children like Sarah should have every opportunity to fight for their lives and not be disadvantaged by rigid rules. The new policy gives greater flexibility for medical professionals to ensure children can access donor lungs in a scientifically based manner. It is a step in the right direction and I am grateful that the OPTN Board was willing to consider this issue. My thoughts and prayers continue to be with Sarah and her family as she inspires us with her bravery and her own fight for life."

(TM and © Copyright 2013 CBS Radio Inc. and its relevant subsidiaries. CBS RADIO and EYE Logo TM and Copyright 2013 CBS Broadcasting Inc. Used under license. All Rights Reserved. This material may not be published, broadcast, rewritten or redistributed. The Associated Press contributed to this report.)

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