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Jay Lackritz
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Username: Jay_ny

Post Number: 537
Registered: 01-2007


Posted on Monday, June 10, 2013 - 10:21 pm:   Edit Post Delete Post Print Post

Vote Allows Children Under 12 Seeking Lung Transplant to Have Case Reviewed

Published: June 10, 2013

WASHINGTON — Officials with the national Organ Procurement and Transplantation Network voted in an emergency meeting on Monday to create a new avenue for children seeking lung transplants after two families filed lawsuits challenging the rules.

The families of Sarah Murnaghan, 10, of Newtown Square, Pa., and Javier Acosta, 11, of New York City, sued last week in the hope of changing a rule that keeps children under 12 from qualifying for adult lungs unless eligible adolescent and adult patients in the same geographic region have turned them down. Judge Michael M. Baylson of Federal District Court in Philadelphia ordered the Department of Health and Human Services, which oversees the transplant network, to at least temporarily put Sarah and Javier, patients at Children’s Hospital of Philadelphia, on the adult waiting list.

The case has drawn widespread attention, with critics saying the courts have no business intervening in complex organ transplant policy and supporters of the two sick children saying the rules are grossly unfair. Both children have cystic fibrosis, a genetic disease that ravages the lungs. Sarah’s doctors have said she may have only weeks to live without a transplant.

On Monday, the executive committee of the Organ Procurement and Transplantation Network did not drastically change the rules for lung allocation. But it voted to allow children under 12 awaiting a lung transplant to have their cases reviewed by a national board of lung transplant surgeons. Based on the severity of their condition, the board may allow such children to get on the adolescent and adult waiting lists for lungs while also keeping their spot on the pediatric list.

According to the network, 1,659 people nationwide are waiting for a lung transplant, but only about 30 of them are younger than 12. Since 2007, there has been only one transplant of adult lungs into a child younger than 12 in the United States, the network said.

“The number of patients potentially affected by this policy is very small and unlikely to have a significant impact on the larger pool of transplant candidates,” said Anne Paschke, a spokeswoman for the network, in a statement after the vote.

The rules for lung transplants used to be based on how long a patient had been on the waiting list. But under that system, people who suddenly became very ill and joined the list had virtually no chance of receiving transplants in time to save their lives; others who were less ill and could afford to wait longer nonetheless got transplants first, just because they had been on the list longer. Doctors recognized that patients were dying needlessly, and about eight years ago, the system was redesigned to take into account the severity of illness.

The changes were widely considered successful, and a much fairer way to allocate organs. But they applied only to adults and to children over 12.

Dr. Joshua R. Sonett, a thoracic surgeon at NewYork-Presbyterian/Columbia University Medical Center, said that at the time, there was not enough data about lung disease in younger children for doctors to determine whether altering the rules for them in the same way would be of any help.

“Those 12-and-under kids are still stuck in the old system,” Dr. Sonett said.

In addition to adding the review process for children, the executive committee voted to re-examine the rules for allocating lungs to children over the next year with the intent of making more transplants available to them. The revision allowing for the review process will expire in July 2014, although the committee could decide to renew it at that point.

The vote came after the committee heard testimony from several doctors who expressed medical and ethical concerns about changing the rules on an emergency basis. Although donor lungs can be “downsized” to fit a smaller recipient’s chest, some data suggest the outcomes are poor.

The failure to change the system for children when it was changed for adults was not “mean or capricious,” Dr. Sonett said.

“As a lung transplant surgeon, I don’t want lawyers or nonmedical professionals trying to tell us the best way or adjudicating ways to transplant the patients,” he said. “On the other hand, as a patient advocate, I want all the patients to get transplanted in a fair manner. These children are being disadvantaged in a system that hasn’t been revisited in the eight years since it was created.”

He added, “Maybe this is not the best way for it to come to light and be reviewed, but it’s forcing us medically to reassess how we do this.”

Stephen Harvey, the lawyer representing the Acosta and Murnaghan families, said he was pleased with the vote. But he said he would ask Kathleen Sebelius, the secretary of health and human services, to keep Sarah and Javier on the adult waiting list until their cases were heard by the review board, which could take weeks. If she refuses, Mr. Harvey said, he will ask Judge Baylson to keep his order in place. A hearing in the court case is scheduled for Friday.

Denise Grady contributed reporting from New York.
A version of this article appeared in print on June 11, 2013, on page A11 of the New York edition with the headline: Vote Allows Children Under 12 Seeking Lung Transplant to Have Case Reviewed.

http://www.nytimes.com/2013/06/11/health/vote-aids-children-under-12-seeking-lung-transplant.html
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Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
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Hostess Risé
Board Administrator
Username: Rise

Post Number: 17739
Registered: 05-2003


Posted on Tuesday, June 11, 2013 - 01:07 pm:   Edit Post Delete Post Print Post

Thank you so much Jay for sharing this very informative article.
:-)
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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