US officials ease lung transplant rules for children

Pair with cystic fibrosis ruled eligible for donor organs from adults after court challenge by parents to criteria for treating children waiting for op

PUBLISHED : Wednesday, 12 June, 2013, 12:00am
UPDATED : Tuesday, 11 June, 2013, 9:23pm

US health officials have voted in an emergency meeting to allow children to seek lung transplants from adult donors, after two families filed lawsuits challenging a ban.

The families of Sarah Murnaghan, 10, of Newtown Square, in the US state of Pennsylvania, and Javier Acosta, 11, of New York, sued last week in the hope of changing the 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.

The number of patients potentially affected is very small

Judge Michael Baylson of the US District Court in Philadelphia last week 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 might 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 might allow such children to get on the adolescent and adult waiting lists for lungs while also keeping their spot on the paediatric list.

According to the network, 1,659 people nationwide are awaiting 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, 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.

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 got transplants first because they had been on the list longer. Doctors recognised 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 Sonett, a thoracic surgeon at New York-Presbyterian/Columbia University Medical Centre, said that at the time, there was not enough information 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," 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", Sonett said. "As a lung transplant surgeon, I don't want lawyers or non-medical professionals trying to tell us the best way or adjudicating ways to transplant the patients. 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."