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With dying kids in spotlight, transplant panel considers lung donor policy – Brett Norman &#82

By BRETT NORMAN | 6/7/13 6:30 PM EDT

The organization that sets national organ transplant policy holds an emergency meeting Monday to review a rule that has drawn a federal court, the transplantation community, desperate parents and the Obama administration into a high-stakes fight over how to allocate scarce lungs.

Both courts and congressmen are second-guessing a longstanding policy that effectively prevents children under 12 from receiving lungs from adult donors. The Organ Procurement and Transplantation Network has to decide whether to abandon the rule or fight for it in court.

The transplantation community does not want to set a precedent of making abrupt changes of policy in response to an outcry in the media or a political storm. If that became the norm, the carefully calibrated system would fall apart. But the political pressure to jettison it is substantial.

Each week, about four people die while waiting for lungs. But the wrenching case of 10-year-old Sarah Murnaghan, highlighted through a media campaign by her family, catapulted the issue into the national spotlight. Lawmakers demanded that HHS Secretary Kathleen Sebelius intervene and suspend the policy, but she ordered a review instead.

When two families sued, a federal judge in Philadelphia ordered Sebelius to allow Murnaghan, and 11-year-old Javier Acosta, to get the same consideration as adults. The children have advanced cystic fibrosis. A doctor at their hospital told the court that patients who get a lung transplant live a median of six or seven more years.

The policy impacts a tiny number of people. Lung transplants in children are so rare that doctors don’t have enough experience to know how well a transplant is likely to work in a given case — and that’s part of how transplant priorities are set for adults.

Since 1992, only nine children have received lungs from an adult, and none since 2006. The “Under 12” policy took effect in 2005 as part of a policy revamp, five years in the making, that replaced the earlier standard of first-come, first-served, regardless of how sick the potential recipient was.

Thomas Egan, professor of surgery at the University of North Carolina, who chaired the panel that developed the policy, said evidence supported making that change, and validated it after. The number of people who died while on the waiting list has dropped, he said, in part because of the smarter targeting of organs.

And generally, he said, an adult lung can’t be transplanted into a child’s chest cavity. It just won’t fit. The policy now gives children priority for any organs donated by other kids their age — but there aren’t that many pediatric donors.

The age-linked policy also reflects that diseases don’t always work the same way in children as in adults. Criteria used to judge how critically ill an adult is don’t work the same way for kids and that makes comparisons difficult. A separate simpler ranking system was set up for children.

Experts with OPTN began looking at the latest data as soon as the Murnaghan case bubbled up in the media, said Stuart Sweet, director of the lung transplant program at St. Louis Hospital and secretary to the board of directors of the transplant network.

At an executive committee meeting Monday, the OPTN officers will decide whether to keep enforcing the rule, in which case they will have to make their case next Friday for the federal judge who is considering whether to grant a permanent injunction against it.

If they choose to suspend the policy, the lawyer for the families said he would drop the lawsuits.

Politicians are watching.

Sen. Bob Casey (D-Pa.) sent a letter to Sebelius Friday asking for answers to a series of questions he raised earlier this week.

“As an elected official, I cannot substitute my judgment for that of medical experts who perform and support life-saving organ transplants every day,” he wrote. “However, I believe it is necessary that the questions I have asked be answered in a full and fair manner, especially because they affect decisions regarding the allocation of lung transplants to children.”

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