Family Matters

Parents Lobby — and Win —a Shot at New Lungs for Their Kids. Are Transplant Rules Made to Be Broken?

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Sarah Murnaghan, 10, needs a lung transplant

Score one for pushy parents. The families of two children with cystic fibrosis who need new lungs but were ineligible for adult organs have successfully used the courts and public opinion to get their daughter and son on the adult waiting list, which is normally unavailable to kids under 12.

On Wednesday, one of those children — Sarah Murnaghan, 10, whose family escalated their daughter’s quest for donor lungs to federal court — was reportedly receiving a transplant“Sarah got THE CALL,” wrote her mother, Janet Murnaghan, on Facebook. “Please pray for Sarah’s donor, her HERO, who has given her the gift of life. We are overwhelmed with emotions!!!!”

Sarah’s parents and those of Javier Acosta, 11, didn’t do anything that any desperate mom or dad in their heartbreaking situation wouldn’t try. But their success raises a disconcerting question: are organ transplant rules made to be broken?

Sarah’s family had already made headlines by launching a petition on calling attention to her plight. Last week, the families of both children, hospitalized together at Children’s Hospital of Philadelphia, sued to change rules that limit kids under 12 to lungs from donors their age. A federal judge ordered the Organ Procurement and Transplantation Network (OPTN), which oversees transplant guidelines in the U.S., to temporarily lift the age restrictions, effectively broadening the pool of potential organs.
With lung transplants, size matters. How well transplanted organs nestle into the ribcage is important. Adult lungs can be too large for a child’s body.

On Monday, OPTN’s executive committee amended its policy to allow transplant surgeons to review the individual cases of kids under 12 in need of a lung transplant. The surgeons would decide, on a case-by-case basis, whether a child should be eligible for adult lungs as well. The new policy is set to expire July 1, 2014, though experts will spend the year leading up to then deciding whether permanent changes are required.

As gripping as these two particular cases are, they are only a snapshot of two families grappling with one disease. There are countless other conditions that land a person on a transplant list, and each organ has different criteria for who is first in line.

“An important feature of the system by which the United States has decided to allocate organs is equity. Equity means different things for different organs,” says Jeff Kahn, a professor of bioethics and public policy at Johns Hopkins’ Berman Institute of Bioethics.

About a decade ago, Kahn served for five years on the ethics committee of the United Network for Organ Sharing, which is federally contracted to allocate organs. He recalls the rules governing organ transplants being deliberated over and hashed out, ad nauseam. “There is lots and lots of process before you get to a policy,” says Kahn. “When I teach bioethics, we talk about justice. When you have a pie, how do you divide it fairly?”

 When it comes to kidney transplants, for example, there’s been increasing consensus that it’s not equitable to transplant the kidney of a twentysomething into an octogenarian. “There was concern that we were leaving some ‘life’ in kidneys that were going into 80-year-olds,” says Kahn. “We have to think about how we can get the biggest bang for the buck.” There is now a proposed change to kidney transplant allocation rules that limits the age gap between donor and recipient to about 20 years. 

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In 2005, a new process to rank who gets adolescent and adult lungs went into effect. The Lung Allocation Score, or LAS, was developed by OPTN staff members, who descended upon transplant centers nationwide to scrutinize patient records and determine a scoring mechanism that prioritizes the most urgent cases. Among many factors, LAS takes into account how sick a person is and how well he is expected to do with a transplant.

Because there were not enough pediatric lung transplants to provide data to develop an LAS for kids, the organ network settled on different criteria in 2010 that separates children into two tiers of medical urgency: priority 1 and priority 2. Priority 1 kids, for example, must be permanently connected to a ventilator.

Both methods of ranking patients’ need are “constantly tweaked and updated,” says Anne Paschke, a network spokeswoman. “They are constantly looking at ways to improve all our transplant policies to make the best use of the organs we have.”

It’s challenging to craft policies that are authoritative yet flexible, says Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital. “We don’t know what the best rules are,” says Wilfond, who began his career as a pediatric pulmonologist, taking care of cystic fibrosis patients just as transplants were becoming an option a few decades ago.

“We make the best rules with the best information we have,” he says. “As time goes on, we figure out that some rules we were following may not have been the best rules, and we adjust them in one direction or another.”

This is the first time a court order has been issued on transplant rules. To abide by the ruling, the network had to create separate listings for Sarah and Javier with fake birthdates to fool the system into thinking they were 12.

The ruling has the potential to create preferential treatment for just a small subsection of patients — kids between about the ages of 5 and 11. The bodies of babies and toddlers are too tiny to accommodate adult lungs. But the expanded scope also raises new questions. What about small adults, for example? Should they now be added to the wait list for pediatric donors?

As of June 7, more than 1,650 people in the U.S. are waiting for a lung transplant, and 30 of them are children under 10. Forty children are between the ages of 11 and 17. Each patient, each family, is buffeted by despair and hope as they await the phone call that may change their life. Not everyone will get that call informing them that a compatible organ is available, which highlights another problem — not just allocation rules but the critical shortage of organs. “With 18 people dying every day on the transplant list,” says Paschke, “we don’t think it will ever feel fair to everyone.”

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