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Transplant call tough one that may set precedent

About Luis Fábregas
Picture Luis Fábregas 412-320-7998
Medical Editor
Pittsburgh Tribune-Review

Luis Fábregas is an award-winning reporter who specializes in medical and healthcare issues as a member of the Tribune-Review’s investigations team.

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By Luis Fábregas

Published: Saturday, June 8, 2013, 12:01 a.m.

Pity Kathleen Sebelius.

The U.S. Secretary of Health and Human Services this week found herself in the extraordinarily awkward position of telling a Philadelphia mom and dad that it isn't her job to decide if their 10-year-old daughter should get a life-saving lung transplant.

The girl, Sarah Murnaghan, is hospitalized at Children's Hospital of Philadelphia with end-stage cystic fibrosis, a condition that has severely damaged her lungs. A transplant could save her, but pediatric lungs (for children younger than 12) are few and far between. Here in Pittsburgh, only two such transplants have been done in kids this year.

The natural solution is to move Sarah to the adult waiting list, which is prioritized by severity of illness. This increases her odds to get new lungs because she's very sick, fighting for her life on a ventilator. Under federal rules, however, Sarah would have to be 12 for this to happen.

As the nation's top health official, Sebelius could bend the rules. But she told a congressional panel that medical experts should make organ allocation decisions.

Sarah's parents, who say their daughter has a few weeks to live, responded by going to federal court. A judge ruled Wednesday that Sarah can be moved to the adult list — at least until a June 14 hearing. It's possible that she could get a transplant by then.

Sarah's case is filled with all sorts of implications about the role of government in health care and the nation's organ transplant system. The first thing it does is potentially open the door to other lawsuits. A family of a second child awaiting a lung transplant at Children's in Philadelphia has sued and has been added to the adult list.

Ultimately, there is no black and white in this case. As a parent, it is impossible not to feel for Sarah's family.

The twist in this situation is that now the fate of an organ allocation rule rests in the hands of a federal judge. These decisions could set a precedent that might result in more lawsuits that entangle matters even more. Will those at the bottom of waiting lists head to court every time they're passed up for an organ?

No matter the outcome, Sebelius will be the bad guy in this story. In choosing not to intervene, she appears heartless to parents with children in this unfortunate position. But if she had made a decision either way, she would open the door to renewed criticism alleging she is a one-woman, life-or-death panel, a concept that Obamacare critics have bandied about for years.

In some ways, Sebelius was right not to intervene. As smart as she is, nobody should want Sebelius or any other government official making life-or-death decisions about health care. Would Sebelius be expected to jump in anytime there's a questionable transplant decision to be made? Should her word trump the intricate analysis of those medical experts who set transplant policy? Would this set the precedent for her to intervene in other treatment decisions made by the federal Medicare plan?

This being a complicated story, it can be argued that Sebelius could have avoided all the hassle and made a one-time decision for Sarah's sake. Sebelius could have broken the rule, saved a little girl and become the hero of this story. Then again, that's exactly what a federal judge did. He broke the rule, and now the not-so-easy repair of this convoluted system must begin.

Luis Fábregas is a staff writer for Trib Total Media.

 

 

 
 


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