Too young for lungs?

Sarah Murnaghan , 10, has cystic fibrosis, and her doctors at Children's Hospital of Philadelphia say she has just weeks to live. Her parents are calling for a change in organ-transplant policies.
Sarah Murnaghan , 10, has cystic fibrosis, and her doctors at Children's Hospital of Philadelphia say she has just weeks to live. Her parents are calling for a change in organ-transplant policies.
Posted: May 30, 2013

DEAR KATHY,

I know I should address you as Madam Secretary Kathleen Sebelius, since you're secretary of the U.S. Department of Health and Human Services. But I'm writing you mom to mom, not constituent to representative, so I hope you don't mind me using your nickname. I don't want formalities to get in the way of your understanding how desperately Sarah Murnaghan needs your help.

Perhaps by now you've heard of Sarah. She's the 10-year-old cystic fibrosis patient from Newtown Square who's in dire need of a lung transplant.

Her doctors at Children's Hospital of Philadelphia, where she's been living for three months, say she has just weeks to live. In fact, she's sicker than the 105 patients in this region who are ahead of her on the waiting list for lungs (according to blood type).

If this were a just world, Sarah's critical status would place her at the top of the list. But she's younger than 12, a condition she can't fight with spunk and grace the way she has the disease she was diagnosed with at 18 months old.

Back in 2005, the Organ Procurement and Transplantation Network - which sets policies regarding organ allocation - decreed that lungs should be given to the sickest patients first. This was a massive improvement over a prior rule that doled out organs on a first-come, first-served basis, even if the recipient was in better shape than the patient behind him on the list.

Lives have been saved because of this policy change, Kathy. But unless you intervene, Sarah's life won't be one of them. That's because the OPTN allocates lungs differently for transplant patients who are younger than 12.

Basically, these kids are supposed to receive lungs from child donors, not adult ones. The argument is that adult lungs are too large for a child's body. But that's not the case for every child, since kids come in all sizes and so do adult lungs.

There also used to be the argument that young lung-transplant patients don't fare as well, postsurgery, as adults do. But each case is different, say advocates for a change in the policy. Besides, transplant medicine has advanced greatly since the 2005 law was enacted.

So it's wrong to deny a young transplant patient the chance to receive an adult donor lung. Especially because, in 2012, only 20 lungs were donated from children younger than 12, compared with about 1,500 from adults.

I called the OPTN for comment about Sarah's case, but no one got back to me. No surprise there. Friends of the Murnaghan family started a petition last week calling for a policy change from the OPTN and the United Network for Organ Sharing, which enforces the transplant rules. The petition has gone viral globally - as of last night, more than 55,000 had logged on to Change.org to sign it - so the OPTN is no doubt fielding many calls from many different time zones.

The OPTN did release a statement, though, saying it can't bend the rules for one patient. Sarah's parents, Janet and Fran Murnaghan, say they don't want a rule bent. They just want the organization to stop discriminating against their daughter based on her age.

So right now, Kathy, you're probably thinking, "This is sad. But why are you writing me?"

Because, as our own U.S. Rep. Pat Meehan pointed out in a letter he wrote you yesterday, your office oversees the OPTN.

"Since as Secretary you are directed by federal law to establish and fund OPTN, and two HHS officials serve as ex officio members of the OPTN Board of Directors," he wrote, "I am requesting that you convene an immediate meeting of the Board or its Executive Committee to address this tragic unfairness and act to give Sarah a chance at life and an adult lung from the next available donor. Sarah's young life literally hangs in the balance."

Meehan's right, Kathy. If ever there was a time for you to pull rank, it's right now.

The OPTN has said that changing policy is not to be done willy-nilly. That it requires months of discussion, a consideration of new data and thoughtful debate about life, death, fairness and odds. All of which is true.

Changing policy takes time. But making a lone exception, in an extraordinary and rare case such as Sarah's, can be done in days. Heck, for all I know it can be done in a single phone call.

What I do know, for sure, is that a very sick child is getting sicker as you read this. And she is sicker than the people who will receive lungs sooner than she will, thanks to a policy that is killing her as surely as her disease is.

She deserves a chance, Kathy. Please help her.

To contact Sebelius on Sarah Murnaghan's behalf, send an email to Kathleen.Sebelius@HHS.gov.


Email: polaner@phillynews.com

Phone: 215-854-2217

On Twitter: @RonniePhilly

Blog: ph.ly/RonnieBlog

Columns: ph.ly/Ronnie

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