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In My Words: A child’s fight for life exposes facts about organ donations

Professor Mary Jo Festle argues in a newspaper guest column that it's unfair to label the nation's organ transplant system as "senseless" because of one girl's battle for new lungs.

Versions of the following column appeared recently in the Roanoke (Va.) Times, the (Greensboro, N.C.) News & Record, the Fayetteville Observer, the Hickory Daily Record, the (Burlington, N.C.) Times-News, the (Durham, N.C.) Herald-Sun, the Winston-Salem Journal and the Gaston Gazette via the Elon University Writers Syndicate.

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Professor Mary Jo Festle

A child’s fight for life exposes facts about organ donations
By Mary Jo Festle - festle@elon.edu

Sarah Murnaghan likely would have died this summer without a lung transplant.

The 10-year-old from outside Philadelphia was in the end stages of cystic fibrosis, a genetic disease that impedes your ability to breathe, when she received a double lung transplant following weeks of lobbying by family, congressional representatives and thousands of voices online.

If Sarah were two years older, she probably would have received new lungs sooner, because she would have been eligible for lungs from an adult rather than a child donor, of whom there are far fewer. Then her family’s public fight to save their daughter may not have threatened an organ transplant system designed to prevent such perfect storms of medicine, media and politics.

I understand the Murnaghans’ desire to take any action to keep Sarah alive. I watched my brother John die from the ravages of cystic fibrosis and I’m forever grateful that my brother Bob’s lung transplant for the same condition offered him five additional years in which to graduate from college, teach elementary school, and enrich many people’s lives.

But as a historian who has studied lung transplantation, I didn’t think it fair for those who rallied to save Sarah to characterize our existing national policy on organ transplants as arbitrary or senseless.

When Congress created the nation’s organ transplantation system in 1984, it wanted unbiased, consistent policies. The nonprofit United Network for Organ Sharing was tasked with developing rules to prevent discrimination or preferential treatment because of money, political clout or the savvy use of media to whip up public support.

UNOS first allocated lungs primarily based on the length of time a candidate waited, as long as the donor organs matched the recipient’s blood type and would fit the body.

Around 2000, lung transplant specialists began reassessing the system. Too many people were dying on the waitlist, and people with certain diseases had a lower probability of receiving transplants. In addition, the federal government wanted UNOS to ensure policies were based on objective medical criteria.

The nonprofit’s Lung Allocation Subcommittee examined statistics from thousands of previous transplants and the system today gives priority to patients with the most urgent need and the greatest chance of survival post-transplant. The subcommittee worried about pediatric patients, for whom there was much less data. It put pediatric cases in a separate category because lung size matters and children have different post-transplant courses.  Since then, the subcommittee has periodically reassessed the system and made minor changes.

Decreeing the system unfair to children, the Murnaghans turned to Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services. Sebelius acknowledged the agony of the situation but said it was not her place to unilaterally alter national protocols or make exceptions for an individual situation. Her request that UNOS again reassess its policies didn’t stop some critics from dubbing Sebelius with nicknames like “Cruella” and “America’s Death Czar.”

The Murnaghans then asked a federal judge to block the lung transplant rules. The judge ordered Sebelius to temporarily add Sarah to the adult waitlist for transplants, and on June 12, a pair of donor lungs arrived. That’s wonderful news for Sarah - and a troubling precedent. The Murnaghans’ legal success could be the first in a chain of lawsuits that quickly undermine our carefully constructed organ transplant system.

I’m not saying the public should have no voice in medical policies. Indeed, it’s important that we call attention to problems. Those who craft policies should understand how their decisions impact people.

But if we’re going to change our system, it’s crucial to follow an objective process that analyzes as much data as possible. The process has to be done with the best interests of all patients in mind, not simply one child, and slowly enough to get it right, even though the need is urgent.

I don’t want to be the one deciding between a child with cystic fibrosis, a middle-aged community leader with pulmonary fibrosis, or a parent of three with pulmonary hypertension. I don’t really want a judge deciding, either.

I’d rather that medical experts – on a committee with other people dedicated to organ transplantation – be the ones to carefully and knowledgeably weigh the medical data and make those decisions.

The Lung Allocation Committee has surgeons on it, including pediatric surgeons who helped write the existing policy. They desperately wanted Sarah and the other 1,700 people on the lung waiting list to live, too. They are not cruel.

What’s cruel is the disease that poisoned Sarah’s original lungs.

What’s tragic is the shortage of donated organs.

What’s agonizing is the decision of how to allocate those scarce organs.

I don’t know whether current policies should be adjusted long-term, but we shouldn’t smear compassionate individuals dealing with extraordinarily difficult situations.

If your heart has gone out to Sarah and her family, rather than rail against the system, consider celebrating her new lease on life by telling your loved ones that you want to be an organ donor.

Mary Jo Festle is a professor of history at Elon University and author of “Second Wind: Oral Histories of Lung Transplant Survivors.”

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Elon University faculty with an interest in sharing their expertise with wider audiences are encouraged to contact Eric Townsend (etownsend4@elon.edu) in the Office of University Communications should they like assistance with prospective newspaper op/ed submissions.

Viewpoints shared by this syndicate are those of the author and not of Elon University.

Eric Townsend,
Staff
6/17/2013 8:00 AM