Toomey: Let Medical Need Decide Care

U.S. Senator Pat Toomey
Philadelphia Inquirer

Sarah Murnaghan, a brave 10-year-old, wants to be a singer or a veterinarian when she grows up. She should have just wrapped up the school year. Instead, she has spent more than 100 days at the Children’s Hospital of Philadelphia battling for her life against cystic fibrosis.

Her doctors are confident that they could perform a lifesaving lung transplant with a portion of an adult lung. The rules for organ donations generally make medical need the primary criterion for receiving an organ. But these rules also limit eligibility for children younger than 12 by placing them at the bottom of the adult list. So Sarah Murnaghan was effectively shut out of the chance to get an adult lung transplant despite her urgent need and suitability. (Pediatric lungs rarely become available.)

This is a dilemma faced not only by Sarah, but also by other children. In part because of the under-12 restriction, children like Sarah are often not surviving. In fact, children waiting for lungs are dying at twice the rate of adults. It is unconscionable that inflexible rules may be contributing to this tragedy.

Department of Health and Human Services Secretary Kathleen Sebelius can correct the flaw in this policy. She has the legal authority either to suspend the under-12 restriction on an emergency basis, or to direct the organ-donor network to suspend the rule as part of a pilot program to acquire more data about how these transplants work for pediatric patients. Thus far, the secretary has not exercised this authority, prompting Sarah’s parents, Janet and Fran, to take legal action.

On Wednesday, U.S. District Judge Michael Baylson granted a 10-day restraining order that suspends the under-12 rule for Sarah and allows her dire medical condition to determine her placement on the adult waiting list to receive donated lungs. Since then, Baylson has issued a temporary restraining order for another child in the Eastern District of Pennsylvania in a similar situation.

Sarah now has at least a chance for a lung transplant – but her chance might expire at the end of the 10 days.

I’m not asking Sebelius to make an exception for one individual, and neither is Sarah’s family. Rather, we are asking the secretary to use the authority granted to her by existing law to stop the discrimination that is occurring against children under the age of 12.

Medical need and suitability, not age, should be the criteria determining how organ donations are prioritized. I hope these court rulings will help encourage the secretary to make this important policy change.

And if Sarah is placed near the top of the list, a prayer might help, too – a prayer that a suitable donor lung is found in time, and that Sarah’s body accepts the new organ the way doctors believe it can. If those prayers are answered, I can’t wait to see the person, and the singer or veterinarian, Sarah becomes.

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