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Lung by Sarah Murnaghan suffers from cystic fibrosis, a crippling respiratory ailment. If she does not get a new set of lungs within a few weeks, she will likely die. Sadly, Sarah’s doctors at the Children’s Hospital of Pennsylvania have a very small chance of finding a suitable donor.
Rules set forth by the United Network for Organ Sharing (UNOS), the non-profit that manages the national organ waiting list, require that patients under 12 years of age be offered lungs from a deceased adolescent. Presumably, lungs from an adult, which are in greater supply, would be too large for a child-sized body.
For several weeks, Sarah’s frantic parents, Janet and Francis Murnaghan, have made public pleas to get her equal consideration with adults in need of lung transplants.
On Tuesday, lawmakers got involved, urging Health and Human Services Secretary Kathleen Sebelius – whose agency contracts with UNOS — to intervene. “I’m begging you,” Rep. Lou Barletta implored Sebelius, “she has three to five weeks to live.” Sebelius declined.
On Wednesday, District Court Judge Michael Baylson of Philadelphia overruled the secretary and blocked her from enforcing the age restrictions for 10 days. This would allow Sarah to be near the front of the queue for adult lungs (which her surgeon would reduce to size for her).
And this brings us to the most wrenching question of all: what about the people who will die to save Sarah? Think about it: If adult lungs become available within the next 10 days – the extent of Judge Baylson’s suspension – and Sarah’s doctors surgically reduce them so that they fit, will another person, say a young woman whose 21 year-old life is also hanging by a thread, now die instead?
That’s an agonizing question to pose. Yet it’s precisely the situation that our current transplant system, based on voluntary donation alone, forces everyone — patients, families, their doctors, politicians, and the Secretary of HHS – to confront.
The answer, of course, is to increase the organ supply. But with annual voluntary donations falling far behind demand, we need to give people an incentive to donate. Sarah’s ordeal should force a re-examination of the 1984 National Organ Transplant Act (NOTA), the law that makes it illegal for anyone to give or acquire an organ for material gain.
A revision of NOTA would allow experimentation with incentives to move forward. For organs such as lungs and hearts, the donor must be deceased. Perhaps an individual could agree to donate his organs at death in exchange for a burial benefit or a contribution to his or her estate when the time came. A third party, such as the government or a charity, could underwrite the cost of the benefit.
Would such incentives work? There is good reason to be optimistic, but we need research to be sure. One thing that is inarguable is that our transplant system is an unqualified failure. Over 118,000 patients now wait for kidneys, livers, hearts and lungs. Eighteen die every day because they could not survive the wait.
The organ shortage drove Sarah’s parents to pleading for her life. It has pushed politicians to pressure a cabinet secretary to decide who lives and who dies.
Compensating donors could spare us the heartbreak of rationing. Saving one person should not mean death for another.
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