Needed: A conversation on organ donation

In back-to-back rulings this week, a federal judge decided that two children with end-stage cystic fibrosis—10-year-old Sarah Murnaghan on Wednesdayay and 11-year-old Javier Acosta on Thursday—should be eligible for a lung transplant from the adult donor list, rather than the under-12 list from which they are unlikely to receive new lungs in time. There are too few pediatric transplant donors to meet the demand. The transplants, if successful—if appropriate adult donors are found—would offer them new leases on their still very young lives.

Earlier this week Sarah's parents had appealed directly to U.S. Health and Human Services Secretary Kathleen Sebelius to make an exception for her. When Sebelius refused to intervene, the Murnaghans took their case to court; after U.S. District Court Judge Michael Baylson ruled in their favor, Javier's mother did the same and got a matching decision within hours. The rulings will be revisited at a June 14^th hearing. Until then, Sarah and Javier, both at Children's Hospital of Philadelphia, are eligible for lungs from the adult  transplant waiting list, increasing the chances that they may receive the life-saving operation.

Bioethicist Arthur Caplan, director of the division of medical ethics at NYU Langone Medical Center, said he is concerned about fairness. "It is not clear why everyone now waiting at the bottom of any transplant list would not seek relief in federal court," Caplan told NBC news Wednesday, before Javier's mother filed. "Unless the judge has reason to think the lung distribution rules are simply a product of age discrimination and nothing more—which seems highly unlikely—then this becomes a troubling instance of non-doctors deciding who is the best candidate to receive a lung or other scarce medical resource."

It is those scarce resources that need our attention.

The ins and outs of current priority rules for organ transplant are likely to receive public scrutiny in the weeks and months to come. And they should. A national debate on organ transplant waiting list rules would draw attention to what is really at issue here—that the demand for organs in the United States far outpaces the supply. There are currently 75,650 active candidates (meaning they are medically suitable for a transplant) waiting for organs in the United States. But 18 people die every day, on average, waiting for an organ transplant. In 2012, there were only about 14,000 organ donors (deceased and live donations). Organ donations from deceased donors resulted in the procurement of 28,600 organs that led to 24,560 transplants.

The United States operates on an opt-in system. Individuals can choose to have their organs donated by consenting to be an organ donor (in Pennsylvania, New  Jersey, and Delaware you can do so when applying for or renewing a driver's license or state ID) or immediate families of a deceased individual can choose to donate the organs of their deceased family member. However, even though polls show that the vast majority of Americans are willing to donate organs, in practice, fewer than half are willing to donate a family member's organs upon request by a doctor.

Possible solutions include shifting to an opt-out system, whereby individuals would be presumed to be donors unless they, at time of applying for or renewing a driver's license or state ID card specifically opted out of being a donor. Other countries like Spain, whose organ donation rates are higher than here in the U.S., work on this system. But some have suggested that opt-out would not be a panacea. A study published in 2011 argues that the opt-out system "raises tricky ethical questions and could challenge the relationship between the transplant community and the general public, which should be mutually supportive." Opt-out also may not raise the number of donors because doctors remain reluctant to go against the wishes of family members.

Other countries have experimented with an incentive system in an attempt to increase donors. In Israel, which historically had low donor rates, a law passed in 2010 gives transplant priority to individuals who were already registered as donors, though medical necessity would still be the most important criteria for receiving an organ. A public awareness campaign proved incredibly successful, and registered donors, the consent rate from families, and organs available for transplant have increased dramatically.

Still others discuss using financial incentives to increase organ donation.

We may never completely solve the organ shortage crisis, but whatever the solution, we need to be talking about this so that, in the future, cases like Sarah's and Javier's are about how to best care for those receiving transplants, not fighting over the dramatic shortage of donated organs.

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