A Ration of Hope

A year ago, a Pennsylvania child expected to die without a lung transplant received the needed organ through the tireless advocacy of her parents, change.org and media campaigns, the intervention of clergy and politicians and a judge’s ruling.

That she is alive today is an extraordinary and heart-warming story of the medically miraculous, one recounted by CNN and NBC News, and the child’s case now has prompted a policy change ending discrimination against children as candidates for adult lungs. Not that it will end discrimination; amid organ scarcity, that isn’t possible. Deserving people die every day awaiting new organs.

Harvard’s Community Ethics Committee recently completed a study of criteria for listing potential pediatric transplant recipients. That process left me with a new appreciation for distributive justice and rationing amid organ scarcity, the competing demands for privacy and decision-making transparency, and respect for clinicians who must determine who is sick enough to need a new organ but otherwise healthy enough to make transplantation successful.

The policy change was among several announced Monday by the board of directors of both the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. The board “approved on a permanent basis a policy change allowing transplant programs to request additional, exceptional priority for adolescent or adult donor lung offers for transplant candidates age 11 or younger. The action followed additional review of a temporary exception adopted in 2013.”

As of Tuesday morning, there were 78,811 active candidates on the waiting list for organs, according to OPTN. How many of them will receive organs is unclear, but most will die waiting. From January through March of this year, 6,978 patients were transplanted with new organs. 

There are a few things that the CNN and NBC stories didn’t tell me:

Who died so that the Pennsylvania child might live? By my estimation, four people died. Two were the lung donors. When the first transplant failed, the child received another.

The other two people died on the same organ waiting list that the child moved to the top of. Lungs were not available to them, because the child received them. This is the norm in transplantation; many more die waiting than ever get to transplant. The court did not consider this in its ruling.

How many people who signed the change.org petition in support of the child have subsequently signed up as organ donors? If it’s anything like the general public, the percentage is small. Many more say they support organ transplantation than actually “opt in” as potential donors. 

Is it simply that transplant policy was wrong, and children make good candidates for surgically modified adult lungs? Or do adult lung diminish chances of success when transplanted into a child?

Would an “opt out” policy work in the United States? That is, could organ donation be assumed unless a person specifically opted out of the system -- as is the case in several countries?

How is it that CNN and NBC News could report this story without mention of rationing or distributive justice? Americans tend to support the life-saving nature of organ transplantation, but oppose rationing. And we can’t have it both ways.