In the US, children die waiting for a liver transplant — there is a better way
BY DR. GEORGE V. MAZARIEGOS, OPINION CONTRIBUTOR — 08/08/19 02:45 PM EDT
“Children are the world’s most valuable resource and its best hope for the future,” President John F. Kennedy told the U.S. Committee for UNICEF in 1963. That same year, Dr. Thomas Starzl, my mentor, performed the world’s first pediatric liver transplant.
I’m excited about the government’s recent announcement of initiatives to increase kidney transplantation and to raise efficiency at all levels of the transplant process. This initiative should raise awareness of the needs of children on the waitlist and improve outcomes for patients for all organ transplants.
Working with children was a defining moment in my career. While every life is precious, to me, saving children is about preserving our future. Yet currently, one in 10 infants and one in 20 children who are awaiting liver transplants in the U.S. die while on the waitlist.
Annually, about 600 pediatric patients receive liver transplants, a fraction of the liver transplants received by adult recipients. In a five-year period, when 316 children died waiting for a liver, more than 1,500 adults were transplanted with a liver that came from a child. Almost half of all livers from children are transplanted into adults; nearly 25 percent of these livers given to adults are never offered to a child. We must do better for our children.
Children and their families awaiting transplants saw noteworthy progress in 2018, when after more than a decade of advocating for change in the liver allocation policy – during which time more than 500 children died – the Organ Procurement and Transplantation Network (OPTN) Board of Directors passed a new liver distribution policy. Under the new policy, generally, all deceased donor pediatric livers would be offered to children first before being offered to less critically ill adults. This is a life-saving, game-changer for children waiting for a liver transplant.
Just before the policy was due to be implemented, several individual transplant programs and adult candidates awaiting liver transplantation filed a lawsuit alleging that the approved 2018 policy would disadvantage patients in their specific geographic areas. It was silent on the plight of children.
The 2018 policy changes went into effect May 14, 2019. Within 24 hours, the federal court ordered OPTN to reprogram to the old system, a liver allocation system that all parties concede is noncompliant with the federal regulation for organ allocation policies.
In the brief time the new policy was in effect, one of my youngest pediatric patients received part of a liver—all she needed to survive and continue to fight her disease. An adult received the other portion of that liver.
This demonstrates what the new liver policy was designed to do—increase the number of pediatric transplants and decrease the number of patients who die each year waiting. Prioritizing national sharing of pediatric donor livers for children would significantly decrease mortality for infants and children on the waitlist, without significant change for adults. Allocating to children first on the waitlist has the added benefit of increasing the likelihood of splitting a liver; allowing two patients to benefit. Reinstituting the 2018 policy would save an estimated 114 lives in the next year alone.
Under today’s policy, children lack the chance to compete against adults for livers because the calculation used to decide their place in line for a liver significantly underestimates their risk of death. To make matters worse, although there are enough pediatric donor livers to transplant all children in this country who need liver transplants, current OPTN policy dictates that these pediatric livers first be offered to adults locally rather than to sicker, more critically ill children further away.
More than 60 pediatric transplant organizations, professionals—including me—and pediatric liver transplant families want to raise awareness of these unintended consequences to children. We signed an open letter and started a petition, joined by more than 13,875 signers, to encourage the re-institution of the 2018 policy. We want to help children live their intended life.
While this currently rests with the federal courts, as a pediatric transplant surgeon, I’m an optimist. I believe the liver transplant community will recognize that what unites us far outweighs what divides us; that we can find a path to put children first and resolution outside of the courthouse.
Dr. George V. Mazariegos is chief of pediatric transplantation at University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh of and chair of the Organ Procurement and Transplantation Network’s Pediatric Transplant Committee and the views expressed here are his own.