Organ network needs to keep the voice of children’s advocates

We enter the intensive care unit to examine our 8-month-old patient. Tubes and wiring surround her body like a spider’s web; her mother hovers to place a pink bow in her meticulously combed hair. Mira (not her real name) has biliary atresia, a condition that prevents her liver from properly ridding the body of toxins and protecting her from bleeding.

She waits for a liver transplant, and every day we worry: that she will die from an infection; that her other organs will start to fail; that every day she is supported by machines will affect her ability to live the life her parents have dreamed for her. We each, in our own way, say a silent prayer entreating the universe to let us save this child’s life.

A few states away, a child has suddenly died. His parents, in their unimaginable grief, make the ultimate gift of life by donating his organs. Whose lives should they save? Who decides where they go?

In 1984, Congress created the Organ Procurement and Transplantation Network (OPTN) to oversee and maintain a national registry for organ transplants. This network contracts with the United Network for Organ Sharing (UNOS), a private nonprofit organization, to operate the registry.

Federal law requires the OPTN to “recognize differences in health and in organ transplantation issues … and adopt criteria, policies, and procedures that address the unique health care needs of children.” Under that mandate, UNOS must conduct studies to improve procedures for the procurement and allocation of organs, including projects to increase transplantation among populations with special needs, such as children.

A key goal of the UNOS Pediatric Committee is to develop evidence-based policies that improve children’s access to organ transplants. That work could be jeopardized by a recent proposal by UNOS leaders to convert the Pediatric Committee — the lone voice for children in transplantation — to an “expert council” that cannot sponsor policy changes. Under the proposal, advocates for children would be incorporated into larger, adult-focused committees.

This troubling move might improve efficiency, but at the risk of decreasing children’s access to lifesaving organ transplants. This initiative ignores the very laws that created OPTN’s charter, and affects not only children waiting for liver transplants but also those waiting for a kidney, heart, intestines, or pancreas.

Over the past decade, the number of children on the liver waitlist who receive transplants has remained steady, at about 500 a year, while the number of adults has increased 10 percent per year. A growing number of these adults are over 65, and most are on the waitlist due to obesity-associated liver disease and hepatitis C. Adults now outnumber children on the liver wait list by more than 10 to 1.

While 50 children a year die waiting for a liver, about 250 livers from child donors are transplanted into adults. Most children who die waiting are critically ill, like our young patient. If they receive transplants, they are likely to go on to live full, productive lives.

It doesn’t seem right that children on the liver waitlist die while livers from child donors, which would fit them well, are instead directed to adults. The UNOS Pediatric Committee has proposed policy changes to give critically ill children priority access to these smaller organs. But if the committee loses its ability to call for change, we wonder what will happen to this proposal. Will children’s rights simply be ignored?

Stripping the Pediatric Committee of the power to sponsor policy change is an unacceptable limitation of the voice of child advocates within UNOS. The pediatric community must be able to submit proposals directly to the board, and must be offered increased representation on each of the UNOS organ-specific committees. It’s important for everyone to speak up on behalf of those who cannot, by submitting a comment on the UNOS website or attending a regional meeting.

Improving children’s access to transplantation is not an issue that’s up for debate. It is the rule of law.

Evelyn K. Hsu, M.D., is medical director of liver transplant at Seattle Children’s Hospital and associate professor of pediatrics at the University of Washington School of Medicine. Jorge D. Reyes, M.D., is chief of transplantation surgery at the University of Washington Medical Center and professor of surgery at the University of Washington School of Medicine.