Bill Would Put Kids First In Organ-Transplant Line

Jim Hughes

Denver Post Staff Writer

U.S. Rep. Diana DeGette wants children to have first priority for some organ transplants - even if adults who need the surgery are sicker.

DeGette on Friday introduced legislation to give children priority in transplants of pediatric organs, which now sometimes are given to adults.

Citing statistics that show children are 55 percent more likely to die while waiting for a new organ than are adults, DeGette said her Pediatric Organ Transplantation Act would change the way pediatric patients are prioritized on transplant lists.

Currently, adults and children are listed together, and prioritized by the severity of their sicknesses. DeGette said Friday that the special needs of children often aren't properly considered by the organ-distribution system run by the United Network of Organ Sharing. The private company administers the national system under a contract with the federal government.

"Frankly, there has to be a way of balancing the playing field for kids," the Denver Democrat said at a Children's Hospital press conference Friday afternoon.

"I think we'd all agree that that disparity needs to be brought into balance."

DeGette's legislation also would require that the United Network of Organ Sharing, known as UNOS, take into account the fact that children's diseases often progress more rapidly than do those affecting adults. Therefore, she argues, children should sometimes be given priority for transplants regardless of the source of the organ.

DeGette also is calling for a study of how immunosuppressive drugs are paid for and whether Medicaid, which currently pays for most of those prescriptions, is doing enough to help children live with their new organs. Immunosuppressive drugs in essence trick the body into accepting a new organ as its own and not as a foreign object to be rejected.

The drug issue often is a problem for children who survive transplants but face a lifelong dependence on drugs to survive, said Dr. Ronald Sokol, a pediatric liver-disease specialist who was on hand for DeGette's announcement.

"When kids turn 18, suddenly they have $3,000 to $5,000 a year of medications they need and they can't get insurance for it," he said. "That's a big part of her bill, is to deal with that issue up front."

Early support for bill While health care has become a controversial issue in the nation's capital, DeGette said she believes she will have little trouble shepherding her proposal through Congress. She said she had already received early support from both Democrats and Republicans.

"It's going to be hard to find anybody to oppose this," she predicted. "This is an issue that just should be happening. Irrespective of what happens on the broader issue of health care coverage, this is something we should be starting on soon." While DeGette's proposal may seem like an emotionally appealing one, it may or may not be the way to address organ distribution, said Jim Springer of Littleton, a 25-year veteran of the organ-distribution business. Now a regional counselor to UNOS, Springer said the group met in Chicago just this week to discuss children's transplantation needs. The company already is addressing some of the problems on which DeGette is focusing, he said.

"I feel like it's being done," he said. "It has happened to some degree and it's continually being improved. There are a lot of people trying to make the system more effective and more fair."

And though it may sound callous outside of the medical field, sometimes adult recipients are in more dire need of a transplant than pediatric patients, he said. He warned against accepting a legislative solution to such a problem before the science behind it is fully understood.

"There's a balance between the science and the policy sides of it. A scientist and a politician may look at it differently."

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