Proposal could mean fewer Kansas livers for Kansans awaiting transplants

Kansas has one of the highest organ donation rates in the country, so if someone here needs a liver transplant, they’ll probably get it sooner than, say, someone in New York or California.

But a new proposal would make Kansans wait a little longer for transplants and ship Kansas livers to less donor-generous states.

A nonprofit in charge of the nation’s organ transplants – the United Network for Organ Sharing – has released a redistribution plan to make liver transplants more equitable across the country.

Tim Schmitt, program director for the University of Kansas Hospital Center for Transplantation, said he thinks the proposal inappropriately takes organs from Kansas and other states with high donation rates.

“I strongly believe redistricting organs will simply change where people die and not increase the number of transplants,” he said.

For now, liver redistribution is just a concept. The group will release an updated version of its proposal at the end of May. The soonest it could turn into a formal policy proposal is early to mid 2016, and at the earliest, it would go into effect in 2017.

Local perspective

Right now, the country is divided into 11 donor regions. Redistribution would condense the 11 regions into four or eight larger regions, according to the concept plan.

Kansas’ donor region includes Wyoming, Colorado, Nebraska, Iowa and Missouri, which have the highest organ donation rates per number of medically eligible deaths, according to comprehensive data from the Organ Procurement and Transplantation Network.

Kansas has the fourth highest liver donation rate in the country – right behind Delaware, Alaska and Washington, D.C., according to data from the transplantation network and Scientific Registry of Transplant Recipients.

“I don’t think we should punish the community that has the highest rate of donation and make it harder for them to get a transplant,” Schmitt said.

He said the United Network for Organ Sharing should spend its time, money and resources into recruiting organ donors rather than redistributing them.

Tyler Blythe, a 19-year-old from White City, received a liver transplant at the University of Kansas Hospital in August. His mom, Debbie Lyons-Blythe, said broader organ sharing would have posed too high of a risk.

“Rather than poaching livers from another area, we need to get more donors,” Lyons-Blythe said. “My son could have died. My son would have died if we shipped the liver across the country.”

National perspective

The main justification for redistribution is to give livers to the sickest patients, rather than those living closest to the donors.

“We’re not asking Kansans to be the supply for hundreds of organs to go somewhere else,” said David Mulligan, chair of the Liver and Intestinal Organ Transplantation Committee, which created the redistribution concept. “What we’re asking is for everyone in the country to help us develop a system so that patients, wherever they live, can have the same access to transplants.”

In November 2012, the United Network for Organ Sharing and the Organ Procurement and Transplantation Network board of directors decided the country’s disparity in available organs was “unacceptably high.”

“Organ donation is not a local resource really,” said Mulligan, who also serves as chief of transplantation and immunology at Yale School of Medicine. He added that most donors are interested in saving the patients most likely to die.

He cited a 2013 survey by the Department of Health and Human Services that found 82 percent of respondents said they want organs to go to the most medically urgent patients, regardless of where they live in the United States.

Won’t increase donors

Nonetheless, Schmitt criticizes redistribution for its lack of focus on organ donation.

“The only way to save more lives is to increase the number of donors,” he said.

The Pacific Northwest and Northeast have the worst organ donation rates in the nation, according to annual data from the Scientific Registry of Transplant Recipients.

Lyons-Blythe’s solution to the problem: education.

“I know it has to be awful being a mom on the coast, knowing your kid is sicker than my kid,” she said. “I understand that pain, I really do. But the answer is not shipping livers around; it’s increasing the total number of livers in those metropolitan areas.”

She said she’s amazed by low donation rates in bigger cities because access to emergency personnel and faster response times would make the number of deaths in which organs are suitable for transplants more common than in the rural Midwest.

“I believe if they knew the kind of people they could save though organ donation, if they could meet my son Tyler, they would do it,” she said. “I just can’t imagine, that even in the midst of that horrible, horrible tragedy of someone dying, that they would say no to saving a life.”

Mulligan said fewer people would die with redistribution – even though the plan doesn’t create more donors. That’s because redistribution would create more equal transplant rates across the country, he said.

“If it was all a wash, and we didn’t have an impact on saving lives, then we wouldn’t do this,” Mulligan said.

But Schmitt says the math is simple.

“If you don’t increase donors, you can only do the same number of transplants,” he said. He added that increased donors not only helps patients who need livers, but also patients waiting for other life-saving organs that one donor provides.

“The other people aren’t going to get better,” he said. “They’re going to die.”

Waiting list scores

Patients who need liver transplants are ranked on the waiting list by a scale called the model for end-stage liver disease, which ranges from 6 to 40, with 40 being the most urgent and most severe.

The proposal states that “candidates in some parts of the country must wait until they are quite ill before they receive a liver transplant, while those in other areas receive transplants when they are much less ill.”

In order to bring down the scores in other areas of the United States, Kansans would have to wait until they’re a little sicker to get a transplant. And according to the proposal, Kansas’ median patient score at transplant ranges from 23 to 24, a relatively low median compared with the rest of the nation.

The redistribution plan wouldn’t change the way patient conditions are scored, but it would change priority in who gets the organs. Right now, livers go to patients locally, then regionally, then nationally. The new system would set priority on a regional, then national basis.

Lyons-Blythe said Tyler’s score was 24 on his first diagnosis. But within 20 days, his condition jumped to the top of the scale.

Even in a regional-first system, Tyler would likely have been at the top of the waiting list. But Lyons-Blythe said that with a broader sharing pool, Tyler’s chances of getting a liver would have been compromised.

“He couldn’t have lived a few more days or hours,” she said. “I can image that if he didn’t get that liver specifically, he would have died. If it would have been shipped away, we would have lost my son.”

Business aspect

The proposal states that some transplant centers could lose business, especially ones that have patients who rank low on the waiting list when an organ becomes available.

The University of Kansas Hospital is the only liver transplant center in the state. The hospital transplanted 106 livers last year.

Redistributing organs could mean less money for Kansas doctors but more money for others, according to Schmitt of the University of Kansas Hospital. He said that under the proposal, transplant programs in some regions could grow by 30 to 40 percent.

Rob Linderer, CEO of Midwest Transplant Network, said the hospital that removes the liver from a donor usually receives $30,000 to $40,000. Performing the transplant is much more lucrative. The average total cost for a liver transplant is $577,100, according to the United Network for Organ Sharing.

Linderer also said broader sharing could be problematic during inclement weather. Livers need to be transplanted on average within six hours, although organs from some healthy donors can last up to 20 hours.

“There’s quite a bit of sharing going on right now for people who are very sick, and I think more of that should go on,” he said. “But to broaden it out the way they’ve suggested seems to take it pretty far. I think we all agree there needs to be additional sharing, but just not on the scale of this remodeling.”

This story was originally published May 9, 2015 at 5:38 PM with the headline "Proposal could mean fewer Kansas livers for Kansans awaiting transplants."