Two Kansas City area hospitals joined 12 other transplant centers this week in a lawsuit over a new liver allocation policy that they say will result in “hundreds of liver transplant candidates needlessly dying.”
The University of Kansas Hospital and Saint Luke’s Hospital of Kansas City are plaintiffs in a federal lawsuit filed in Atlanta against the U.S. Department of Health and Human Services and the United Network for Organ Sharing, or UNOS, the private organization that contracts with the government to manage the nation’s organ transplant system.
The new policy, set to take effect at the end of April, changes the regional system for allocating livers to one that gives priority to the sickest patients.
That has hospitals such as KU and Saint Luke’s upset because their region has a higher rate of donor registration than others.
Supporters of the policy change say that it’s meant to reduce geographic disparities in organ distribution. The notion is that where a patient lives or chooses to list for a transplant should not be a factor in organ allocation.
More than 13,000 people in the United States are awaiting liver transplants and only 7,000 livers are currently available, according to the lawsuit. Another 11,000 people are added to the liver waitlist every year.
The lawsuit filed Monday contends that the new policy “will result in at least 20% fewer liver transplants being performed in the most socioeconomically disadvantaged regions in the country, which are served in part by Transplant Center Plaintiffs’ liver transplant programs.”
“Based on the government’s own data, Transplant Center Plaintiffs will perform 256 fewer transplants per year — leaving 256 candidates at risk of imminent death absent the transplant they would have otherwise received,” the lawsuit states.
Calling the new policy “the product of an opaque, reckless process that failed to allow for full public comment and transparent discussion,” the plaintiffs say they’re not seeking preferential treatment. Rather, they say they’re asking HHS and UNOS “to develop a policy that complies with the law.”
The lawsuit alleges that HHS unlawfully abdicated its responsibility to determine the nation’s liver allocation policy by deferring decision-making to UNOS.
Ann Paschke, a spokeswoman for UNOS, said in a statement that the organization would review the complaint, but believes “that we have developed a sound policy that provides a fairer, more equitable system for all liver patients – no matter where they live – as they wait for a lifesaving transplant.”
“The reality is that, on average, three people die every day in the U.S. while waiting for a liver transplant, and because this new policy will save more lives by reducing the number of patients who die while waiting, we believe it is an improved policy and a step in the right direction,” Paschke said.
“This new policy is projected to reduce waitlist mortality by roughly 100 fewer deaths each year, will allow more children to receive life-saving transplants, and will correct an inequity that emerged over time within the old policy that led to unfair advantages and disadvantages based on where liver transplant recipients live.”
Besides KU and Saint Luke’s, the plaintiffs include Washington University and Barnes-Jewish Hospital, which jointly operate a transplant program in St. Louis that has performed more than 2,100 liver transplants since 1985. Other plaintiffs include hospitals in Atlanta, Detroit, Michigan, Indiana, Iowa, Kentucky, Oregon, Tennessee and Virginia.
Four individuals awaiting transplants are also plaintiffs.
The transplant centers collectively account for 11% of the people nationwide awaiting liver transplants.
KU Hospital, part of the University of Kansas Health System, runs the only liver transplant program in Kansas and has performed nearly 1,600 transplants since 1990, according to the lawsuit. Saint Luke’s has performed about 70 liver transplants in the last five years.
Liver transplant survival rates have improved markedly since Thomas Starzl performed the first liver transplant at the University of Colorado in the early 1960s. The first patients survived only weeks. Today, 86% are alive one year after surgery, 78% after three years, 72% after five years and 53% after 20 years, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Organ donation registration rates vary dramatically by state. They range from a high in Montana of 93% of adults registered as organ donors to a low in New York of 32%. Missouri ranks seventh in the nation, with 73 percent of adults registered as organ donors. Kansas ranks 12th, with 68 percent registered.
As of mid-2018, more than 157,000 liver transplants had been performed in the United States since 1988.
The imminent change in allocation policy has raised hackles among Missouri and Kansas politicians. Earlier this month, Republican Sens. Roy Blunt of Missouri Jerry Moran of Kansas raised the issue during a Senate health appropriations panel hearing at which HHS Secretary Alex Azar testified.
Other elected officials support the change. More than 80 House members sent a letter last month to Azar endorsing it, according to Modern Healthcare.
In an op-ed last week in the St. Louis Post-Dispatch, Blunt said that the new policy could result in a 32% drop in liver transplants in Missouri.
“No longer will locally donated livers be more likely to stay in Missouri or other Midwestern states that have high donation rates,” Blunt wrote. “Instead, the transplantation network rewards locations that don’t have the high number of organ donors that most Midwestern states do.”
The most common reasons for liver transplants are alcoholic liver disease, cancer, fatty liver disease and cirrhosis caused by chronic hepatitis C. The vast majority of donated livers come from people who have recently died.
A statement released by KU said the new policy will result in transporting organs and transplant teams up to 500 miles away from each donor hospital, creating more risks for patients, the organs and the teams as well as higher transportation costs.
“More people will die … that’s the bottom line,” Dr. Sean Kumer, a transplant surgeon, is quoted as saying in the release.
This story was updated to include the comments of a spokeswoman for UNOS.
Dan Margolies is a senior reporter and editor at KCUR. You can reach him on Twitter @DanMargolies.