A new liver distribution policy was approved earlier this month. | Courtesy of the United Network for Organ Sharing (UNOS)

Some Kentucky surgeons worry that a new way of allocating livers to U.S transplant patients could be detrimental, or even deadly, to people in the bluegrass state.

“The fear in Kentucky and many southern states, and many states that have transplant centers that represent rural patients, is … we’re going to become organ farms for large cities,” said Dr. Malay Shah, surgical director of liver transplant for UK HealthCare in Lexington.

The board that handles the issue on a national level passed a new policy earlier this month that will give patients who live in distant locales, such as Chicago, access to livers donated in Kentucky. The policy affects the handling of livers from most deceased adult donors across the country.

Dr. Julie Heimbach is a transplant surgeon at Mayo Clinic in Rochester, Minnesota. | Courtesy of Mayo Clinic

The goal of the policy, which is based on a system of concentric circles on the map, is to better equalize the distribution of livers across the country and to comply with a federal rule that says the most urgent candidates are to be transplanted first, said Dr. Julie Heimbach, a Minnesota transplant surgeon. She chairs the OPTN/UNOS Liver and Intestinal Organ Transplant Committee that was tasked with coming up with a fair policy.

“Because we’re gonna be able to transplant the people at most risk of death, we should, hopefully, overall save more lives,” said Heimbach, who works for the Mayo Clinic.

The new policy, which goes into effect sometime next year, also may ease concerns in some major metropolitan areas like New York where some patients are having to wait much longer to get a liver transplant than some less-sick individuals in other parts of the country.

But leading transplant surgeons in Lexington and Louisville say Kentuckians will not do as well under the new policy, which allows hospitals to obtain livers from a radius of up to 500 nautical miles, as they do under the current one, where Kentucky shares livers within a five-state area.

One way of telling how urgently a patient needs a liver is through their MELD score, which stands for model for end-stage liver disease and ranges from 6 on the healthy end to 40.

When the new policy for handling livers goes into effect, “in essence, the larger centers with more patients (and higher MELD scores) will take liver(s) from Kentucky,” Dr. Christopher Jones, transplant program director at Jewish Hospital in Louisville, said via email.

Indeed, the new system will “leave a lot of our patients at risk of dying,” said Shah, a fellow transplant surgeon. “The death rates will go up.”

The surgeons also fear that if too many livers are siphoned away, the policy could jeopardize their programs, which each perform roughly 40 to 50 liver transplants a year.

“We just simply wouldn’t have the volume to sustain a viable liver transplant practice,” Shah said.

Dr. Christopher Jones is transplant program director at Jewish Hospital and an associate professor at the University of Louisville. | Courtesy of KentuckyOne Health

Jones is concerned that the new policy could lead to liver transplant volume decreasing by as much as 26 percent in Kentucky.

At the center of the controversy is the United Network for Organ Sharing (UNOS), a private, nonprofit organization that serves as the nation’s Organ Procurement Transplantation Network (OPTN) under federal contract. It manages the country’s waiting list for organs.

As of Dec. 11, there were more than 114,000 people nationwide waiting for organs, including 13,560 candidates needing livers, according to the OPTN website. In Kentucky, there were 1,026 candidates on the waiting list for organs, including 167 needing livers.

The demand is always greater than the availability of organs for transplant. “What is really needed is more donors,” Heimbach said.

The new liver distribution policy was approved Dec. 3 by the OPTN/UNOS Board of Directors after the issue was studied by a Heimbach-led committee that was under a deadline from the federal government to find a solution before next year.

Who gets a transplant first

Nationwide, individuals with the most urgent need for a transplant — who are known as the Status 1A and 1B patients — will get top priority.  Their cases are the most rare and urgent, so those patients will have first crack at livers within a radius of 500 nautical miles of the donor hospital.

The next set of patients — individuals with a MELD or pediatric score of 37 or higher — will get access to livers within a radius of 150 nautical miles, then 250 nautical miles, then 500 nautical miles of the donor hospital. There’s a similar sequence for patients with lower scores.

Livers can be preserved up to 12 hours, according to OPTN.

Generally, the higher the MELD score, the more risk there is that the patient won’t survive without a transplant, Heimbach said. Patients with lower scores are at less risk, so they can safely wait longer, she said.

Shah said that MELD scores don’t always reflect the reality of how sick a person is or their access to care. For example, people in the eastern Kentucky mountains who have a MELD score of 25 don’t have nearby access to the highly specialized care that can be found in areas like New York, he said.

Liver transplants are the second most common type of transplant after kidney based on data from January 1988 to November 2018. | Graphic from UNOS

That Kentucky patient has a “significantly higher rate of death” than someone with “a MELD score of 25 in New York or Boston or things like that,” Shah said. “… My patient or Chris Jones’ patient, they don’t have the ‘opportunity,’ if you will, to get sick enough to get a MELD score high enough to like 35 to 40 … because guess what? They die before they get to that point.”

But Heimbach said, “we’re hopeful that by being able to transplant the sicker patients that everybody would do a little bit better, and that’s what the models have suggested … that more of them will be able to survive” nationwide.

Jones, an associate professor of transplant at the University of Louisville, said Kentucky Organ Donor Affiliates has done a good job of recruiting organ donors and that low-performing counterparts in other parts of the country, such as New York, need to step up.

In Kentucky, “we have never had really high MELD scores because the Southeastern U.S. has a generous donor population, so we are able to get our patients transplanted before they get really sick,” Jones said.

The new policy does not address the need for more donors but will act as a sort of equalizer when it comes to transplants, Heimbach explained.

“In areas where they (liver transplant patients) historically have been able to access transplant at a slightly lower score, now it’s going to be at a slightly higher score, and in areas where they were historically accessing transplant at a higher score, now it would be at a slightly lower score, so hopefully, everyone will be more close to equal,” she said.

Another transplant plan was approved in December 2017 but, before it could go into effect, OPTN/UNOS had to go back to the drawing board following critical comments the U.S. Department of Health and Human Services received relating to the need for broad sharing of organs in order to comply with the law. Organ distribution also has been the subject of litigation.

In a news release, Sue Dunn, president of the OPTN/UNOS board, said a number of options were considered and that the new policy represents a necessary step forward.

Solid organ transplants in Kentucky

The debate about the impact of the new policy takes place as people around the country are waiting for organs, including livers, and some will die before they get them.

In 2017, more than 1,200 liver candidates were removed from the liver list because they died, according to UNOS. Twenty-eight of them were listed at centers in Kentucky.

If programs in this state were to shut down because they became unsustainable, Kentuckians would have to go elsewhere to get their liver transplants and might not be able to afford that. Therefore, “the people who are already disenfranchised become even more disenfranchised,” Jones said in an interview.  “I have people who don’t even have gas money to come to Louisville to be evaluated.”

Melia Harvey received a liver transplant last year. | Courtesy of Melia Harvey

Melia Harvey, 39, who received a successful liver transplant at Jewish Hospital in October 2017, said one of the advantages of being able to get a transplant close to home is having easy access to family, friends and colleagues. As the single mother of three teenage children, she had to rely on the help of others to keep her household going when she was sick.

Harvey, a respiratory therapist for Norton Children’s Hospital, needed a transplant because of damage caused by non-alcohol steatohepatitis (NASH), which led to cirrhosis and months in the hospital.

In times like that, “your family and your support system is vital,” said Harvey, who said she received excellent care from Jewish.

According to previous reports by Insider Louisville, the University of Louisville has been developing contingency plans to move six UofL clinical programs, including solid organ transplants, out of financially strapped Jewish Hospital.

Jones said whether Jewish will close is above his pay grade.

David McArthur, a spokesman for KentuckyOne Health, said KentuckyOne and Catholic Health Initiatives “remain in productive discussions with University of Louisville officials regarding the future of services at Jewish Hospital that are in partnership with UofL.”

Darla Carter

Darla Carter

Darla Carter is a hometown girl who recently joined the staff of Insider Louisville to mostly cover health. She previously served as a longtime health and fitness writer for The Courier-Journal, where she also worked for the Metro, Neighborhoods and Features departments. Prior to that, the award-winning journalist wrote for newspapers elsewhere in Kentucky and Tennessee, covering a range of topics, from education to courts. She's a graduate of Western Kentucky University, where she studied journalism and philosophy, and is the proud mom of two young children.