The messages, many deeply personal, focus on the regional boundaries that divide life from death for patients with liver disease.
“My partner passed away waiting for a liver transplant in Chicago,” one commenter wrote in support of a proposal to change the nation’s system of allocating livers. “Any move that can make access to transplant more equitable is a move in the right direction.”
Another commenter, from South Carolina, disagreed: “I’m a 63 year old male that had a successful liver transplant on 5/9/14′ at MUSC Charleston SC…I truly believe residents of SC should receive these desperately need[ed] organs first, before shipping them to other regions.”
Yet another wrote: “People in NY need to take care of people in NY. If they can’t, well they should move somewhere else.”
All were writing in a response to a proposal that would change the geographic lines that determine access to donor livers in communities across the United States. The public comment period, set to conclude at midnight, has drawn more than 500 submissions from patients, advocacy groups, and physicians. Now a key panel must decide whether it should advance the plan toward a vote in December by the board of the United Network for Organ Sharing (UNOS).
The effort is aimed at bringing a resolution, or at least a truce, in a long-running civil war over a scarce supply of donor livers in the United States. Its refugees are extremely sick patients who sometimes die waiting in a bureaucracy that determines their fate based largely on old boundaries that don’t take into account differences in supply and demand.
More than 14,000 people are currently seeking liver transplants in the United States, according to UNOS. In 2016, 1,220 people died on waiting lists.
The proposal to change the allocation system would broaden sharing of donated livers to a 150-nautical mile radius around the donor hospital, regardless of which organ region a potential recipient lives in. It would also award points to candidates based on their proximity to the hospital, to help minimize travel and logistical challenges.
“The intent of the policy is to offer livers to the patient who’s got the most urgent need for a transplant,” said Dr. Julie Heimbach, a Mayo Clinic transplant surgeon who chaired the UNOS committee that devised the proposal. “One way to reach more of the urgent people at the time they need it is to share over a slightly bigger area.”
Presently, UNOS allocates livers based on defined borders between 11 different geographic regions. That system has led to unequal access to organs, forcing some patients, especially those in high population areas, to suffer worsening illness and progress closer to death before receiving transplants. The organization measures illness severity among patients using a MELD score (model end stage liver disease), with a higher number indicating increased severity. In 2016, the median MELD score at transplant in donor service areas across the United States ranged from 20 to 40, which translates to an estimated risk of three-month mortality without a transplant of 11 percent to nearly 100 percent, according to UNOS.
Many factors play into those geographic imbalances, including varying demographics and rates of disease, different rates of organ donation, and different practices of transplant centers and patients’ access to care.
But if the mathematics of the problem are complicated, the politics are even more so. Transplant centers want to protect their ability to treat their patients, so the existing regional boundaries have created entrenched interests that are resistant to change. Reform efforts are further complicated by socioeconomics, and differences in access between rural and urban populations.
Like proposals that came before it, the new solution is generating sharp disagreements along those fault lines.
Indiana University Health, that state’s largest hospital system, wrote in its comment letter that the proposal would harm Indiana residents with liver disease and reduce the number of transplants. It also argued that it would unfairly ship livers to other regions that have not had the same success in increasing organ donation and using those organs effectively.
“The solution should not be moving livers from the Midwest and South to these large urban areas like New York, California and Massachusetts,” wrote Dr. Jonathan Fridell, a transplant surgeon at IU Health. “This proposal only serves to reward those locations that underutilize existing resources at the expense of those locations that have been successful in reducing their wait list through aggressive organ transplant techniques.”
Fridell added: “We are also gravely concerned that this proposal has the potential of taking livers away from patient populations that are disproportionately low-income and underserved.”
The region that includes Indiana — region 10 — voted against the proposal, as did region 11, comprising Kentucky, South Carolina, North Carolina, Tennessee, and Virginia.
Region 7, which includes Illinois, Minnesota, North Dakota, South Dakota, and Wisconsin, voted in favor. Also in favor was region 9, covering New York and western Vermont. Representatives of that region argued in a comment letter that the proposal does not go far enough.
“Region 9 is recommending changes to distribute livers more broadly and with fewer constraints,” the letter said, noting that the region voted to expand the sharing radius to 250 miles. “Modifying the constraints to share more broadly will benefit all areas.”
Whether the vast divide between these regions can be bridged is an open question.
Earlier this year, UNOS, which operates the Organ Procurement and Transplantation Network under contract with the federal government, shelved a prior effort to create eight new regions designed to ensure more equal sharing of livers. Eight of the 11 regions voted against the proposal, which was finally abandoned in May.
The latest proposal was developed with input from a group of liver surgeons and other stakeholders that provided recommendations on how the system should be changed. It seeks to address concerns that arose in response to the eight-region proposal, which many complained was based on a flawed scoring system that could lengthen wait times in some areas and force transplant centers to close.
Instead of redrawing geographic boundaries based on mathematical analysis of supply and demand, the current proposal seeks to keep the regions but soften their borders to allow for more sharing across the lines.
But opponents argue the plan places too much emphasis on a patient’s MELD score. They say the solution should be to focus more directly on increasing organ donation rates and transplantation practices in parts of the country with shortages, rather than re-drawing the regional borders.
“This policy is attempting to change allocations for the entire nation, which isn’t entirely broken, to fix two parts of the country,” Fridell said, referring to the East and West coasts. “That’s why the vast majority of the country has been opposed to this policy.”
Some critics are even more pointed, alleging that the committee proposing the change is skewing information about MELD scores to support its position.
“Members of [region 11] believe that data has been consistently manipulated throughout the conception of the proposal in a way that pushes favorable statistics to the forefront of the discussion while ignoring data that is detrimental to the proposal,” representatives of the region wrote in a comment letter. “The result of any proposal that is based on match MELD at transplant, and not waitlist mortality, is that livers will be reallocated away from vulnerable, rural populations to larger metropolitan areas where patients have far greater access to healthcare.”
A UNOS spokeswoman said in a statement the data was generated by the Scientific Registry of Transplant Recipients and was presented in public meetings and broken out in the draft proposal. Heimbach said MELD score is not being used to skew the results of the analysis, but because it is the measure currently used to allocate livers. “Right now, we put people in order on the wait list based on the MELD score,” she said. “It determines the patient most likely to die in the next three months, and that’s the system we’re using.”
She added that it is difficult to use waitlist mortality as a measure because of the variability in sickness level of people put on waitlists from region to region.
Heimbach’s committee will meet Oct. 10 in Chicago to weigh the input and decide how to proceed — whether to alter the proposal, scrap it, or forward it to the full UNOS board for a vote in December. She acknowledged that the ongoing regional battle over the proposal is making progress slow and difficult.
“It’s been a lot of years we’ve been trying to do this, and people do have a lot of concerns about change,” she said. “Patients’ lives are at stake and we’re worried about it. … We’re trying to make the best improvement we can, and it’s really hard.”