Plaintiffs in a federal lawsuit allege that private emails made public Monday show that the top executive of the nation’s organ transplant system and an adviser engineered “a drastic policy change” on “false legal pretenses” to change the way scarce, valuable livers are allocated.
But attorneys for the Department of Health and Human Services, which oversees UNOS and the transplant network, countered that the federal agency — not the two individuals — made the final decision on a controversial new plan for allocating the lifesaving organs.
The filing is part of a lengthy, bitter dispute about how to fairly allocate livers from deceased donors, which are in critically short supply. The larger issue of how to equitably distribute kidneys, livers, hearts, lungs and other organs to the sickest patients, while accounting for the needs of people in geographic regions, minorities and poor patients, has been fought over for years.
For decades, transplant hospitals generally had first shot at organs donated in their areas. A policy adopted in December 2018 under pressure from HHS and litigation offers livers to the sickest patients as far as 500 nautical miles from the donor — a much greater distance than allowed by previous rules.
The plaintiffs assert that the change allows big-city transplant hospitals in New York, San Francisco, Chicago and elsewhere to reach deep into other parts of the country where the organ shortage is not as severe, taking livers from their patients.
But surgeons in urban centers contended that outdated geographic boundaries disadvantaged their patients. They noted at the time that a moderately ill patient in Kansas had a better than 60 percent chance of receiving a liver transplant within 30 days, a similar one in Minnesota had a 6 percent chance and a California patient had a 1 percent chance.
There are almost 107,000 people waiting for transplant organs in the United States, the fewest since 2009; 11,588 need livers, according to UNOS. In 2o20, 8,906 livers from both deceased and living donors were transplanted. About 40,000 organs were transplanted in 2021.
The newly released emails show that in 2017, as the latest debate over liver allocation was occurring, Alexandra Glazier, head of the organization that collects transplant organs in New England, discussed a draft of a letter to a medical journal regarding research on the ways the policy would affect people of color and those in disadvantaged areas.
In an email to Brian Shepard, UNOS’s executive director, she wrote:
“I can say ‘the fact that some states do better than others in preventing preventable deaths and providing health care insurance coverage and access means you’re a dumb f--- for living there and should immediately write your legislators that you want better social infrastructures’.”
Two days before Glazier’s April 28, 2017 email, Shepard wrote to her about similar concerns expressed by some in the transplant community. “This is an infuriatingly elitist argument masquerading as concern for the poor. Only people who have means can get transplants. So this isn’t give ‘txs to poor people’ argument, it’s a ‘give txs to those of us who have to live near poor people’ argument.” “Txs” is shorthand for “transplants.”
Glazier is executive director of New England Donor Services, which collects organs from donors throughout that region and sends them to hospitals for transplant. She served as chairwoman of the transplant system’s policy oversight committee from July 2019 to June 2021, but was not in that post when she wrote the 2017 email and others in Monday’s filing.
In an emailed response to a request for comment Monday, she wrote: “One email appears to be of special interest to the plaintiffs because I regrettably use an expletive in a flip comment about surgeons who I felt should be more proactive in advocating for equitable access to health care for patients in their home states.”
A spokesman for UNOS said in an email the new liver policy “has contributed to greater equity and is saving hundreds more of the sickest patients’ lives since implementation almost two years ago. A few emails nearly five years old have no bearing on these positive outcomes.”
In other emails, Shepard calls a statement from the independent Institute of Medicine “inane” and says separately of an unnamed committee member’s comments: “stupid is so exhausting.” Glazier agreed: “Exhausting,” she wrote back.
In total, the plaintiffs in the liver lawsuit contend, the behind-the-scenes discussion in more than 600 pages of emails show two powerful executives working in concert to foist the result they wanted on the voting board of the transplant network. They also allege that Shepard and Glazier manipulated the Health Resources and Services Administration, part of HHS.
“Defendants improperly bullied through on false legal pretenses a drastic policy change that was arbitrary, capricious and not otherwise in accordance with law, and that denied plaintiffs due process.”
The lawsuit was filed on behalf of four transplant patients and 15 transplant hospitals who asserted they would be denied their fair share of the liver supply under the new policy. After legal wrangling before federal and appellate courts, the new policy went into effect in November 2020. A federal judge has previously refused to halt it while the case continues.
Attorneys for HHS — which is also a defendant in the case — said in court papers filed Monday that the agency and members of the transplant system’s board “thoroughly considered all views, including plaintiffs’ and the result is a policy that . . . is projected to reduce transplant waitlist deaths, promote equitable access to transplants and which was overwhelmingly favored by patients.” They called the idea that UNOS executives bullied a federal agency “absurd.”
A Senate committee is investigating UNOS and a House subcommittee is looking into “organ procurement organizations,” the 57 nonprofit agencies that collect organs for transplant. Many are failing to meet thresholds established during the Trump administration to improve their performance.
Sen. Ron Wyden (D-Ore.), chairman of the Senate Finance Committee, which is examining UNOS, said in a statement Monday the new documents “add to my concerns about the culture and operations at UNOS, all the way to the C-Suite.”
A spokeswoman for the House Oversight and Reform Committee declined to comment.