Standardized outcome measures get thumbs-up from transplant organizations

THE ORGAN TRANSPLANT community is broadly supportive of a set of proposals the Trump administration issued in late December to revamp the nation’s beleaguered organ donation system.

More than 113,000 people are wait-listed for an organ transplant and someone is added to the list every 10 minutes, according to the Health Resources and Services Administration. Nearly 20 people die every day waiting for a transplant.

“These are bold steps that are going to have an immediate and lasting impact on our ability to serve patients who are on waiting lists,” said Dr. Seth Karp, director of the Vanderbilt Transplant Center and surgeon-in-chief of Vanderbilt University Medical Center, referring to the administration’s proposals.

Under the proposals, living donors would be reimbursed for the expenses they take on while they’re hospitalized and recovering, such as lost wages or childcare. That could encourage more people to become donors by reducing financial disincentives that make it cost-prohibitive for people to donate, especially poorer people.

“The people who are most likely to have financial problems from donating are those who don’t have means,” said Dr. Michelle Josephson, professor of medicine and surgery at the University of Chicago and chair of the American Society of Nephrology’s policy and advocacy committee.

Patient advocates and other stakeholders have spent years lobbying for the change, but some officials were hesitant to adopt what could be misconstrued as financial incentives to donate. They didn’t want to be seen as encouraging people to sell their organs, even though donors wouldn’t make any money from their donations.

A companion proposal would standardize how the federal government evaluates organ procurement organizations, or OPOs, by tabulating each organization’s donation and transplant rates using federal death records and then comparing the results. Each year, an OPO that scored outside of the top 25% would be flagged by the CMS and required to “revise its quality assurance and performance improvement program in order to improve,” according to the agency.

Each OPO now determines what measures it will report on with no universal criteria. That makes it impossible for the CMS and independent researchers to reliably compare performance across organizations.

“It would be like if someone got to write their own scouting report for baseball,” said Brianna Doby, OPO community consultant for Johns Hopkins Medicine. “We need to standardize practice across OPOs, and these metrics are a step in that direction.”

That task is even harder because OPOs are monopolies that don’t compete. Each of them is responsible for a specific geographical region, so they’re not dealing with the same populations. And there’s enormous variation in donation and transplant rates across OPOs, even when they share similar geography and demographics—San Diego and Los Angeles have wildly disparate outcomes, for example.

“It’s going to allow us to identify where the problems are. We’ve never had that ability,” Karp said.

The hope is that standardizing how OPOs are judged will improve the standard of care across the board and increase the supply of organs. That should lead to more transplants, fewer deaths and healthier transplant recipients thanks to shorter wait times.

The OPO community is a tightknit group that readily shares best practices, said Matthew Wadsworth, CEO of Life Connection of Ohio. He’s supportive of the new rules because he thinks they’ll help organizations like his improve and enhance the lives of donors and recipients. But he wonders whether it could change an OPO’s willingness to share information if they’re jockeying for position in the rankings. “Does it create a dog-eat-dog culture of ‘if I don’t share with you, I have a better chance of getting into the top percentile?’ I hope that it doesn’t change the culture. I don’t think that it will,” he said.

Other measures could improve the organ transplant system, such as expanded immunosuppressive drug coverage for kidney recipients or lowering life insurance costs for living donors, but improving how OPOs function should go a long way toward saving more lives.

“There’s a moral imperative to get better at what we do,” Doby said. “The stakes are too high.”