Changes to federal policies governing living organ donors have widespread support among organ procurement agencies. The changes allow living organ donors to be reimbursed for missed work and the cost of child care, which could make donation cost-prohibitive.

“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,” Dr. Seth Karp, director of the Vanderbilt Transplant Center and surgeon-in-chief of Vanderbilt University Medical Center, told Modern Healthcare magazine.

The proposed changes are part of an Executive Order on Advancing American Kidney Health issued in December 2019.

To this point, federal officials have been hesitant to allow for financial compensation for organ donors. Even allowing compensation for lost wages could be construed as payment for organs, officials said. Years of lobbying by organ advocacy groups have pushed the proposed change to this point.

“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.

The proposed changes also come with amendments to the way the nation's 58 organ procurement organizations (OPO) are evaluated. Changes would standardize the data OPOs report. Now, each OPO decides for itself what metrics it will make public. Since each geographic region decides independently which metrics it will report, there's no standardization among organizations. The proposed changes will dictate which metrics must be reported. That way, researchers and CMS has standard data to draw from.

"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.”

Specifically, each OPO's donation and transplant rates would be compared. OPOs that score outside of the top 25% each year would be required to “revise its quality assurance and performance improvement program in order to improve,” according to the Centers for Medicare and Medicare Services.

Pressure has increased to hold OPOs accountable since a 2017 study showed they should have collected five times as many donor organs as they recovered. Further, a 2016 Washington Post analysis showed 27,000 U.S. patients met the criteria to donate organs, but fewer than half that number actually became donors.

In other words, more viable organs could be harvested but there's no way to determine where breakdowns occur since there's no standard way to measure results.

“Let’s say a hospital calls and they have a patient with impending brain death — but no one at the OPO answers the phone, or they don’t respond till the next day, when the opportunity for donation has passed,” said Dr. Jorge Reyes, chief of transplantation at the University of Washington. “Or they (the OPO) don’t manage the donor’s clinical status well and organ donation ceases to be viable. Or they rule out a donor that should’ve received more consideration.”

Comments on the proposed rule changes will be submitted until Feb. 21, 2020.