NEW JERSEY – In the wake of a new federal rule that will disregard race considerations when evaluating the organ procurement organizations (OPOs) that help register organ donors and facilitate donations across the country, an advocacy group is addressing the disparities that could arise from the decision. 

Science in Donation—a nonprofit that promotes education about the United States’ organ donation process—is speaking out against the measure and the bipartisan panel of legislators who support it. In a statement to TAPinto, Science in Donation spokesperson Anthony Pizzutillo voiced the institution’s opposition to the rule and discussed its harmful consequences for the entire donation system and its beneficiaries. 

“It strains credulity that federal regulations could be drafted and finalized that utterly discount the role racial and ethnic demographics play in health care delivery,” Pizzutillo said. 

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According to the National Kidney Foundation, the Centers for Medicare and Medicaid Services (CMS) recertify OPOs every four years based on their ability to acquire donated organs and the rate at which those organs are successfully transplanted. Pizzutillo said OPOs operating in communities of color could risk decertification moving forward because the rule does not examine the racial composition of an OPO’s region when assessing whether the organization should remain in business. 

Although OPOs are not responsible for selecting who receives transplants, Pizzutillo said that gauging OPO performance while excluding racial considerations will still fuel the massive gap in treatment between Black and white transplant recipients. In 2019, the Department of Health and Human Services found that 54 percent of all transplant recipients in the United States were white, but 21 percent of the nation’s transplant recipients were Black.

And that same year, transplants were completed on just under 26 percent of all Black patients on the organ transplant list. Comparatively, nearly 48 percent of all white patients awaiting transplants in 2019 had their operations. 

“The determination to measure [OPO] performance as if health disparities do not exist is jaw-dropping, especially given the heightened awareness of the structural racism deeply embedded in our healthcare system that our current pandemic exposes,” Pizzutillo said. 

Pizzutillo also referenced a March 16 letter sent by a team of Congressional Democrats and Republicans backing the initiative. In part, the lawmakers justified their support by citing research explaining that communities of color have a higher chance of needing critical organ transplants than comparable white patients and acknowledging that the present organ donation structure leaves both Black organ donors and transplant patients at a disadvantage. 

But the CMS rule published last December indicates that the agency does not plan to risk adjust for race when judging OPO performance, instead suggesting that each OPO implement their own guidelines to meet their individual regional demographics. The CMS wrote that racial risk adjustments might hide underperforming OPOs and “perpetuate the stereotypes of different racial/ethnic groups and their willingness and ability to be organ donors.” 

Without utilizing racial data in its evaluations, Pizzutillo argued that the CMS would be grading OPOs on an uneven scale. Overall population health, attitudes, disease rates, and access to transplants can vary greatly depending on the racial and ethnic background of a given region, which could lead to vast discrepancies in the performance of each OPO. 

“National levels of donation among racially and ethnically diverse Americans are sub-optimal,” Pizzutillo said. “The new rules exacerbate this inequality by failing to take into account the nature of the communities served.” 

Science in Donation urges New Jersey residents to take action and make their voices heard by going to their website’s Take Action page and sending a message to their House Representative as well as to Senators Cory Booker and Robert Menendez asking them to help save our nonprofit organ donation system.