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Racial Equity in Organ Donation and Transplantation

The Science in Donation coalition of donation professionals, physicians, healthcare providers, and families rejoiced on January 20, 2021, at the release of President Biden’s Executive Order On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government.

This Executive Order (“EO”) mandates exactly the science-based development of public policy that Science in Donation supports and is particularly relevant to the new Organ Procurement Organization (OPO) rule. The rule ranks and then closes OPOs based upon metrics that are deliberately blind to the tangible and measurable role that race and underserved status play in the healthcare arena.

The rule specifies that “We believe that racial characteristics of the Designated Service Area (DSA) should not be a reason for risk-adjusting OPO performance.” This determination to measure performance as if health disparities do not exist was jaw-dropping, especially given the heightened awareness of the structural racism deeply embedded in our healthcare system that our current pandemic exposes.  It begs credulity that federal regulations could be drafted that utterly discount the role racial and ethnic demographics play in health care delivery. 

Forty years after Dr. Clive Callendar, surgeon, and professor of surgery at Howard University College of Medicine in Washington, D.C, first revealed the complex reasons for the racial discrimination in organ donation and transplantation, his lifelong work was effectively “swept under the rug”. 

Any metric intended to evaluate an OPOs performance should consider its performance within the communities it serves.  For example, if an OPO has demonstrated success in working with Hispanic families and documents a higher than average rate of organ recovery than other OPOs for that community, that success should factor in evaluating its overall performance.  And those who underperform should be required to undertake corrective action, using evidence-based strategies for measurable improvement.

National levels of donation among racially and ethnically diverse Americans are sub-optimal. However, should an OPO succeeding in serving these communities be judged as failing compared to an OPO whose overall numbers may be better but whose practices have huge under-served swaths of citizens in its service area?   

The final rule rejects any measure of discrimination that is not based on “biology.”  More than forty years of research explores the bases for racial disparities in both donation and transplantation. They are real and complex, societal and broad-reaching, and they include, yes, even biology, although probably not in the simplistic, dismissive sense in the final rule.  It should be noted  OPOs play no role in the issue of who or what is transplanted.

After performing its simplistic “color-blind” analysis of performance, the rule contemplates addressing poorer performing OPOs by subjecting them to routinized bidding wars or outright closure.  There is no rigorous analysis of the cost of systemic closure of up to a third of the nation’s private non-profit OPOs every year.  Nowhere does the final rule undertake an assessment of the rule’s ultimate premise, that one-third of the nation’s OPOs face closure every three years.   

There is no reliable, actual review of the human cost of the loss of assets, goodwill, and public trust that these closures might entail.  The engineered instability that such closures will impose on the fragile ecosystem of donation and transplant will inevitably hurt the most vulnerable first.  The likely closure of or, at best, bidding wars for OPOs will have a distinct impact on racial minorities, if only due to their sheer numbers on the waiting lists for organs.