(Washington, D.C., Thursday, July 15, 2021)—Global Liver Institute (GLI) is urging the U.S. Office of Management and Budget (OMB) to implement fixes to the organ transplantation system rife with inequities for minorities, starting with three concrete steps.
“Equity matters, ethically, scientifically and by law. People of color are 1.5 to 4 times more likely to have conditions leading to kidney and liver failure but less likely to receive transplants,” Donna R. Cryer, JD, GLI CEO and president, wrote to OMB. “This is why we applaud the Office of Management and Budget for recognizing the value of collaboration and working collectively with the public health community to address the barriers that prevent people of color from accessing essential transplant care.”
While key general federal reforms of the organ transplant system are under way, OMB wields influence as a presidential office to ensure strong implementation of those reforms and to implement specific changes to ease the transplant inequities facing minorities, she said. The three steps OMB should take immediately:
One, OMB must help hold Organ Procurement Organizations (OPOs) accountable. A critically important reform rule is going into effect but no OPO will face decertification until 2026. “We ask OMB to do all that it can to usher in urgent accountability sooner. COVID-19—and its devastating, inequitable effects—will only make things worse, creating more patients with organ failure,” Cryer wrote.
Two, the United States must invest in culturally appropriate education and training for OPO staff. The staff is less likely to approach and work with families of color on organ donation. “Failure to invest resources in culturally appropriate education and staff to have these most difficult conversations with families results in unnecessarily low awareness and trust levels,” Cryer wrote.
Black and Latinx patients have a lower referral rate for liver transplant and inferior outcomes than White patients, disadvantaged through the social determinants of health, according to a new policy paper co-authored by Andrew Scott, GLI policy director.
Three, the United States needs an Office of Organ Policy to elevate donation, recovery, and transplantation and harmonize organ donation programs across the U.S. Department of Health and Human Services. “This office would unite a community too often distracted and divided by liver allocation rules that just shift disadvantages from patient type to patient type,” Cryer wrote.
In May, Cryer testified before a key U.S. House of Representatives hearing on the importance of accountability and better performance from the organizations responsible for procuring life-saving organs for transplant, including the disparate impact of the system on minorities and people of color.
The Hepatology policy paper, “Equitable Access to Liver Transplant: Bridging the Gaps in the Social Determinants of Health,” exploring how the social determinants combined with the highly subjective process of liver transplantation evaluation harm vulnerable patients, outlines three areas for action: identify and reduce implicit bias, expand and optimize telemedicine, and improve community outreach.
Cryer’s letter to OMB is here.
About Global Liver Institute
Global Liver Institute (GLI) was built to solve the problems that matter to liver patients, equipping advocates to improve the lives of individuals and families impacted by liver disease. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. GLI believes liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI is the only patient-created, patient-driven nonprofit organization tackling liver health and all liver disease holistically, operating globally. Follow GLI on Twitter, Facebook, Instagram, LinkedIn, and YouTube.