Organ transplants are gaining more and more attention in the news, and there is little wonder why. In 2022, a total of 42,800 organs were transplanted in the U.S., yet thousands of people still die each year while on the transplant waiting list. According to The Health Resources and Services Administration (HRSA) a new person is added to the transplant waiting list every 10 minutes. Despite high need and long waiting lists, many viable organs go to waste far too often. All signals point to a system in desperate need of improvement.
Global Liver Institute’s (GLI) founder and CEO, Donna R. Cryer, JD, called for bipartisan reform of the broken transplant system in 2020, testifying in 2021 at a hearing of the U.S. House Committee on Oversight and Reform, Subcommittee on Economic and Consumer Policy in its bipartisan pursuit of accountability and better performance from the organizations responsible for procuring life-saving organs for transplant. GLI also joined other advocacy organizations asking CMS to make an initial step in remedying the issue by substituting the metrics by which Organ Procurement Organizations (OPO) are evaluated for a new verifiable metric that is not open to self-reported interpretation and similarly supported a letter from Senators and Representatives calling on regulators to take measures to oversee and improve OPO performance in the interim given the lives at stake and equity implications.
In response to this collective advocacy, HRSA recently announced the Organ Procurement and Transplantation Network Modernization Initiative, which aims to update the existing donation database, contract more organizations to share the burden of the responsibilities that are currently managed solely by UNOS, and increase investment in organ procurement and transplantation.
GLI commends HRSA’s latest announcement. This initiative is a significant step in the right direction, however HRSA’s proposed changes do not directly address the issues of organ availability and efficient delivery, which are paramount to improving equity and access. As the U.S. organ transplant system is modernized, GLI will continue to focus our efforts on improving equity and access to organ donation and transplantation.
Donna R. Cryer, JD
President & CEO
Global Liver Institute
Policy Developments at Global Liver Institute
Appropriations public testimony
GLI CEO Donna R. Cryer submitted a public witness testimony to the U.S. House of Representatives’ Appropriations Committee, Subcommittee on Labor, Health and Human Services and Related Agencies requesting that U.S. Congress direct funds to combat the rising incidence of liver disease and liver cancers. In this testimony, Mrs. Cryer discussed combatting the nonalcoholic steatohepatitis (NASH) epidemic, advancing the hepatitis C elimination program, increasing vaccinations for hepatitis B, and directing funding to agencies to address liver disease and liver cancer.
GLI provides public comment on the Institute for Clinical and Economic Review’s (ICER) Resmetirom and Obeticholic Acid for NASH draft evidence report.
In response to GLI’s comments, ICER has invited patient advocates to speak at their upcoming NASH public meeting to provide their thoughts on the drugs under review and reactions to the ICER report findings, and to discuss the impact of NASH on patients’ lives.
GLI LIVE: Organ Procurement Advocacy for Improved Transplantation & Liver Health
Yesterday, Donna R. Cryer was joined by guest Greg Segal, co-founder of Organize, a non-profit patient advocacy group that works to increase the number of transplantable organs every year, to discuss organ donation, transplantation and more. With the ongoing discussions following HRSA’s announcement that it will modernize the OPTN, it is a critical time to consider this important aspect of liver transplantation. Watch the GLI LIVE episode here.
- April 14-16: Midwest Metabolic Clinical Symposium
- May 5: The B.I.G. Symposium 2023: Health Equity at the Forefront
- May 6-9: Digestive Disease Week
- June 8: International NASH Day