During the Congressional recess in August, GLI prepared for a busy fall. Congress returns in September to advance appropriations bills and debate key legislative priorities. The Administration will continue its work related to Medicare coverage policy, FDA consideration of new drugs and devices, and advancing an NIH research agenda.

HRSA Responds to passage of bipartisan legislation reforming the organ donation system after GLI testified in person at the Senate Finance Committee on July 20, 2023.

Congressional debate on appropriations bills will be a focus in Congress in September.

For the first time in 5 years, all Senate appropriations bills were introduced and passed by the Senate Committee on Appropriations in a bipartisan fashion, with leadership from Chairwoman Patty Murray and Ranking Member Susan Collins. The bill provides modest increases for key agencies and health programs such as NIH, CDC and DOD. To learn more about the specific funding levels in the Senate bill, please reference the draft report accompanying the Senate Labor, Health and Human Services bill. The House Labor, Health and Human Services bill does not include a draft report to accompany the bill that was passed on a partisan vote by the House committee. Spending cuts in the House largely came from health-related programs and are anticipated to be the source of significant debate in Congressional efforts to fund the government beyond this fiscal year, which ends September 30, 2023.

NIDDK’s Advisory Council to meet on September 13, 5 council seats expire at the end of year.

The next meeting of the NIDDK’s National Diabetes and Digestive and Kidney Diseases Advisory Council (NDDKAC) will be held on September 13 at the NIH Main Campus in Bethesda. With 5 council seats expiring at the end of the year, GLI is pleased to nominate Julius M. Wilder MD, PhD to be a member of the NDDKAC. Not only is Dr. Wilder an accomplished gastroenterologist, transplant hepatologist, and medical sociologist with a national reputation in health equity, he would bring much-needed diversity to the NIH NIDDK Council’s work. View the nomination supported by GLI and other leading organizations.

GLI has endorsed several key pieces of legislation that may be considered in the fall.

GLI looks forward to working with its partners to pass the following bills:

• Treat and Reduce Obesity Act, legislation introduced by U.S. Senators Tom Carper (D-Del.) and Bill Cassidy (R-La.) and Representatives Raul Ruiz (D-Calif.) and Brad Wenstrup (R-Ohio) to combat the obesity crisis – access the Obesity Action Coalition’s Action Center to urge cosponsors.
• Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act, legislation creating a benefit category for MCED tests – access Prevent Cancer Foundation’s Action Center to urge cosponsors.
• Living Donor Protection Act, legislation protecting living donors – access the AAKP’s Action Center to urge cosponsors.
• Saving Access to Laboratory Services Act (SALSA), legislation supporting access to testing and innovation – access the Action Center to urge cosponsors.
• Hepatitis C Elimination Program, program proposed in the President’s budget for FY 2024 – GLI is following closely for legislation to be introduced advancing the program.

GLI requests input from government entities, hepatology and larger healthcare and health policy communities on the impact of and response to AASLD’s nomenclature change for nonalcoholic fatty liver disease (NAFLD). 

Last September, GLI’s CEO Donna R. Cryer, JD,  provided insights on proposals to change the name of NAFLD and NASH to eliminate the term “non-alcoholic” by noting that this debate did not start with patients nor did it respond to patient priorities. Following the official publication of changes despite patient concerns, GLI is leading an impact analysis to mitigate confusion among patients and clinicians and understand the associated costs to patient advocacy and regulatory approval alike. We welcome your feedback on steps your organization will take to respond to these changes. Please email nash@globalliver.org to join the next meeting or direct your input.

In July, GLI used its voice to challenge policymakers to take steps to advance high quality, equitable care for everyone. We met with key Members of Congress to push for action to reform the organ transplant system and facilitate research toward reducing health disparities.

Vote for GLI for a Healio Disruptive Innovators Award

Great news! Healio named GLI CEO Donna Cryer a nominee for its Disruptive Innovators Award – Patient Voice. We are grateful for the recognition of her leadership in advancing research and problem-solving in liver disease and equipping other advocates!

🗳 Vote for Donna and other disruptive innovators today!

Global Liver Institute Works to Advance Health Equity

Bipartisan legislation reforming the organ donation system passed after GLI testified in person at the Senate Finance Committee on July 20, 2023. GLI’s CEO Donna R. Cryer, JD was invited by Senator Ben Cardin (D-MD) to testify at a hearing titled “The Cost of Inaction and the Urgent Need to Reform the U.S. Transplant System.” Now 28 years after her own liver transplant, Ms. Cryer testified that it is time for the Organ Procurement and Transplantation Network to be modernized to achieve better outcomes for patients, especially those most disadvantaged by the current system. The U.S. Organ Procurement and Transplantation Network (OPTN), bipartisan legislation responding to the urgent need for reforming the OPTN, achieved final passage after the hearing.

GLI is pleased to nominate Julius M. Wilder MD, PhD to be a member of the National Diabetes and Digestive and Kidney Diseases Advisory Council (NDDKAC). Not only is Dr. Wilder an accomplished gastroenterologist, transplant hepatologist, and medical sociologist with a national reputation in health equity, he would bring much-needed diversity to the NIH NIDDK Council’s work. View the nomination supported by GLI and other leading organizations.

GLI Pushes for Policies to Improve Access to Care

GLI endorsed the Treat and Reduce Obesity Act, legislation introduced by U.S. Senators Tom Carper (D-Del.) and Bill Cassidy (R-La.) and Representatives Raul Ruiz (D-Calif.) and Brad Wenstrup (R-Ohio) to combat the obesity crisis – which is deeply linked to chronic liver disease. This bipartisan legislation would expand coverage of new health care specialists and chronic weight management medications for Medicare recipients and increase regular screenings. Access the Obesity Action Coalition’s Action Center to ask your Member of Congress to cosponsor this important bill.

GLI joined over 75 organizations commenting on the updated value assessment framework proposed by the Institute for Clinical and Economic Review. We urged ICER to put patients and people with disabilities at the center of its assessments and to discontinue using research methods to value treatments that discriminate and fail to accurately capture outcomes that matter to patients. Their work may embolden payers to use utilization management tools that restrict patient access and autonomy – which risks worse health and greater costs.

GLI pushes for studies on the impact of AASLD’s nomenclature change for nonalcoholic fatty liver disease (NAFLD). Last September, GLI’s CEO Donna R. Cryer provided insights on proposals to change the name of NAFLD and NASH to eliminate the term “non-alcoholic” by noting that this debate did not start with patients nor did it respond to patient priorities. Following the official publication of changes despite patient concerns, GLI insists upon an impact analysis before implementing the nomenclature change to mitigate confusion among patients and clinicians and understand the associated costs to patient advocacy and regulatory approval alike.

A3: The Learning Experience 
Washington DC, September 30 – October 2, 2023 

If you are a liver patient, caregiver, family member, or clinician searching for an opportunity to become an effective advocate through interactive lessons on how to share your story, understand recent research & development, how to leverage social media and more.

✍🏼Apply now

Upcoming Events

• August: National Immunization Awareness Month

• September 30 – October 2: Advanced Advocacy Academy (A3): The Learning Experience