In June, we celebrated International NASH Day and spent the month pushing for policymakers to address regulatory and legislative hurdles facing patient access to high-quality care. We worked to raise awareness that liver health improves when people are able to access preventive services, screenings and diagnostic tests that allow for early detection of disease; when our organ donation and procurement processes operate in a manner that supports both donors and recipients; and when hurdles are not placed in front of access to high-quality treatment for conditions such as NASH, viral hepatitis and obesity. We have so much more to do to support liver health and appreciate your consistent engagement and support in those efforts!
Global Liver Institute Weighs in on Legal and Regulatory Priorities Impacting Access to Care and Innovation
GLI joined the HIV+Hepatitis Policy Institute, along with 24 other HIV and hepatitis organizations, in filing an amicus brief in support of the U.S. government in Braidwood Management v. Becerra, the challenge to the ACA’s preventive services coverage requirement before the U.S Court of Appeals for the Fifth Circuit. The brief emphasizes the important role of testing for HIV and hepatitis to connect people to life-saving medications and, in the case of hepatitis C, curative treatment. People should be allowed to know if they have an infectious disease. Thankfully, the Fifth Circuit Court of Appeals granted a partial stay pending this appeal, protecting free preventive care for 150 million Americans as the case moves through the court.
GLI responded to the FDA Request for Input on the Voluntary Use of Patient Preference Information (PPI) in Regulatory Submissions. Patient perspectives are lacking in research and policy discussions, particularly related to the differences among patients that are under-represented in the data. We appreciate that the FDA is prioritizing efforts to address such challenges and promote innovations that meet patient needs. Learn more.
Global Liver Institute Supports Legislation to Bolster Access to High-Quality Care
GLI supports the Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act (H.R. 2407) / Medicare Multi-Cancer Early Detection Screening Coverage Act (S. 2085), joining a letter from 500+ organizations calling for its passage. These multi-cancer early detection (MCED) tests utilize advances in genomic science and computing power to, through a simple blood draw, find cancer before it spreads throughout the body. This legislation will ensure that Medicare beneficiaries, and their health care providers, have access to these transformative new early detection tests.
GLI supports the Saving Access to Laboratory Services Act, known as SALSA (H.R. 2377 and S. 1000), which is legislation ensuring coverage of screening and diagnostic tests performed by clinical laboratories that inform some of life’s most important health care decisions. GLI joined 36 other patient groups on a letter urging Congress to protect access to essential laboratory tests. Reach out to your legislators today to cosponsor this important legislation and avoid payment cuts for about 800 tests set for January 2024.
GLI still needs your help on robust support for H.R. 2544 to modernize and reform the U.S. Organ Procurement and Transplantation Network (OPTN). This bipartisan legislation responds to the urgent need for reforming the OPTN by breaking up the national monopoly contract so that the Health Resources Services Administration (HRSA) can run an open, competitive process and thus fixing this broken system. The bill succeeded in being voted affirmatively out of the Energy and Commerce Committee and is waiting for a final vote by the full House of Representatives. Reach out to your legislators today to support the bill!
GLI still needs your help to convince Congress to advance the Living Donor Protection Act (H.R. 2923). This bipartisan legislation was introduced to protect living organ donors and remove barriers to greater donation, and with your help, has garnered co-sponsorship from over 100 Members of Congress. The bill addresses tactics to deny or limit coverage by insurers, family and medical leave for donors, and public awareness. Contact your Member of Congress through the American Association of Kidney Patients Action Center.
GLI supports the Hepatitis C Elimination Program. GLI joined over 120 stakeholder organizations on a letter to Congressional leadership urging them to leverage the roadmap provided by the White House plan to eliminate hepatitis C to develop legislation to provide the resources needed to save the lives of the almost 2.4 million Americans living with this virus. The White House, led by former NIH Director Dr. Francis Collins, has made eliminating hepatitis C a top policy priority. The next step is for Congress to develop the legislative text to advance the new program providing increased access to hepatitis C treatments.
GLI joined the American Association of Gastroenterologists at a June 7, 2023 Obesity Day briefing for Congressional staff on improving access to obesity care and treatment, shedding light on the close connection between obesity and NASH. Representative Brad Wenstrup, DPM, R-OH, introduced the event with comments on how essential it is to treat obesity and to advance the Treat and Reduce Obesity Act (TROA), legislation that would expand Medicare coverage to include the screening and treatment of obesity provided by a wide range of health care specialists and would also cover FDA-approved medications for chronic weight management.
- July 28: World Hepatitis Day
- September 30 – October 2: Advanced Advocacy Academy (A3): The Learning Experience
A3 will be held in Washington DC from September 30 – October 2, 2023!
If you are a liver patient, caregiver, family member, or a 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.