Join Global Liver Institute to Push Congress to Advance Priority Bills and Support Agency Efforts.
The six-bill spending package unveiled by Congress on March 3, 2024, contains a narrow list of health measures, including a partial reduction in Medicare’s physician pay cut and increased funding for community health centers . Appropriations for agency health programs were continued through March 22, 2024, with more details expected soon for a longer-term spending bill. GLI continues to support funding levels reflected in the Senate version of appropriations bills, providing modest increases to key healthcare programs and activities. Please join us by reaching out to your legislators through our easy-to-use form!
GLI Comments on Access to the Liver Transplant System for Native Americans
The Washington Post recently reported that , Native Americans are far less likely to make the liver transplant list than Whites despite being more likely to die of liver disease. In the article, GLI’s founder and CEO, Donna Cryer, JD, said that inequity begins long before a transplant becomes necessary. Patients without access to regular primary care may not be screened for liver disease. The disease is often treated by gastroenterologists or hepatologists, who in turn make referrals to transplant centers when a patient’s illness becomes life-threatening. “We see a lot of patients drop off” at the specialist stage, Cryer said. “The incentives on finding more people are not there.”
GLI Supports the Charlotte Woodward Organ Transplant Discrimination Prevention Act
The Charlotte Woodward Organ Transplant Discrimination Prevention Act would prohibit discrimination against people with disabilities in the organ transplant system. It prohibits covered entities from determining that an individual is ineligible to receive a transplant, denying an organ transplant or related service, refusing to refer the individual to an organ transplant center, or refusing to place an individual on a waiting list based solely on the fact that the individual has a disability. It also recognizes the importance of auxiliary aids and services, the ability of an individual’s support network to help with post-operative care, and the need for reasonable modifications to policies and procedures to make organ transplant systems and facilities more accessible to people with disabilities. It was heard in the House Energy and Commerce Committee on February 14, 2024, and will hopefully be marked up by the committee soon as it advances toward a full House vote. Learn more here.
GLI Joins Patients & Providers for Medical Nutrition Equity and the Digestive Diseases National Coalition in Hill Advocacy
GLI staff joined advocates convened by the Patients & Providers for Medical Nutrition Equity and the Digestive Diseases National Coalition in Hill Advocacy. GLI strongly supports the Medical Nutrition Equity Act, the Safe Step Act, and the HELP Copays Act, bringing forward to Capitol Hill the experiences of liver disease and liver cancer patients to discussions about nutrition and insurer practices that impose barriers to patient care.
GLI Celebrates Rare Disease Week
GLI joined rare disease advocates in Washington, DC, in their work to highlight the unique needs of rare disease patients. The White House Forum on Rare Disease included the voices of rare disease patients, highlighting the challenges they face related to coverage denials, particularly for treating rare diseases with no indicated treatments that are managed on other existing treatments. The lack of a code for so many rare diseases presents another significant barrier to care and coverage. Policies encouraging repurposing of existing drugs was a stated goal of many advocates participating in the forum, as well as support for the FDA’s accelerated approval pathway.
Additionally, the Energy and Commerce Committee held a hearing on a series of bills that would improve access to care for children with rare diseases and improve investment in treatments for rare diseases. Rare disease advocate Khrystal Davis testified on behalf of patients in support of investment in innovation, support for policies allowing housing and transportation to be covered by patient assistance programs and support for “must-do” legislation banning the use of quality-adjusted life years and similar measures across federal programs. GLI representatives participated in associated Rare Disease Week Hill meetings organized through the EveryLife Foundation, emphasizing the need for passage of the Medical Nutrition Equity Act to further support patients with rare diseases.
World Obesity Day
On World Obesity Day, Global Liver Institute supported Rep. Sheila Cherfilus-McCormick and Rep. Gwen Moore’s House Resolution 1047 “Recognizing Urgent Need to Prevent and Treat Obesity as a Disease.” Individuals with obesity are at significant risk for liver disease, particularly fatty liver disease, which is a significant cause of liver cancer, liver cirrhosis and liver failure. GLI recognizes the critical need for better education, screening, and treatment for the connection between obesity and liver disease. H.Res.1047 is an important step in building awareness of obesity as a disease and the need for addressing related chronic and progressive liver disease.
Multi-Cancer Early Detection Tests Receive National Attention
The Wall Street Journal published an article highlighting new multi-cancer early detection tests, their efficacy rates, their use to diagnose cancer early, and that they are not typically covered by insurers. GLI strongly supports the Medicare Multi-Cancer Early Detection Screening Coverage Act which would allow for coverage of these simple blood-draw tests. We know that patients diagnosed with liver cancer that is localized and confined to the primary site have a 37.3% survival rate versus 3.5% for patients diagnosed after the cancer has metastasized. Finding liver cancer early is essential to achieving the goals of the Cancer Moonshot.
Reliance on Artificial Intelligence or Algorithmic Software to Guide Coverage Decisions Under Fire on Capitol Hill
In October 2023, President Joe Biden signed an executive order to establish AI standards. On November 3, 2023, over 30 Members of the House of Representatives sent a letter to the U.S. Department of Health and Human Services calling for increased oversight of Medicare Advantage plans relying on AI algorithms for prior authorization and coverage decisions. On February 6, 2024, a CMS fact sheet provided added clarification to Medicare Advantage Organizations and Medicare-Medicaid Plans stating, “An algorithm or software tool can be used to assist MA plans in making coverage determinations, but it is the responsibility of the MA organization to ensure that the algorithm or artificial intelligence complies with all applicable rules for how coverage determinations by MA organizations are made.” On March 1, 2024, several members of Congress followed that letter with a request to the Government Accountability Office requesting a study focusing on how artificial intelligence is used to review medical claims during the prior authorization process within federal health insurance programs. GLI shares Congressional concerns about machines playing the role of doctor and looks forward to supporting policy efforts to improve access to care for liver disease patients.
