2025 Legislative Priorities

119th Congress

Innovation and Research for Liver Disease

We urge Congress to maintain strong support for appropriations to support liver disease research in FY 2026 to raise awareness about the growing threat of liver disease, the need for prevention and treatment options, and to inform helpful policy solutions. Specifically, we would request the following:

• Expand appropriations for the Agency for Healthcare Research and Quality (AHRQ) at the Department of Health and Human Services to allow the Agency to conduct the Nonalcoholic Fatty Liver Disease (NAFLD) Study requested by Congress in accompanying report language to the FY 24 Labor/HHS/Education appropriations bill. This study directs AHRQ to evaluate the prevalence, diagnoses, treatments, and complications associated with NAFLD. (NAFLD is now known as Metabolic Dysfunction-Associated Steatotic Liver Disease or MASLD)
• Dedicate funding for the education, awareness, surveillance, and screening of metabolic dysfunction-associated steatotic liver disease (MASLD) within the Centers for Disease Control and Prevention (CDC) National Center for Chronic Disease Prevention and Health Promotion. Without treatment, MASLD can lead to its more deadly form, metabolic dysfunction-associated steatohepatitis (MASH), which causes liver failure and liver cancer. Public awareness of MASLD paired with routine screening for at risk populations will be critical to identifying MASLD early on. Additional surveillance of MASLD will help to identify trends and any research gaps.
• Expand appropriations for the Centers for Disease Control and Prevention to convene a consensus conference to create and conduct a formal Public Health Liver Disease Action Plan for the prevention and control of liver disease. Based on the scope of this work and the number of people affected by liver disease in the United States, $4,500,000 is requested to undertake this initiative.
• Increase baseline funding for liver disease research at the National Institutes of Health (NIH) through Centers such as the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), National Institute on Minority Health Disparities (NIMHD), and the National Cancer Institute (NCI).

Coverage

Urge the Administration to finalize CMS’ proposed rule to provide Part D coverage of anti-obesity medications. Obesity is one of the leading risk factors for MASLD. Expanding access to anti-obesity medications can address the root cause of this disease, improve patient outcomes, and reduce long-term healthcare costs. 

Co-Sponsorship Opportunities

Transplant

Living Donor Protection Act - This legislation prevents certain insurers from discriminating against living organ donors when obtaining or changing their coverage. Specifically, carriers may not deny, cancel, or otherwise impose conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual's status as a living organ donor. The bill also expressly specifies that recovery from organ-donation surgery constitutes a serious health condition that entitles eligible employees to job-protected medical leave. In addition, the Department of Health and Human Services (HHS) is also mandated to enhance educational materials about the benefits of and insurance options for living organ donors.

Honor Our Living Donors Act (H.R. 628)- This legislation will update existing policies by the National Living Donor Assistance Center (NLDAC) to ensure that living donors are reimbursed for their expenses without consideration of the recipient’s income. This includes covering lost wages and travel expenses associated with the donation process.

Cost & Access to Therapeutic Treatments

Safe Step Act - This bill mandates that group health plans must allow exceptions to their step-therapy protocols for medication under certain conditions. Exceptions must be granted if the required treatment proves ineffective, poses a risk of adverse reactions, delays necessary effective treatment, hinders daily functions, or if the patient is stable on their current medication. The bill also requires health plans to establish and communicate a clear, accessible process for patients to request these exceptions, detailing the necessary information and criteria.

HELP Copays Act - This legislation requires that health insurance plans count payments made by or on behalf of enrollees, including third-party payments, financial assistance, discounts, vouchers, and other out-of-pocket expenses reductions, toward the plan’s cost-sharing requirements.

Last updated on March 21st, 2025 at 01:26 pm