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 2027 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:

• Expanding federal support for liver health—particularly the National Cancer Institute and liver cancer initiatives—is critical. Chronic Hepatitis B is a leading cause of liver cancer, which has a 5year survival rate of only 22%, is the third most common cause of cancer death in the U.S., and continues to see rising mortality. Federal agencies, including the National Cancer Institute, should expand Program Projects, Cooperative Research, Broad Agency Announcements, and other contract mechanisms to accelerate innovative approaches to liver cancer risk stratification and early detection, including new biomarkers, advanced imaging with AI, and predictive algorithms.
• 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) and 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 (CDC) 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).

Co-Sponsorship Opportunities

Transplant

• Living Donor Protection Act (H.R.4583) (S.1552) - 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.
• The Expanding Support for Living Donors Act (H.R 7686.) - This legislation would remove financial barriers that prevent many people from donating life-saving organs. Due to high out of pocket costs becoming a living organ donor can be challenging for those who would like to donate. Travel expenses, childcare, and lost wages from missing work are all major costs that donors can incur in the living donation process. The existing federal donor reimbursement program only provides up to $6,000 for donation related expenses, which is often not enough, and income restrictions disqualify many people from accessing these benefits. The Expanding Support for Living Donors Act would reauthorize the Living Organ Donation Reimbursement Program, increase the maximum reimbursement amount to $10,000 (to account for inflation), double the income eligibility to about $100,000 a year, and make reimbursement eligibility based on the donor’s income instead of the recipient.

Cost & Access to Therapeutic Treatments

• Treat and Reduce Obesity Act (H.R.4231) (S.1973) - This legislation will broaden Medicare coverage to include intensive behavioral therapy (IBT) for obesity, as well as Part D coverage to include antiobesity medications (AOMs). It will also allow for medications to be delivered by a diverse range of healthcare providers beyond primary care physicians. Specialists, physician assistants, nurse practitioners, and approved counseling programs can now provide therapy, provided it is coordinated with a referring physician. This legislation is crucial for liver health as obesity is a key factor in developing liver diseases like metabolic dysfunction associated steatotic liver disease (MASLD) and its more severe form, metabolic dysfunction associated steatohepatitis (MASH), which has become a leading cause of liver transplant in recent years.
• Safe Step Act (H.R.5509) (S.2903) - 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 (H.R.6423) (S. 864) -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.
• Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act (H.R. 5355) - This legislation directs the Government Accountability Office (GAO) to study efforts to improve early detection and treatment of pediatric liver tumors, trends in pediatric liver-transplant wait-list mortality, and the cost effectiveness of adding simple tools. It also establishes a national education initiative led by Health Resources and Services Administration (HRSA), in conjunction with the Centers for Disease Control (CDC), to provide families plain-language information on early warning signs and the option and safety of living liver donation.

Last updated on April 1st, 2026 at 04:48 pm