At You Matter Patient Advocacy Group, we believe improving liver health requires more than supporting individual patients—it also requires strengthening the systems and policies that shape access to liver disease care. Many people living with MASLD, MASH, and fatty liver disease face barriers such as delayed diagnosis, limited awareness among providers, difficulty accessing hepatology specialists, and gaps in coordinated care. Addressing these challenges requires advocacy at the policy and systems level.
Our Policy & Systems Advocacy work focuses on identifying these barriers and advocating for solutions that improve early detection, equitable access to care, and patient-centered liver health services. We collaborate with patient advocates, healthcare professionals, liver disease organizations, and community partners to ensure that real patient experiences help shape healthcare policies and priorities.
This work includes engaging with lawmakers, participating in policy discussions, providing patient perspectives to healthcare stakeholders, and advocating for policies that improve prevention, screening, treatment access, and research for MASLD and MASH. Our efforts extend to state and national advocacy, including engagement on Capitol Hill, where we help bring the voices of people living with liver disease directly to policymakers who influence healthcare legislation and public health initiatives.
Through these efforts, we aim to strengthen policies that support earlier diagnosis, improved access to hepatology care, increased liver disease awareness, and better coordination across healthcare systems. By combining lived experience with informed advocacy, You Matter Patient Advocacy Group works to ensure that healthcare policies reflect the real needs of individuals and families navigating liver disease.
Legislative Priorities
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.
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.
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.
HCV Elimination & Treatment Access: The Cure Hepatitis C Act of 2025 aims to establish a national program utilizing a voluntary drug subscription model to increase access to treatments, especially for Medicaid and correctional populations
Liver Disease Research & Screening: The LIVER Act of 2024 (reintroduced) focuses on studying, preventing, and treating liver cancer. Further, H.R. 5355 seeks to promote newborn screenings for liver diseases.
The Medical Nutrition Equity Act (often introduced alongside the Medical Foods and Formulas Access Act) is bipartisan legislation aimed at requiring public and private insurance—including Medicare, Medicaid, and CHIP—to cover medically necessary foods, formulas, and vitamins for individuals with specific digestive and inherited metabolic disorders. It aims to prevent severe disabilities, hospitalizations, and mortality by ensuring access to prescribed nutritional care. Separate initiatives, such as the Medical Nutrition Therapy Act of 2025 (H.R. 6199), have been introduced to specifically expand Medicare Part B coverage for registered dietitian services for diseases like diabetes, obesity, and cancer.