The American Liver Foundation Advocacy
The American Liver Foundation is a not for profit organization that serves as a trusted voice for individuals living with liver disease. Its mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure for liver disease.
The American Liver Foundation takes a leadership role in advocating on behalf of the millions of Americans living with liver disease and their families.
- American Liver Foundation testifies before Congress and state legislatures on important issues related to liver disease to help effect change in public health policy.
- We actively lobby Congress and state legislatures for legislation to support increases in organ donations.
- We have been a moving force behind the acceptance of an agreement on a comprehensive “Research Agenda” for liver disease.
- The Foundation’s “Annual Day on the Hill” engages staff and volunteers in a full day of lobbying for legislation on critical issues including increased funding for research, public health education and organ donor awareness.
- The Foundation participates in numerous coalitions and works in partnership with other organizations to support public policy and funding into research, education and advocacy for liver disease and wellness initiatives.
- American Liver Foundation has been active in obtaining cosponsors for the Liver Research Enhancement Act (HR1743) to create a center within the National Institutes for Health that will focus solely on research into liver-related diseases.
In total, over 30 million Americans have some form of liver disease. Over 5.5 million people are living with chronic liver disease or cirrhosis, and approximately 20-30% of adults and 3-10% of children have non-alcoholic fatty liver disease (NAFLD), which can lead to a more serious liver disease called non-alcoholic steatohepatitis (NASH). Unnervingly, approximately 4.4 million Americans are living with Hepatitis B or C and many of these individuals do not know they are infected. With the prevalence of liver disease in the U.S. alarmingly increasing, we need to work together to take action now!
ALF's 2018 Legislative
Research on Liver
- $2 billion increase over FY 2017
for the National Institutes of Health (NIH) and a proportionate increase for
the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in
FY18 which will
support the NIH portfolio on viral hepatitis and other liver diseases and liver
cancers within NIDDK’s liver disease research branch
- $664.7 million for the Department
of Veteran’s Affairs Medical & Prosthetics Research Program in FY18, which funds research on
hepatitis C and liver diseases to provide lifesaving treatment for veterans
suffering from hepatitis B and hepatitis C
- Advance the Department of
Defense (DOD) Peer Reviewed Cancer Research Program and DOD Peer Reviewed
Medical Research Program, which
fund research on liver cancer and hepatitis B. ALF supports expanding this
research to encompass viral hepatitis C
Patient Access and
- $2.85 billion for the Food and
Drug Administration (FDA) in FY18 which expedites development of new, crucial treatments and therapies for Hepatitis C and other
liver diseases and is critical to addressing drug shortages
of the Patients’ Access to Treatments Act that limits cost sharing
requirements for specialty drugs
- Support the Expansion of
states to low-income adults under health reform. Insurance coverage rates have
improved, hospitals are treating fewer uninsured patients, and the amount of
uncompensated care is declining steeply in states that have expanded Medicaid
- Repeal of the Independent
Payment Advisory Board (IPAB)- The board is tasked with coming up
with Medicare cuts if spending rises above a certain threshold, but has been
criticized as outsourcing the work of Congress to unelected bureaucrats
- $7.8 billion for the Centers for
Disease Control and Prevention (CDC) in FY 18
million for the Division of Viral Hepatitis (DVH)
of The Viral Hepatitis Testing Act – The bill supports a program for viral hepatitis surveillance, education, and testing in
order to prevent deaths from chronic liver disease and liver cancer. The bill also encourages the
CDC to implement hepatitis-screening guidelines. It also authorizes Congress to
appropriate additional funds for hepatitis-screening activities
- Implementation of the updates to
the Viral Hepatitis Action Plan which has established a goal of
increasing the proportion of persons who are aware of their hepatitis infection
to 66 percent for both Hepatitis B and C. Full implementation of the recommendations
for viral hepatitis testing and linkage to care by state Medicaid programs,
Medicare, and private health systems and providers are also needed.
- Re-introduction of the Organ Donation Awareness and Promotion
Act – This bill
amends the Public Health Service Act to authorize the appropriation of
specified amounts for FY2015-FY2019 for: the Organ Donation Public Awareness Program;
studies and demonstration projects to increase organ donation and recovery rates; grants to
assist states in carrying out organ donor awareness, public education, and
outreach activities and programs designed to increase the number of organ donors within the state; and support for the
development and dissemination of educational materials to inform health care
and other appropriate professionals in issues surrounding organ donation.
1/10/2017 - Oppose the repeal of the Affordable Care Act without Congress implementing replacement legistlation to ensure affordable health care coverage.
is currently debating significant changes to the healthcare system, including
modifications that will impact private insurance expenses and accessibility.
This debate has the potential to create many negative outcomes for individuals
and families affected by chronic or costly medical conditions. If federal
patient protections are ultimately removed or weakened, then many patients
could be exposed to increased costs, medical bankruptcy, and lack of access to
needed care or therapies. Lawmakers
need to understand that the following “four pillars” are absolutely essential
to patients and their families, and must be included in any relevant proposals
- Pillar 1: Prohibit pre-existing
condition discrimination. Individuals
must be able to equitably access comprehensive healthcare coverage regardless
of their health status, diagnosis, and related factors.
- Pillar 2: Prohibit lifetime and
annual caps on insurance benefits. Any
individual that purchases healthcare coverage must not be able to outspend that
coverage and expose themselves to additional, unaffordable fees.
- Pillar 3: Allow children to stay
on family coverage until they are 26. Families
with affected members face unique and serious financial challenges and
prolonged stability is essential.
- Pillar 4: Limit out-of-pocket
costs for patients. Enacting
and preserving no- nonsense restrictions that cap out-of-pocket costs is the
best way to keep coverage equitable and accessible to all.
of Congress need to understand that their constituents expect them to maintain
and strengthen patient protections in the healthcare system. The best way to
educate your two Senators and your House Representative about your needs and
earn their support for patient protections is to connect with their offices and
make your voice heard.
Click here to send a message to your members of Congress!
ALF's Position Statements: