American Liver Foundation (ALF)

PUBLIC AND PATIENT EDUCATION: In 2021, the American Liver Foundation completed a NASH Screening Pilot Project in Houston, Texas to provide NASH Screening to at-risk individuals in a diabetes clinic. The center screened over 450 individuals for NASH. This pilot project was then replicated in 9 additional states in 2022 through Think Liver Think Life, the American Liver Foundation's public health campaign. Think Liver Think Life, ALF's national public health campaign, aims to ensure every American understands their risk for liver disease, receives the appropriate diagnostic testing and care coordination and feels well-informed and supported throughout their liver journey. We are planning a nationwide expansion, adding ten new states annually. We anticipate that by 2026, when ALF celebrates its 50th anniversary, Think Liver ThinkLife will be active in all 50 states. To undertake this broad initiative, ALF has developed partnerships and collaborations with key stakeholders, Federally Qualified Health Centers, health departments, diverse faith-based and community groups, and other voluntary health organizations. The American Liver Foundation's digital content allows us to reach millions of people with our information and resource. The ALF website helps us better deliver quality programs and events to our constituents including multimedia webinars, videos and broadcasts. In 2022, ALF did a complete update to our website for a more user-friendly interface including updates to our liver disease pages, patient stories, and resource center. We have added a section on health and wellness and a hepatitis D webpage and new pediatric liver disease information center. ALF held webinars on a variety of topics including clinical trials, liver cancer, diet and nutrition, and acute and sudden liver failure. We created a virtual monthly forum for Biliary Atresia (BA) patients and their families to discuss topics that specifically affect BA Families. For the first time in history, The American Liver Foundation and the American Diabetes Association held a joint program on the connection between NASH and Type-2 Diabetes. ALF held a Rare Disease Summit that brought together rare liver disease stakeholders- patients, caregivers, hepatologists, primary care providers, patient advocacy organization personnel, and industry representatives - for a 2-day virtual Roundtable to identify solutions for improving the health outcomes of individuals with rare liver diseases. This meeting focused on tackling issues in rare disease including misdiagnosis, genetic testing, reducing the patient burden and telemedicine. From this roundtable, we were able to create an Executive Summary and Rare Disease Patient Bill of Rights. Liver Health Today, previously titled the Liver Lowdown, is ALF's e-newsletter is disseminated to provide information about the prevention, treatment and cure of liver disease and about the Foundation's educational and signature programs, an in-depth focus on specific types of liver disease, and profiles of liver patientscaregivers' personal experiences. In 2021, over 215,000 people received each of our e-newsletter issues. ALF held the 3rd annual HCC virtual patient conference in 2022. This conference provided educational sessions and resources for HCC patients and caregivers that are not eligible for a transplant on topics pertaining to patient care, treatment options, emotional wellness in the face of a liver cancer diagnosis, and caregiver resources. Over 200 people attended this event. During the AASLD Liver Meeting, ALF held a community conversation conference session that was attended by patients, physicians, and other organizations. ALF Staff discussed our newest Public Health Initiative, Think Liver Think Life. The American Liver Foundation co-hosted an educational program with the National Coalition of 100 Black Women, Inc- PA Chapter on May 19th. The focus of the program was hepatitis and liver cancer.

COMMUNITY SERVICE: ALF conducts advocacy work on behalf of the patient community throughout the year, actively raising awareness of pertinent legislation affecting the liver community among the federal government. The American Liver Foundation has 2,100 constituents signed up on our advocacy platform and we regularly share action alerts and important issues for liver patients. Advocates sent 1200 letters to Congress in 2022. After a virtual training in July, ALF Advocates from across the country met with their federal lawmakers and staff during the August recess to inform them about liver disease and urge them to support our legislative priorities. More than 65 advocates from 18 states shared their stories as patients, caregivers, family, and medical professionals during 42 virtual and in-person meetings with staff and Members of Congress. Of those meetings, 4 included the Member of Congress and 8 occurred in-person in the district. Meetings were evenly split between the House and Senate. Advocates asked that Members support the following legislation Living Donor Protection Act (S. 377/H.R. 1255), the Safe Step Act (S. 464/H.R. 2163), the LIVER Act (S. 3041/H.R. 5675), and the HELP Copays Act (H.R. 5801) plus funding requests for NIH, ARPA-H, CDC, and HRSA. The National Public Policy Committee was created in 2022 that includes medical professionals and liver disease patients. The committee is responsible for determining legislative priorities for ALF.

PATIENT SUPPORT: The American Liver Foundation's Helpline information specialists are available to answer questions about liver disease and liver wellness, including risk factors, prevention, symptoms, early detection, diagnosis, and treatment options. ALF can direct callers to local services in their area, help them learn about clinical trials and help them find a physician. Interpretation services are available for non-English speakers. The toll free national Helpline received nearly 3,700 requests for information from patients and caregivers through calls, online chats, email and snail mail. We also host a vibrant online community across numerous social media platforms and one website. The American Liver Foundation's Primary Biliary Cholangitis Facebook Support Group currently has over 3,400 members from 2,800 members in 2020 and is our first and largest Facebook Support Community. The NASH Facebook Support Group, a support community for those affected by Nonalcoholic Steatohepatitis (NASH) has grown significantly since its inception in 2018. The group currently has over 3,600 members from 522 members in 2018. This group is open to anyone connected to NASH around the country and serves as a space to feel less alone and seek answers to questions they may have about their journey. Our two newest Facebook Support Groups, Living with Liver Cancer and Life with Biliary Atresia and Beyond have 280 and 420 members respectively. Each of these Facebook Support Groups provides current disease information, nutrition advice, suggestions for everyday living and ongoing support. Every week, the moderators hold a Facebook Chat to encourage dialogue between members. Active moderation and Facebook Chats keep the group engaged and create "buzz" for the group that results in new members joining via word of mouth. Additionally, the Foundation facilities Inspire, a liver disease support group and discussion community where people can find support among others who are experiencing symptoms, complications, and navigating therapies for liver disease. Topics include pediatric liver disease, liver cancer, autoimmune liver disease, viral hepatitis, fatty liver, liver transplantation, and more. We have over 40,000 members in this group. In collaboration with the Hepatitis B Foundation, ALF held a Hepatitis D Roundtable on April 21st and 22nd, 2022. This Roundtable will include 12 physicians, harm-reduction specialists and patients who provided their expertise on barriers to Hepatitis D diagnosis and treatment. Using findings from this roundtable, we have created a whitepaper that will be published in AASLD's Hepatology Communications Journal.

Research and professional education