June 7, 2016 Dear Friends of the American Liver Foundation: 2016 is shaping up to be a crucial year in our campaign for liver wellness. All across the country, access to care and other issues related to liver disease are being addressed by patient advocates, legislators, and policy makers. Main stream media outlets are also beginning to spotlight the rising incidence of liver cancer; and researchers are exploring ways to improve liver health, developing new treatments and protocols, and publishing papers that are emphasizing the role that the liver can play in optimizing health outcomes. I am proud to say that the American Liver Foundation (ALF) continues to play an important and evolving role in the American public’s emerging awareness of liver health. In addition to working on the nation’s over-arching health care issues, ALF is breaking ground with new programming as we continue to increase awareness about liver health and build coalitions to fight the battle to eliminate liver disease. Our advocacy strategies, I am happy to say, are proving to be effective as we recruit and train even more patient advocates. I want to give credit for these efforts to our staff, affiliates, constituents, and Board. Your hard work and dedication continue to be crucial to our efforts, and every day I see the influence and effectiveness of our team growing throughout the nation. Let me begin by sharing a few examples of recent media stories in which ALF participated.

Liver Health in the News Until very recently, the liver was rarely featured in the news outside of celebrity illnesses related to liver failure or hepatitis C. Things are changing for the better, and ALF’s persistence and presence has played an important role in this transition. Now, rarely does a week go by without a mention of liver wellness or liver disease in the mainstream media. Many of the stories have been positive and hopeful.

Just this month, ALF was an information source for a recent ABC affiliate story on the rise in the number of living liver donors. You can read the article here. http://www.ksat.com/health/number-of-live-liver-donations-increasing.

In February, researchers studying the impact of coffee on the liver announced the results of their efforts to analyze data from nine previously published studies with a total of more than 430,000 participants. They found that drinking two additional cups of coffee a day was linked to a 44% lower risk of developing liver cirrhosis. You can learn more about the coffee study in this CNN story, in which ALF National Board Member Dr. Hillel Tobias commented on the study. CNN.com.

Other news has been more sobering. The Center for Disease Control and Prevention (CDC) announced a rise in hepatitis C cases connected to young people’s use of opioid drugs. As a result, ALF has worked hard to raise awareness about this issue.

Chairman’s Report

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You may be interested in a recent letter to the editor of The Hartford

Courant, in which ALF identifies hepatitis C as another health danger to heroin users which ran on February 12, 2016. The letter was in response to recent news coverage about the raging heroin epidemic in the state with 21 overdoses seen at one area hospital in one week. The Hartford Courant

We also worked with editors of Healthline, Lifescript, and Cure Magazine to help increase awareness about hepatitis c, liver cancer and other conditions.

Having been advocates of liver awareness for 40 years, ALF and the Board are excited that the information about the liver is finally starting to be newsworthy. I am proud that ALF’s media strategy is working, and I want to thank our constituents for proving that there is an audience for liver news. We hope that the media will continue to inform the public about this important organ. In the meantime, if you would like to stay current on liver issues, I encourage you to follow us on Facebook and Twitter. ALF‘s INTERNAL ACTIVITIES Although we have worked hard to influence the nation at large, we have also worked toward building our capacity, improving our programs, and addressing the needs of our core constituents. Toward this end, I want to take some time to discuss our core operations and the profound impact that we are having. Education Creating public awareness of liver issues lies at the core of ALF’s mission. Our goal is to provide education opportunities when and where our constituents need it. I want to acknowledge our program, national HelpLine, and media staff for increasing our reach and improving our ability to reach our constituents. Webinars In April, ALF held a webinar on Lysosomal acid lipase deficiency (LAL-D), a condition that can lead to a build-up of fatty material in a number of body organs including the liver, spleen, gut, as well as in the wall of blood vessels and other important organs. The presentation featured an expert overview from Dr. Barbara Burton and was moderated by Debra Entin, a health care consultant who has collaborated with ALF for many years. The webinar ended with a brief Q&A. We are pleased to announce that more than 200 people participated in this webinar.

Educational Materials We recently published an updated Hepatitis C brochure in English. Thanks to support from CVS Specialty, we will soon be printing a version of this pamphlet in Spanish, as well.

National Helpline – 1-800-GO-LIVER During the first four months of 2016, our Helpline responded to 4,513 inquiries. That is a 125% increase in activity compared the same period one year earlier. The addition of new points of contact – primarily chats and pan calls -- primarily drove the increase. The

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Helpline not only allows ALF to assist and provide resources to our constituents, it also serves as a check to gauge the public’s reception of our programs. Trainings In February, we began training a cohort of four PBC patients who will work with our national patient advisory committee (NPAC). The new NPAC members came to New York for intensive workshops to learn about PBC and liver issues, to receive updates on emerging opportunities that will address access to care, and to practice sharing their stories in order to personalize the disease.

Throughout this year, we plan to offer a wide range of programming that will continue to empower our constituents; inform policy makers, medical professionals and other stakeholders; and further develop a core of patient advocates.

Advocacy ALF is committed to ensuring that patients and caregivers have a voice in determining how our country manages and allocates resources to liver disease. Toward this end, we have invested heavily in training our constituents to function as patient advocates and to share their stories with both legislators and the public. Thanks to our devoted national staff and Division teams, every year this group of advocates grows and becomes more knowledgeable, media savvy, and formidable. We have completed two major milestones since the beginning of the year. We are wrapping up our Annual Awareness Day on Capitol Hill, and we launched a research project to improve our ability to develop resources for Hepatic Encephalopathy (HE) patients. Our most important advocacy project ALF’s Annual Awareness Day on Capitol Hill -- was held on April 19th. We brought 35 patients who are living with various liver diseases to advocate for those affected by liver disease, particularly viral hepatitis and liver cancer. As part of our advocacy activities, ALF held a Congressional briefing, joined by Nicole Smith, PhD, MPH, MPP, Associate Director for Policy at the CDC, who spoke about the status of viral hepatitis in the United States and the CDCs efforts to increase awareness, encourage testing and provide services for those in need. ALF’s patient advocates met with members of Congress to Capitol Hill to discuss the following legislative priorities:

Liver Disease Research – focusing on support for the National Institute of Health’s portfolio on viral hepatitis and other liver diseases and liver cancers; the continued backing of the Action Plan for Liver Disease Research in order to decrease the burden of liver and biliary diseases in the US; and research on hepatitis C and liver diseases to provide lifesaving treatment for veterans.

Public Health Awareness – centering on support for the Division of Viral Hepatitis at the Centers for Disease Control and Prevention and Health and Human Services (HHS), including backing for 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 and implementation of the recommendations for viral hepatitis testing and linkage to care by state Medicaid programs, Medicare, and private health systems and providers.

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Patient Access and Treatments – focusing on support for 1) The Patients’ Access to Treatments Act (H.R. 1600) which limits cost-sharing requirements applicable to certain specialty medications; 2) The Viral Hepatitis Testing Act (H.R. 1101/S. 1287) which promotes a program for viral hepatitis surveillance, education, and testing; and 3) the Expansion of Medicaid in states to low-income adults under health reform.

Following the Annual Awareness Day on Capitol Hill, HCV NPAC members stayed an extra day in DC for half-day training on State-level issues. This training is absolutely crucial as states consider removing limits on access to HCV medications. This year’s meeting has been incredibly successful, and I am confident that our HCV advocates will have a lot to report as they take the fight for liver wellness to their state capitals. I look forward to updating you on their work in the next Chairman’s letter.

ALF also launched a research project to better understand the Hepatic Encephalopathy (HE) patient journey. HE is one of the more difficult manifestations of liver disease to treat. It can leave patients confused about basic facts and often unable to help in their own diagnosis. One of the HE patients we interviewed explained the challenges that this disease poses:

I couldn't figure out what it was 'cause I had no knowledge of what HE actually was.... I got into my car [after work one day] and I happen to have my speaker phone and I called my mom like I do every night when I driving home and I'm just like "Hey ma, how you doing?" and then I'm going to pull out of the parking lot, I'm like "Mom, I don't know where I am" and she goes "What do you mean you don't know where I am?" I said, "I'm driving, I know I'm driving, I know that I'm going the way I'm supposed to but I don't know where I am." So she's like "Pull over." That's when they brought me to the hospital down at Yale-New Haven... I thought I was having another stroke but that's when they did the formal diagnosis of HE. -- Donald, 57, current patient

The element of patient confusion and the potential for misdiagnosis explains why our work with HE is so important. We are breaking new ground here -- this population has yet to be analyzed with the ultimate goal of creating effective programming that will fit the specific needs of HE patients. In March, we conducted information interviews and 3 focus groups with patients and caregivers. In April, we began an online survey to reach a wider audience of HE patients and care givers. We are learning a lot through this project, and we expect to use the information we gather to develop better educational materials and services for these patients. One key finding, thus far, is that medical providers often do not inform patients that HE may be an outcome of their liver disease. This information will help us develop clear communication plans that will help doctors, patients, and care givers thrive in spite of this disease. We look forward to sharing the knowledge that we are gaining. Because our efforts are giving patients an opportunity to weigh in on the development of the programs that will address their needs, we can envision a path to better services for patients suffering from this manifestation of liver disease. Community Outreach

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One of ALF’s primary goals is to build awareness of liver issues in communities throughout the country. We believe that as people learn about liver health and choose to get involved, we can build a social movement that will radically change the way that our country manages liver disease and other health care crises. Our regional divisions are doing a fantastic job of building our base of support in order to fulfill this mission. Since January, ALF affiliates have supported our mission by putting on fashion shows; organizing marathons, half-marathons, and other athletic events; sponsoring Life Walks; conducting webinars; and hosting ALF’s signature event – Flavors. They are building a sustainable presence in their communities, raising thousands of dollars for research, educating their peers, and convincing people that their involvement can make a difference. I want to thank all of our affiliates for their efforts, and I would like to call attention to two of the events that occurred so far this year. Ask the Experts Patient Education Program. On March 24th, the Heartland Division of ALF launched its first patient education program. A panel of experts addressed Liver Wellness, Hepatitis C, Cirrhosis, and Non-alcoholic Fatty Liver Disease (NAFLD). This free program served more than 60 patients affected by liver disease, liver transplant recipients, patient caregivers, and concerned individuals. Dr. Naim Alkhouri, MD of the Cleveland Clinic Digestive Disease Institute and Cleveland Clinic’s Children’s Hospital moderated the panel which included Mousab Tabbaa, MD, who covered Liver Wellness; Jamile Wakim-Fleming, MD, who covered Cirrhosis; Hicham Khallafi, MD who, discussed NAFLD, and Madeleine Murphy, CNP who reviewed Hepatitis C. More than 50 people attended the event. Having completed this inaugural event, we are confident that the Heartland Division will evolve to develop other innovative programs. The sponsors of the event included AbbVie, Alexion, Avella Specialty Pharmacy, Bristol-Myers Squibb, Pharmaceutical Research and Manufacturers of America, Pharmacy Specialty Group, University Hospitals Transplant Institute, and Walmart.

Healing with Style. I like it when our divisions are willing to think in creative ways that will expand ALF’s footprint. On April 9th the Greater LA division accomplished this objective by hosting a fashion show in which most of the models were liver transplant patients. The event was held at the Balboa Bay Resort in Newport Beach, and featured a silent auction, as well as Spring and Summer fashions from Chicos, Hugo Boss, Eileen Fischer, Charlotte Olympia, White House Black Market, and Catimini Paris.

These are only two of the examples of Division programming. For a broader view of what our affiliates are doing, please check out ALF’s website for upcoming events. We are heading into the second half of Spring – a time when our affiliates are most active with Flavors tasting events and Liver Life Walks. http://www.liverfoundation.org/upcomingevents Research Unlike most awards programs, ALF’s research awards recognize early career researchers who are entering into the world of liver research. I like to think that our research program

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is creating and supporting a robust pipeline of research that will ensure a bright future for our country’s ability to promote liver wellness. We are currently in the process of selecting the recipients of this year’s research awards. Our review committee met last month to begin the vetting and evaluation processes. We received many worthy applications, and announcements of the research winners will be made in June. In the meantime, I want to thank the Chairs of the Committee -- Drs. Rohit Loomba and Jasmohan Bajaj -- for their commitment, and I want to recognize our staff for supporting these efforts. Staff Changes At ALF, our team keeps getting stronger. Since January, we have hired new executive directors for three of our divisions, and one of the stalwarts on our staff assumed a new role within our organization. Our staff expansion began on January 4 with the hiring of Gail Favreau as our new Executive Director for the New England Division. Gail comes to ALF with significant non-profit and business experience; most recently at Boston’s Pine Street Inn where she was the Director of Special Events and Cause Marketing. On April 4, we welcomed Veronica Perez as ALF’s new Executive Director for the Greater New York Division. Veronica comes to us with seventeen years of experience in the non-profit sector, working in senior leadership roles where she was involved in managing and developing successful campaigns. Prior to joining us, Veronica was the Senior Director of Revenue Generation for the Leukemia & Lymphoma Society in New York; she provided the strategic vision that lead to a successful campaign raising $5 million dollars annually. Some of you may have met Veronica recently, as she was a presenter at our February 2016, ALF Leadership conference in New York, at which time, she presented the program “Sponsorship and Building Your Events.“ We are happy to have Veronica on our team, and we look forward to leveraging her expertise throughout our network. On April 18, Kathleen Flynn assumed the role of Executive Director for the Connecticut Division. Kathy comes to us with 25 years of in-depth experience in the corporate and not-for-profit sectors. Most recently, she was the Director of Donor Engagement at Yale Law School where she successfully led the stewardship and donor relations initiatives. Prior to her position at Yale, she was the Senior Director for Community Development at the Arthritis Foundation, NY Chapter. Last, I would like to announce that JoAnn Thompson has transitioned to a new role at ALF. Rather than doing double duty as the Director of Divisions and as the Executive Director for the Connecticut Division, JoAnn’s new role will center exclusively on providing leadership and guidance to ALF’s regional affiliates. She has been promoted to Senior Director of Divisions at ALF. JoAnn has been with ALF for 17 years. Anyone who has had the pleasure of working with JoAnn knows that

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she is a meticulous and bold leader who is not afraid of a challenge or realizing a vision. Conclusion I am very proud of the work that we are doing at ALF. From the 13,000 people who take part in ALF’s Liver Life walks, to the hundreds of patients who attend each of our webinars, to high participation rates in ALF’s new program initiatives, I can see the impact that the extended ALF family is having at the local, national, and federal levels. Keep up the great work!

Before I sign off, I would like to thank you for spending time to learn about and celebrate ALF’s accomplishments during the first quarter of 2016 and the evolving state of the liver awareness in the public conscience. I am looking forward to all the opportunities that the rest of the year will bring.

Sincerely,

Tom Nealon National Board Chair & Chief Executive Officer American Liver Foundation