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Home > December 2016 Nealon Statement

December 2016 Statement from CEO Tom Nealon

ALF CEO Tom Nealon talks about some of our organization's 2016 accomplishments


December 13, 2016
Dear Friends of the American Liver Foundation:

I wish to extend my greetings to all American Liver Foundation supporters, friends, and fellow representatives in the battle for liver wellness.

At ALF, the fight for liver health is renewing spirits and changing lives. In this our 40th anniversary year, our regional divisions are building momentum with new programming, revitalized leadership, and growing Medical Advisory Committees. At the same time, our national staff has launched a diverse platform of programs to pull people in and make more resources available.

Through these efforts, ALF continues to make significant progress in building a liver-healthy America.

ALF’s 40th Anniversary

To celebrate the 40th anniversary of ALF, we dared our constituents to accept an interesting digital challenge on behalf of the liver community. We launched a web page to invite our followers to become more visible in the liver wellness fight, with steps ranging from the simple gesture of framing an online picture with liver awareness branding to committing time and talent to becoming an ALF social media advocate.

We created the idea of the social media advocate, a virtual volunteer position, to tap into the enthusiasm of our online supporters, their connections, and their ability to spread the word about liver disease and ALF’s activities, events, and initiatives. This new program is in its nascent stage but, as of October 15, we had 62 internet mavens.

We are committed to training these volunteers. Among other responsibilities, our social media volunteers will:

  • Help direct people to ALF resources.
  • Tell their stories to journalists working on liver-related stories.
  • Moderate discussions in our liver support group.

I look forward to updating you on the evolution of the Social Media Advocates.

Research Update

Dr. Raymond Hickey, an ALF research award recipient, recently published results of his ALF- funded study in Science Translational Medicine. Dr. Hickey is part of a team that may change the course of liver disease. Treatments exist for metabolic conditions that are associated with chronic liver disease. But the only cure is a full liver transplant, and patients can wait years for those. Dr. Hickey wants better for them.

By transplanting healthy liver cells into the diseased liver of animals, Dr. Hickey is starting to see remarkable results -- new enzyme production. Success in humans would be a game-changer. Using a patient’s own cells to heal their liver means no immunosuppressive drugs and no side effects from those drugs.

Distinguished Scientific Achievement Award

Last month, I attended the American Association for the Study of Liver Disease’s (AASLD) annual meeting, along with several other ALF staff and Medical Advisory Committee Members. I cannot overstate how inspiring it was to speak, hear and learn from so many of the world’s leading liver doctors and researchers. ALF’s next Liver Lowdown (our e-newsletter) will highlight some of the ground-breaking research presented at the conference, including studies on liver cancer, nonalcoholic steatohepatitis, hepatitis and several rare diseases.

As a fitting close to the American Liver Foundation’s conference participation, we were delighted to honor Mount Sinai’s Dr. Scott Friedman, the Dean for Therapeutic Discovery and Chief of the Division of Liver Diseases at the Icahn School of Medicine. Dr. Friedman received ALF’s 2016 Distinguished Scientific Achievement Award at our annual honors reception. Please join me in congratulating him.

ALF at the Local Level

I want to dedicate most of this letter to acknowledging ALF’s truly amazing work at the community level. Our regional staff is combining grass roots organizing and community-based instruction with advocacy and professional education to create a higher benchmark for health care delivery. The divisions are firmly establishing ALF as the liver leaders in their communities, and I have no doubt that their work will revolutionize lives of liver patients and their families.

Division Medical Advisory Committees

Our Medical Advisory Committees (MAC) provide an important link between our regional divisions and local healthcare communities. MAC members offer guidance, fresh perspectives, and opportunities to think through emerging challenges within the field. In return, our MAC meetings offer professionals from different institutions the opportunity to gather, exchange ideas, and collaborate on joint programs for the benefit of those living with liver disease.

MAC activity throughout the country is a kind of bellwether to indicate the health of our organization. I am happy to report the revival of MAC meetings in San Francisco, San Diego, Dallas, Boston, Los Angeles and Orange County.

Patient Education

Our divisions are finding innovative ways to serve liver constituents by meeting people where they are, both emotionally and physically. In Philadelphia and Chicago, for examplewe are making cultural connections to provide education, stepping outside the traditional boundaries of institutional-based care, to meet the needs of underserved populations.

Philadelphia -- In July, the Philadelphia division piloted a cooking and nutrition program called Healthy Liver ~Healthy Life. To ensure that the program fit the cultural context of its targeted populations, the team worked with low-income African-American and Latina women to develop an effective curriculum for addressing issues of weight management and its importance in optimizing liver health. The team presented the program to 17 parents and children who attended the Weight Management program at A.I. DuPont Nemours Hospital for Children due to a diagnosis of NAFLD. It was also presented to 10 women and children at a shelter in West Philadelphia. The feedback from participants was positive. Parents and children both reported they felt they had the tools to make lifestyle changes that will improve their medical conditions and lead to healthier outcomes. The primary goal of patient education is empowerment. ALF’s Philadelphia team is demonstrating that with the right information, people will choose healthy liver lifestyles.

Chicago–Our Great Lakes Division is also leading groundbreaking efforts to bring HCV education and free screenings to underserved populations through friendly and unbiased personal interactions. Earlier this year, the team collaborated with two local organizations -- Making A Daily Effort and Brothers Health Collective -- to provide testing, education, and access to services for underserved members of the HCV patient population. The program specifically focuses on targeting those who are at the highest risk - Baby Boomers, veterans, African-Americans, and Individuals with HIV/AIDS – many of whom often lack the resources to seek regular medical treatment, or who may not be aware of the risk factors and the seriousness of the hepatitis C virus.

The Great Lakes Division and its partners are working together to provide education and screening opportunities through mobile clinics to places where underserved populations are known to gather -- community centers, popular street corners, fast food establishments, abandoned lots, and Veterans stand downs throughout the south and west sides of the City. The process is easy and convenient: screening can be completed in 20 minutes and participants who test positive are connected to care options immediately. As of September 2016, the program had served 5,570 people. Of those screened, 75 were HCV AB positive, 40 were RNA positive and 24 were connected to care. The program is on target to meet or exceed its goal of serving 10,000 by February 2017.[i]

Provider Education

We are pleased that our regional divisions are taking on – and excelling at – the challenge of educating health care providers around the country. The San Diego regional division’s Liver Wellness Conference, for example, is setting the standard in delivering state-of-the-art educational programming for professionals focused on liver health. On September 24, the San Diego team, in partnership with the AMN Healthcare Group, hosted a symposium to benefit RN's, MDs, and other healthcare providers. More than 96 people attended, with 9 sponsors supporting the event. The 11 topics covered during the meeting included Health and Liver Optimization (HALO), live donor organ transplants, and liver diseases, such as Alcoholic Hepatitis and Pediatric Nonalcoholic Steatohepatitis (NASH). The feedback that the San Diego office received demonstrated the impact that ALF is having on shaping the future of medical education. Word-of-mouth comments following the event were outstanding. Participants have already reached out to our staff to discuss ways of replicating the presentations to reach a larger audience.

Special Constituencies

As communities become more diverse, our regional and national offices have accepted the challenge to offer programming using a multi-lingual approach. This year, we had the opportunity to present live programming in both English and Spanish. On September 22, the Greater New York Division partnered with the Latino Commission on AIDS to present Ask The Experts: Hepatitis C/HIV Co-infection Seminar. Held at God’s Love We Deliver, the event attracted 36 participants, including patients/consumers, medical providers, and guests of attendees. The evening’s program centered around a presentation on Hep C/HIV co- infection and how it impacts the Hispanic/Latino community. Presenters emphasized the importance of linkage between care and social services in order to effectively treat illnesses and maintain the patients’ rates of participation. As a result of this event, ALF has been invited to help two agencies duplicate this program for their staff and patients.

In Memoriam

The best part of our organization is that we are able to bring passionate, dedicated people together to effect change. This summer, ALF lost a dear friend and visionary. Dr. Anthony Tavill, a pillar of Cleveland’s medical community for more than 40 years. He passed away July 21, 2016 at the age of 80. Dr. Tavill was professor emeritus of medicine at Case Western Reserve University and the recipient of prestigious honors and awards for his teaching and contributions to the study of liver disease and the clinical practice of hepatology. More than 10 years ago, Dr. Tavill worked with the Cleveland Division to establish the Anthony S. Tavill Citywide Liver Rounds, one of the nation’s premier platforms in peer-to-peer education in the field of hepatology. This program has become a staple of medical education in the Cleveland metropolitan area. Held 3-4 times a year, approximately 75-100 healthcare professionals attend each program to hear presentations and to discuss cases related to liver disease and transplant. We will miss him.

ALF Partnerships

If I had to cite the most important lesson that we have learned over the last 40 years, it would be that we cannot eradicate liver disease alone. Our partners have helped us expand our reach and amplify the impact that we are having around the country. Some of the recent partnerships that I would like to highlight include:

  • 􏰀On September 21, ALF co-hosted a Tweetchat with the Mayo Clinic in Jacksonville about liver wellness and nutrition. Roughly 140 tweets were posted with comments and questions ranging from diet recommendations for Autoimmune Hepatitis and the health benefits and perils of B-12 shots, to the potential impact of the Paleo diet on the liver.

  • 􏰀We teamed up with Bayer for the third year in a row to raise awareness of liver cancer and the potential risk factors for contracting the disease through the Are You at Risk? Campaign. The print component focused on New York, Chicago, Los Angeles and San Francisco and featured advertisements directing people to online resources where they can learn more about liver cancer, potential warning signs, and the importance of screening and regular visits to a physician. I also participated in a Satellite Media Tour on September 29th, alongside Ghassan Abou-Alfa, MD (of NYC’s Memorial Sloan-Kettering Cancer Center). We conducted 24 interviews in markets around the country, offering updates on liver disease risks and fundamental liver health information. As of November 14th, the Tour had featured 290 airings with TV and radio reporters, extending to a nationwide audience of over 3.4 million. Cities reached included: New York, Baltimore, Chicago, Philadelphia, Washington, DC, Tampa, Houston, Seattle, Minneapolis-St. Paul, Sacramento, St. Louis, Portland, Raleigh-Durham, Los Angeles, San Francisco, Boston, Atlanta, Phoenix, Charlotte, Denver, Cleveland, Orlando, Pittsburgh, Miami, and Dallas- Fort Worth.

  • 􏰀We are making every effort to improve access to liver care and to close the gap between well-served and underserved populations. We recently launched a partnership with the Hughes Healthcare Disparities Group to discuss HCV outreach in communities of color.

Conclusion

I appreciate that you took time to read this letter. I find it hard to limit these missives, because the work that we are doing is so important. Your participation and interest in what is happening at ALF motivates us to press on each day. I thank our wonderful staff and Board for their efforts. The day may come when we can celebrate 100% cure rates for liver disease, but until that time, we still have a lot of hard work to do.

Sincerely,
Tom Nealon, National Board Chair & Chief Executive Officer

Page updated: December 23rd, 2016

 

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