May 22, 2014
Dear Friends of the American Liver Foundation:
I am pleased to announce that this is the first edition of what will be a bi-monthly Chairman’s Report covering significant issues and developments affecting the American Liver Foundation. I hope that you enjoy this regular communication. I welcome your comments.
It is an exciting time at the American Liver Foundation. We hit the ground running in 2014 and I am pleased to report that a great deal of progress has been made toward advancing ALF’s mission of serving liver disease patients and their families. Our programs continue to reach and help thousands of Americans who are living with liver disease, as well as their families, friends and those at risk.
We have ramped up our communications activities, engaging patient advocates and physicians to share their experiences and expertise. Because of their efforts, particularly the advocates’ openness and frankness about living with hepatitis C, they have helped lift the stigma, offering hope to thousands of others living with liver disease.
Under the leadership of Lynn Gardiner Seim, MSN, RN, our Vice President of Programs, we have great expectations in the area of development. At the same time, our advocacy efforts and programs have enhanced ALF’s presence on the national level.
Below I have listed some highlights:
Liver Lowdown Monthly Newsletter
- Redesigned to include regular features on important liver disease health topics and issues, including: patient profiles; calendar of events; happenings; recipes; and an in the news column.
- Distributed to more than 60,000 people monthly. Our metrics indicate a higher than average read rate as evidenced by the number of people who open the links.
- Working with physicians on our Medical Advisory Committees, both national and local, ALF has secured media attention in/on: The New York Times, Reuters, CNN and NPR’s Morning Edition, which is the most listened-to news radio program in the country.
- We have also gained a strong presence in local media markets in areas represented by our Divisions.
Corporate Alliance Development
- ALF has met and continues to meet with several companies with a product portfolio that can help treat many liver diseases, including hepatitis C and fatty liver disease. These include Gilead Sciences, Onyx Pharmaceuticals, AbbVie, Salix Pharmaceuticals, Intercept Pharmaceuticals, Inc., Eli Lilly and Company, and AcariaHealth.
- Salix is the 2014 National Gold Corporate Sponsor for Flavors and a sponsor of this year’s Greater New York Honors Gala and the San Francisco Gala. Bristol- Myers Squibb is also providing national funding for Flavors events in 2014
- Notifications are in progress for the winners of the 2014 Research Awards Program, which includes one Liver Scholar and ten Postdoctoral Research Fellowship awards. In total, 11 scientists representing seven medical and research institutions were awarded $350,000 to support their research in the areas of hepatitis B, hepatitis C, liver cancer, hepatic encephalopathy (HE), biliary atresia, non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH). We are very pleased that we are able to continue to fund these critically important research initiatives.
- Hill Day - On March 26th, patient advocates and ALF staff converged on Washington to urge legislators to make liver disease research a funding priority. Patient advocates participated in support of Americans living with HE, hepatitis B, hepatitis C, biliary atresia, transplants and primary sclerosing cholangitis. The event was part of the Seventh Annual Liver Capitol Hill Day sponsored by the American Association for the Study of Liver Diseases.
- U.S. Preventative Services Task Force Draft Recommendations for Hepatitis B Screening – ALF provided the USPSTF with key information about hepatitis B and advised on critical screening guidelines that should be included in their final recommendations.
- Webinar - ALF will host Hepatitis C: Treatment Options and the Patient Experience on May 28th. The program features a liver specialist, a nurse, and two patient advocates who will share their experiences about living with the disease. This program was created with support from Merck & Co., Inc.
- Our hepc123.org website continues to attract more visitors – an average of 7,000 per month.
- Webinars – Two have been held this year, HE: The Patient Perspective and Diagnosing and Treating HE: A Physician’s Perspective. The first featured two patient advocates: one living with HE and another who had a liver transplant as a result of fatty liver disease, as well as a liver transplant specialist. The second webinar featured a leading gastroenterologist and liver specialist who discussed the condition and answered webinar participants’ questions. This program was created with support from Salix.
- Our he123.org website averages nearly 4,500 visits each month.
National HelpLine - In addition to the dedicated websites for hepatitis C and HE, our 1- 800-GO-LIVER National HelpLine provides the public with a wealth of information about these and several other liver diseases.
Mission Video - ALF now has a video about who we are, what we do and how we are making an impact in the fight to end liver disease. Our divisions can use this as part of their special events and communications activities, including Flavors, awards dinners and social media promotion. It also airs on the ALF YouTube channel www.youtube.com/americanliver.
PSA - We also produced a public service announcement, which aired in conjunction with the NASCAR Daytona 500 race held in February. It will also air in conjunction with the Indy 500 race on May 23rd. You can view it on our YouTube channel.
ALF Drug Discount Card - We recently partnered with NeedyMeds on the creation of a Drug Discount Card for uninsured and underinsured patients and their families. The card is accepted at 63,000 pharmacies throughout the U.S. and can save people as much as 80% on drug prices when used without insurance. NeedyMeds is a national organization that provides information to individuals who cannot afford medications and health care costs.
Division Program Highlights
- The Great Lakes Division –11th Annual Academic Debates program was held on February 20th in Chicago. The event brought together teams of young clinicians from Loyola University Medical Center, Henry Ford Health Hospital, University of Chicago, Rush University Medical Center, University of Illinois at Chicago and Lutheran General, to present their positions about the ethics of organ transplantation, impact of new hepatitis C treatments and cancer screening benefits for a rare liver cancer. For the first time, ALF conducted live tweeting throughout the event (@LiverUSA). More than 160 liver specialists and supporters of ALF attended.
- Public and professional education is the bread and butter of what we do. The New England Division launched its Monthly Education Series in March. The April program, which focused on living donor transplantation, was well received by the medical professionals, patients and families in attendance. The Division also has three Living Well with Liver Disease programs planned for 2014, the first of which is scheduled for June 21st in Portland, ME. More than 100 patients, families and caregivers attend these programs, which are one-day seminars offering the latest information about liver disease research and treatment through keynote lectures and a physician panel.
- Our Connecticut Division hosted programs on hepatocellular carcinoma HCC: A Multidisciplinary Approach and hepatitis C featuring leading area liver disease clinicians. The two HCC programs attracted some 90 healthcare professionals. Sixty Medical Advisory Committee members attended the Hepatitis C – New Treatment Options case study presentations and discussion about the new hepatitis C treatments.
- The Greater New York Division has seen a flurry of activity during the last month with two Re-Birthday events (one on Long Island and another in New Jersey). The Re-Birthday events are particularly poignant as they bring together transplant recipients of all ages, along with family members, to share experiences about what life has been like post-transplant and express their gratitude toward donors. The event also honors the people who made the greatest gift possible – the donors and their families.
- Greater New York also participated in the NYC Viral Hepatitis Awareness Press Conference on the steps of New York’s City Hall on May 15th and were among the speakers at the event.
- Visits to the American Liver Foundation’s website (liverfoundation.org) and designated websites on hepatitis C (hepc123.org) and hepatic encephalopathy (he123.org) saw a dramatic spike with the number of unique visitors averaging 120,000 per month. This is in addition to the increases across the board in all our social media channels, including Facebook, Twitter, LinkedIn and YouTube. Here are some exciting statistics:
- In February alone, there were more than 100,000 hits to disease-specific pages on liverfoundation.org – an increase of nearly 300% since 2011.
- We now have 30,000 Facebook fans, an increase of 250% in one year and 3,000 Twitter followers (an increase of 25% in one year).
We couldn’t do all that we do without the dedication and hard work of our extremely loyal and hardworking staff and volunteers. You make a profound difference to ALF and all the people we serve.
Thank you all for your continued support.
Tom Nealon, National Board Chair American Liver Foundation
Page updated: May 27th, 2014