Fall Forward for Liver Advocacy
As summer comes to a close it is a great time to take a step back, and lay out our plan for the rest of 2019.
As we break down each month, and look forward into the fall, GLI will continue pursuing a robust multi channel advocacy agenda that stays true to our core mission. Every action we take is centered around improving the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
September will be focused on expanding awareness around the LIVER Act, and why including NASH within the bill is critical. October will mark the return of our #OctoberIs4Livers liver cancers awareness campaign (more on this campaign is included in this update report). November will include our A3 training event, and AASLD’s Liver meeting. Finally, December will include a critical timestamp moment for GLI.
In December we will recognize a crucial moment in time for our organization. Not only will it be 25 years since my transplant surgery, but it will also mark the close of 5 fantastic years for GLI. During these 5 years we have seen our organization grow from purely a dream to a full fledged team that is an active voice for all impacted by liver disease.
I could not be more happy with all that we have accomplished over the last 5 years. 2019 especially has marked many amazing accomplishments, whether it was the launching of an expansive global awareness campaign, International NASH Day 2019, or the introduction of a liver bill in Congress.
However, while I am proud of our accomplishments we understand that our job is far from over, and there are still plenty of issues that need attention in the liver disease space. The liver still is routinely treated as a “lower” or “less important” organ on the global level, and this is something that must be changed. 5 years for us acts purely as a mile marker as we continue on our journey of advancing liver disease to the top of the global public health agenda.
We look forward to the rest of our efforts in 2019, and to our many advocacy efforts to come.
Donna R. Cryer, JD
President & CEO
Global Liver Institute
OPEN ADVOCACY OPPORTUNITIES
“Request to Connect” - A New Way for Patients to Connect with FDA
The FDA Patient Affairs Staff has announced the FDA “Request to Connect” portal is now live
This new patient portal gives patients and caregivers a single entry point to the agency for questions and meeting requests.
POLICY DEVELOPMENTS AT GLI
Apply for GLI’s Advanced Advocacy Academy (A3) Class of 2019
Applications for GLI’s Advanced Advocacy Academy (A3) Class of 2019 are still open, but the September 16 deadline is arriving soon. A3 2019 will take place on November 1-2, 2019 at GLI Headquarters in Washington, DC. An additional “Hill Day” is being added for A3 alumni. This year’s program will offer liver patients, caregivers, and professionals the opportunity to learn from experts in the fields of drug development, clinical trials, state and federal legislation, media and communications, and liver health and disease. Participants will learn public speaking, media and project skills, including forming support groups. If you or someone you know is interested in attending, visit the A3 website to learn more and to apply, or email email@example.com with any questions.
Help GLI generate awareness and inform the public and at risk patients about liver cancer this October. GLI will again be leading a multi-pronged campaign to draw attention to liver cancers and its trends. Most importantly GLI will teach the public about the importance of screening and prevention, raise the voices of those impacted by liver cancer, and examine the future of the liver cancer landscape worldwide.
Legislation in the United States has been introduced that can curb the rising liver cancers epidemic. The LIVER Act of 2019 is a public health initiative that will help people of all ages, lifestyles, and ethnic backgrounds reduce their risk for liver cancer and related illnesses by enhancing the U.S. federal government’s research initiatives while empowering local organizations to promote treatment and raise awareness. As part of the month, GLI will be hosting their first U.S. Capitol Hill day for its Advanced Advocacy Alumni (A3), and hosting a U.S. Capitol Hill Briefing on October 31st to continue advancing this important legislation. Please stay tuned for more information on our plans for October 31st.
Working in tandem with the outreach on Capitol Hill, GLI will build broad support for awareness and education on social media platforms through the hashtag #OctoberIs4Livers. The campaign’s goal is to connect the public to relevant information, resources and messages, while also connecting patients, caregivers, and professionals.
Obesity, the opioid epidemic, and hepatitis B are all critical drivers in the rise of liver cancers. It is time for liver cancers to receive the global attention it deserves. There is much that must be done to change the course of this most rapidly rising cancer, which has been increasing in incidence since 1980. #OctoberIs4Livers marks the first of many future opportunities that GLI will create to change the narrative and outcomes of liver cancers.
GLI Signs onto Prior Authorization Transparency and Oversight Bill Letter
The bipartisan bill (H.R. 3107) is led by U.S. Reps. DelBene, Kelly, Marshall, and Bera and is focused on transparency and oversight over Prior Authorization in Medicare Advantage. Nearly 300 groups have signed onto the stakeholder letter.
FOR YOUR CALENDAR
ECCO 2019: European Cancer Summit,September 12-14, Brussels
WHO Regional Committee for Europe, 69th Session, September 16-19, Copenhagen
International Liver Cancer Association Annual Meeting September 20-22, Chicago
EASL - NAFLD Summit September 26-29 (Valencia, Spain)
European Society for Medical Oncology Congress September 27 - October 1 (Barcelona, Spain)
3rd NASH Summit EU October 23-25 London
NCI Liver Cancer Program: Special Conference on Tumor Metabolism October 28-29, Bethesda
Global Liver Institute Advanced Advocacy Academy, November 1-2, Washington
American Public Health Association November 2-6, Philadelphia
American Association for the Study of Liver Disease, The Liver Meeting November 8-12, Boston
Cancer Council Australia to Create Optimising Liver Cancer Control in Australia
A new program will be developed in Australia to identify priority actions for clinicians, researchers and policy makers to improve liver cancer outcomes in Australia. As in the U.S., new liver cancer cases and deaths from the disease have been increasing significantly in recent decades. Much of the program’s focus will be on prevention and early detection.
The Liver Illness Visibility, Education and Research (LIVER) Act of 2019 (HR 3016)
GLI has been actively involved in advancing this first of its kind liver legislation. On July 9, 2019 GLI officially submitted a letter of support to Representative Nydia Velazquez (D-NY). Included in the letter of support, GLI asked that NASH be added to the list of conditions known to increase an individual’s risk of developing a major liver diseases including liver cancer.
As of the writing of this report, the LIVER Act of 2019 has 14 cosponsors. GLI will host a Capitol Hill Briefing on October 31st to continue positively advancing this important piece of legislation.
NCBI Report - Increased Risk for Hepatocellular Carcinoma Persists Up to 10 Years After HCV Eradication in Patients with Baseline Cirrhosis or High FIB-4 Scores
The report analyzes changes in hepatocellular carcinoma (HCC) annual incidence over time following hepatitis C virus (HCV) eradication. It also identified dynamic markers of HCC risk.
The report found that patients with cirrhosis before a sustained virologic response (SVR) to treatment for HCV infection continue to have a high risk for HCC for many years, even if their FIB-4 score decreases, and should continue surveillance.
Also patients without cirrhosis but with FIB-4 scores ≥3.25 have a high enough risk to merit HCC surveillance, especially if FIB-4 remains ≥3.25 post-SVR.
GAO Obesity Drugs Report
GAO has released its study on obesity drugs. A key take away is that few people with obesity use prescription drugs for weight loss. Also coverage varies widely – including prior authorization hurdles for physicians and counseling on lifestyle change.
U.S. HHS Leadership Changes
The Department of Health and Human Services announced that John O’Brien will soon be departing as Senior Advisor to the Secretary for Drug Pricing Reform and John Brooks, currently Principal Deputy Director of the Center for Medicare, will expand his current responsibilities to serve as Senior Advisor for Drug Pricing Reform.
American Cancer Society (ACS) Releases 2019 Cancer Statistics and Projections
Cancer Facts & Figures 2019 is an educational companion for Cancer Statistics 2019, a scientific paper published in the American Cancer Society journal, CA: A Cancer Journal for Clinicians. The Facts & Figures annual report provides statistics and information about cancer in the US. Key information found in the report includes:
Estimated numbers of new cancer cases and deaths in 2019
Current cancer incidence, mortality, and survival statistics
Information on cancer symptoms, risk factors, early detection, and treatment
Below is a brief snapshot of U.S. estimates of new cases and deaths for 2019 for all cancers and for liver cancer:
Estimates for All Cancer Types in 2019
New cancer cases: 1,762,450
Estimates for Liver Cancer in 2019
New cancer cases 42,030
Epidemiologic Research on Emerging Risk Factors and Liver Cancer Susceptibility. Funding available from NIH Application Deadlines: May 7th, 2021.
Conquer Cancer®, the ASCO Foundation, has awarded more than $126 million through nearly 2,100 grants and awards to medical students, trainees, young scientists, and oncologists at all stages of their careers. Many of their funding opportunities are currently accepting applications. While eligibility criteria differ for each award, all grants require that applicants be a member of ASCO to apply. Join ASCO and to submit a grant application.
NAMES TO KNOW
John Brooks, whose extensive career has included time as Counselor to the Secretary for Health Policy with HHS and as a Sr. Principal for Health Policy managing a team of 45 health policy and public health analysts working with federal health agencies to transform the US health care system, will expand upon his current role as Principal Deputy Director at the Centers for Medicare & Medicaid Services, and act as the new Senior Advisor for Drug Pricing Reform.
TERMS TO KNOW
GAO - The U.S. Government Accountability Office (GAO) is an independent, nonpartisan agency that works for Congress. Often called the "congressional watchdog," GAO examines how taxpayer dollars are spent and provides Congress and federal agencies with objective, reliable information to help the government save money and work more efficiently.