The liver advocacy community — with the GLI Liver Action Network leading the way — has elevated patient voices through a variety of initiatives throughout September and October. Here are some advocacy highlights that have occurred over the past month:
The LIVER Act – Reintroduced October 21, 2021
This past month the liver advocacy community applauded the actions of U.S. Representative Nydia Velázquez (D-NY) and U.S. Senator Tammy Duckworth (D-IL) to improve the lives of all people impacted by liver cancer by reintroducing the LIVER Act. We now need your help to urge other Members of Congress to cosponsor each of these bills, urge action on each within Congressional committees, and support their inclusion in other legislation. More information on the reintroduction of the LIVER Act is available here. Please consider reaching out directly to your member of Congress and ask them to become a cosponsor of the LIVER Act.
The State of Liver Cancer Educational Congressional Briefing
Global Liver Institute (GLI), the Hepatitis B Foundation, NASH kNOWledge, and the Taiwan Hepatitis Information and Care Association (THICA) in collaboration with Representative Nydia Velázquez (D-NY) led a October’s Liver Cancer Awareness Month Educational Briefing on The State of Liver Cancer. The virtual educational event explored the challenges and opportunities surrounding liver cancer around the globe, with the goal of improving health equity for all patients going through their own liver cancer journey. Watch the recording on YouTube, Facebook, or Twitter.
Advanced Advocacy Academy (A3) Virtually on Capitol Hill
GLI’s A3 Advocacy Day took place during September. More than 80 A3 advocates participated and met with more than 40 congressional offices. Each advocate was able to elevate liver health policy and discuss a variety of policy initiatives including the LIVER Act and the NASH Care Act. A full A3 2021 report will be available soon.
Liver Action Network (LAN) Growth and Action
This past month, the LAN proudly welcomed two more member organizations: the Northwest Ohio Liver Alliance and HepCure (based in Canada). See the full LAN here.
NASH Externally Led Patient Focused Drug Development (EL-PFDD) Meeting
On November 4th, GLI, in collaboration with the GLI Liver Action Network, led an EL-PFDD Meeting on NASH. This virtual event included two panels of patients and caregivers impacted by NASH. The meeting provided the medical community an opportunity to obtain a wide range of patients’ and caregivers’ input on NASH, including their perspectives on their condition, its impact on daily life, and the urgency around developing therapies. A full outcome report for this event will be made available in the near future.
If you have been impacted by NASH, the GLI Liver Action Network and GLI invite you to participate in this important survey to help develop future treatments for NASH. The results from this survey will be included within the final EL-PFDD outcome report. Take the survey here.
The collective liver advocacy over the past few months demonstrates the building of momentum, and groundswell of support liver health policy has across the country. If you are looking to join the GLI Liver Action Network, and help us in the fight to elevate liver health, please check out the GLI take action page.
Donna R. Cryer, JD
President & CEO
Global Liver Institute
OPEN ADVOCACY OPPORTUNITIES
NASH EL-PFDD Survey
Have you been impacted by NASH?
The Liver Action Network and GLI need your help to educate the medical community about the priorities and preferences for addressing NASH. We invite you to participate in this important survey to help develop future treatments for this devastating disease.
This survey is designed to collect anonymous information about your priorities and preferences for addressing NASH including issues centered around diagnosis, clinical trial access, and available treatment options. Data from this survey will be used by Global Liver Institute, a 501(c)3 patient advocacy and support organization, for research in our mission to help develop potential treatments for NASH. Take the Survey
Ask Congress to Support the Liver Illness Visibility, Education, and Research (LIVER) Act
The LIVER Act is a public health initiative that will help people of all ages, lifestyles, and ethnic backgrounds reduce their risk for liver cancer and related risk factors like viral hepatitis and NASH. Take action here.
GLI POLICY DEVELOPMENTS
GLI Applauds the CDC’s Liver Cancer Awareness Month Statement
In a Dear Colleague letter, the Centers for Disease Control and Prevention (CDC) recognized Liver Cancer Awareness month, and the opportunity to draw attention to the global burden of liver cancer. In addition, the letter highlighted the CDC’s various efforts and programs that aimed to increase early detection and screening of liver cancer. The full letter is available here.
President and CEO of GLI, Donna Cryer, JD, Highlights Changes in Value Assessment and Policy Post COVID-19
GLI President and CEO, Donna Cryer, JD, details the fundamental shifts in thinking, behavior, and action that have occurred as a result of COVID-19. She discussed three shifts in thinking: “We are all connected”, “We are all essential”, and “Sometimes time is a choice”. She detailed how these shifts in thinking are essential to understanding and evolving our health care and how we value it. Read the full article here.
GLI Advocacy Letters:
Ad Hoc Sign-on Letter to Appropriations Leadership re. Finalizing FY 2022 NIH Funding
GLI joined the Rare Disease Diversity Coalition Government Regulation, Legislation, and Policy Working Group on an Orphan Drug Tax Credit Congressional Letter
GLI joined the Viral Hepatitis Advocacy Community on a letter urging the CDC to support Universal Adult Hepatitis B Vaccination
GLI signed onto a letter to Congress on extending the virtual care provisions included in the CARES Act for individuals with HDHP-HSAs before the Dec. 31 expiration is now live
GLI signed on in support of the DIVERSE Trials Act (H.R. 5030/S. 2706)
GLI was added to a sign-on letter urging Congressional leaders to set funding levels for FY22, and making the case that CRs stymie desperately-needed faster medical, health, and scientific progress
GLI joined the Alliance for Connected Care in urging Congress to act now to extend the telehealth safe harbor enacted in CARES for those with HDHP-HSAs
GLI joined the HIV+Hepatitis Policy Institute in sending a letter to the Senate Finance Committee in support of practical solutions to increase patient affordability of prescription drugs and to express concerns with some of the solutions being discussed, including price controls tied to international markets and QALYs
GLI signed onto a community sign-on letter supporting the enactment of the DoD Appropriations bill so that CDMRP programs can get funded
GLI joined the Obesity Care Advocacy Network in sending letters to the House Energy & Commerce and Ways & Means Committees and to the Senate Finance Committee. (House and Senate) urging action to address the growing number of Americans living with obesity who lack access to comprehensive care. A similar letter was also sent to the Biden Administration
GLI joined many organizations on a Part D out-of-pocket reform letter
Updates from the Liver Action Network
See more about these updates in the GLI Liver Action Network on the bottom of our Take Action Page!
GLI Liver Action Network thanks both Senator Duckworth and Representative Velázquez for introducing the LIVER Act
Through the reintroduction of the LIVER Act we can finally elevate liver health, prevent rising risk factors, and begin to address the variety of health disparities connected to liver cancer.
GLI Liver Action Network Sends Letter Urging CMS to consider unmet need in NASH, and support the FDA’s Breakthrough Designation for Intragastric Balloon as a treatment for NASH
As new therapies begin to become available for NASH, the last thing the advocacy community wants is a precedent being set with their IGB decision impacting patient access.
GLI Liver Action Network Urges Support for Viral Hepatitis Programs
As Congress begins to draft a final fiscal year (FY) 2022 spending package, we urged Congressional leadership to support the adoption of the House Appropriations Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies Fiscal Year 2022 (FY2022) spending bill, and provide a $5 million increase to hepatitis programs at the Centers for Disease Control and Prevention (CDC).
AB 347 becomes law thanks to the Liver Coalition of San Diego
The Liver Coalition of San Diego’s advocacy efforts led to bill AB 347 being passed into law. See more information about the bill here.
AB 789 becomes law thanks to the Liver Coalition of San Diego
This bill will Offer Free Hepatitis B and C Screenings and address health disparities in AAPI and Black Communities. Press Release Linked Here.
Global Liver Institute and the Fatty Liver Alliance send a letter to The World Health Organization on NASH and Type 2 Diabetes
The Fatty Liver Alliance collaborated with the Global Liver Institute to send out a letter to the World Health Organization (WHO). This letter urged them to prioritize a more focused approach on the impacts and risks of Type 2 Diabetes on liver health, especially Nonalcoholic Fatty Liver Disease (NAFLD) and nonalcoholic steatohepatitis (NASH).
Fatty Liver NASH Update Event (November 18, 2021)
The virtual conference event will take place Thursday November 18, 2021 from 6-9pm. The conference is aimed at patients and caregivers (but is open to everyone) and will focus on updating them on new developments surrounding NASH in the healthcare world. Several esteemed speakers with knowledge on liver health will speak. The event is free but registration is required. For more information see this link.
The impacts of the SARS-CoV-2 pandemic on digestive/liver health health
The United European Gastroenterology (UEG) Public Affairs Committee has published a position paper in the UEG journal to educate policymakers, patients, healthcare professionals, and the general public about the impacts of the coronavirus disease 2019 (COVID-19) pandemic on digestive/liver health. No safety issues have been reported in liver transplant recipients or patients with mild-moderate liver disease who received the COVID-19 vaccine. In one study from China, patients with non-alcoholic fatty liver disease reported mild side effects and produced neutralizing antibodies against SARS-CoV-2.
The brand new EU Health Emergency preparedness and Response Authority – HERA
HERA will strengthen the EU’s health emergency response and preparedness plan and ensure medical countermeasures are rapidly available in an emergency. HERA is now in a development stage until it will be fully operational by early 2022.
Commission signs contract for the supply of a monoclonal antibody treatment
The Commission has signed a joint procurement framework contract with the pharmaceutical company Eli Lilly for the supply of monoclonal antibody treatment for coronavirus patients. The medicine is currently under rolling review by the European Medicines Agency.
Europe’s Cancer Plan
This Interparliamentary Committee meeting provided an occasion for debate between European and national parliamentarians on the BECA (Beating Cancer) draft report, and on Europe’s Beating Cancer Plan presented by the EU Commission in 2021.
European Health Union: Towards a reform of EU’s pharmaceutical legislation
The Commission has published a public 12 week consultation on the revision of the EU’s pharmaceutical legislation. The consultation will gather the views from both the general public and stakeholders to support the evaluation of and the impact assessment for the revision of the EU’s pharmaceutical legislation that is foreseen for the end 2022.
U.S. FEDERAL NEWS
The draft Senate Appropriations FY 2022 Federal Spending Report/Bill for HHS came out October 18,2021
The below sections in the draft directly address liver health issues:
Increasing Hep B Vaccinations p. 78: Increasing Adult Hepatitis B Vaccination.—Given that hepatitis B is preventable through a safe and effective vaccine, the Committee is concerned that fewer than one third of adults age 19 and older are vaccinated. The Committee urges CDC to redouble its efforts to address this long-standing problem.
Liver Cancer: While advances in some cancers have made it possible to reduce the overall rate of cancer deaths over the last two decades, there has been limited progress reducing mortality for these diseases. The Committee directs NIH to provide a status update and timeline for the scientific framework within 60 days of enactment of this Act. The Committee also expects to be kept informed of NCI’s efforts on pancreatic, lung, glioblastoma, esophageal and stomach cancers. The Committee also requests that NCI to identify in the fiscal year 2023 CJ its research goals to advance progress for the deadliest cancers. The Committee encourages NCI to consider research opportunities that might support future development of a liver cancer screening test using the blood and saliva samples from the widespread national COVID–19 testing.
Hep B p. 152:The Committee recognizes the estimated $4,000,000,000 of annual medical costs associated with the care and treatment of those infected with the hepatitis B virus and urges NIH to redouble its efforts to identify more effective treatments for the disease.The Committee requests that NIH support an update of the Strategic Plan for Trans-NIH Research to Cure Hepatitis B to be completed before the end of fiscal year 2022
Minority Health pp 222-223: The Committee supports the OMH effort to lead collaboration across the Department to assess the health status and quality of life for racial and ethnic minorities in the United States. The Committee encourages OMH to support research or public health interventions related to a variety of diseases and help reduce racial/ethnic disparities within these diseases.
U.S. NGO NEWS
The Regulatory Relief Coalition (RRC) releases a statement on the Improving Seniors Timely Access to Care Act
On October 20, 2021 U.S. Senators Roger Marshall, M.D. (R-KS), Krysten Sinema (D-AZ), and John Thune (R-SD) introduced the Improving Seniors’ Timely Access to Care Act, bipartisan legislation that would improve timely access to quality care for seniors under Medicare Advantage. The bill will modernize the way Medicare Advantage plans and health care providers use prior authorization. The RRC released a press release applauding the senate for their action and in support of the legislation.
NAMES TO KNOW
Professor Bruce Hammock, U.C Davis
Professor Hammock and his team discovered a drug candidate that may help control the body’s often deadly inflammatory response to chemotherapy treatments, especially for pancreatic and liver cancer patients. They worked on rodent models with liver and pancreatic cancer, until they found they could use a combination of two drugs to reduce inflammation following chemotherapy. His research team, based in the laboratories of Dipak Panigrahy at Harvard Medical School and Hammock, announced their findings in Proceedings of the National Academy of Sciences (PNAS) September 29, 2021.
Early-Stage Preclinical Validation of Therapeutic Leads for Diseases of Interest to the NIDDK (Clinical Trial Not Allowed). Funding available from the NIH. Application Deadline: 11/12/2021
Mechanisms of Disparities in Chronic Liver Diseases and Cancer (R21 – Clinical Trial Not Allowed) Application Deadline: 04/01/2022