Get Out And Vote to Support Liver Health Policy Champions
POLICY PERSPECTIVE
At Global Liver Institute (GLI), we are a nonpartisan global organization committed to improving the lives of individuals and families impacted by liver disease, especially liver cancer, by promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
Critical to this mission is helping make sure all people globally impacted by liver disease can participate in democracy, advocate to elevate liver health policy, and vote.
This point is especially timely as we launch our 2020 Global Call to Action during October’s Liver Cancer Awareness Month. We need your help to elevate liver health policy to the desk of every global leader, and shine the spotlight on the need to double every country’s 5-year liver cancer survival rate by 2030. Pledge to support your country’s efforts by adding your name to our proclamation supporters.
In the United States all American liver health advocates have an opportunity to go a step beyond the proclamation by ensuring they are registered to vote in the upcoming election in November.
Registering and voting this year in the U.S. helps us move other timely liver health policy priorities like:
Strengthening public health programs serving those with underlying liver diseases;
Ensuring funding for liver disease and COVID related medical research forward;
Workforce and unemployment protections and;
Medical coverage and access to care protections
With an added bonus of:
Getting the attention of U.S. candidates and;
Helping us build a community of life-long voters!
So how do you make sure you are ready to vote?
It’s never too early to make sure you’re ready to make your voice heard in the fall election. To help you prepare, we created a simple checklist you can follow:
Look up your voter registration status
Learn about your options for casting your ballot (Find out if you can vote safely in person, if you can vote early, or vote by mail)
Find out what’s on your ballot
Check if you need an ID to vote
How can you make sure you support candidates that support liver health policies?
The election is 4 weeks away so there’s plenty of time to research the candidates, and find out what initiatives they support. Not only will this make sure you’re prepared well-ahead of Election Day, but it will also ensure you have time to look at each candidate’s voting history, and if needed, communicate with them to elevate liver health policy.
Critical 2020 liver health policy priorities include, but are not limited to:
Funding for public health programs serving those with underlying liver disease
We must strengthen the Centers for Disease Control and Prevention (CDC) surveillance, prevention, and awareness efforts for vulnerable populations,
increase funding for liver disease and population health programs that address liver disease, and
focus targeted programs on addressing health disparities
Funding for research on how COVID-19 impacts patients with liver disease, as well as funding to restart federally funded research
To meet the needs of a growing patient population and to address the slow down/restart of research due to the COVID crisis, funding is needed.
Workforce and unemployment protections
Many people and families impacted by liver disease make up significant contributors to our country’s workforce, and during this time of crisis protecting their income and livelihood could not be more important.
Continued support for workers who are sick and quarantined, unable to provide care, experiencing school closures, laid off or are experiencing reduced work hours, is vital.
Medical coverage protections, access to care, and limits to out-of-pocket costs especially for people with preexisting conditions
Especially during a time of crisis, individuals must be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and related factors.
It is also critical to enact and protect restrictions to cap out-of-pocket costs to keep coverage equitable and accessible to all.
Finally, it is important to remove coverage barriers preventing access to clinical trials, crucial medical research, and innovative new treatments to reduce disparities in treatment outcomes.
Many of these priorities are included within but not limited to the following introduced U.S. federal legislation:
COVID-19 Prevention and Awareness Grants
Public Health Infrastructure Saves Lives Act S. 4740 - Fact Sheet
Treat and Reduce Obesity Act (TROA) H.R. 1530, and S. 595 - Summary
Health Equity and Accountability Act (HEAA) of 2020 H.R. 6637
The HEROES Act H.R. 6800, and The Revised Heroes Act Coronavirus Response Package H.R. 8406
Global Liver Institute proudly supports many other pieces of legislation. If you are interested in taking a more active role with Global Liver Institute on these critical issues, please join the liver advocacy community and learn about upcoming opportunities to advocate on behalf of all individuals impacted by liver disease.
Donna R. Cryer, JD
President & CEO
Global Liver Institute
COVID-19 Response Program for Liver Patients
GLI continues to research and update information about COVID-19 specifically addressing the needs and concerns of liver patients, particularly those who are immuno-suppressed, immuno-compromised, and who have chronic liver conditions. Please check here for all of our COVID-19 Response resources and join GLI LIVE weekly on Wednesdays at 12:00 p.m. EDT on GLI’s Facebook page.
POLICY DEVELOPMENTS AT GLI
#OctoberIs4Livers: Liver Cancer Won’t Wait
#OctoberIs4Livers is a global awareness program in the fight against liver cancer. Get involved by joining our social media campaign, watching a GLI Live on Facebook, perusing our Liver Cancer Lessons materials, or signing our global pledge to double to five year survival rates!
There is much more and something for everyone. Together we can end liver cancer.
#OctoberIs4Livers: Virtual Liver Cancer Summit with Centers for Disease Control and Prevention
Liver cancer is intrinsically linked with many other diseases and is addressed by multiple divisions within the CDC. Join us Wednesday, October 14, as we convene representatives from several divisions to showcase their important work in liver cancer and encourage increased collaboration for liver cancer and liver disease. Wednesday, October 14, 2020 at 12:00PM EDT via Global Liver Institute’s Facebook
#OctoberIs4Livers: Global Liver Cancer Map
Globally the five-year survival rate for liver cancers is below 27%. See how other countries stack up and join our efforts by signing your name to our pledge to double this rate in each country by 2030.
Global Liver Institute Urges Congress to Strengthen and Support Public Health Programs Serving those with Liver Cancer and Liver Disease
Throughout Liver Cancer Awareness Month, the Global Liver Institute (GLI) is appealing to Congress to act now to secure the health and well-being of people living with liver disease and liver cancers during COVID-19. To meet the need of this growing patient population, especially throughout the COVID-19 pandemic, action is needed to ensure patients with liver disease are not disproportionately impacted.
GLI Launches “The Language of NASH - A Foundational Messaging Framework for Communication about NASH and NAFLD”
The Global Liver Institute announces the release of The Language of NASH - a foundational NASH messaging framework for communication about NASH and NAFLD.
Liver Health Provision in COVID-19 Response Package (COVID-19 Prevention and Awareness Grants)
GLI continues to work with the liver health community to urge Congress to include robust funding to authorize necessary resources for Centers for Disease Control to implement targeted prevention and awareness grants that would positively protect patients and families impacted by liver disease.
Congresswoman Nydia Velázquez (D-NY) is leading the charge by ensuring funds are available for grants for people of any age with certain underlying medical conditions, including liver disease, who are at increased risk for severe illness from COVID-19.
GLI Signs On to Support the Public Health Infrastructure Saves Lives Act (S.4740)
Introduced by Senator Patty Murray, a ranking member of the Senate HELP committee, this bill calls for the creation of a core public health infrastructure program at the CDC. The program’s main goal is to strengthen the Nation’s public health system, especially during the ongoing COVID-19 pandemic, by awarding grants to State or local health departments with 500,000 or more constituents. The program also allows for grants to smaller State, local, or tribal health departments on a competitive basis. A fact sheet for the bill can be found here.
GLI Supports HR 4393: The Advancing Access to Precision Medicine Act
HR 4393 seeks to improve patient outcomes by increasing access to genomic research and testing for rare diseases, such as those identified via newborn genetic screening. The newest edition of the bill calls for selective sequencing of DNA, the exome, or a panel of genes - essentially meaning that what is sequenced is up to the patient and provider alone. As GLI continues to focus on rare and pediatric liver disease we recognize the importance of supporting the rare disease community as a whole, especially during the COVID-19 pandemic during which rare diseases are not getting the attention they need and deserve.
GLI Collaborates with OCAN and the Obesity Advocacy Community on Advocating for Treat and Reduce Obesity Act (TROA) Inclusion in Next COVID-19 Response Package
COVID-19 is disrupting the normal life of many Americans and others throughout the world, especially individuals with chronic liver disease and obesity, conditions that often put them at higher risk of the virus and its health consequences. The primary sponsors of TROA (Representatives Kind, Guthrie, Ruiz and Reed) sent a May 8th letter and we echo their support that "updating Medicare’s coverage policies to support the treatment and prevention of obesity should be part of a comprehensive response to COVID-19.”
If you would like to join GLI and others in the advocacy community on this important effort please take action to support the Treat and Reduce Obesity Act.
Advocacy Letters
This past month, GLI collaborated with many organizations in submitting the following letters to key government agencies, and U.S. Members of Congress.
New Letter in support of the Health Equity and Accountability Act of 2020 (early 2020 letter of support that GLI was also signed onto)
GLI Endorses Support the Public Health Infrastructure Saves Lives Act (S. 4740)
GLI Signs letter to the White House Coronavirus Task Force urging them to reverse the revisions to CDC’s testing guidelines for asymptomatic individuals (CDC updated their guidelines on Sept. 18, 2020)
OPEN ADVOCACY OPPORTUNITIES
Global Liver Cancer Proclamation
Pledge to support your country’s efforts to double the five-year survival rate for liver cancer by 2030 by adding your name to our proclamation supporters.
#OctoberIs4Livers Advocate Toolkits
Access our comprehensive educational toolkits developed for liver health advocates and advocacy partners to access our engaging and informative social tiles, suggestions for engagement and important calls to action. Explore the Advocate Toolkit.
Going Virtual: Apply for GLI’s Advanced Advocacy Academy (A3) Class of 2020
The fourth annual Advanced Advocacy Academy (A3) will take place worldwide on October 26-30. This year's A3 will be a week-long virtual event offering 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. Live discussions with faculty members will enhance individual learning, foster engagement, and promote important conversations. Self-paced lessons can be customized to fit each attendee’s personal learning style and schedule. For more information, contact a3@globalliver.org.
FOR YOUR CALENDAR
Many in-person events and meetings for the month of October have been cancelled or postponed due to the COVID-19 pandemic. Please take the proper precautions of social distancing to limit large gatherings and to remain healthy and safe!
Check out our #OctoberIs4Livers calendar of virtual events.
Let us know about other events GLI can add to the calendar. Send notices to info@globalliver.org.
Global News
ERN RARE-LIVER Position Paper: Second-line and Third-line Therapy for Autoimmune Hepatitis
European Reference Network on Hepatological Diseases (ERN RARE-LIVER) position statement on 2nd & 3rd line treatment of autoimmune hepatitis has recently been published in Journal of Hepatology. In addition to this publication, ERN collaborated with patient representatives to produce a lay summary of the position paper with the International Autoimmune Hepatitis Group.
Japan Commits $165 Million to WHO's Global Coronavirus Vaccine Programme
Japan has committed 17.2 billion yen ($165 million) in funds for its participation in the World Health Organization’s COVID-19 vaccine programme. The programme, known as COVAX, is aimed at helping buy and fairly distribute vaccination shots against the novel coronavirus around the world.
EU to Create New Biomedical Research Agency
European Commission president Ursula von der Leyen has scoped ambitions for the EU to play a greater role in health, with plans to create a new agency for late stage biomedical research modelled on the US Biomedical Advanced Research and Development Authority BARDA.
EU Plans to Boost Pandemic Preparedness
European Commission President Ursula von der Leyen announced plans for a European Health Union during her State of the Union speech to help better prepare the bloc for future pandemics. It could mean more funding and competences for several existing programmes including the EU4Health programme - the EU's response to COVID-19 - as well as a reinforced European Medicines Agency (EMA) and a strengthened European Centre for Disease Prevention and Control (ECDC).
U.S. Federal NEWS
White House Reports the US Will Not Join COVAX Efforts
Early last month the White House reported the US will not join the over 150 countries, approximately 64% of the global population, working together to develop and equitably distribute a COVID-19 vaccine. The White House has stated its decision is largely based on the fact the effort is being led by the World Health Organization, who they have labeled as “corrupt” and are in the process of formally withdrawing from. The US remains focused on Operation Warp Speed in the meantime and still promises to deliver 300 million doses of a safe and effective vaccine by January 2021.
President Trump Releases “Most Favored Nation” Drug Pricing Executive Order
The latest of President Trump’s drug pricing executive orders calls for Medicare to pay only the “most favored nation price” for Part B or Part D prescription drugs. The “most favored nation price” is described as being the lowest price for a product that the drug manufacturer sells in a member country of the OECD with comparable per-capita GDP. Critics argue that the order may be counterproductive; instead of lowering prices in the US, drug prices around the world in comparable countries could rise exponentially.
U.S. House Democrats Introduce Revised Version of COVID-19 Response Package
The U.S. House of Representatives’ Democrats have released an updated $2.2 trillion version of the House’s Heroes Act. As you may recall, the House approved an earlier version of the Heroes Act (H.R. 6800) on May 15, but negotiations with the White House and the Senate on another COVID-19 relief package have stalled up to this point. Like the original bill, the slimmed-down version of The Heroes Act provides $4.721 billion for the National Institutes of Health.
President Trump Signs Continued Resolution Extending Government Funding Until December 2020
President Donald Trump signed a stopgap spending bill to avert a U.S. government shutdown on October 1, after briefly missing the midnight, September 30, deadline for his signature, averting an unlikely but potentially disastrous scenario that would kneecap federal agencies in the weeks before the presidential election. The continuing resolution extends about $1.4 trillion in government funding until December 11. A summary of the CR can be found here.
Senate Democrats Intro Bill to Investigate Political Interference in COVID-19 Response
After recent information about the altering of CDC reports by HHS officials, Senate Democrats have proposed the Science and Transparency Over Politics (STOP) Act. The task force would operate under the Pandemic Response and Accountability Committee which was created by the CARES Act and would review communications between the White House and health agencies, as well as review prior publications for changes made due to political interference.
FDA Launches Digital Health Center
The FDA released its Digital Health Innovation Action Plan in 2017, outlining plans for a digital health precertification program pilot which would allow device makers to apply for broad clearance instead of being reviewed after each update to a device’s software. The project has come to fruition in the form of a new Digital Health Center which will focus on research into digital health regulatory science to help advance oversight of devices. There are two upcoming virtual listening sessions, on October 19th and November 12th, to gather input on the Digital Health Center. They are both open to the general public.
NIH Looks to Reduce COVID-19 Testing Disparities
Last month, NIH awarded nearly $234 million to help improve COVID-19 testing in underserved and vulnerable communities that have been hit especially hard by the coronavirus. The research agency is providing the funding to 32 institutions to better understand coronavirus testing patterns and reduce testing disparities. The work is being conducted through the NIH’s Rapid Acceleration of Diagnostics (RADx) initiative, which was launched months ago with $1.5 billion from Congress to help rapidly scale up coronavirus testing.
Preventing Diabetes Through Tech Innovation
Last month, U.S. Senators Tim Scott (R-SC), Mark Warner (D-VA), Kevin Cramer (R-ND), Kyrsten Sinema (D-AZ), Tom Cotton (R-AR), and Tina Smith (D-MN) introduced the PREVENT DIABETES Act. This legislation would increase access to the Medicare Diabetes Prevention Program (MDPP) Expanded Model by allowing CDC-recognized virtual suppliers to participate in the program.
GRANT OPPORTUNITIES
Mechanisms of Disparities in Chronic Liver Diseases and Cancer. Funding available from the NIH. Application Deadlines: April 1, 2022