In the post-election work period, “must-do” program reauthorizations are expected to be considered. Lawmakers will be eyeing action on these health care policies and more during the “lame duck” session after the November elections and before the 118th Congress gavels out.
Advanced Advocacy Academy Success Building Support for Policy Priorities
GLI is proud to share that the Advanced Advocacy Academy’s meetings on Capitol Hill on October 2, 2023 – and all of your continued advocacy efforts – have reaped positive results!
GLI is grateful for Congressional leadership to advance fatty liver disease research, a positive response to A3 and GLI’s requests for appropriations. The final appropriations bill for Fiscal Year 2024 was accompanied by report language encouraging AHRQ & others to evaluate the prevalence, diagnoses, treatments, and complications associated with NAFLD (now known as MASLD, which leads to NASH (now known as MASH). The final report also directed NCI’s Clinical Trials and Translational Research Advisory Committee (CTAC) to issue a report listing research focus areas for liver cancers, as well as directing hepatitis B vaccination efforts.
We are proud to also share that since A3 advocates met with Congress last October, the Medicare Multi-Cancer Early Detection Screening Coverage Act has added 14 House cosponsors and 70 more Senate cosponsors; the Living Donor Protection Act has added 9 Senate cosponsors and 42 House cosponsors; and the Treat and Reduce Obesity Act has added 54 House cosponsors and 7 Senate cosponsors!
GLI Thanks Senator Bill Cassidy for His Leadership in Fatty Liver Disease Research – AHRQ to Lead Prevalence Study
GLI applauds the announcement of a federally-funded study by the Agency for Healthcare Research and Quality (AHRQ) to assess the prevalence of fatty liver disease (known as metabolic-associated fatty liver disease or nonalcoholic fatty liver disease) as well as its associated costs and barriers in the US. GLI expresses gratitude to Senator Bill Cassidy (R-LA) for working alongside GLI’s community of advocates and holding the torch for liver health. Read more.
GLI Celebrates Hepatitis Awareness Month!
The month of May is designated as Hepatitis Awareness Month in the United States, and May 19th is Hepatitis Testing Day. GLI encourages all of our partners to work with us to shed light on the impact of hepatitis by raising awareness while encouraging testing and vaccination. A recent New York Times article titled “U.S. Lags Behind Other Countries in Hepatitis-C Treatment” notes that, of those diagnosed in the United States since 2013, just 34 percent have been cured. It has also been reported that the Congressional Budget Office is actively grappling with how to estimate the cost of potential legislation to advance the White House plan to eliminate hepatitis C, potentially looking at the cost over a 10-year window instead of a 5-year window to better capture its benefits. GLI looks forward to legislation advancing the White House Hepatitis C Elimination Plan. In the meantime, to raise awareness and encourage testing, reference the GLI Toolkit on Liver Health is Public Health here. Learn more how to get involved with the CDC’s efforts this month here.
Medicare Covers Obesity Medications Indicated for Cardiovascular Disease
The Centers for Medicare & Medicaid Services (CMS) recently decided to cover semaglutide, an anti-obesity medication (AOM) that is now indicated for cardiovascular risk reduction in people with existing cardiovascular disease. GLI strongly supports the expansion of coverage to allow AOM treatment for all people with obesity and urges Congress to pass the Treat and Reduce Obesity Act (TROA), which would allow obesity medications to have Medicare coverage consistent with other medications to treat chronic disease. The next step for the legislation is to be voted out of the committees with jurisdiction over Medicare – the House Ways and Means Committee, House Energy and Commerce Committee, and the Senate Finance Committee. GLI strongly supports committee action on the bill and its final passage by Congress. Reach out to your Member of Congress here.
GLI Supports Obesity Care for the Armed Forces
GLI is proud to support decisive action by the U.S. Department of Defense to rectify systemic issues preventing individuals with obesity from accessing evidence-based treatments including behavioral therapy, AOMs, and bariatric surgery. View the letter from advocacy organizations here.
HHS Final Nondiscrimination Rule Addresses GLI Comments on Organ Transplantation
Section 504 of the Rehabilitation Act protects the rights of people with disabilities in programs and activities receiving federal financial assistance. The final rule governing Section 504 was just released. In response to GLI comments, the final rule stated that “organ transplant discrimination against people with disabilities remains an ongoing problem” and that the rule’s protections apply “throughout the organ transplantation process, including the provision of information, referrals, evaluation, eligibility, prioritization and other aspects of the transplantation process.” The rule further clarified that it may violate the rule to deny access to a transplant if the entity did not consider the patient’s ability to manage their post-operative care needs with support from family, service providers, or others in the patient’s circle of support. GLI looks forward to doing the much-needed work to advance caregiving needs for organ transplant patients in collaboration with the National Alliance for Caregiving!
Telehealth Considered by House Energy and Commerce Committee
GLI has consistently supported access to telehealth as a key strategy for improving relationships between doctors and patients that allows patients to actively show doctors their medicine bottles, the environment in which they live, and even the contents of their refrigerators. Doing so allows doctors to better understand how to tailor a treatment plan around a patient’s real-world circumstances and thus improve treatment adherence. Therefore, GLI applauded the House Energy and Commerce Subcommittee on Health for convening a hearing on April 10, 2024, to examine a suite of legislative proposals that would bolster access to telehealth services. Discussion during the panel was largely centered on extending certain COVID-19 public health emergency (PHE) telehealth flexibilities beyond the current December 2024 expiration date. Lawmakers questioned witnesses on how to best extend such flexibilities to ensure patient access to quality care without significantly impacting costs to Medicare or hindering in-person visits. Notably, lawmakers on both sides of the aisle emphasized the importance of extending PHE-era telehealth flexibilities beyond their current expiration, with several members of the Subcommittee calling for permanent extension of the flexibilities through passage of the Telehealth Modernization Act of 2024 (H.R. 7623). GLI is encouraged by recent reports that the House Ways and Means Committee is considering action to mark up a two-year extension of Medicare telehealth rules, a key step for Congress to protect telehealth access and potentially pass telehealth legislation as part of a potential end-of-year package of health-related bills.
Senate Eyes Bipartisan Introduction of the Medical Nutrition Equity Act (H.R. 6892)
GLI is actively engaged in efforts on Capitol Hill to support the Medical Nutrition Equity Act and to achieve bipartisan introduction of the legislation in the Senate. Thousands of children and adults live with digestive (i.e. gastrointestinal, liver or pancreatic disease) or inherited metabolic disorders (IMD) that inhibit their bodies from digesting or metabolizing typical foods. Left untreated, food can become toxic, or the body can fail to absorb necessary nutrients. These individuals must rely on medically necessary nutrition, such as highly specialized formulas, to treat for their condition and to maintain growth and health. The Medical Nutrition Equity Act would require insurers to cover these critical treatments for patients. Share your support here!
Medicare Multi-Cancer Early Detection Act Has Majority Support in House and Senate
Representatives Jodey Arrington (R-Texas) and Terri Sewell (D-Ala.) recently shared their appreciation to advocates for the tireless and incredible commitment to the promise of multi-cancer early detection. They reported that the bill has a filibuster-proof majority of support in the Senate, as well as 256 cosponsors in the House. They are committed to finding opportunities for final passage of the legislation. The next step is for the legislation to be heard and voted on in the committees of jurisdiction – the House Ways and Means Committee, House Energy and Commerce Committee, and the Senate Finance Committee. GLI strongly supports consideration of the Multi-Cancer Early Detection Act and final passage by Congress.
FDA Plans AdComm for Treatment of Primary Biliary Cholangitis (PBC)
GLI is pleased to learn that the U.S. Food and Drug Administration (FDA) has accepted the supplemental New Drug Application (sNDA) for obetacholic acid (Ocaliva) for the treatment of individuals with primary biliary cholangitis (PBC). The FDA has assigned a Prescription Drug User Fee Act (PDUFA) target action date of October 15, 2024 and is planning to hold an Advisory Committee meeting to discuss the application. Ocaliva received accelerated approval in 2016. This process is intended to satisfy the post-marketing requirements for FDA to confirm a clinical benefit in patients with PBC. GLI strongly supports allowing for in-person testimony from patients as part of the advisory process to ensure that patient experiences are heard and considered.
