Congress Reconvenes in September to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies – Liver Health Policy Update

Congress Reconvenes in September to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies – Liver Health Policy Update

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Congress Reconvenes in September to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies

GLI looks forward to hitting Capitol Hill to support liver health policy priorities, including access to care, medical nutrition, early screening and diagnosis, and protection against policies that devalue patients living with disabling conditions and diseases.


CDC Leadership in Turmoil

The Trump administration has ousted CDC Director Susan Monarez just one month into her tenure, sparking the resignation of four senior officials in protest. Monarez, who reportedly resisted pressure to endorse sweeping changes to U.S. vaccine policy, has refused to step down, with her attorneys calling the move “legally deficient” and warning of the politicization of public health. In response, Senator Bill Cassidy (R-LA), chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, called for the U.S. Department of Health and Human Services Advisory Committee on Immunization Practices (ACIP) to indefinitely postpone their September 18th meeting. GLI will continue to monitor the situation and ensure opportunities for patient input remain available in relevant CDC processes and decisions.


 

Milestone for “Beyond the Biopsy” in MASH

The FDA has accepted a proposal to replace invasive procedures with noninvasive technologies in clinical trials for drugs targeting MASH — a critical step toward accelerating treatment development for millions living with this silent condition. Next, the FDA will initiate a Qualification Plan by collecting and analyzing all relevant data and then potentially issue a “QP Determination Letter” identifying other data necessary for the sponsor to collect before the submission of a full qualification package (FQP), which will be submitted to the FDA to make a determination. Still, this is an important first step. Thanks to the relentless advocacy of GLI’s Beyond the Biopsy program, the Liver Action Network, and patient advocates, meaningful progress is being made toward safer diagnosis and monitoring for people with MASH.


HHS Launches ‘MAHA in Action’ Tracker

The Department of Health and Human Services (HHS) launched a new platform that seeks to showcase federal initiatives and state-led reforms in U.S. food, health, and public safety systems. Explore the platform here.


RFK Jr. Warns Docs of Liability if They Stray From CDC on Vaccines

The American Academy of Pediatrics’ (AAP) recent pediatric COVID-19 vaccine recommendations, which differ from those of the CDC, have raised concerns from HHS Secretary Robert F. Kennedy Jr., who responded with an oblique warning to any physicians who might follow the AAP’s advice. “AAP should … be candid with doctors and hospitals that recommendations that diverge from the CDC’s official list are not shielded from liability under the 1986 Vaccine Injury Act,” Kennedy posted this week on X. The AAP recommendations, released on Tuesday, included a strong endorsement of COVID-19 shots for children ages 6 months to under 2 years. The group also recommended COVID-19 shots for older children if the parents wish to do so. Those recommendations differ from the guidance issued by the CDC, which has said the vaccines are not specifically recommended for children, although they can still get them if parents and providers agree.


HHS Terminates NIH Program Aimed at Diversifying Biomedical Workforce

The Department of Health and Human Services is terminating a National Institutes of Health grant program that supports students from marginalized backgrounds in the biomedical sciences. HHS Secretary Robert F. Kennedy Jr. announced the elimination of the program — the Minority Biomedical Research Support Program — in a document posted to the Federal Register on August 26. Kennedy cited the program’s failure to comply with the Trump administration’s executive orders that prevent federal agencies from supporting diversity, equity, and inclusion-related activities. Experts say that the termination of the program, which provided everything from funding for undergraduates’ lab salaries to mentorship from senior investigators, could close off scientific careers for individuals who wouldn’t otherwise have access to research opportunities.


Supreme Court Allows Trump to End DEI Research at NIH

NIH research grants that promote diversity, equity, and inclusion and what the Trump administration calls “gender ideology extremism” can now be terminated, following a Supreme Court decision. By a 5-4 vote, the justices lifted an order a federal court judge in Boston issued forcing the NIH to restore funding for more than 1,700 grants focused on heart disease, HIV/AIDS, Alzheimer’s disease, alcohol and substance abuse, and mental health issues. The administration had requested relief on the grounds that the federal government shouldn’t be required to pay for research — which it said amounted to $783 million in grants — not aligned with President Donald Trump’s executive orders and his administration’s priorities.


GLI Advocates for CMS to Advance Coverage of Treatments for Obesity

GLI recently urged CMS to include access for Medicare recipients to evidence-based obesity treatments such as intensive behavioral therapy (IBT) and Food & Drug Administration (FDA) – approved obesity medications in an upcoming proposed rule. Doing so will enable the Medicare program to align with the prevailing medical consensus that obesity is a chronic disease. To view the letter from GLI, the Obesity Care Action Network, please reach out to Alyssa Davenport at adavenport@globalliver.org.


Congress Positioned to Take Action on Enhanced Premium Tax Credits

If Congress also allows enhanced premium tax credits (which help people buy insurance coverage on the marketplace) to expire this year, more people could lose coverage, compounding the financial strain on already vulnerable providers. According to the Kaiser Family Foundation, the combined effects of the new budget law and the expiration of the ACA enhanced tax credits, compared to a scenario where the enhanced subsidies are in place, will result in the greatest increases in Louisiana, Florida, and Arizona, where the uninsured rate is expected to increase by at least 5 percentage points. In 34 states and the District of Columbia, the uninsured rates could be 3% or more higher than would otherwise be the case. GLI is following this issue closely as Congress reconvenes. The National Association of Insurance Commissioners (NAIC), bipartisan state insurance regulators from across the country, are again calling on Congress to extend the enhanced premium tax credits as soon as possible to protect subsidized and unsubsidized marketplace enrollees from large-scale premium increases should the subsidies expire. To read the letter to Congressional leaders, please reach out to Alyssa Davenport at adavenport@globalliver.org.


Senators Cassidy and Van Hollen Introduce the Cure Hepatitis C Act
GLI proudly supports legislation (S.1941) introduced by Senators Bill Cassidy (R-LA) and Chris Van Hollen (D-MD) aiming to implement a nationwide elimination program for the hepatitis C virus (HCV) in the United States. The bipartisan bill prioritizes patient health and safety, advances a national plan to eliminate hepatitis C, and seizes an opportunity to end a global health crisis through screening, diagnosis, and treatment. Since curative treatments became available over a decade ago, GLI has advocated for a national strategy to eliminate this now-treatable infectious disease. 

GLI’s statement can be found here. View AASLD’s action alert to help gather additional Senate co-sponsors. To view the letter of support, please reach out to Alyssa Davenport at adavenport@globalliver.org.


 

GLI Works With Congress to Protect and Advance Veterans’ Health

GLI, in close coordination with congressional staff, has worked tirelessly to ensure that veterans diagnosed with MASH/NASH have no barriers to their care and treatment. GLI and patients with liver disease are very concerned about the Veterans Affairs (VA) biopsy requirement, which is contrary to the label from the Food and Drug Administration and clinical guidelines. After extensive advocacy work, we are thrilled to see that the reports accompanying the House version of the Military Construction, Veterans Affairs, and Related Agencies Appropriations Act and now the Senate version include language that advances GLI’s efforts to remove invasive biopsy requirements for veteran patients with a MASH/NASH diagnosis. We are extremely thankful to the members of Congress and staff who worked with us to make this happen. Check out the full statement here.

GLI Works With Congress To Protect Veterans Health (2)

As part of GLI’s Beyond the Biopsy initiative, GLI and its partners sent a letter to the VA. GLI and AASLD also sent a follow-up letter to the VA calling for coverage consistent with clinical guidelines. Most recently, GLI sent letters to commercial payers whose policies restricted access to care based on flawed criteria, including Select Health of Utah, BCBS of Mississippi, Elevance Health (Anthem/CarelonRx), and Excellus BCBS. We are encouraged that several insurers have been responsive to GLI’s request for reconsideration.

We continue to encourage signatures here on a petition to all payers calling for coverage without biopsy for steatotic liver disease (SLD). GLI also urges advocates to contact their legislators to request the VA take steps to increase efforts to screen, diagnose, and treat veterans with MASH/NASH using non-invasive diagnostics and FDA-approved treatments, similar to Tricare, the Department of Defense’s (DoD) health program for active duty military members, their families, and retirees, and provide a briefing to the Committee on these efforts.


 

September Key for Congressional Appropriations Process 

Despite the White House’s preliminary fiscal year (FY) 2026 budget request outlining deep cuts to health and other non-defense discretionary programs, the Senate Appropriations Committee has advanced a bill funding the U.S. Department of Health and Human Services (known as the Labor/HHS bill) that is more generous than the President’s budget. Notably, funding levels for viral hepatitis at the CDC were not decreased in the Senate version. The Senate version also rejected proposed massive cuts to the NIH. GLI is encouraged that the report accompanying the Senate bill clearly articulates the importance of addressing liver-related challenges for health, such as:

  • Deadliest cancers, liver (including cholangiocarcinoma);
  • Vaccines for children, including hepatitis B;
  • Biliary Tract Cancers;
  • Liver Cancer;
  • Co-infection of hepatitis B and HIV, with emphasis that liver disease is a leading cause of death for people living with HIV;
  • Metabolic Dysfunction-Associated Steatotic Liver Disease [MASLD] Study;
  • Vaccination and Screening for Hepatitis B;
  • National Perinatal Hepatitis B Prevention Program, emphasizing preventing chronic liver disease and liver cancer;
  • Strategic Plan for Trans-NIH Research to Cure Hepatitis B;
  • Development of point-of-care tests for HBV, HDV, and the cancers caused by these viruses;
  • Obesity as a disease, requiring comprehensive treatment.

GLI will continue to advocate for fully funded programs supporting liver health as Congress reconvenes in September. 


Additional Bills Benefiting Liver Patients

GLI is closely monitoring the reintroduction of legislation that helps patients access and afford the health care they need. We will continue to update this list. A few bills reintroduced so far include:

  • Living Donor Protection Act (S.1552/H.R. 4583)
    • Ensures living donors do not face discrimination from insurance companies, codifies Department of Labor (DOL) guidance that covers living donors under the Family Medical Leave Act (FMLA) in the private and civil service, removes barriers to organ donation, etc.
  • Accelerating Kids’ Access to Care Act (S. 742/H.R.1509)
    • Improves children’s access to needed out-of-state health care by streamlining the Medicaid provider screening and enrollment process.
  • Medicare Multi-Cancer Early Detection and Screening Act (H.R.842/S.339
    • Allows Medicare to cover simple blood tests to screen patients for cancer, leading to early diagnosis and treatment.
  • HELP Copays Act (S.864)
    • Requires health care insurers and pharmacy benefit managers (PBMs) to count payments they receive on a patient’s behalf, including payments from nonprofit organizations or drug manufacturers, toward the patient’s annual deductibles and out-of-pocket limit.
  • Seniors’ Access to Critical Medications Act (H.R.2484)
    • Allows Medicare patients to receive essential medications by mail or have caregivers and family members pick them up on their behalf. Reported favorably out of committee on April 29 in the House Energy and Commerce Committee.
  • Pharmacy Benefit Manager (PBM) Transparency Act (S.526)
    • Bans deceptive and unfair pricing schemes, prohibits arbitrary clawbacks of payments made to pharmacies and requires PBMs to report to the FTC on how much money they make through spread pricing and pharmacy fees.
  • Capping Prescription Costs Act (S.529)
  • Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R.1520/S.1782
    • Passed the House. Take action to support Senate passage here!

 

Upcoming Events:

  • GLI Quarterly Policy Update, virtual
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  • Saturday, September 20: GLI’s Liver Health Symposium, Minneapolis, MN, UA
    • This CME program is dedicated to empowering community members, patients, caregivers, healthcare providers, and advocates with the knowledge and resources needed to improve liver health outcomes. Register
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TITLE NEEDED – Pediatric and Rare Liver Diseases News

TITLE NEEDED – Pediatric and Rare Liver Diseases News

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 Driving Progress in Rare Liver Disease

Patient Story Feature: 

Commemorating International PBC Awareness Day

In recognition of International PBC Awareness Day on September 7, we are highlighting Catarra Simmons, an emerging patient advocate for PBC. Living in rural Mississippi, where resources for rare liver diseases are limited, Catarra’s journey underscores the need for awareness and support. 

Primary Biliary Cholangitis (PBC) is a rare, chronic autoimmune liver disease that slowly damages the bile ducts, leading to inflammation, scarring, and, over time, liver failure. Symptoms like relentless itching, fatigue, and jaundice can feel invisible to the outside world, yet they deeply affect patients’ daily lives.

Catarra Simmons

Catarra’s story sheds light on what it means to navigate finding the right care team, treatment, and the loneliness of living with PBC. Her ability to find strength in connection is a testament to why International PBC Awareness Month matters: because awareness, research, and community are critical for patients, providers, and advocates working together to improve care.


 

New study strengthens the case for early intervention of second-line therapy in primary biliary cholangitis (PBC) 

With new second-line therapy options emerging for PBC, timely access is more critical than ever. A recent study published in BMC Gastroenterology demonstrates that physicians can reliably determine by six months, rather than waiting a full year, whether Ursodeoxycholic acid is working effectively. This evidence removes uncertainty, empowering doctors to recommend second-line therapy sooner and giving patients a clearer, faster path to the right treatment. Importantly, it also strengthens the case for payers and policymakers to support earlier reimbursement for second-line therapies, ensuring that patients are not left waiting while their disease progresses.


     

    Why Immune system testing is important in rare cases of Autoimmune hepatitis 

    Autoimmune hepatitis (AIH) is usually thought of as a liver condition where the body’s immune system attacks the liver and causes inflammation and long-term damage if left untreated. However, a recent study in Digestive and Liver Diseases shows that in some cases, AIH may be linked to broader problems with the immune system, called immune dysregulation. Children and adults who also have unusual infections, blood disorders, or skin issues could have a more complex case of AIH, meaning that their condition might affect the whole body, rather than just the liver. For patients and families, this research is a valuable resource, highlighting the importance of discussing immune system testing, especially when AIH presents in atypical ways.


     

    New investment in treatment for primary sclerosing cholangitis (PSC)

    The Critical Path Institute’s Translational Therapeutics Accelerator (TRxA) awarded $473,000 to Dr. Stan van de Graaf and Dr. Matthias Versele’s team to develop a novel therapy for PSC, a rare liver disease with no approved treatments, often leading to liver failure and gut complications. Early research from Dr. van de Graaf’s team shows that blocking NTCP, a key protein that transports bile acids into the liver, can reduce harmful bile acid buildup and improve gut health. This discovery is particularly meaningful for PSC patients who frequently suffer from inflammatory bowel disease (IBD). This funding is a critical step in moving innovative science closer to patients who urgently need new therapy options, and we are thrilled to celebrate this milestone while amplifying the potential of this research.


     

    ART4 for Alagille syndrome shows early promise

    Arnatar Therapeutics’ ART4 has received FDA Orphan Drug and Rare Pediatric Disease designations. This potential disease-modifying therapy targets the missing protein that causes ALGS, a rare genetic disorder leading to severe liver damage and other life-threatening complications early in life. In animal studies, ART4 restored healthy bile duct development and improved liver function, a promising step toward a therapy that could change the course of this disease.


     

    Introducing GLI’s Inaugural Patient & Scientific Advisory Council! 🌟

    We are proud to launch our Patient and Scientific Advisory (PSA) Council, bringing together leading patient advocates, clinicians, and researchers from across the liver health community.

    This diverse group will guide GLI’s education, hashtag#advocacy, and training programs — ensuring every initiative is scientifically sound and deeply rooted in lived experience.

    Thank you to our founding members for their leadership and service. Together, we’re building a stronger, more inclusive future for liver health.

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    Global Liver Institute’s Liver Health Symposium is Next Month
    Global Liver Institute’s Liver Health Symposium is coming to Minneapolis, MN on Saturday, September 20, 2025—and you’re invited! This FREE, in-person event is open to both community members/patients and healthcare providers, with two distinct tracks designed to meet your needs.

    For Community Members & Patients:
    Learn how to protect your liver, understand your risk, and take action for your health. Hear from local healthcare experts and patient advocates, explore educational health booths, ask questions in live Q&A sessions, and receive a free liver screening.

    For Healthcare Providers:
    Join leading experts from Mayo Clinic and other top institutions to improve your knowledge of liver disease detection, management, and treatment. Earn free CME credits while gaining practical tools to improve patient care and participate in a provider-only workgroup focused on advancing liver care delivery.

    LH Save The Date (3)

    Don’t miss this opportunity to get informed, empowered, and connected.


     

    Upcoming Events


                             

                            For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.

                            Patient Story Feature: Catarra Simmons’ Journey with PBC and Meeting Another PBC Patient for the First Time

                            Patient Story Feature: Catarra Simmons’ Journey with PBC and Meeting Another PBC Patient for the First Time

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                            Patient Story Feature: Catarra Simmons’ Journey with PBC and Meeting Another PBC Patient for the First Time

                            I started itching in 2022. It kept me awake at night, and I scratched until my skin was raw to the touch. I would itch uncontrollably, especially when I got hot, and I didn’t understand what was happening to me. Over time, my skin tone grew darker, and the whites of my eyes began turning yellow. I also lost a significant amount of weight, some of which I thought was simply because I wasn’t snacking as much as I used to. I have since realized that all of these changes were because of Primary Biliary Cholangitis (PBC).

                            Catarra Simmons
                            Catarra And Cecilia

                            Initially, I went to the doctor because I thought the itching was caused by an allergic reaction to a medication I had previously been prescribed. A nurse practitioner at my local clinic ran some blood work and told me that my liver enzymes and potassium were elevated, which was surprising because I never expected anything to be wrong with my liver. I had to go back every two weeks for about two months for more blood work, and I was eventually referred to a GI specialist because my liver enzymes kept rising. After what felt like forever, I got a liver biopsy and was diagnosed with PBC.

                            It was such a relief to finally have a diagnosis, but the itching was still relentless. My first GI specialist sent me to a dermatologist because the medication he prescribed wasn’t working. But with pruritus, the itch was quite literally unreachable, and nothing the dermatologists prescribed helped either. I struggled to get my GI specialist to truly listen to me, and I didn’t feel like I was receiving proper care. Since my GI didn’t seem to take my concerns seriously, my husband and best friend encouraged me to find another doctor. I went from Mississippi to Colorado and found my current liver specialist, who has been wonderful. He kept me on Urso and adjusted some of my other medications, constantly checking in on me to make sure they were working. That care helped tremendously with the itching.

                            Still, PBC is progressive, and not knowing what the future holds can feel isolating. On top of that, my husband was recently diagnosed with MS, and balancing everything can be overwhelming. Because this disease is so rare, I didn’t know anyone else who could truly relate to what I was going through.

                            When I first learned about PBC, I searched the Mayo Clinic website to see what it was and who it normally affects. I realized I wasn’t the typical patient. Most people diagnosed with PBC are middle-aged white women between 40 and 60 years old—not someone like me. It felt isolating, and I didn’t think I would ever meet someone else who didn’t fit the typical mold of a PBC diagnosis.

                            That changed in February of this year, when I was able to meet another PBC patient in person for the first time. We sat down for a meal and found so many things we could relate to; we talked about the itching, our families, and what it was like to be diagnosed at a young age. I left that conversation feeling lighter, more understood, and less alone. Living with PBC changes every day, but meeting others like me has shown me that I don’t have to face it alone.

                            On International PBC Day, I want people to know this disease is life-changing and deserves more attention. But I also want patients to know: you’re not alone, even if it feels that way.

                            I’m Alive Because of a DCD Organ. The Truth Deserves to Be Heard.

                            I’m Alive Because of a DCD Organ. The Truth Deserves to Be Heard.

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                            I’m Alive Because of a DCD Organ. The Truth Deserves to Be Heard.

                            On February 13, 2024, I became one of the thousands of people whose lives have been saved by donation after circulatory death (DCD) transplantation.

                            Only 3 in 1,000 people who register as organ donors are eligible to donate their organs at the time of death. In the United States, 13 people die each day waiting for an organ transplant. Our society has to maintain a sufficient pool of potential donors.

                            Organ donation and transplantation are highly complicated processes. Consent, procurement, transportation, and preparation for surgery must all be closely coordinated in a tight time frame. Thanks to rigorous protocols and oversight, complications are exceedingly rare despite the complexity of the system. When incidents do occur, they should be thoroughly investigated and analyzed to prevent them from happening in the future.

                            However, recent discourse, including reporting and Congressional testimony, has misrepresented the organ donation system in a manner that, beyond demanding accountability, poses a serious threat to the more than 100,000 Americans waiting for a life-saving organ donation. Framing organ donation as a business that prioritizes numbers over the safety of potential donors is a false and dangerous narrative.

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                            Author: Sophie Hansen

                            A3 Alum

                            2x Liver Transplant Recipient

                            Hepatology and Pediatric Organ Transplant Researcher

                            SPLIT, AASLD, F4LC, DonorConnect

                            I am the recipient of a DCD liver. I also do research alongside leading experts in hepatology and pediatric transplantation. Standing at the intersection of patient and provider, I have the privilege and responsibility to speak for both sides, advocate for patients who are still waiting, and honor the legacy of donors. Unfortunately, myths about organ donation and DCD transplantation are common. It is critical to clarify these misconceptions and present the facts:

                            1. Organ procurement is completely separate from medical care. A patient’s physician and family will make the decision to withdraw life support based on the clinical situation. Only after this decision is made are members of the organ recovery team allowed to approach the family, and this team is trained to provide support and request informed consent, not coerce a decision.
                            2. The dignity and safety of donors and donor families are prioritized by the procurement process. All donors are protected under HIPAA laws. Only information that is pertinent to medical decision-making is provided to the recipient’s care team. No identifying information is ever shared with the recipient unless explicitly permitted by the donor family. Federal OPTN policy requires every OPO to establish a plan that respects diverse cultures and guides how staff support donor families during bereavement. OPO staff provide grief-informed services from professional counselling and Honor Walk ceremonies to post‑donation memorial events and facilitated donor/recipient communication that help families find meaning in their loss.
                            3. DCD donation is governed by rigorous clinical protocols. OPTN Policy 2.15 requires:
                              •  Formal agreements between every OPO and hospital that participates in DCD recovery, including written protocols that spell out roles for evaluation, withdrawal of treatment, death declaration, organ recovery, and placement.
                              • Independent consent procedures — including special safeguards when the patient can still communicate — to ensure truly informed authorization for any pre‑death interventions.
                              • Before ventilation is stopped, the OPO leads a timeout to verify patient ID, the withdrawal plan, team roles, and a fallback care plan if donation cannot proceed.
                              • Recovery personnel may not be present for withdrawal or death declaration; the clinician who pronounces death plays no role in organ recovery.
                              • Organs are recovered only after circulatory death is confirmed and a predetermined waiting period has passed to rule out auto‑resuscitation. 
                            4. DCD has strengthened our organ donation and transplantation system. In 2024, more than 7,200 DCD donors accounted for 43% of all deceased donors, up from single‑digit percentages just a decade ago. This influx is leading to shorter wait times and creating opportunities for patients unlikely to receive a traditional donation after brain death (DBD) organ. Innovations such as normothermic regional perfusion and machine perfusion continue to make DCD organs that were previously deemed unsuitable for transplant safer and more durable.

                                These are not simply numbers. Each organ donated is a life extended, filled with opportunity, relationships, and impact. As members of the public rescind their organ donation status in response to the publicization of rare systematic failures that are not representative of the system, real lives and families will be affected.

                                Well-established psychology concepts elucidate the harms of reckless discussion of organ donation. The availability heuristic is a cognitive bias that leads individuals to make decisions based on the information that is most readily available in their memory, rather than all relevant information. When events receive news coverage, they are easily recalled by the public, even if similar events occur more frequently without coverage. This is exacerbated by confirmation bias, or people’s tendency to process the information they encounter that is consistent with their existing beliefs. In this situation, individuals with mistrust of organ donation or the medical institution are likely to have their fears validated, while others may begin to believe that organ donors’ lives are regularly threatened due to their donation status.

                                Journalists have an obligation to present the whole truth, not a snapshot of alarming anecdotes, but a comprehensive picture that includes all relevant perspectives and context. Sensationalist media incite public fear that risks undoing decades of progress in ethical transplant expansion.

                                Global Liver Institute Launches Inaugural Patient and Scientific Advisory Council

                                Global Liver Institute Launches Inaugural Patient and Scientific Advisory Council

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                                Global Liver Institute Launches Inaugural Patient and Scientific Advisory Council

                                (Washington, D.C., August 20, 2025) – Global Liver Institute (GLI), the premier patient-driven liver health nonprofit, has launched its inaugural Patient and Scientific Advisory Council (PSA Council) to strengthen organizational leadership and ensure that all programmatic work is scientifically sound and deeply rooted in patient experience.

                                The PSA Council brings together a diverse group of leaders in liver health — both patients and clinical experts — to guide GLI’s education, advocacy, and training initiatives. By combining real-world insights with scientific rigor, the Council helps ensure that GLI’s efforts remain relevant, evidence-based, and aligned with the current needs of the field and community.

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                                “At GLI, we believe our work should be guided by people who navigate liver health every day — whether they care for patients, manage their own health, or support loved ones,” said Larry R. Holden, President and CEO of GLI. “The PSA Council will keep us fixed on our north star and sharpen how we serve patients in every project, partnership, and program.”

                                Patient members of the PSA Council contribute their lived experiences as patients and caregivers, offering crucial perspectives on today’s most pressing challenges in liver care. Scientific members — including physicians, researchers, nurses, and advanced practice providers — provide clinical and scientific insights, verify the integrity of GLI’s resources, and highlight opportunities to advance the field.

                                “We have a strong group with a breadth of expertise and experience in liver disease,” shared Lily Benig, MPH, the facilitator of the PSA Council and GLI’s Associate Director of Science & Public Health. “I’m looking forward to collaborating with this Council to elevate the quality and impact of our work at GLI.”

                                The inaugural PSA Council is comprised of the following esteemed members: Saima Ajaz, MD; Terry D. Box, MD; Lionel A. Kankeu Fonkoua, MD; Karen Hoyt; Ash Kyasima-Migadde; Wendy Lo; Manuel Rodriguez-Davalos, MD; Arun Sanyal, MD; Stephen Silva-Brave, LMSW, LCDC-I; and Melaine D. Smith.

                                Liver disease affects over 1.5 billion people globally, with rising rates of metabolic dysfunction-associated fatty liver disease (MASLD) and liver cancer in particular. In this context, ensuring the real-world relevance and scientific credibility of liver health efforts is more essential than ever.

                                The PSA Council will serve as a cornerstone of GLI’s commitment to responsive, inclusive, and impactful programming.

                                About Global Liver Institute 
                                Global Liver Institute (GLI) is a 501(c)3 nonprofit organization founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. Operating globally, GLI is committed to solving the problems that matter to liver patients and equipping advocates to improve the lives of individuals and families impacted by liver disease. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org.

                                Congress Reconvenes in September to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies – Liver Health Policy Update

                                Congress Begins Work to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies – Liver Health Policy Update

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                                Congress Begins Work to Advance Appropriations Bills, Looks Ahead to Possible Package of Health Policies

                                GLI was pleased to see liver health priorities included in appropriations bills and intends to push Congress to take action on other pending health policy priorities.


                                GLI Works With Congress to Protect and Advance Veterans’ Health

                                GLI, in close coordination with congressional staff, has worked tirelessly to ensure that veterans diagnosed with NASH/MASH have no barriers to their care and treatment. GLI and patients with liver disease are very concerned about the Veterans Affairs (VA) biopsy requirement, which is contrary to the label from the Food and Drug Administration and clinical guidelines. After extensive advocacy work, we are thrilled to see that the reports accompanying the House version of the Military Construction, Veterans Affairs, and Related Agencies Appropriations Act and now the Senate version include language that advances GLI’s efforts to remove invasive biopsy requirements for veteran patients with a NASH/MASH diagnosis. We are extremely thankful to the members of Congress and staff who worked with us to make this happen. Check out the full statement here.

                                GLI Works With Congress To Protect Veterans Health (2)

                                As part of GLI’s Beyond the Biopsy initiative, GLI and its partners sent a letter to the VA. GLI and AASLD also sent a follow-up letter to the VA calling for coverage consistent with clinical guidelines. Most recently, GLI sent letters to commercial payers whose policies restricted access to care based on flawed criteria, including Select Health of Utah, BCBS of Mississippi, Elevance Health (Anthem/CarelonRx), and Excellus BCBS. 

                                We continue to encourage signatures here on a petition to all payers calling for coverage without biopsy for steatotic liver disease (SLD). GLI also urges advocates to contact their legislators to request the VA take steps to increase efforts to screen, diagnose, and treat veterans with MASH/NASH using non-invasive diagnostics and FDA-approved treatments, similar to Tricare, the Department of Defense’s (DoD) health program for active duty military members, their families, and retirees, and provide a briefing to the Committee on these efforts.


                                 

                                Congressional Appropriations Process Begins

                                Despite the White House’s preliminary fiscal year (FY) 2026 budget request outlining deep cuts to health and other non-defense discretionary programs, the Senate Appropriations Committee has advanced a bill funding the U.S. Department of Health and Human Services (known as the Labor/HHS bill) that is more generous than the President’s budget. Notably, funding levels for viral hepatitis at the CDC were not decreased in the Senate version. The Senate version also rejected proposed massive cuts to the NIH. GLI is encouraged that the report accompanying the Senate bill clearly articulates the importance of addressing liver-related challenges for health, such as:

                                • Deadliest cancers, liver (including cholangiocarcinoma);
                                • Vaccines for children, including hepatitis B;
                                • Biliary Tract Cancers;
                                • Liver Cancer;
                                • Co-infection of hepatitis B and HIV, with emphasis that liver disease is a leading cause of death for people living with HIV;
                                • Metabolic Dysfunction-Associated Steatotic Liver Disease [MASLD] Study;
                                • Vaccination and Screening for Hepatitis B;
                                • National Perinatal Hepatitis B Prevention Program, emphasizing preventing chronic liver disease and liver cancer;
                                • Strategic Plan for Trans-NIH Research to Cure Hepatitis B;
                                • Development of point-of-care tests for HBV, HDV, and the cancers caused by these viruses;
                                • Obesity as a disease, requiring comprehensive treatment.

                                 

                                GLI will closely follow the House process when Congress reconvenes in September. 


                                 

                                GLI is Deeply Concerned About Patient Access to Care, Particularly in Rural Hospitals

                                The reconciliation bill, H.R.1, included deep Medicaid cuts that are expected to reduce federal funding for rural areas by about $137 billion. These cuts will look different from state to state (KFF analysis), but the overall impact will likely include fewer people with health insurance coverage and severe financial strain on rural hospitals that already operate on thin margins. As rural hospitals make up at least a third of all hospitals in most states, this impact will be widespread. When these hospitals lose funding but are still expected to treat patients — especially those without insurance — they may be forced to lay off staff, cut services, delay facility upgrades, or, in some cases, shut down entirely.

                                To help offset these impacts, lawmakers created a $50 billion Rural Health Fund — a fraction of what rural areas are projected to lose. Only half the fund will be distributed across states with approved applications, and the rest will be awarded through an undetermined process. Notably, in conversations with stakeholders, CMS Administrator, Dr. Oz, has indicated that the Rural Health Fund should be used to make long-term investments in technologies to improve efficiency and address issues with cybersecurity, rather than being used to stopgap funding cuts. Adding to the challenge, the fund is temporary, while many of the Medicaid cuts are permanent.

                                 Another source of concern is the possible expiration of the Medicare-Dependent Hospital (MDH) program, through which Medicare provides additional payments to small rural hospitals that treat a high share of Medicare patients. These payments are set to end on September 30, 2025, unless Congress acts. Last week, CMS warned that if the program is not extended, rural hospitals could lose an additional $500 million in 2026 alone. More than half of MDH-designated hospitals already had negative margins in 2023, and losing this support could push many over the edge. 

                                GLI is very concerned that the combined effects of the Medicaid cuts, the uncertain rollout of the Rural Health Fund, and the looming expiration of the MDH program could be devastating for rural hospitals and for the patients they serve. Patients may find it harder to access care close to home, with fewer services, longer travel times, or even no local hospital at all. If Congress also allows enhanced premium tax credits (which help people buy insurance coverage on the marketplace) to expire, even more people could lose coverage, compounding the financial strain on these already vulnerable providers. Therefore, GLI will advocate for Congress and the administration to do everything in their power to address the challenges facing rural hospitals and the patients they serve.


                                U.S. HHS Pulls $500M in Funding for Vaccine Development

                                On August 5, the U.S. Department of Health and Human Services announced it would cancel contracts and pull funding for 22 projects investigating mRNA vaccines to fight respiratory viruses. This follows several decisions from the department and Secretary Robert F. Kennedy, Jr. that have undermined trust in vaccines – a key tool in the prevention of viral hepatitis B and D and liver cancer. GLI will continue to monitor the situation and advocate for lifesaving and essential immunizations to protect liver health and especially for our patients who are often immunocompromised.


                                Senators Cassidy and Van Hollen Introduce the Cure Hepatitis C Act
                                GLI proudly supports legislation (S.1941) introduced by Senators Bill Cassidy (R-LA) and Chris Van Hollen (D-MD) aiming to implement a nationwide elimination program for the hepatitis C virus (HCV) in the United States. The bipartisan bill prioritizes patient health and safety, advances a national plan to eliminate hepatitis C, and seizes an opportunity to end a global health crisis through screening, diagnosis, and treatment. Since curative treatments became available over a decade ago, GLI has advocated for a national strategy to eliminate this now-treatable infectious disease. We look forward to working closely with Congress and the current administration to get it over the finish line. 

                                GLI’s statement can be found here. View AASLD’s action alert to help gather additional Senate co-sponsors.


                                The House and Senate Reintroduce TROA, Administration Reported to Be Considering a Plan for Coverage

                                GLI applauds the reintroduction of the bipartisan Treat and Reduce Obesity Act (S.1973/H.R.4231), most recently reintroduced in the House with 12 original sponsors (15 total) on the heels of Senate reintroduction by Senators Bill Cassidy (R-LA) and Ben Ray Luján (D-NM). Within both the political and scientific realms, there is growing recognition of obesity as a chronic disease and the need to address and treat obesity like any other chronic disease. A robust body of research demonstrates the connection between obesity and serious liver diseases, such as metabolic dysfunction-associated steatohepatitis (MASH), formerly known as nonalcoholic steatohepatitis (NASH), making access to treatment a top priority for GLI and patients. This bipartisan legislation would expand coverage of new health care specialists and chronic weight management medications for Medicare recipients. It will also work to mitigate the obesity epidemic by providing regular screenings. GLI’s most recent statement can be found here.

                                Additionally, the Washington Post recently reported that the administration is working on “an experiment to cover weight loss drugs under Medicare and Medicaid, potentially benefiting millions of Americans struggling with obesity.” GLI will continue to advocate for the administration to take steps to advance coverage of comprehensive obesity care, including medication. The supportive response to the Washington Post article from the Obesity Care Action Network, of which GLI is a member, can be found here.


                                Senate Help Discusses PBMs In The Context Of Health Care Affordability

                                On July 31, the Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing (TRP summary) entitled “Making Health Care Affordable: Solutions to Lower Costs and Empower Patients.” Members questioned the role of pharmacy benefit managers (PBM) in increasing health care costs, stirring bipartisan support for increasing transparency throughout the health care system. Additionally, the discussion highlighted the multifaceted nature of the nation’s health care system, and Members stressed the need to analyze all actors when considering reform efforts.


                                Policy Lessons from The Lancet Commission on Liver Cancer

                                The Lancet recently released a comprehensive commission on hepatocellular carcinoma (HCC), the most common form of liver cancer, highlighting that more than 60% of cases of liver cancer are preventable and that annual new cases are expected to double between 2022 to 2050. The Commission recommended that a sustained reduction of age-standardized incidence rate of 2-5% could prevent this trajectory. The report emphasized the role of policy and legislative changes to reduce the burden of liver cancer that align with GLI’s ongoing priorities:

                                • Access to liver cancer screening
                                • Focus on prevention, including vaccination for viral hepatitis and policy measures that reduce consumption of alcohol and unhealthy foods
                                • Investment in awareness campaigns about liver health

                                Read more from The New York Times (gift link).


                                Additional Bills Benefiting Liver Patients

                                GLI is closely monitoring the reintroduction of legislation that helps patients access and afford the health care they need. We will continue to update this list. A few bills reintroduced so far include:

                                • Living Donor Protection Act (S.1552/H.R. 4583)
                                  • Ensures living donors do not face discrimination from insurance companies, codifies Department of Labor (DOL) guidance that covers living donors under the Family Medical Leave Act (FMLA) in the private and civil service, removes barriers to organ donation, etc.
                                • Accelerating Kids’ Access to Care Act (S. 742/H.R.1509)
                                  • Improves children’s access to needed out-of-state health care by streamlining the Medicaid provider screening and enrollment process.
                                • Medicare Multi-Cancer Early Detection and Screening Act (H.R.842/S.339
                                  • Allows Medicare to cover simple blood tests to screen patients for cancer, leading to early diagnosis and treatment.
                                • HELP Copays Act (S.864)
                                  • Requires health care insurers and pharmacy benefit managers (PBMs) to count payments they receive on a patient’s behalf, including payments from nonprofit organizations or drug manufacturers, toward the patient’s annual deductibles and out-of-pocket limit.
                                • Seniors’ Access to Critical Medications Act (H.R.2484)
                                  • Allows Medicare patients to receive essential medications by mail or have caregivers and family members pick them up on their behalf. Reported favorably out of committee on April 29 in the House Energy and Commerce Committee.
                                • Pharmacy Benefit Manager (PBM) Transparency Act (S.526)
                                  • Bans deceptive and unfair pricing schemes, prohibits arbitrary clawbacks of payments made to pharmacies and requires PBMs to report to the FTC on how much money they make through spread pricing and pharmacy fees.
                                • Capping Prescription Costs Act (S.529)
                                • Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R.1520/S.1782)
                                  • Passed the House. Take action to support Senate passage here!

                                 

                                Upcoming Events:

                                • GLI Quarterly Policy Update, virtual
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                                • Saturday, September 20: GLI’s Liver Health Symposium, Minneapolis, MN, UA
                                  • This CME program is dedicated to empowering community members, patients, caregivers, healthcare providers, and advocates with the knowledge and resources needed to improve liver health outcomes. Register
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                                United Voices for Liver Health – Fatty Liver Disease News

                                United Voices for Liver Health – Fatty Liver Disease News

                                Fatty Liver Disease News Logo Horizontal V1

                                United Voices for Liver Health

                                A Note from the Director, Dr. Sharon H. Jaycox

                                Advocacy in Liver Disease: Bridging Knowledge, Empathy, and Action Uniting Patients and Doctors Through Education and Shared Experience

                                I recently participated in a retreat alongside several members from another advocacy group with which I am actively engaged. Within that organization, our central mission for advocacy lies in the realms of health, education, and economics. That distinction prompted me to reflect on GLI’s mission and our responsibilities as advocates, and to consider what true advocacy means within the liver community. Advocacy in the context of liver disease serves many purposes. At its core, it is about championing the rights, needs, and voices of those affected. For patients, advocacy can mean the difference between isolation and empowerment. For doctors, it represents a commitment to continual learning and compassionate care. And for the healthcare system, it is a catalyst for policy change, research funding, and better outcomes.

                                For patients, the first step in effective advocacy is education. Patients equipped with knowledge about their diagnosis, treatment options, and prognosis are better positioned to engage in meaningful conversations with their healthcare team. Patients should be encouraged to ask questions, seek second opinions, and participate actively in their care. These skills are not innate; they must be cultivated through support and education. Workshops, webinars, and patient navigators can all play vital roles in developing patient confidence and autonomy. Peer support is invaluable. Meeting others who share similar experiences offers emotional relief and practical advice and breaks down the sense of isolation that liver disease often brings. Advocacy groups, both in-person and online, provide a sense of belonging and community.

                                While patients are at the heart of advocacy, doctors hold a unique position of influence. Their voices carry authority, and their actions can shape both individual experiences and systemic change. Providers should not merely treat but truly listen. Understanding each patient’s story, their symptoms, struggles, and fears offers crucial insight that textbook knowledge cannot. By advocating for their patients, doctors challenge stigma, push for resources, and create an environment where individuals feel respected and valued. Advocacy means being willing to go beyond the confines of routine care. This could mean fighting for insurance coverage for necessary tests, supporting patients in accessing clinical trials, or simply making a call to expedite a referral. Doctors, as patient advocates, can become powerful allies in navigating the healthcare system’s complexities.

                                Each story matters, each voice counts, and every act of advocacy brings us closer to a world where liver disease no longer defines lives, but where lives define the future of liver health. Advocacy in liver disease requires ongoing commitment and collaboration from all involved. By empowering patients, educating providers, and uniting communities, we can ensure a future where liver disease is less isolating, less misunderstood, and truly conquerable.


                                 

                                Advocating for Steatotic Liver Disease on the Global Health Stage, with Larry Holden
                                As our work to elevate liver disease within global non-communicable diseases (NCDs) discussions continues, Global Liver Institute’s CEO Larry Holden shares his vision for advancing liver health around the world—and why steatotic liver disease can no longer be left out of the global health conversation, in an exclusive interview for HCPLive.


                                 

                                Emerging Insights and Information

                                Thyroid Function and MASLD Risk Stratification in Children with Obesity: A Non-Negligible Link

                                While research has demonstrated the linkage between metabolic dysfunction associated-steatotic liver disease (MASLD) and thyroid functioning in adults, this relationship has not been well-explored in children. A recent study conducted by the University of Campania Luigi Vanvitelli in Naples, Italy, has indicated that thyroid functioning is negatively affected by children with obesity, with more than one MASLD criterion. Understanding the relationship between MASLD and thyroid function is relevant to children with obesity and increased cardiometabolic risk. 


                                 

                                The Prevalence and Determinants of NAFLD and MAFLD and Their Severity in the VA Primary Care Setting

                                A diagnosis for MAFLD requires the presence of metabolic factors, whereas NAFLD indicates the lack of heavy alcohol consumption. With a change in nomenclature and criterion for diagnosis, researchers at the Baylor College of Medicine in Houston, Texas, randomly sampled 1510 participants among 2437 eligible Veteran patients to determine concordance between MAFLD and NAFLD nomenclature. Results from the study found concordance between NAFLD and the alternative MAFLD definition. NAFLD was present in 40% of Veterans registered in primary care; 9.4% of veterans had at least moderate hepatic fibrosis, with most having concurrent NAFLD.


                                 

                                Acute Fatty Liver of Pregnancy (AFLP): Practice Essentials, Pathophysiology, Epidemiology

                                AFLP is a serious condition caused by an accumulation of fat in the liver. Women who develop AFLP are likely to have a gene mutation that will result in a heterozygous long-chain 3-hydroxyacyl-coenzyme A dehydrogenase (LCHAD) deficiency. Since this gene is recessive, complications arise when the fetus is homozygous for this mutation and will, in turn, be unable to oxidize fatty acids. The mother will not be able to metabolize additional fatty acids and will experience hepatic strain. Despite being relieved by pregnancy, AFLP still has a high risk for high maternal and neonatal morbidity and mortality without prompt diagnosis and treatment. 


                                 

                                Liver Biopsy No Longer Required for Rezdiffra

                                A win for patients and advocates! Anthem health plans and their pharmacy benefit manager, CarelonRx, have removed the requirement for liver biopsy from their Rezdiffra policy coverage. Approximately 11.6 million lives will be impacted by this decision.


                                 

                                Spleen Stiffness Predicts the Risk of Liver-related Complications in Patients With Compensated Advanced Chronic Liver Disease 

                                Portal hypertension (PH) is a consideration for patients with compensated advanced chronic liver disease (cACLD). The gold standard for assessing portal hypertension is hepatic venous pressure gradient measurement. In a recent study, researchers found Spleen stiffness measurements (SSM) by transient elastography useful for predicting the risk of liver-related complications.


                                 

                                ⬇️ Tools and Resources ⬇️

                                The American Diabetes Association has posted the following: The ENLIGHTEN Phase 3 clinical trial, a study for people with metabolic dysfunction-associated steatohepatitis (MASH), is currently recruiting participants. ENLIGHTEN is a Phase 3 clinical trial program evaluating the safety and effectiveness of the investigational drug pegozafermin. Pegozafermin is a fibroblast growth factor-21 (FGF21) analog designed to mirror the activity profile and prolong the half-life of the native FGF21 hormone, which may address underlying metabolic issues that drive liver and cardiometabolic diseases, including MASH. Contact: enlighten@89bio.com or call 415.432.9270.


                                 

                                Dx Dialogues: Metabolic-associated steatohepatitis (MASH)

                                Global Liver Institute collaborated with Sharecare to create a MASH content destination center that provides healthcare providers with timely medical information, market trends, and more. Visit the resource center here.

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                                New Liver Disease Facebook Group 

                                Madrigal recently launched a private Facebook group called Taking on Fatty Liver and MASH Together. This group is a space for people affected by MASH to connect, share their experiences, and support one another on their journeys. You can find it at: 


                                 

                                Join Leading Experts at the Cardiometabolic Health Congress this October

                                We’re proud to announce our partnership with the 2025 Cardiometabolic Health Congress taking place October 23-25 in Boston! Join leading experts for cutting-edge research and clinical updates in cardiometabolic medicine. Use our exclusive promo code GLI100 to save $100 on your registration. Looking forward to connecting with colleagues and advancing patient care together!

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                                Global Liver Institute’s Liver Health Symposium is Next Month
                                Global Liver Institute’s Liver Health Symposium is coming to Minneapolis, MN on Saturday, September 20, 2025—and you’re invited! This FREE, in-person event is open to both community members/patients and healthcare providers, with two distinct tracks designed to meet your needs.

                                For Community Members & Patients:
                                Learn how to protect your liver, understand your risk, and take action for your health. Hear from local healthcare experts and patient advocates, explore educational health booths, ask questions in live Q&A sessions, and receive a free liver screening.

                                For Healthcare Providers:
                                Join leading experts from Mayo Clinic and other top institutions to improve your knowledge of liver disease detection, management, and treatment. Earn free CME credits while gaining practical tools to improve patient care and participate in a provider-only workgroup focused on advancing liver care delivery.

                                LH Save The Date (3)

                                Don’t miss this opportunity to get informed, empowered, and connected.


                                 

                                Upcoming Events


                                   

                                  Advocacy in Action: A Global Call to Address Liver Cancer – Liver Cancer News

                                  Advocacy in Action: A Global Call to Address Liver Cancer – Liver Cancer News

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                                  Advocacy in Action: A Global Call to Address Liver Cancer

                                  A Note from the Liver Cancers Program Director, Sarah Manes

                                  As the Liver Cancers Program Director at Global Liver Institute, I’m proud to share two important milestones in liver cancer advocacy that emphasize both the urgency and the opportunity we have before us.

                                  Global Spotlight: The Lancet Liver Cancer Commission

                                  The newly released Lancet Commission on hepatocellular carcinoma (HCC) is a powerful wake-up call to the global health community. It highlights that more than 60% of liver cancer cases are preventable through action on hepatitis, metabolic dysfunction-associated steatotic liver disease (MASLD), and alcohol use. Without intervention, HCC cases could double by 2050—reaching over 1.5 million new cases annually and 1.37 million deaths.

                                  The Commission’s findings are a strong push for meaningful change:

                                  • Early screening in high-risk populations (especially for MASLD and viral hepatitis)
                                  • Equitable access to care and treatment
                                  • Palliative care integration
                                  • Preventive policies (e.g., hepatitis vaccination, liver screening, alcohol pricing, food labeling)

                                  These are areas GLI has long championed—and where we are committed to accelerating progress.

                                  Patient Voices: JCO Global Oncology Study Featuring GLI

                                  Complementing the Commission’s data-driven urgency is a critical lens into the real-world lived experience of those affected. In a recent qualitative study published in JCO Global Oncology, liver cancer patients and caregivers reflected on their journeys—from diagnosis to decision-making and survivorship. GLI was honored to help connect several of these patients and families into this study. A special thanks to Liver Cancer Council member, Dr. Patricia Jones, who led the research on this important study.

                                  The study, “Patient and Caregiver Perspectives on Navigating Liver Cancer”, found that:

                                  • Many patients were unaware of liver cancer risk factors prior to diagnosis.
                                  • A lack of provider communication, screening, and timely referrals left them feeling isolated and uninformed.
                                  • There was a clear call for more culturally competent care, peer connection, and educational support throughout the care continuum.

                                  These findings clearly show that health systems change must be informed by patients’ voices, not just statistics. GLI remains committed to elevating those perspectives in everything we do—from policy to programming.

                                  Together, these two landmark publications paint a comprehensive picture: liver cancer is preventable, yet rising, and patients are too often left out of both the prevention and care narrative.

                                  At GLI, we help bring people together and make sure their voices are heard — linking data with human experience, policy with action, and communities with solutions. The time to act is now. And the time to center patients—always.

                                  Warm regards,
                                  Sarah Manes, Liver Cancers Program Director at GLI
                                  cancer@globalliver.org


                                   

                                  Global Liver Institute’s Liver Health Symposium is Next Month
                                  Global Liver Institute’s Liver Health Symposium is coming to Minneapolis, MN on Saturday, September 20, 2025—and you’re invited! This FREE, in-person event is open to both community members/patients and healthcare providers, with two distinct tracks designed to meet your needs.

                                  For Community Members & Patients:
                                  Learn how to protect your liver, understand your risk, and take action for your health. Hear from local healthcare experts and patient advocates, explore educational health booths, ask questions in live Q&A sessions, and receive a free liver screening.

                                  For Healthcare Providers:
                                  Join leading experts from Mayo Clinic and other top institutions to improve your knowledge of liver disease detection, management, and treatment. Earn free CME credits while gaining practical tools to improve patient care and participate in a provider-only workgroup focused on advancing liver care delivery.

                                  LH Save The Date (3)

                                  Don’t miss this opportunity to get informed, empowered, and connected.


                                   

                                  Emerging Insights

                                  The Roots of Wellness in Older Cancer Survivors 

                                  A new study done by Wendy Demark- Wahnefried and team found that in cancer survivors aged 65 and older, gardening reduces the risk of comorbidities. A clinical trial conducted from 2016 to 2022 with 381 participants found that vegetable gardens can improve physical and mental health in cancer survivors. Those who maintained a vegetable garden for one year, saw physical improvements in lower body strength, a 0.3 increase in fruit and vegetable intake, and an increase in healthy gut bacteria. These effects were amplified in individuals who were within 5 years of their cancer survival. 

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                                  New Drug Targets ‘Zombie Cells’ in Effort to Prevent Liver Disease, Cancer 

                                  In a study done by Tulane University, researchers developed a drug called 753b, which targets what are known as senescent cells. These cells permanently stop dividing but still remain metabolically active. This can cause buildups in tissue, which can damage it. 753b targets two types of proteins that senescent cells require to survive. This drug has been shown to reduce the amount of fat and scar tissue build up in the liver, which can reduce the risk of a number of liver diseases. The drug is a part of a larger class of senescent cell targeting drugs called senolytics. Those with metabolic dysfunction-associated steatotic liver disease or at risk of MASLD should consider speaking with their primary care provider for more information about 753b and its sister drugs.   


                                   

                                  The Role of Glucocorticoids in Hepatocellular Carcinoma 

                                  This study investigates the role glucocorticoids, a type of steroid hormone, affects HCC and patient prognosis. The study looked at genes related to glucocorticoid in tumor samples. Two subtypes were found to exhibit poorer prognosis. Both were found to have differences in immune cell types, revealing a potential immune response. Drug sensitivity analysis indicated that these two subtypes may respond better to drugs like Bortezomib and Dactinomycin. A prognostic model identified four glucocorticoid-related genes linked to HCC progression. DGIdb predictions showed these genes are targetable by various drugs. Immunohistochemistry confirmed altered expression of these genes in tumor tissues, underscoring their diagnostic and therapeutic potential.


                                   

                                  A Call to Reclassify the Delta Hepatitis Virus as an Orphan Disease

                                  Hepatitis D remains one of the most neglected and severe forms of viral hepatitis. A newly published article in Hepatology Communications, co-authored by GLI’s CEO, Larry Holden, makes a compelling case to reclassify HDV as an orphan disease, a move that could drive much-needed funding, research, and treatment access for the millions affected globally.

                                  At GLI, we believe that no liver disease should be left in the shadows. Greater awareness of HDV is essential to advancing liver health.


                                   

                                  ⬇️ Tools and Resources ⬇️

                                  Global Liver Institute has Partnered with Triage Cancer on Their Upcoming Webinars 

                                  We’re partnering with Triage Cancer on their upcoming webinar What to do when an Insurance Company Says “No”. This FREE webinar, happening on August 12, 2025 at 11am PT | 1pm CT | 2pm ET, will explain the appeals process for individual and employer-sponsored health plans, Medicare, and Medicaid. Triage Cancer’s webinar series discusses the practical and legal issues impacting people beyond diagnosis. Every webinar is open to the general public, and healthcare professionals can receive free continuing education.

                                  Triage Center Webinar Graphic

                                   

                                  Talking to Your Doctor About Hepatitis C

                                  With treatment, 95% of hepatitis C infections are curable. Learn about the impact of Hep C among BIPOC (Black, Indigenous, People of Color) Americans, and the importance of culturally competent care when seeking treatment for Hep C in this resource created by ShareCare, in partnership with GLI.

                                  CEC HepC GLI Patientresourcecenter 01 (3)

                                   

                                  Culturally Relevant Tools to Increase Hepatitis B Screening in Asian American Communities
                                  Research shows that culturally tailored information and videos, delivered in the audience’s primary language, can significantly boost hepatitis B screening rates, especially among the Asian American population. When people have the best chance to understand and connect with new knowledge, they are more likely to take action, especially when it comes to healthcare.

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                                  Upcoming Events:


                                   

                                  For more information about the Liver Cancers Council or to learn more about joining, please visit https://globalliver.org/liver-cancers-council/ or email cancer@globalliver.org

                                  TITLE NEEDED – Pediatric and Rare Liver Diseases News

                                  Driving Progress in Rare Liver Disease – Pediatric and Rare Liver Diseases News

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                                   Driving Progress in Rare Liver Disease

                                  Patient Story Feature: 

                                  From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ

                                  When years of fatigue, inflammation, and unanswered symptoms left him without a diagnosis, Frans Frielink, an engineer by training, turned his problem-solving skills inward. What began as a personal health crisis became a data-driven investigation into the Pi*MZ genotype of alpha-1 antitrypsin deficiency. His experience led him to uncover patterns in global data, connect with researchers, and push for a redefinition of what it means to be a “carrier.” 

                                  Frans Frielink’s story offers a look at how one patient’s persistence is shaping ongoing research and awareness of an overlooked liver health risk.

                                  Frans Friedlink (Alpha 1 MZ)

                                   

                                  The ORPHAN Cures Act Has Passed! 

                                  The ORPHAN Cures Act has officially passed into law! This is more than just a policy victory; it’s a shift in how we accelerate research for patients living with rare diseases. 

                                  Here’s what you need to know:

                                  • What’s Next: Federal agencies like the FDA will begin implementing the Act, developing guidance, frameworks, and opportunities for public input. Patients and advocates can stay engaged to ensure these guidelines are shaped not by governing entities but by patient voices and experiences.
                                  • What Patients Should Know: The patients’ voice played a key role in getting this passed, and it will be just as vital in making sure the law delivers. There will be more opportunities to contribute your lived experience, and hopefully faster access to treatments.
                                  • What This Means for Drug Development: The Act encourages the use of real-world evidence and regulatory flexibility, making it easier to study existing treatments for new uses and driving innovation for conditions previously considered too rare to pursue. This is our opportunity to ensure that the drugs that are sitting on a shelf do not remain there.

                                     

                                    Celebrating the passage of the Sunshine Genetics Act

                                    In Florida, the Sunshine Genetics Act (H.B. 907) has officially passed, thanks to the leadership of Rep. Adam Anderson (R-Palm Harbor) and the bipartisan support of Florida lawmakers who recognized the urgent need for early detection in rare diseases. This law launches a five-year pilot program offering free, opt-in whole genome sequencing for newborns, giving families the opportunity to detect serious but treatable conditions before symptoms appear. It also establishes the Sunshine Genetics Consortium and the Florida Institute for Pediatric Rare Diseases (FIPRD) at Florida State University’s College of Medicine, bringing together the state’s leading experts in research, clinical care, and biotech innovation. 

                                    With $3 million allocated for the pilot, $4.5 million in state funding for FIPRD, and an additional $2 million commitment from FSU, the university is investing over $7 million to expand early diagnosis, provider education, and precision medicine research.


                                     

                                    Get Involved with the New Rare Disease Advisory Council in Rhode Island 

                                    Rhode Island has officially passed legislation establishing its Rare Disease Advisory Council (RDAC), giving rare disease patients and families a stronger voice in state healthcare policy. This council will bring together patients, caregivers, healthcare providers, and policymakers to improve awareness, access to care, and research opportunities for the rare disease community. 

                                    While voting members of the Rhode Island RDAC are appointed, patients and caregivers can still get involved by attending public meetings, submitting comments, and staying informed through state health updates.


                                     

                                    Glycogen Storage Disease Type 1a Gene Therapy Trial Begins at UConn and Connecticut Children’s 

                                    UConn and Connecticut Children’s have launched a multi-year clinical trial testing a groundbreaking gene therapy aimed at delivering a precise genetic fix for Glycogen Storage Disease Type 1a (GSD1a). This rare disorder, affecting about 1 in 100,000 people, causes severe metabolic complications including life-threatening low blood sugar, liver and kidney damage, and impaired growth. Patients must follow extremely strict diets, often relying on continuous cornstarch feeding around the clock to maintain their blood sugar levels, which profoundly impacts daily life. This trial aims to dramatically improve the lives of those living with GSD1a and hopefully other rare liver diseases as well.


                                     

                                    Exciting Disease-Altering Research in Primary Sclerosing Cholestasis 

                                    In a newly published study, researchers found that Aramchol, a drug known for rebalancing fat metabolism in liver cells, may do more than protect the liver; it appears to directly interrupt the cycle of inflammation and fibrosis seen in primary sclerosing cholangitis (PSC). This is particularly significant for PSC patients, many of whom eventually require liver transplants, with the disease often recurring even after transplant. By targeting the underlying cellular damage, Aramchol offers the possibility of a disease-modifying treatment. Since this drug has shown effectiveness in both mouse models and human liver cells, and has an established safety profile in people, it holds promise as a potential future therapy for PSC.


                                     

                                    Global Liver Institute’s Liver Health Symposium is Next Month
                                    Global Liver Institute’s Liver Health Symposium is coming to Minneapolis, MN on Saturday, September 20, 2025—and you’re invited! This FREE, in-person event is open to both community members/patients and healthcare providers, with two distinct tracks designed to meet your needs.

                                    For Community Members & Patients:
                                    Learn how to protect your liver, understand your risk, and take action for your health. Hear from local healthcare experts and patient advocates, explore educational health booths, ask questions in live Q&A sessions, and receive a free liver screening.

                                    For Healthcare Providers:
                                    Join leading experts from Mayo Clinic and other top institutions to improve your knowledge of liver disease detection, management, and treatment. Earn free CME credits while gaining practical tools to improve patient care and participate in a provider-only workgroup focused on advancing liver care delivery.

                                    LH Save The Date (3)

                                     

                                    Upcoming Events

                                     


                                                   

                                                  For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.

                                                  From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ

                                                  From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ

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                                                  From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ

                                                  My name is Frans Frielink, and I have over 40 years of experience in the semiconductor market in research and business. My background is deeply rooted in analytical thinking, problem-solving, and translating complex systems into practical solutions. However, in 2018, my health became the most difficult problem I had ever faced. 

                                                  I was exhausted, sleeping 14 hours a day, until my doctor discovered a severe vitamin D deficiency and prescribed high-dose D3. Instead of improving, things really went wrong. After the second dose, my body shut down. I experienced crippling inflammation, muscle tears, and could barely tolerate food, especially anything fatty. The system I trusted to work, my own body, was breaking down.

                                                  Frans Friedlink (Alpha 1 MZ)

                                                  For two years, I sought answers. Specialists after specialists, in different countries, ran tests, but nothing conclusive came back. Eventually, a university professor told me to “accept it;” because they could not explain my symptoms. However, I refused to give up. I turned to what I knew best: research.

                                                  I tracked every nutrient and symptom change using a food app and discovered that B- Vitamin complex supplementation helped, and I began ordering my own blood tests. I uncovered a significant B12 deficiency through elevated MMA levels. With B12 injections, I slowly regained function, at least enough to think clearly again. After that, I found the root cause of my vitamin D deficiency, which was an impaired calcium absorption, and resolved it, but other issues pointing to liver dysfunction persisted.

                                                  Two hepatologists dismissed any liver problem. I pushed further, demanding a full evaluation. Finally, a specialist tested for alpha-1 antitrypsin deficiency, and I was told I had the Pi*MZ genotype. He assured me it was harmless and mentioned not to smoke or drink, and I would be fine. But my symptoms told a different story.

                                                  Digging into the medical literature, I began to suspect a link between the MZ genotype and liver dysfunction. Talking to other MZ patients, I noticed striking similarities in their experiences: unexplained fatigue, pain, bile issues, and poor nutrient absorption.

                                                  Encouraged by this, I connected with experts in B12 research, who pointed to the UK Biobank research containing 17,000 PiMZ patients and discovered a high rate of biliary and liver-related problems. It became clear: this was not just “carrier” status; this was a functional liver disease affecting millions.

                                                  So I founded the Alpha1 MZ Foundation to raise awareness, educate patients and physicians, and continue driving research forward. Today, one year later, we are a dedicated team of seven, supporting a growing community of over 1,200 Pi*MZ patients. We have mapped the key pathways, biomarkers, and mechanistic dysfunctions within the Pi*MZ liver and presented our findings to leading medical professionals and pharmaceutical companies. Our goal is to enable the development and regulatory approval of targeted treatments for this overlooked population, whose unmet medical needs contribute to billions in healthcare costs and economic losses worldwide.

                                                  This is just the beginning. For decades, Pi*MZ has been dismissed as benign. Even though close to 10% of all liver transplants worldwide are Pi*MZ patients, and 7% of Pi*MZ patients develop intrahepatic cholestasis during pregnancy, not to mention all the other issues and the suffering of these millions of liver-affected patients.

                                                  Our mission is to change that clinically, scientifically, and in regulatory terms. We deserve recognition, answers, and support, and I’m determined to help deliver it.