Congress continues struggle to advance funding bills, agencies continue their work.

Congress continues struggle to advance funding bills, agencies continue their work.

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Congress narrowly averted a government shutdown in October and has made little progress on advancing appropriations bills needed to continue funding the government through Fiscal Year 2024. 


Join Global Liver Institute to Push Congress to Advance Priority Bills and Support Agency Efforts.

The government narrowly averted a shutdown but work continues to advance FY 2024 appropriations bills to keep the government funded. 

The Continuing Resolution that keeps the government funded will expire on November 17, 2023. Congress will need to either pass another Continuing Resolution or pass the Fiscal Year 2024 appropriations bills required to fund the government for the full year. GLI continues to support funding levels reflected in the Senate version of appropriations bills, providing modest increases to key health care programs and activities. Please join us by reaching out to your legislators through our easy-to-use form!


 

New Congressional Support after GLI Advanced Advocacy Academy’s (A3) Meetings

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After advocates met with almost 60 Congressional offices to share their shared personal stories, Members of Congress and their staff walked away with a better understanding of how legislation directly impacts people with liver disease and liver cancer, creating momentum for advancing GLI’s legislative priorities. Several signed onto cosponsor key pieces of legislation since the meetings. We are grateful to Congressman Mike Levin for cosponsoring the Living Donor Protection Act, Senator Hickenlooper for supporting the Medicare Multi-Cancer Early Detection Screening Coverage Act, and Senator Thomas Tillis for supporting all four priority bills!

 


Key Mannatt report discusses obesity treatment and efforts to improve CBO score-keeping.  

Manatt Health, with contributions from the Obesity Action Coalition and The Obesity Society (both of which GLI is a member), summarized the legal and policy rationales for CMS to alter its interpretation and concluded that a law passed in 2003 does not prevent Part D coverage of anti-obesity medications. The paper called out that obesity is already recognized as a disease by most medical organizations and medical agencies, and treating obesity is not solely a treatment for weight loss, a fact well understood by many patients with liver disease. CMS could choose to identify obesity as a disease and cover these new treatments under Part D. Also, the Congressional Budget Office published a blog stating it “is on the lookout for new research that would enhance its analysis of policies affecting the use of obesity treatments—especially research on the use of anti-obesity medications (AOMs).”


 

CMS and HRSA engage in coordinated efforts after passage of OPTN Reform Act.

After passing the “Securing the U.S. Organ Procurement and Transplantation Network Act,” which allows for the award of multiple grants, contracts, or cooperative agreements to operate the Organ Procurement and Transplantation Network, CMS and HRSA have committed to drive improvements in donations, clinical outcomes, system improvement, quality 

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measurement and transparency, and regulatory oversight. The agencies published an announcement about a coordinated effort to improve organ donation, procurement, and transplantation through an Organ Transplantation Affinity Group (OTAG). Also, HRSA responded to calls for improved stakeholder engagement related to the OPTN Modernization Initiative by providing a web-based contact form, now available on the OPTN Modernization website to solicit feedback from patients, families, clinicians, and other interested parties. GLI was proud to be represented at the bill’s signing ceremony, and is pleased to see these continued efforts toward modernization since its passage.


 

HHS Office for Civil Rights has proposed changes to Section 504 of the Rehabilitation Act impacting access to liver transplants for people with disabilities.

The HHS has taken additional steps to ensure access to organ transplants for all people by removing barriers for people with disabilities. The proposed rule acts on the recommendations of a 2019 study from the National Council on Disability (NCD), finding that individuals with disabilities are often excluded from the transplant process due to inaccurate assumptions about quality of life and post-transplant compliance for those individuals. To this end, the Department highlights the importance of including organ transplantations as part of its broader application of Section 504 requirements in the medical treatment context.

 


 

Alarming Trends in Fatty Liver Disease (Especially in Children) Shortening Life Spans

Alarming Trends in Fatty Liver Disease (Especially in Children) Shortening Life Spans

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Global Fatty Liver Day

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Global Fatty Liver Day, formerly known as International NASH Day, is a public education campaign that was inaugurated in June 2018 to enhance awareness and emphasize the pressing nature of fatty liver disease, particularly its advanced stages. 

By adopting a patient-centered approach, Global Fatty Liver Day highlights the disease’s severe, advancing impact, empowering patients and caregivers to take action to maximize their liver health. 

Learn more about how you can be part of Global Fatty Liver Day 2024.


 

Rising Cases of Fatty Liver Disease in Children: Understanding the Growing Concern

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GLI’s VP of Liver Health Programs, Jeff McIntyre, collaborated with the Washington Post, resulting in a thought-provoking article titled “Fatty Liver Was a Disease of the Old. Then Kids Started Getting Sick.” The piece delves into the evolving landscape of fatty liver disease, addressing its impact on younger populations, diagnostic challenges, treatment implications, and changing perspectives on health and nutrition.


 

Pharmacists Can Optimize Treatment for Patients with NASH, Decreasing Economic Burden

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During an interview with Pharmacy Times at AMCP Nexus 2023, Jeff Mclntyre, VP of Liver Health Programs at Global Liver Institute, emphasized the critical clinical and economic burden of NASH. He underscored the role of pharmacists in early detection, comprehensive treatment planning, and advocating for accessible care, especially for underserved populations.


 

NASH Cirrhosis Patients Face Lower Liver Transplant Chances

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A recent study from Singapore found that people waiting for liver transplants due to nonalcoholic fatty liver disease (NASH) have a lower chance of getting a new liver and a higher risk of dying while on the waiting list compared to those with other types of liver disease. The study also showed that a particular substance in the blood, called serum creatinine, played a significant role in predicting the need for a transplant in NASH patients.


 

Low Birthweight tied to Early-Onset Fatty Liver Disease: An Equity Concern

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A Swedish study has found that babies with low birth weight (LBW) have a fourfold increased relative risk for fatty liver disease at an early age and a sixfold increase for liver fibrosis and cirrhosis early in life. LBW is a greater issue in communities with low socioeconomic status – meaning there is yet another inequitable outcome for vulnerable communities. Early diagnosis of fatty liver is essential so that advanced chronic disease does not develop – and should be implemented in communities with a high prevalence of LBW.


 

MOSAIC – A Global NASH Trialists Think Tank

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GLI’s VP of Liver Health Programs, Jeff McIntyre, participated in the MOSAIC forum on Oct 19-20, contributing patient perspectives to the debate on the significance of non-invasive diagnostics in MASLD/MASH trials.

The first session McIntyre presented “Non-invasive Non-liver Evaluations in MASLD/MASH Trials. ‘Must Have’ vs ‘Good to Have,’  focused on the potential for combining diagnostics for possible co-occurring disorders during MASLD/MASH trials.

The second session,“ What Should Be the Target Patient Population for a Combined MASLD/MASH/Cardiometabolic Trial?” focused on determining priority relationships between the liver and other cardiometabolic disorders that could be evaluated during clinical trials.

To learn more about the NASH Council or become a member, please visit https://globalliver.org/nash-council/ or reach out to NASHday@globalliver.org.

The Positive Future of Liver Cancer Research

The Positive Future of Liver Cancer Research

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#OctoberIs4Livers 

OI4L LogoThank you for joining this year’s #OctoberIs4Livers campaign to recognize Liver Cancer Awareness Month! From open houses around the world 🗺️ to insightful conversations and vibrant interaction online, we raised awareness of liver cancer. Check out anything you’ve missed:

Weekly liver cancer-specific episodes of GLI LIVE:

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NEW! Liver Cancer Lessons from our experts:

Palliative Care and Advanced HCC

Bridging the Gaps in Liver Health Research

A Glimpse Into the World of Liver Surgery

Preventing, Diagnosing, and Treating the Third Deadliest Cancer: A Policy Briefing on Liver Cancer


 

Cancer Moonshot Grant Awarded for Liver Cancer Research

Dr. Hien Dang and her team at Thomas Jefferson University have received a $1.3 million grant from President Biden’s Cancer Moonshot initiative to pursue a novel liver cancer treatment. The grant will support the development of a protein and microbubble delivery system administered to the liver through an IV. The protein in development has the ability to target many cancer cells and may be a breakthrough in liver cancer treatment.


 

Liver Cancer Moonshot

 

Prospects For Liver Cancer Survival

Dr. Niyi Olarewaju, a researcher from Owo, Nigeria, is making large strides in liver cancer research. During his PhD, Dr. Olarewaju identified a unique mRNA that is targeted by one microRNAs. As Dr. Olarewaju explains, the microRNA that he identified has the potential to bind to the mRNA whose role is to encode for tumor suppressor proteins. The binding of the microRNA to the mRNA then causes cells to grow uncontrolled, leading to cancer. Although Dr. Olarewaju’s research is still in the testing phase, it promises a positive outlook for understanding liver cancer. Read more.


 

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Bringing a resilient spirit and collective drive to give patients more hope

Exelixis has recently launched a video series that highlights the stories of individuals affected by the cancers they treat. The series includes insights from Physician Assistant Nakia Brooks, who offers a provider’s viewpoint on caring for patients with advanced liver cancer. The videos cover various subjects, including the challenges of diagnosis, the multidisciplinary approach to liver cancer care, the emotional toll of caring for cancer patients, and the importance of celebrating victories throughout the journey.


 

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CAR T-cell Therapy Patients Still Tumor-Free after Seven Years

In May of 2015, Renji Hospital in Shanghai collaborated with CARgen Therapeutics to develop the first clinical study with CAR T-cell therapy, which targets the glypian-3 protein in advanced hepatocellular carcinoma. When the study began, two patients with advanced liver cancer were given a combination of local and CAR T-cell therapies. Recently, the two participants returned to Renji Hospital for a follow-up examination and were found to have no tumors present, marking seven years that both patients have been liver cancer free.


 

Upcoming Events:

Pass by our booth (C2635) and say hello


 

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

Congress continues struggle to advance funding bills, agencies continue their work.

Liver Health at Forefront of Legislative and Regulatory Activity

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Congress returned in September to advance appropriations bills and debate key legislative priorities, while the administration worked on policies impacting liver health by addressing disability protections in organ transplantation and with regard to the Cancer Moonshot.


Global Liver Institute Works to Advance Liver Health for All People, including People with Liver Cancer, Obesity, and Disabilities.

The government narrowly averted a shutdown but work continues to advance FY 2024 appropriations bills to keep the government funded. 

On Saturday, September 30, Congress was able to finally pass a Continuing Resolution that kept the government funded until November 17, 2023. GLI continues to support funding levels reflected in the Senate version of appropriations bills, providing modest increases to key health care programs and activities.


 

GLI Advanced Advocacy Academy’s (A3) participants went to Capitol Hill to educate Members of Congress about liver health

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Advocates were able to meet with almost 60 Congressional offices to share their concerns about the need for early diagnosis of liver cancer through multi-cancer screenings, preventive services such as obesity treatment, clinical lab services to detect and manage liver disease, and policies supporting living donors. They shared personal stories that allowed Members of Congress and their staff to understand how legislation directly impacts people with liver disease and liver cancer, creating momentum for advancing GLI’s legislative priorities.


 

Donna R. Cryer, JD participated in the signing ceremony for the OPTN Reform Act on September 22. 

The President signed into law H.R. 2544, the “Securing the U.S. Organ Procurement and Transplantation Network Act,” which allows for the award of multiple grants, contracts, or cooperative agreements to operate the Organ Procurement and Transplantation Network. GLI was proud to be represented at the signing ceremony and to personally thank the bill’s supporters in attendance, including Senator Ron Wyden (D-OR) and Congresswoman Robin Kelly (D-IL), as well as HHS Secretary Xavier Becerra.

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The White House announces new actions for Cancer Moonshot. 

The White House announced steps to advance the mission of the White House Cancer Moonshot, as well as new commitments the Biden-Harris Administration has secured from non-governmental organizations and the private sector to deliver progress on the mission to end cancer as we know it. Actions included:

  • $240 million in additional investment this year to accelerate new ways to prevent, detect, treat, and survive cancer through the Advanced Research Projects Agency for Health (ARPA-H)
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  • A new “biomedical data fabric toolbox” to advance cancer research progress, a partnership between ARPA-H and the National Institutes of Health, the National Cancer Institute (NCI), and other agencies
  • A new nationwide health innovation network to bring cancer clinical trials to underserved communities and drive research progress through a new ARPANET-H, a nationwide health innovation network to tackle pressing health challenges
  • Investments to reduce the impact of tobacco use
  • A new award recognizing community health centers for exceptional performance and high clinical quality in cancer screenings
  • New resources and actions to reduce exposures to environmental carcinogens
  • Leveraging research in outer space to fight cancer on Earth and amplifying awareness of cancer screening

 


The House considered the Treat and Reduce Obesity Act (TROA) and the Medicare Multi-Cancer Early Detection Screening Coverage Act on September 19, 2023. Access the Obesity Action Coalition’s Action Center to encourage new cosponsors of TROA legislation. Access Prevent Cancer Foundation’s Action Center to encourage new cosponsors of legislation advancing multi-cancer screening coverage.


 

HHS Office for Civil Rights proposes changes to Section 504 of the Rehabilitation Act impacting access to liver transplants for people with disabilities.

Since the passage of bipartisan legislation responding to the urgent need for reforming the U.S. Organ Procurement and Transplantation Network (OPTN), the administration took additional steps to ensure access to organ transplants for all people. The proposed rule acts on the recommendations of a 2019 study from the National Council on Disability (NCD), finding that individuals with disabilities are often excluded from the transplant process due to inaccurate assumptions about quality of life and post-transplant compliance for those individuals. To this end, the Department highlights the importance of including organ transplantations as part of its broader application of Section 504 requirements in the medical treatment context.

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GLI celebrates NIH’s decision to include people with disabilities as a health disparities population.

On September 26, 2023, the National Institute on Minority Health and Health Disparities (NIMHD) designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health in consultation with the Agency for Healthcare Research and Quality (AHRQ). This favorable outcome was uncertain for a time, as the Advisory Committee to the National Institute on Minority Health and Health Disparities (NIMHD) had rejected the recommendations of an NIH Advisory Committee to include people with disabilities as a health disparities population earlier in the month. In response, over 1900 researchers, patients, and organizations like GLI called for NIMHD to include people with disabilities. This change will open opportunities to fund and advance projects addressing the health disparities experienced by people with disabilities.


 

Alarming Trends in Fatty Liver Disease (Especially in Children) Shortening Life Spans

Building on Fatty Liver Awareness and Treatments

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Building on Fatty Liver Awareness and Treatments

As prospects for new fatty liver and NASH treatments appear on the horizon, GLI continues to push for better awareness, screening, and treatment options. With fatty liver disease being diagnosed in a growing pediatric population, understanding the role of nutrition, risks, and the connection to co-occurring disorders is vital to addressing this chronic, progressive disease.


 

New Drug Application for Resmetirom Accepted at FDA 

The FDA has accepted the new drug application for resmetirom for treatment of adults with nonalcoholic steatohepatitis (NASH) with liver fibrosis. If approved, this will be the first pharmaceutical therapy available for NASH in the U.S. The agency also has granted the investigational drug priority review and set a Prescription Drug User Fee Act date of March 14, 2024.


 

Fatty Liver was a Disease of the Old. Then Kids Started Getting Sick. from the Washington Post
Before the turn of the century, there were only a handful of documented cases of pediatric fatty liver disease in the medical literature. Today, millions are affected, and researchers in the journal Clinical Liver Disease estimate that 5 to 10 percent of all U.S. children have nonalcoholic fatty liver disease — making it about as common as asthma.

“It’s the worst disease you’ve never heard of,” said Samir Softic, a pediatric gastroenterologist at Kentucky Children’s Hospital who specializes in fatty liver disease. Read the article.


 

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One-third of liver disease-related deaths occur in people who had been diagnosed with NAFLD before the age of 30, they noted. Even children
and young adults are diagnosed with NAFLD, putting them at increased mortality risk opens in a new tab or window.

Read the article.


 

Nutrition could prevent or promote non-alcoholic fatty liver disease: an opportunity for intervention
There are currently no globally accepted, evidence-based, practical dietary recommendations for the prevention of NAFLD – an underutilized potential intervention. Further, NAFLD is not mentioned in international and national guidelines on obesity and type 2 diabetes and is missing from the World Health Organization webpage on obesity complications. This results in poor management of liver related complications in patients with obesity and diabetes.


 

Silent Killer Alert: Fatty liver disease sweeping the UK, says TV doctor
A Common, Unseen Threat: You might be surprised to learn that up
to one in every three people in the UK may have early-stage NAFLD, where small amounts of fat accumulate in their livers. 

It’s a health concern that often flies under the radar. Dr. Michael Mosley himself discovered he had early signs of NAFLD over a decade ago when he was overweight. However, he managed to reverse it, along with his type 2 diabetes, through lifestyle changes and a particular diet.

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Upcoming Events

  • October 16-19: AMCP Nexus
    • Join GLI at the upcoming Academy of Managed Care Pharmacy Nexus as we present during the session Navigating NASH: A Discussion on Clinical Background, Patient Advocacy and Managed Care Considerations.
  • October 19-20: MOSAIC NASH Trialists Think Tank
    • Join GLI at the upcoming MOSAIC NASH Conference in Washington DC as GLI presents at two sessions:
    • Thursday, Oct 19 – Non-Invasive Non-Liver Evaluations in MASLD/MASH Trials. Must Have vs Good to Have?
    • Friday, Oct 20 – What Should Be the Target Patient Population for a Combined MASLD/MASH/Cardiometabolic Trial?

 

To learn more about the NASH Council or become a member, please visit https://globalliver.org/nash-council/ or reach out to NASHday@globalliver.org.

Updated Patient Registry, Drug Development Progress, & More!

Updated Patient Registry, Drug Development Progress, & More!

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This month, significant strides have been made in addressing rare liver disease care. Updates to patient registries, novel therapeutic options, and strategies for expediting prior authorizations in rare diseases are highlighted below.


 

PFIC Patient Registry Updated to Include New Languages

The PFIC Network is now offering the Progressive Familial Intrahepatic Cholestasis (PFIC) registry in Italian, Polish, and Spanish, making it easier for more people to sign up and participate. This update will facilitate greater accessibility, allowing more individuals to engage with the registration process and contribute to research efforts. We commend this effort and encourage patients to sign up for this registry and remain engaged with follow up to advance research in PFIC.

 

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Progress in Drug Development for PBC and Symptom Management 

CymbaBay’s drug, Seladelpar, successfully met both its primary and secondary endpoints during its clinical study period, paving the way for regulatory approval in the United States and Europe. The results obtained from the RESPONSE Trials demonstrated significant efficacy, indicating its potential as a viable treatment option for PBC and for itch (pruritus) commonly associated with this disease.

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Start of a New Therapeutic Option for Alpha-1 Antitrypsin Deficiency Patients 

Airna, a startup based in Cambridge, MA, is making significant strides in the realm of experimental drug development. Their primary focus lies in combating alpha-1 antitrypsin deficiency with RNA therapeutics. This approach utilizes prior research conducted in Germany, with the overarching goal of creating a pharmaceutical intervention designed to rewrite RNA’s genetic instructions, thereby targeting the disease in its entirety.


 

Insight on Prior Authorizations and Gold Carding in Rare Disease 

In a Q&A session featuring Ryan Haumschild, PharmD, MS, MBA, valuable insights were shared on the effective management of prior authorizations for patients grappling with rare diseases. Mr. Haumschild underscores the compelling case for granting a “gold card” status for patients afflicted with rare diseases. Specifically for rare diseases where high cost drugs are a common concern, a fast-track approval process in receiving these drugs will ensure that both patients and providers are satisfied.


 

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.

The Positive Future of Liver Cancer Research

Recognizing Liver Cancer Awareness Month!

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#OctoberIs4Livers

Join us throughout the month for our #OctoberIs4Livers campaign, the first and only global program dedicated to public awareness, policy, and clinical practice needs to prevent and manage liver cancer while educating and empowering those living with and impacted by the disease. This month GLI collaborates with researchers, activists, health professionals, and patients to bring forth our Liver Cancer Lessons and GLI LIVE series. In an effort to increase our global impact, GLI has also partnered with clinics and hospitals around the globe to host our second Global Open House event. If you have not done so already, please visit our Liver Central website for educational material translated in new languages! Don’t forget to check out our campaign merch.

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Clinical Trial Enrollment Disparities in Liver Cancer 

Dr. Lionel A. Kankeu Fonkoua, a medical oncologist in the Department of Medical Oncology at Mayo Clinic, spoke about the disparities that surround liver cancer clinical trials. Dr. Fonkoua explained that, although clinical trials have strict eligibility criterias to prevent harming patients, these same criterias are creating bias by representing only the healthiest patients and tend to disproportionately exclude Black patients. Dr. Fonkoua states that if clinical trials are to be representative of the general population, then inclusion criterias must be changed. 

Read more or listen to the interview.


 

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AASLD launches new practice guidelines for prevention, diagnosis, and treatment of hepatocellular carcinoma (HCC)

Screenshot 2023 10 10 At 2.27.44 PMThe AASLD practice guidelines have been updated to reflect new clinically significant methods for prevention, diagnosis, and treatment of hepatocellular carcinoma. For instance, the recommendation for the use of ultrasound for HCC surveillance, indications for surgical therapies, and recommendations for multidisciplinary care and advanced care planning are just a few areas that have been revised in this year’s edition.


 

Essential Liver Patient Resource Is Updated 

The National Comprehensive Cancer Network (NCCN) has released their 2023 NCCN Guidelines For Patients: Gallbladder and Bile Duct Cancers in collaboration with GLI. This year’s Guidelines For Patients covers important topics such as testing for gallbladder and bile duct cancers, gallbladder and bile duct cancer staging, and the treatment process for gallbladder and bile duct cancers.

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Advances In Recurrent HCC Therapy 

Although early-stage hepatocellular carcinoma (HCC) is curable, it is estimated that 50 to 70 percent of individuals experience a relapse of the illness after 5 years. The relapse individuals experience could potentially be due to inadequate resection surgery, however, it is mostly associated with the development of de novo tumors. For individuals who experience a relapse within 2 years after their surgery, their cancer is often incurable. Researchers are turning to adjuvant antiviral treatment, repeated resection, and other forms of cancer therapies as a solution. Read more.


 

Upcoming Events:


It’s not only important to GLI to keep you updated; we value your input and updates. This is a reminder to Liver Cancers Council members and supporters to share news to be featured in our monthly newsletter or on our Liver Central website.

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.

Global Communities Rally around Third Deadliest Cancer – Liver Cancer

Global Communities Rally around Third Deadliest Cancer – Liver Cancer

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Global Communities Rally around Third Deadliest Cancer – Liver Cancer

 Global Liver Institute Leads International Program to Build Hope and Raise Awareness during October, Liver Cancer Awareness Month

(Washington, D.C., October 1, 2023) – Today marks the start of Liver Cancer Awareness Month, which will feature the monthlong #OctoberIs4Livers multifaceted campaign led by Global Liver Institute (GLI) to promote awareness of the disease, mark progress made, and identify key areas of global focus to make improvements for liver cancer patients. In addition to a comprehensive social media campaign, “Liver Cancer Lessons” education series, and featured conversations with expert guests and GLI CEO Donna R. Cryer, JD, partners around the world will host Open House events to inform and advocate to fight liver disease in their communities. 

“Health equity continues to be front of mind. We are so excited to expand our global partnerships this year and build on the insights of last year’s roundtable conversations; these are key steps to inclusivity throughout the #OctoberIs4Livers campaign,” shared Sarah Manes, the Program Director of Liver Cancers at GLI. “While liver cancer is deadly and devastating around the globe, the contributing factors in each community are different, so we are addressing and equipping each situation differently.”

No matter where you live in the world, a diagnosis of liver cancer is grim. In every country in the world, less than 1 in 3 people diagnosed will be alive 5 years later. Still, certain groups bear the brunt of the burden: 

Luckily, around 70% of cases of liver cancer are preventable with existing technology – so enormous strides can be made by making investments to deploy tools we already have, in the communities that need it most. This sentiment is at the heart of #OctoberIs4Livers.

“There is no longer an excuse for the devastation that liver cancer causes for many patients and their families when early diagnosis and preventive measures could put a stop to the vast majority of tragedies,” GLI Founder and CEO Donna R. Cryer, JD, said. “Political will and concerted investment in liver health will turn the tide. We are excited to expand this momentum alongside our global partners every day – but especially throughout October.”

In-person Open House events across the world will raise awareness, promote prevention, and train clinicians to better prevent, diagnose, and treat liver cancer. In addition to the inaugural sites (indicated with a *), a few new locations will host local events as well:

  • Barcelona Clinic Liver Cancer, led by Dr. Maria Reig* – Barcelona, Spain 
  • Limbe Regional Hospital, led by Dr. Mbianke Livancliff* – Limbe, Cameroon
  • Kalinga Gastroenterology Foundation, led by Dr. Shivaram P. Singh* – Cuttack, India
  • Moorse Cancer Center at UC San Diego Health, led by Dr. Adam Burgoyne – La Jolla, California, USA
  • Cairo University, led by Dr. Mohamed AbdAllah– Cairo, Egypt

Throughout the month, GLI will highlight stories from liver cancer patients, release new translations of our educational materials (in Arabic and Somali), feature conversations with experts from nurse navigation to advocacy and more during GLI LIVE, and will cover the breadth of relevant topics on liver cancer during a series of Liver Cancer Lessons. Be sure to also check out our social media toolkit to share ready-to-use messages with your friends, family, and followers and use the hashtag #OctoberIs4Livers.

 

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.

The Latest at GLI: Reasons for Celebration! 🎊

The Latest at GLI: Reasons for Celebration! 🎊

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As we turn the corner into the fall 🍂 (or spring🌸, for our southern hemisphere friends), there is much to celebrate and much to accomplish in the last few months of the year. Our #OctoberIs4Livers campaign kicks off in a few days with activities to fight liver cancer around the world! A few days ago, President Biden signed the bipartisan Securing the U.S. Organ Procurement and Transplantation Network Act into law, which will improve transparency and accountability in the transplantation system.

Speaking of transplantation, our very own Founder and CEO Donna R. Cryer celebrates 29 years since her liver transplant – 29 years of accomplishments and memories with the generous gift of her donor and donor family and the skill of her transplant team! (Make sure to keep an eye out for our #Becauseofmytransplant campaign on our social media channels)

We are immensely grateful for the generosity of the donors who power liver health – from living donors and registered organ donors to those who contribute financially to the cause of liver health! None of this impact is possible without you!

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President Biden Signs the Securing the OPTN Act into Law

On Friday, President Joe Biden signed the Securing the Organ Procurement and Transplantation Network Act into law, the largest piece of transplantation legislation since the National Organ Transplant Act of 1984 created the OPTN. GLI CEO Donna R. Cryer, JD, had the opportunity to join with other patient advocates to witness the signing. Global Liver Institute and the many patients and their families in the US waiting for an organ transplant express deep gratitude for everyone whose efforts over the years have enabled this moment.

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GLI CEO Donna R. Cryer, JD, Testifies on Organ Transplantation before the Senate Finance Committee

During a U.S. Senate Finance Committee Hearing on the transplant system, Donna R. Cryer delivered a powerful testimony urging reform, based on her personal experience as a liver transplant recipient and an unwavering advocate with a track record of decades improving the health system for patients. Shortly after this hearing, both houses of the U.S. Congress passed the Securing the Organ Transplantation Network Act into law with bipartisan support.

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GLI Around the World

Over the past few months, team GLI has participated in numerous global conversations advancing liver health as public health, tackling health equity, and charting a path forward in NASH. Read below as we take you through a quick recap around the globe. 🗺️

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GLI CEO Donna R. Cryer speaks about “Realistic Care & Shared Decision making” during ESOT’s opening plenary: Transplantation at crossroads. Athens, Greece 🇬🇷

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GLI CEO Donna R. Cryer speaks during ABGH’s The BIG Symposium 2023: Health Equity at the Forefront. Chicago, IL, USA 🇺🇸

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Giacomo Donnini, Director of Liver Health is Public Health, presents at Together for Better Liver Health: Mobilising Action for Fatty Liver Disease in WHO Policy. Geneva, Switzerland 🇨🇭

Donna R. Cryer presents during the European Liver Patients’ Association event on NAFLD at the European Parliament. Brussels, Belgium 🇧🇪

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GLI’s Communications Director Christine Maalouf and Director of Liver Health is Public Health Giacomo Donnini join Dr. Jackie Maalouf and others for NASH Day event with DiaLeb – Diabetes & NASH: Perspectives of Prevent and Management. Beirut, Lebanon 🇱🇧

GLI’s VP of Liver Health Programs, Jeff McIntyre, and Director of Liver Health is Public Health, Giacomo Donnini, attend the 2023 EASL Congress. Vienna, Austria 🇦🇹

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6th Annual International NASH Day Reaches Communities around the World

With participation across 55 countries and more than 100 partners, from the EU Parliament to the streets of Dhaka, Bangladesh, GLI and our partners around the world raised awareness, educated healthcare professionals, and even provided screening options to fight the epidemic of fatty liver disease around the world!

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Liver Cancers

GLI Hosts Innovating and Advancing Research in Liver Cancers: A Webinar

On June 27, GLI held a discussion of how the field is responding to the needs and challenges of those living with liver cancers. The webinar focused on three topics: reducing disparities in clinical trials, liver cancers screening options and innovation, and liver cancers research updates. Sarah Manes presented the virtual event with Dr. Lionel Fonkua (Mayo Clinic), Dr. Neehar Parikh (University of Michigan), Dr. Amit Singal (UT Southwestern), Dr. Ahmed Kaseb (MD Anderson; NCI SPORE), Dr. Mark McNiven (Mayo Clinic; NCI SPORE), and Dr. Bruno Sangro (Clínica Universidad de Navarra) as key speakers. Read more about the webinar or watch it today!

GLI Partners with the France Foundation to Hold Three HEPATIC (HCC Education and Protocols to Advance Treatment through Integrated Collaboration) Clinician Workshops 

From March to August, the France Foundation hosted 3 CME clinician workshops on the most up-to-date recommendations for diagnosis and treatment of HCC. Sarah Manes, GLI’s Program Director for Liver Cancers, presented as part of the expert faculty of the workshops in Houston, TX; New York, NY; and San Diego, CA.

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#OctoberIs4Livers 2023 Campaign

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Liver Cancer Awareness Month is just around the corner! This October, join us for our annual #OctoberIs4Livers campaign. We’ll be accompanied by special guests during GLI LIVE and our Liver Cancer Lessons series, welcome patients around the world to learn about liver cancer during our Open House series, and much more!

Take a look at the toolkit to share more information about liver cancer with your family and friends and please check out our merch to rep the campaign all month long!

Updates from the Liver Action Network (LAN)

LAN Representatives Respond to ICER Review of NASH Medications

The Institute for Clinical and Economic Review held a public hearing on its assessment of resmetirom and obetacholic acid for treatment of NASH, convened by the Midwest Comparative Effectiveness Public Advisory Council. Several representatives of the GLI’s Liver Action Network presented the patient perspective during the public hearing but ultimately found ICER’s conclusions to be

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Pediatrics & Rare Liver Diseases

Wilson’s Disease Policy Brief

Earlier this year, GLI contributed to a policy brief on Wilson’s disease as part of the Wilson’s Disease Policy Network. After providing background on the disease and the main barriers to care, the brief identified the following priority areas for action to improve the quality of life for those with Wilson’s disease: diagnosis, multidisciplinary care, monitoring treatment, data collection, rare disease policy and advocacy.

PBC Summit, Edinburgh, UK

GLI attended the 2023 PBC Summit to learn and align with other members of the PBC community on next steps to improve diagnosis, care, and treatment options for PBC patients.

PBC Summit May 2023

Polycystic Liver Disease European Research Network Symposium, Nijmegen, Netherlands

GLI’s Director of Liver Health is Public Health Giacomo Donnini attended the ERN Rare Liver Symposium and participated as part of the workgroup, bringing together clinicians and patient advocates to build together an impactful path forward.

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GLI in the Media:

Gastro Girl Podcast: Why Should I Care About My Liver?

GLI CEO Donna R. Cryer, JD, was featured in this episode of the podcast empowering optimal digestive health to share why the liver is important, ways to take care of it, and how GLI helps people with their liver health.

Velázquez and Johnson Reintroduce Resolution in Support of World Hepatitis Day

U.S. Representatives Velázquez and Johnson included a quote from Sarah Manes, GLI’s Liver Cancers Program Director in their press release for World Hepatitis Day in July.

Future of Health Care Summit

GLI CEO Donna R. Cryer, JD, spoke on a panel at The Hill’s Future of Health Care Summit on healthcare disparities, health equity, and access and discussed transplantation, patient education, and the importance of supportive systems to increase access to medical education.

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Upcoming Events:

  • AASLD’s The Liver Meeting® (November 10-14, Boston, MA): Come say hello to members of GLI’s team throughout The Liver Meeting®! Please email us to set up a meeting or stop by our booth in the exhibitor hall.
  • American Public Health Association’s Annual Meeting (November 13, Atlanta, GA): Join us as GLI CEO Donna R. Cryer, JD, will be speaking on a Monday morning panel on Emerging Issues in Research Equity

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Global Liver Institute Thanks President Biden for Signing the Securing the U.S. Organ Procurement and Transplantation Network Act into Law

Global Liver Institute Thanks President Biden for Signing the Securing the U.S. Organ Procurement and Transplantation Network Act into Law

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Global Liver Institute Thanks President Biden for Signing the Securing the U.S. Organ Procurement and Transplantation Network Act into Law

Washington, DC, September 27, 2023 – On Friday, September 22, 2023 President Joseph Biden signed the Securing the U.S. Organ Procurement and Transplantation Network (OPTN)  Act into law – which was previously passed by Congress in July. The bipartisan Act’s passage follows years of investigation led by Senators Wyden, Grassley, Young, Warren and others on the Senate Finance Committee. Global Liver Institute (GLI) expresses its sincere appreciation for this leadership from Congress and for the President’s commitment to saving lives by improving accountability and transparency in the OPTN, the nation’s organ donation system.

Once this legislation takes effect, it will break up the monopoly that the United Network for Organ Sharing (UNOS) holds over the OPTN to allow for innovation and competition while also enhancing accountability and transparency in the national system.

President Biden for Signing the Securing the U.S. Organ Procurement and Transplantation Network Act

From left to right: Greg Segal, Organize; Donna R. Cryer, JD, Global Liver Institute; HHS Secretary Xavier Becerra; Senator Ron Wyden (OR); President Joseph Biden; Congresswoman Robin Kelly (IL); Director Carole Johnson, HRSA; Kevin Longino, National Kidney Foundation.

GLI Founder and CEO Donna R. Cryer, JD, attended the signing of the bill. She was joined by several partners whose hard work in patient advocacy enabled this moment: Greg Segal, Founder and CEO of Organize, and Kevin Longino, CEO of the National Kidney Foundation. This honor underscores the fact that both Mrs. Cryer and Global Liver Institute have strongly supported this reform as essential to responsible utilization of donor organs and critical to achieving equity and efficiency in transplantation:

In August 2020, GLI urged bipartisan effort to reform OPOs. 

On May 4, 2021, Mrs. Cryer testified before the U.S. House of Representatives Subcommittee on Economic and Consumer Policy and called for reform of the inequitable transplantation system and OPOs that have historically mismanaged organ donations and underperformed without consequence.

In March of this year, GLI commended the Health Resources & Services Administration (HRSA) for launching its OPTN Modernization Initiative in April.

In April 2023, Mrs. Cryer and others authored an article in strong support of HRSA’s announcement to reform the OPTN.

This May, GLI urged our community to share their support for the Securing the U.S. Organ Procurement and Transplantation Network Act and contact their legislators.

On July 20, 2023, Donna R. Cryer, JD, testified before the U.S. Senate Finance Committee about the failures of the U.S. organ procurement system, described as devastating, leaving in its wake needless death and breathtaking inequity. Everyone testifying communicated that the fault lies squarely with UNOS and many of the nation’s organ procurement organizations (OPOs) which UNOS oversees. During her testimony, Mrs. Cryer urged the Senate to pass this legislation.

GLI has in countless other ways supported donors and recipients of organ transplants and advocated for legislation that will benefit these groups.

This track record of support is driven by an extended history of concern of mismanagement and irresponsibility by UNOS of the national transplantation system.

  • A bipartisan Senate report, released in 2022, found that the network is failing to provide adequate oversight to OPOs, which decreases the organs available and risks patient safety. It also revealed that UNOS risks system interruption because it lacks the technical expertise to modernize the OPTN IT system.
  • A recent data analysis by The Washington Post and the Markup found that a 2020 rule implemented to allocate donated livers had disadvantaged patients and reduced access to transplantation in Puerto Rico, the Midwest, and the South – with disadvantaged areas becoming even more disadvantaged after aggressive promotion from wealthier states.
  • A subsequent article from the Post disclosed that many organs have been discarded, damaged in transit, or simply not collected under the existing system and pointed to limited consequences for poor-performing OPOs after HRSA announced its plan to overhaul the OPTN. 

Though this is a major step forward for transplantation, there is still work to be done to fully implement the Securing the U.S. Organ Procurement and Transplantation Network Act. Still ahead is securing the necessary appropriations, executing and enforcing the changes specified, and utilizing new changes to improve quality, technology, data standards, and equality. GLI will continue to hold the system accountable to improve equitable access to the transplant list and higher numbers of transplants in every region of the country, with longer, healthier survivorship.

 

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. Follow GLI on Twitter, Facebook, Instagram, LinkedIn, and YouTube.