American Liver Foundation Hosted Liver Cancer Briefing on Capitol Hill

Leading medical experts and patient advocates discussed prevalence, risk factors and strategies for intervention

Leading medical experts and patient advocates came together last week for a Congressional Briefing hosted by American Liver Foundation (ALF) on Liver Cancer: Prevalence, Risk Factors, and Strategies for Prevention and Treatment. Congressman Don Bacon (NE-02), a long-time supporter of liver patients, gave remarks along with his Chief of Staff, Mark Dreiling, a liver transplant recipient. Also giving remarks were Phil Shin, ALF Board Member and liver cancer survivor, Allison Martin, MD, MPH, Gastrointestinal Surgeon and Surgical Oncologist at Duke University of Medicine and Durham VA Medical Center in Durham, North Carolina, Viviana Figueroa Diaz, MD, Assistant Professor and Clinical Lead for the Spanish Liver program and Women’s Liver Health at New York University’s Grossman School of Medicine, ALF Advocacy Ambassador Evelyn Rivera, a liver cancer survivor from New Mexico, and Ivory Allison, National Senior Director, Community Impact at ALF. A full video recording of the briefing is available on ALF’s YouTube channel and linked here: https://youtu.be/EeXcO9_Kvpg.

“Liver cancer remains a leading cause of cancer mortality and 40,000 Americans are diagnosed with new cases every year,” said Lorraine Stiehl, Chief Executive Office at American Liver Foundation whose father-in-law died of liver cancer in 1992. “ALF’s congressional briefing provided evidence-based strategies for the prevention and treatment of liver cancer as well as legislative solutions aimed at improving access to care for patients. ALF envisions a world without liver disease, so we’re laser focused on legislation introduced in congress that can help support all liver patients by improving access to treatment options and reducing financial barriers.”

In the U.S., liver cancer incidence and mortality are approximately one and a half to two times higher in American Indians, Alaska Natives, Asian Americans, African Americans/Black, and Hispanic/Latino populations compared to white individuals. Most cases of liver cancer occur in people with an underlying liver disease such as MASLD, chronic Hep B and C, cirrhosis, or autoimmune liver diseases, among many others. Given these statistics, ALF developed a liver cancer quiz that helps determine if you may be at risk. This free quiz is available in English and Spanish at thinkliverthinklife.org/quiz.

During his remarks, Congressman Don Bacon (NE-02) commended American Liver Foundation for raising awareness about liver cancer and liver disease, saying, ”Due to your advocacy, I was the lead sponsor for the 2025 Living Donor Protection Act, I co-sponsored the Honor Living Donors Act as well as the Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act. With 100 million Americans affected by some form of liver disease, a lot of people count on you. I appreciate you making me aware of these issues because you help us to do the right thing. Thanks for making us better and for helping people like my Chief of Staff, Mark Dreiling, who received a life-saving liver transplant in 2022”.

“Liver cancer is a horrible, very cruel condition to live with, so advocacy work on Capitol Hill is incredibly important,” said Mark Dreiling, Chief of Staff for Congressman Don Bacon (NE-02) and a liver transplant recipient. “I was diagnosed with Primary Sclerosing Cholangitis (PSC) in 2011. I was told I’d need a transplant in 10 years and like clockwork in 2021, I got my labs done and the first signs of instability were present. Congressman Bacon and three members of my team all wanted to step up and become liver donors, and I’ll be forever grateful to them. Getting diagnosed with PBC, liver cancer or any of these conditions is a very lonely place, but ALF gives people hope.”

“I was honored to share my story because I was truly blindsided when diagnosed with liver cancer in 2018,” said Phil Shin, ALF National Board Member and a liver cancer survivor. “When I was born, the hepatitis B (Hep B) vaccine didn’t exist; my siblings and I represent a generation that contracted this disease through their mother as none of the existing tools had been developed yet. Asian Americans comprise only 6 to 7 percent of the U.S. population, yet account for 58 percent of all chronic Hep B infections in this country. More than 75 percent of liver cancers are attributed to hepatitis B infections. The CDC recently ended the highly effective universal Hep B birth dose that prevented over 6 million infections and nearly 1 million hospitalizations in less than 30 years. I’m deeply concerned that this policy reversal will undo decades of progress.” Read Phil Shin’s full remarks here.

In her address, Allison Martin, MD, MPH, Gastrointestinal Surgeon and Surgical Oncologist at Duke University of Medicine and Durham VA Medical Center in Durham, North Carolina, noted, “Liver cancer is the 6^th leading cause of death in North Carolina, and the 13^th most common type of cancer overall in the U.S. Rural communities are underserved by cancer clinicians and have a disproportionate share of socially vulnerable patients. I came here today to advocate for improved resources for the diagnosis, treatment, prevention and research funding that will help us improve outcomes for patients with liver cancer.” Read Dr. Allison Martin’s full remarks here.

During her passionate remarks, Viviana Figueroa Diaz, MD, transplant hepatologist in the Division of Hepatology and transplant hepatology at NYU Langone, stated, “The incidence and mortality of hepatocellular carcinoma (HCC) has continued to rise, with mortality rates increasing faster than from any other cancer in the United States. Hispanic patients are more likely to have metabolic risk factors leading to their chronic liver disease risk for HCC in comparison to non-Hispanic whites. Hispanic patients were less likely to undergo resection or liver transplantation and are more likely to be treated by palliative care or enter hospice. Hispanic patients were less likely to receive liver transplants within 360 days compared with non-Hispanic white patients. My hope is that what I’ve shared today will help everyone here understand the need for federal help to address not only the MASLD crisis and increase in liver cancer but also action addressing the disparity with Hispanics.” Read Dr. Viviana Figueroa Diaz’s full remarks here.

Evelyn Rivera, an ALF Advocacy Ambassador and liver cancer survivor from New Mexico, shared the patient perspective. “I donated blood and later received a letter from the blood bank that I tested positive for Hepatitis C. I was shocked and didn’t know how I had contracted Hep C or what it was. At the time, I was told the treatment had very low success rates and terrible side effects, so my doctor and I chose to monitor my liver enzymes every six months and undergo liver biopsies every five years. Fifteen years later, I got a liver CT scan and learned I had liver cancer and Stage 4 cirrhosis of the liver. A liver transplant saved my life.” Read Evelyn  Rivera’s full remarks here.

ALF continues to raise awareness about the growing threat of liver disease, the need for prevention and treatment options, and the helpful policy solutions currently available. During the briefing, Ivory Allison, National Senior Director, Community Impact, ALF asked Members of Congress to support the following legislation: 

• Living Donor Protection Act (H.R. 4583) (S. 1552) prevents certain insurers from discriminating against living organ donors when obtaining or changing their coverage.Specifically, carriers may not deny, cancel or otherwise impose conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual's status as a living organ donor.
• Honor Our Living Donors Acts (H.R. 628) (S. 957) will update existing policies by the National Living Donor Assistance Center to ensure that living donors are reimbursed for their expenses without consideration of the recipient’s income. This includes covering lost wages and travel expenses associated with the donation process.
• Treat and Reduce Obesity Act (H.R. 4231) (S. 1973) will broaden Medicare coverage to include intensive behavioral health (IBH) for obesity, as well as Part D coverage to include anti-obesity medications (AOMs). It will also allow for medications to be delivered by a diverse range of healthcare providers beyond primary care physicians.
• Safe Step Act (H.R. 5509) (S. 2903) mandates that group health plans must allow exceptions to their step-therapy protocols for medication under certain conditions.Exceptions must be granted if the required treatment proves ineffective, poses a risk of adverse reactions, delays necessary effective treatment, hinders daily functions, or if the patient is stable on their current medication. The bill also requires health plans to establish and communicate a clear, accessible process for patients to request these exceptions, detailing the necessary information and criteria.
• HELP Copays Act (H.R. 6423) (S. 864) requires health insurance plans count payments made by or on behalf of enrollees, including third-party payments, financial assistance, discounts, vouchers, and other out-of-pocket expense reductions, towards the plan’s cost-sharing requirements.
• Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act (H.R. 5355) directs the Government Accountability Office to study early detection and treatment of pediatric liver tumors and trends in pediatric liver transplant wait-list mortality.

American Liver Foundation gratefully acknowledges our briefing sponsors, Merck and Eisai, for their continued leadership and support in helping us reach those most affected by liver cancer. For more information about ALF, go to www.liverfoundation.org. If you have any questions or concerns regarding liver disease, please call our FREE helpline at 1.800.GO.LIVER (800.465.4837).

About the American Liver Foundation

American Liver Foundation (ALF) is a national community of patients, caregivers and medical professionals dedicated to helping people improve their liver health. Providing guidance and life-saving resources, we are a beacon for the 100 million Americans affected by liver disease. We advocate for patients and families, fund medical research and educate the public about liver wellness and disease prevention. We bring people together through our educational programs and events and create a network of support that lasts a lifetime. ALF is the largest organization focused on all liver diseases and the trusted voice for patients and families living with liver disease. For more information visit www.liverfoundation.org or call: 1 800 GO LIVER (800-465-4837).