Written testimony from ALF’s CEO Lorraine Stiehl to House Committee on Appropriations

Statement of:
Lorraine Stiehl, Chief Executive Officer, American Liver Foundation

On behalf of: 
The American Liver Foundation
PO Box 299, West Orange, NJ 07052

Submitted to:
The House Committee on Appropriations 
Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (L-HHS)

Regarding: 
Fiscal Year (FY) 2024 appropriations for programmatic funding towards liver health and liver diseases research and public health programs within the U.S. Department of Health and Human Services.

Submitted on:
March 23, 2023 

Summary of FY 2024 Appropriations Recommendations
Please provide $1,500,000 in programmatic funding through the U.S. Department of Health & Human Service for a National Academies Study on Nonalcoholic Fatty Liver Disease (NAFLD).

Dear Chairman Aderholt, Ranking Member DeLauro, and distinguished members of the Subcommittee,

Thank you for the opportunity to submit testimony on behalf of the American Liver Foundation (ALF) and the liver disease community. We extend our thanks for the significant investments in HHS, particularly CDC and the emerging Chronic Disease Education and Awareness program, provided over recent years. Please maintain this commitment and further enhance support for public health programs as you work with your colleagues on appropriations for FY 2024. We hope this Committee and Congress will continue to invest resources in key areas that will improve health, including efforts around disease prevention, screening, and treatment.

We also seek to ask for programmatic funding through HHS to fund a study on nonalcoholic fatty liver disease (NAFLD) through the National Academies of Sciences, Engineering, and Medicine. Below are details about our work and our requests. We truly hope you can make this request a reality to help us in our first step toward combating this “silent” disease affecting 80-100 million individuals in the U.S., most of whom are unaware they even have it. Thank you, again, for your time and consideration. 

About the Foundation 

Founded in 1976, ALF is the nation’s largest patient advocacy organization for people with liver disease. ALF reaches more than 4 million individuals each year with health information, education, and support services via its national office and an active online presence that leverages a robust multi-channel digital platform. Recognized as a trusted voice for liver disease patients, ALF also operates a national toll-free helpline (1-800-GO-LIVER), educates patients, policymakers, and the public, while also providing grants to early-career researchers to help find a cure for all liver diseases. For more than 45 years, ALF has been turning patients into survivors. For more information about ALF, please visit www.liverfoundation.org. 

Fatty Liver Disease

Nonalcoholic Fatty Liver Disease (NAFLD)*

The liver is one of the body’s largest organs, performing hundreds of functions daily including, the removal of harmful substances from the blood, digestion of fat, and storing of energy.  NAFLD is caused by excess fat buildup in the liver, has few or no symptoms, and is the most common cause of liver disease worldwide affecting 1 billion people. According to some sources, NAFLD affects 80-100 million people in the U.S., most unaware they even have it. The disease disproportionately affects communities of color. It is not caused by heavy alcohol use (alcohol-associated liver disease). Risk factors include being overweight/obesity, type 2 diabetes/insulin resistance, high cholesterol/triglyceride levels, one or more traits of metabolic syndrome (traits and medical conditions linked to overweight/obesity), and older age. Research estimates that NAFLD is present in up to 75% of overweight people and in more than 90% of people with severe obesity. 

Nonalcoholic steatohepatitis (NASH)^

Among those with NAFLD, about 25% (studies estimate about 9-15 million) are diagnosed with Nonalcoholic steatohepatitis (NASH), which is a dangerously progressive form of NAFLD in which patients have inflammation of the liver and liver damage, in addition to excess fat. NASH is expected to become the leading cause of liver transplantation in the U.S. in the next two years.

How Children are Affected by Nonalcoholic Fatty Liver Disease (NAFLD)

NAFLD has become the most common form of childhood liver disease in the U.S., more than doubling over the past 20 years, partly because of the increase in childhood obesity. Studies estimate that 5% to 10% of children have NAFLD. 

Patient Perspectives 

Shawanna- “In March of 2020, I saw my primary care physician for routine bloodwork. My physician called the next day informing me of elevated liver enzymes, and the need to repeat my labs. My doctor informed me she was calling a hepatologist on my behalf because she was deeply concerned and wanted me to be seen by a hepatologist ASAP. The next few months were very emotional for me and my family. I had multiple ultrasounds, MRIs, and ultimately a liver biopsy. In the end, I was diagnosed with NAFLD and NASH. Since there is no cure, the only advice I was given was diet and exercise. In six months, I lost 50 pounds and went from F3-F1 Fibrosis. Through researching my disease, I learned this disease is on the rise in children and adolescents, and because I am an educator, I became an advocate for our most vulnerable- our children. I started “Shawanna’s Strut and Stroll for NAFLD” to raise awareness and money for research because I do not want anyone to go through what I experienced. The physical toll is difficult, but the mental/emotional aspect is equally draining because people have no idea how serious the disease is and how many people die because this disease is not taken seriously. We need help fighting this disease!!!”

Karl- “I was working in the medical profession ten to fourteen-hour days while being on call 7 days a week. In December 2019, I got very sick and became very lethargic and began sleeping all day and night. In February 2020, I was diagnosed with NASH with Stage 3 liver failure. Finding out that there was no specific treatment and the only option that may result in a positive outcome would be a liver transplant was devastating. Because of my medical background, I realized that for the rest of my life, I will be a prisoner of this horrible disease. Now I worry about my diet, a scratch that would not become infected, bleeding that takes longer than normal to clot, ensuring to cover my body with body lotion 3-4 times a day to prevent my skin from cracking and being susceptible to an infection, and most of all, the possibility that I am at significant risk in developing liver cancer is a part of my daily life. Increased research, education, and treatment options will be the key to decreasing the cost of the long-term treatment of this disease.”

Our Request:  We respectfully ask that through the U.S. Department of Health & Human Services, programmatic funding of $1,500,000 is appropriated to fund a study on nonalcoholic fatty liver disease (NAFLD) through the National Academies of Sciences, Engineering, and Medicine. The recommendations that yield from this study will allow us and Congress to best address this growing disease and its impact on individuals and the U.S. health care system.

*Nonalcoholic fatty liver disease (NAFLD) has been newly renamed metabolic dysfunction associated steatotic liver disease (MASLD).

^Nonalcoholic Steatohepatitis (NASH) has been newly renamed metabolic dysfunction associated steatohepatitis or MASH.

Last updated on January 18th, 2024 at 09:01 am