Liver disease affects more than 100 million Americans yet federal investment in early diagnosis, patient access, better treatments and research lag far behind other diseases. This summer, American Liver Foundation (ALF) advocates will meet virtually and in-person with elected officials in their local cities and towns to share their liver stories and lend their voices to urge action.
The Lend Your Voice campaign kicks off with a virtual advocate training on July 20th from 7PM to 8PM ET followed by local meetings in August. Whether you have liver disease, are a family member or friend, a caregiver, or a medical professional, your voice matters and needs to be heard. The virtual training will cover key messages, how to schedule a meeting or how ALF can schedule one for you, how to tell your story, a social media toolkit, and much more. No prior experience is necessary to participate—just the willingness to lend your voice.
“There is nothing more powerful than a patient’s own story,” said Lorraine Stiehl, Chief Executive Officer of American Liver Foundation. “We need better treatments, lower cost prescriptions, protections for living donors, increased public awareness and investment in research and none of that will happen without your voice.”
With fatty liver disease (now called steatotic liver disease or SLD) on the rise it is expected to be the leading cause of liver transplants by 2025, yet most people are unaware they even have it. Liver cancer is the most rapidly growing cause of cancer deaths in the U.S. Liver cancer death rates have more than doubled since 1980.
Fatty liver disease 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 fatty liver disease.
“I became an advocate for ALF after being diagnosed with the rare disease, PBC. As a nurse I had never heard of it, but it changed my entire life,” said Jessica Schnur of Evansville, IN. “Healthcare providers and my friends and family members did not have any knowledge of the disease and it became my mission to educate not only myself but the general public about PBC. By sharing my story with Members of Congress I have been able to help ensure more research/funding for liver patients across the country and work towards cancelling the stigma against liver patients.”
Your liver is essential to your life. It is the largest solid internal organ in the body. It is about the size of a football and weighs about 3 to 3.5 pounds (1.36–1.59kg). It is located on your right side, just under your rib cage. The liver performs many vital functions, including filtering toxins from your blood, managing blood clotting, making bile to digest fat, storing sugar for energy, turning extra glucose into glycogen, making protein for blood plasma, and helping with digestion.
There are many kinds of liver diseases and conditions, the most common are hepatitis viruses, nonalcoholic fatty liver disease (NAFLD), now called metabolic dysfunction-associated steatotic liver disease or MASLD, autoimmune diseases, genetic conditions, cancer, and others. More than 100 million people in the U.S. have some form of liver disease. 4.5 million U.S. adults (1.8%) have been diagnosed with liver disease. But it is estimated that 80-100 million adults in the U.S. have fatty liver disease, and many do not know they have it. Research estimates that fatty liver disease is present in up to 75% of overweight people and in more than 90% with severe obesity. Globally, it affects one billion people. In 2020, 51,642 adults in the U.S. died from liver disease (15.7 per 100,000 population).
The American Liver Foundation is the nation’s largest non-profit organization focused solely on promoting liver health and disease prevention. The American Liver Foundation achieves its mission in the fight against liver disease by funding scientific research, education for medical professionals, advocacy, information and support programs for patients and their families as well as public awareness campaigns about liver wellness and disease prevention. The mission of the American Liver Foundation is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease.
Last updated on December 14th, 2023 at 08:33 am