Autoimmune hepatitis (AIH) is a form of liver disease that differs from the more commonly known types of hepatitis, such as A, B, and C. Unlike these viral forms, AIH is not caused by an infection but occurs when the immune system mistakenly attacks the liver. As a result, it is not contagious and requires long-term immune suppression treatment rather than antiviral medication.
Cynthia Levy, M.D., a hepatologist at the University of Miami Health System, explains that AIH often goes undiagnosed until advanced symptoms appear. “There is a significant lack of awareness about AIH,” Dr. Levy said. “As with many rare diseases, it often goes unnoticed until patients develop more advanced symptoms.”
According to a 2023 epidemiology study co-authored by Dr. Levy and published in Hepatology, approximately 100,000 Americans are living with autoimmune hepatitis. The disease appears to be more common in North America and Northern Europe compared to Asian and African populations; however, differences in healthcare access and research design may influence these findings (https://journals.lww.com/hep/abstract/2023/02000/sociodemographic_and_geographic_differences_in_the.8.aspx). AIH can affect individuals at any age but is most frequently diagnosed in teenagers and older adults.
Women are three times more likely than men to be diagnosed with AIH. Dr. Levy notes: “We don’t know for sure why more women than men develop these autoimmune disorders, but there are a lot of theories.” She holds the Arthur Hertz Endowed Chair in Liver Diseases and serves as associate director of UHealth’s Schiff Center for Liver Diseases.
Researchers suggest that genetic, hormonal, and immunological factors contribute to this gender disparity. Estrogen enhances immune cell activity in women—helping fight infections—but this heightened response can also increase the risk of the immune system attacking healthy tissues like those in the liver (https://www.nih.gov/news-events/nih-research-matters/understanding-sex-differences-autoimmune-disease).
Dr. Levy highlights that diagnosis can be challenging: patients with unexplained elevated liver enzymes who have personal or family histories of autoimmune conditions—such as lupus or Type 1 diabetes—raise immediate concern for possible AIH. Up to 45% of people with AIH also have another autoimmune disorder.
The exact cause remains unknown; however, experts believe environmental triggers like certain medications or viruses may play a role in genetically susceptible individuals.
Symptoms vary widely among patients. About one-third experience no symptoms aside from abnormal bloodwork results; another third report general issues such as fatigue or joint pain; fewer than 20% show acute signs of liver dysfunction.
Diagnosis typically involves reviewing medical history, conducting blood tests, and performing a liver biopsy. Treatment usually consists of corticosteroids combined with immunosuppressants aimed at inducing remission within six months.
“When we start treatment, our goal is to induce remission, hopefully within the first six months,” Dr. Levy said. “After two to three years in remission, we can sometimes consider withdrawing immunosuppression if the liver biopsy shows complete resolution of that inflammatory process.” Patients who stop treatment must remain under regular medical supervision.
Some individuals do not respond well to therapy and may require a liver transplant due to severe complications such as liver failure or cancer.
Ongoing research aims to improve outcomes through new medications and better understanding of cellular mechanisms behind AIH. At the Schiff Center for Liver Diseases at University of Miami Health System, Dr. Levy’s work includes developing new immunosuppressive regimens and collaborating on international studies focused on different presentations of AIH.
Individuals interested in participating in clinical trials related to autoimmune hepatitis can find information on opportunities through the Schiff Center website.
