The Burden of Rare Pediatric Liver Diseases

Описание: There are over 100 liver diseases, the majority of which impact children and are often overshadowed. In addition to the physical, psychosocial, and financial challenges associated with any liver disease, a patient with a rare liver disease can face additional burdens such as an invasive diagnosis and, if even available, costly treatments.

In the absence of available treatments, there are safe and effective management options like vitamin replacement therapy and specialized nutrition. However, many insurers will not cover the cost of these therapies because they are considered “medical foods.”

Watch the replay of this virtual briefing to hear directly from patients, patient advocacy organizations, and providers, about the challenges and opportunities surrounding rare liver diseases. Also learn about available bipartisan and bicameral legislative solutions that can increase access to important care options, like medically necessary foods, for all people impacted by rare liver conditions.

This briefing was presented on February 25, 2022 in partnership with the PFIC Network and NASPGHAN, featuring GLI Policy Director Andrew Scott; Dr. Rohit Kohli, MBBS, MS, FAASLD, Chief of Gastroenterology, Hepatology and Nutrition at the Children’s Hospital Los Angeles; Emily Ventura, PFIC Caregiver and Executive Director of the PFIC Network, and PSC/AIH patient; and GLI pediatric and rare program manager Nicole Wells, MA.