ALS Public Policy in the United States

The burden of amyotrophic lateral sclerosis (ALS) in the United States continues to grow as the aging population increases. Access to high-quality care varies depending on a patient’s medical insurance, geographical location and socioeconomic status. The National ALS Registry was established in 2010 and is a vital resource of epidemiology including the identification of possible environmental risk factors. The federal insurance program Medicare provides clinical care for most patients with ALS. More recently, identification of military service as a risk factor for developing ALS has resulted in significant medical and financial support provided through the Department of Veterans Affairs (VA). The estimated annual costs of providing clinical care for patients with ALS in the United States ranges from $1.05 to 2.25 billion. The National Institute of Neurological Diseases and Stroke under the National Institutes of Health (NIH) provides most public ALS research funding, but non-governmental and philanthropic ALS organizations contribute substantially to research support.