People with ALS and their caregivers face a substantial burden accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and debt for the ALS community.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.
ALS Focus™ surveys collect the preferences, needs, perceptions and experiences of people living with ALS and ALS caregivers in the United States, bringing their lived experiences to the forefront. You can find summaries of these results linked below.