Every 90 minutes someone is diagnosed and passes from ALS

90% of cases occur without a family history

Onset is usually between the ages 40 & 70 years

Life expectancy is 2 to 4 years

By 2040 ALS incidence is predicted to increase worldwide by 70%

Results:The number of estimated ALS cases in 2022 was 32,893. By 2030, projected cases increase more than 10%, to 36,308. The largest increase occurs for the population ages 66 years and older, with a 25% increase (from 16,349 cases in 2022 to 20,438 cases in 2030). The projected number of cases classified as "other race" will increase by 15% (from 2,473 cases in 2022 to 2,854 cases in 2030).

Economic burden of ALS:

Annual national costs associated with ALS

The annual national costs associated with ALS in the U.S. are estimated to reach up to $1.02 billion.

The annual national costs associated with ALS in the United States are substantial, with estimates reaching up to $1.02 billion. This figure encompasses both direct and indirect expenses, including hospitalization, treatment, nonhospital care, productivity loss, home adaptations, and travel costs. The complexity of ALS care is reflected in the varied cost structures across different insurance systems, with drug costs constituting a significant portion of medical expenses.

Individual and family financial burden.

The individual and family financial burden of ALS is substantial and multifaceted. A case study revealed staggering total disease-duration costs of $1,433,992, with 85% covered by insurance, 9% paid by the family, and 6% by charities[^14]. This financial strain is further compounded by significant non-medical out-of-pocket costs and lost income. The burden escalates as the disease progresses, with mean annual costs ranging from €30,086 in King's stage 1 to €125,871 in King's stage 4B[^15]. Informal care costs, primarily provided by family members, constitute a significant portion of the total cost of illness, highlighting the hidden economic impact on caregivers.