ALS costs may reach $1.02B each year in US, study finds

Those most likely to be living with ALS are men, veterans, white people

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

Share this article:

Share article via email
A pill bottle sits next to a broken piggy bank, patched with a Band-Aid, with a few pills next to it.

There are currently up to 18,000 people living with amyotrophic lateral sclerosis (ALS) in the U.S., with national costs likely to reach $1.02 billion each year, a study has found.

Researchers also observed that men, white people, and veterans appear more likely to develop the disease.

“However, large-scale, population-based studies are necessary to precisely assess US epidemiology of ALS and capture all costs needed to inform cost-effectiveness models and resource planning,” researchers wrote.

The study, “Epidemiology and economic burden of amyotrophic lateral sclerosis in the United States: a literature review,” was published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

ALS is a disease that damages nerve cells in the brain and spinal cord, leading to muscle weakness, twitching, and a gradual loss of strength, with symptoms worsening over time.

This means that “the clinical management and care required throughout the disease course currently leads to considerable cost and healthcare resource use (HCRU) burden for people with ALS, their families, and healthcare systems,” researchers wrote.

Recommended Reading
A person shown sitting in a wheelchair.

MDA 2023: Patients typically need wheelchairs within 2 years of onset

Analysis on epidemiology, costs associated with ALS

To provide an up-to-date analysis of the current state of ALS in the U.S., researchers screened literature available since January 2016 for data on the epidemiology and costs associated with ALS. Epidemiology refers to how a disease is distributed across the country.

Eight studies on the epidemiology of ALS and 18 studies on its costs and HCRU were included. Only data from the U.S. were considered, and costs were inflated to the year of 2020/2021 to account for changes in buying power.

Two studies reported on the incidence of ALS, which refers to the number of new cases occurring over a period of time. Both studies had a similar rate of 1.54 and 1.52 per 100,000 person-years, a measure of time per person used when individuals are at risk of developing a disease.

Estimates of one-year prevalence, which refers to the number of individuals who have ALS among the U.S. population at any time during a year, ranged from 3.84 to 5.56 per 100,000 population. Two studies indicated that prevalence may be increasing over time, while others failed to identify a possible increase.

“Conflicting evidence on whether prevalence of ALS is increasing over time was identified, which may be due to the different diagnostic criteria used and the limited time period (up to four years) over which data were collected,” the researchers wrote.

One study reported that incidence was about 1.5 times higher in men than in women (1.88 vs 1.21 per 100,000 person-years). Another study identified a high prevalence of ALS among U.S. veterans (19.7 per 100,000 people).

Moreover, there were more new cases of ALS occurring among white people (2.46 per 100,000 person-years) than among Black (0.94 per 100,000 person-years) or Asian (0.62 per 100,000 person-years) people.

Annual costs of ALS

Two studies reported on the national annual costs related to ALS, calculated based on the sum of the total per patient costs (direct and indirect). These ranged from around $212 million (based on the lowest estimated prevalence of 3,396 patients) to around $1.4 billion (based on the highest estimated prevalence of 22,847 patients).

Using a prevalence of 16,055 cases, which would best align with the reported estimates (about 13,000-18,000 cases), the national costs are likely to be close to $1.02 billion.

Both direct and indirect costs associated with HCRU contributed to the total costs. Direct costs include hospitalization, treatment, and nonhospital care costs, while indirect costs include productivity loss (including caregiver productivity loss), home adaptations, and travel costs.

However, how much each contributed varied across studies.

“There is therefore a need for large-scale, prospective, population-based studies to provide an accurate picture of the epidemiological, cost and HCRU burden of ALS in the US,” the researchers wrote. “Such data would inform ongoing clinical trials and cost-effectiveness models for ALS treatments in the pipeline, and better support equitable healthcare resource planning.”