Number of US ALS cases expected to increase 10% this decade: Study
With aging population, over 36K patients estimated to have ALS by 2030
The number of people living with amyotrophic lateral sclerosis (ALS) in the U.S. is expected to steadily climb — by more than 10% — over this decade, increasing from an estimated 32,800 cases in 2022 to about 36,300 in 2030, according to a new study from researchers with the Centers for Disease Control and Prevention (CDC).
The researchers attributed this increase mainly to the aging U.S. population, as ALS is more common in older people. Among individuals ages 66 and older, the number of cases is projected to jump by 25%.
“The prevalence of ALS is projected to increase through 2030 … unless preventive measures are introduced,” the researchers wrote, noting an expected rise in ALS cases for “most populations.”
“To alleviate this burden, we need more research into making ALS a livable disease,” the team added.
The study, “Amyotrophic lateral sclerosis estimated prevalence cases from 2022 to 2030, data from the national ALS Registry,” was published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
Seeking to estimate number of ALS cases in US, and changes over time
ALS is a serious neurological condition that negatively impacts patients, their caregivers, and loved ones. While some treatments are available, their ability to slow disease progression and extend survival remains limited, making ALS a significant burden on the healthcare system.
Still, it’s been difficult to precisely estimate how many people are living with ALS in the U.S. — data that are essential for informing healthcare decisions and tailoring practices to better meet the needs of patients and their families.
Since its launch in 2010, the National ALS Registry — maintained by the federal Agency for Toxic Substances and Disease Registry, or ATSDR — has gathered data from multiple sources, including existing databases and self-reported information, to garner information about who develops the condition and the potential risk factors that may trigger ALS.
According to the researchers, analyses from scientists at the CDC and the ATSDR “have described the public health burden of ALS in the United States, specifically state and national prevalence and incidence and mortality estimates.”
Now, using data from the registry as well as census projections for the coming years, a team from the CDC and the ATSDR set out to estimate how ALS cases will evolve through 2030.
Prevalence data was not available for the years 2022 and 2024. The team used data from 2018, which had the most complete set of statistics thus far, to make estimates for those years based on available demographic data. The researchers then made estimates for the following years based on demographic projections.
The findings showed that ALS cases are expected to gradually increase over the years until the decade’s end. The projections for 2030 reached 36,308 cases, or a prevalence of 10.5 per 100,000 people. That represents a more than 10% increase from 2022 estimates — in which about 32,893 people were believed to be living with ALS, for a prevalence of 9.9 per 100,000 people that year.
“This is a prevalence increase of approximately 0.1 cases per year,” the researchers wrote. That would mean that one more person per million in the U.S. — which has a current estimated population of about 340 million — would develop ALS each year.
Aging cited as greatest driver of expected ALS prevalence increase
Importantly, as noted by the researchers, the greatest driver of the increased prevalence is the U.S. population’s growing older age. The team estimated that, just among people ages 66 and older, cases would rise from 16,349 in 2022 to 20,438 in 2030.
“As the population of the United States grows and ages, ALS prevalence will steadily increase,” the researchers wrote.
Cases are also expected to increase in the group of patients ages 18-50, though slightly — about 60 more cases in 2030 than in 2022, the estimates show. Conversely, due to an expected drop in the number of people ages 51-65 in 2030, cases in that group are expected to decrease by about 730.
Overall, ALS is a disease that affects men slightly more frequently than women; that trend is not expected to change by 2030. White people will also continue to account for the majority of cases, though the researchers expect a greater prevalence in the number of cases in people of “other races” due to an increase in that population.
As the population of the United States grows and ages, ALS prevalence will steadily increase. … These results should inform policy to more efficiently allocate resources for ALS patients and programs.
“These results should inform policy to more efficiently allocate resources for ALS patients and programs,” the team wrote. While ALS prevalence projections are based on the assumption that current trends in the population and ALS treatments will continue, advancements in medical care and therapies could alter these estimates, the team noted.
Identifying potential risk factors and preventive measures that could reduce a person’s exposure to factors that increase the likelihood of ALS may also help reduce the disease’s impact in the future, according to the researchers.
They noted, however, that these projections “are likely an underestimation because emerging therapeutics and improved healthcare will improve survivability” among ALS patients.
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