New Study Highlights the Urgent Need for ALS Care as Prevalence Grows Dramatically

Dramatic Rise in ALS Prevalence Projected by 2040



A new study co-authored by the ALS Association and published in the Annals of Clinical and Translational Neurology reveals that the number of individuals living with amyotrophic lateral sclerosis (ALS) is projected to increase substantially over the next 15 years. This alarming forecast underscores the urgent necessity to enhance the care and support available to those affected by this debilitating condition.

According to the findings, taking into account demographic shifts like an aging population and advances in treatment leading to improved survival rates, the prevalence of ALS is anticipated to climb by 25% across multiple countries globally by 2040. Specifically, the study estimates that in the United States, the rate of prevalence will rise from 9.68 per 100,000 people in 2024 to 11.21 per 100,000 by 2040. This translates to nearly 9,000 additional individuals living with ALS nationwide. Alarmingly, if a forthcoming treatment were to extend survival by just six months, the prevalence rate could surge to approximately 12.01 per 100,000.

Dr. Rosario Vasta, an assistant professor at the University of Turin, who led the research, emphasized the broader implications of this increase. 'These findings suggest that ALS, typically classified as a rare disease, is poised to impact an increasingly larger segment of the population worldwide in the coming decades,' he stated. 'This situation necessitates meticulous planning concerning healthcare resources, allocation of funds, and prioritization of research.'

The researchers utilized high-quality data from the Piemonte and Valle d'Aosta region of Italy over a 14-year span, from 2005 to 2019, to analyze trends related to the incidence, survival, and overall prevalence of ALS. They then extended these estimates forward to the year 2040.

One key factor driving this projected increase is the advancements in ALS care. Dr. Kuldip Dave, senior vice president of research at the ALS Association and a co-author of the study, noted that greater accessibility to multidisciplinary care has been vital to prolonging survival and enhancing the quality of life for ALS patients. He stated, 'More individuals can now access integrated care which, as established, prolongs life and enhances the quality of living conditions.' This paradigm shift in treatment access is critical as increased awareness leads to earlier diagnosis and initiation of appropriate therapies that can provide meaningful benefits.

As the number of individuals affected by ALS grows, the ALS Association is responding strategically to the rising need for care and support. Their proactive initiatives aim to ensure that all ALS patients have access to affordable care, treatments, and necessary services. Dr. Dave elaborated on this commitment, saying, 'We are acting now to make certain that everyone living with ALS has access to resources as these demands will only increase. Our mission is to make living with ALS possible for everyone and strive for a future where a cure is found.'

In addition to projecting future trends related to ALS prevalence in 15 different countries, the researchers have developed an interactive online tool. This resource allows users to simulate how changes in factors such as survival rates, incidence, and demographics could impact regional prevalence estimates. Available at preals.als.org, the tool is intended as a means to encourage further understanding and exploration of the domain of ALS.

The ALS Association stands as the most significant organization dedicated to ALS globally. It focuses on funding collaborative research initiatives, providing essential support to individuals with ALS and their families through an extensive network of certified clinical care facilities, and advocating for improved public policies benefitting those living with ALS. Their mission remains clear: to make ALS a livable condition and ultimately, to cure it.

About ALS


Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative ailment that primarily affects nerve cells in both the brain and spinal cord. As the disease progresses, individuals gradually lose the ability to move, speak, and breathe, resulting in fatal outcomes typically within five years post-diagnosis. The scarcity of effective treatment options underscores the urgent need for innovative new therapies that address the various challenges associated with ALS and its progression.

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