#United States #Arlington #ALS Association #ALS Treatment #ACT for ALS

Accelerating Access to ALS Treatments: The Role of the ACT for ALS Bill

In Arlington, Virginia, the ALS Association has voiced its strong support for the reintroduction of the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Reauthorization Act (H.R. 8205). This bipartisan effort is aimed at not only extending but also enhancing federal laws dedicated to ALS research.

Since its original enactment in 2021, ACT for ALS has proven instrumental in hastening the development of new therapies. It has also facilitated broader access to investigational treatments and fostered improved coordination among the ALS research community. The reauthorization aims to extend these crucial programs through 2031 and amplify their efficacy. This includes introducing more accountability in clinical trials, enhancing transparency at the Food and Drug Administration (FDA), and placing a sharper focus on the needs of individuals living with ALS.

Calaneet Balas, President and CEO of the ALS Association, expressed pride in the strides that ACT for ALS has allowed. Balas stated, *"ACT for ALS has already changed what's possible for people living with ALS – and our volunteers and staff fought to make this reauthorization even stronger. More accountability. Fewer barriers. Faster pathways to get promising treatments to the people who need them."

The urgency of this reauthorization cannot be overstated. ALS patients, faced with a progressive neurodegenerative disease, often endure diminishing abilities to move, speak, and ultimately breathe. The timeline for these patients is typically marked by a five-year prognosis after diagnosis, creating a need for immediate action in treatment development. A recent breakthrough drug, Qalsody®, represents a significant step forward in treating SOD1-ALS, as it has shown potential to not just slow progression but even restore some lost functionalities. However, this milestone reaches merely 2% of the ALS population; for the remaining 98%, viable treatment options remain elusive. Therefore, closing this gap necessitates a combination of bold federal policies and ongoing investments in ALS research.

To sustain this momentum, the ALS Association is currently channeling $39 million into over 100 active research grants. Additionally, they have initiated the Accelerate the Cure campaign with the ambitious aim of raising $1 million to bolster these efforts.

Without swift reauthorization, pivotal programs supporting vital research and expanded access to experimental therapies face the threat of expiration by 2026. This would not only impede ongoing progress but also jeopardize future advancements when opportunities for breakthroughs like no other loom closer.

The ALS Association is pressing Congress to act promptly on the ACT for ALS Reauthorization Act, as every day counts for those living with the disease who cannot afford to wait.

About the ALS Association

The ALS Association stands as the most prominent organization focused on ALS across the globe. Engaging in funding research collaborations worldwide, the Association provides assistance to ALS patients and their families through a comprehensive network of certified clinical care centers and advocates for improved public policies benefiting those affected by ALS. Their ultimate mission is to make living with ALS manageable and work toward finding a cure. To learn more about their efforts, visit www.als.org.

Understanding ALS

Amyotrophic lateral sclerosis (ALS) is characterized by its relentless progression as a neurodegenerative disorder that compromises the nerve cells in the brain and spinal cord. Individuals afflicted with this condition face gradual loss of motor functions, and sadly, the prognosis is fatal, with limited options currently available for treatment, thereby leaving a significant unmet need for novel therapies that could alter the disease's trajectory.