#United States #Arlington #ALS Association #ALS Policy #State Report

The ALS Association’s State Policy Report Cards: An Overview

As the 2025 legislative sessions commence, the ALS Association has unveiled its latest ALS State Policy Report Cards, which provide crucial insights into how effectively each of the 50 states, along with Washington, D.C., are addressing the needs of the ALS community. This initiative aims not only to celebrate positive progress but also to outline critical areas where enhancements can be made, ensuring better quality of life for those living with ALS.

These report cards assign letter grades to states based on their advancements in key policy areas that are vital for making ALS a manageable condition for everyone. Key policy priorities include:

• - Funding for ALS Clinics and Care Services: Ensuring that dedicated resources are allocated to support clinical services that directly assist ALS patients and their families.
• - Affordable Medigap Insurance Plans: Legislation must guarantee that individuals living with ALS have access to affordable health coverage options.
• - Insurance Approval Process Reforms: Strategies aimed at reducing unnecessary delays or denials in obtaining necessary medical services must be put in place.
• - Removal of Step-Therapy Requirements: Policies that impose burdensome fail-first requirements on ALS patients could be detrimental; therefore, they should be eliminated.
• - Addressing Copay Accumulator Programs: Legislative efforts are required to confront unfair practices that prevent patients from receiving the full benefit of their health insurance.

Alex Meixner, Vice President of state policy at the ALS Association, highlighted the significant potential for governors and state legislators to make tangible improvements in the lives of constituents affected by ALS. He noted, "These report cards not only illuminate the commendable actions taken in many states but also serve as a clarion call to elevate efforts further. Together, we must ensure that all ALS patients have access to the care they require."

Recognized for their exemplary performance, New York stands out as the only state to achieve straight A's. Other states demonstrating commendable progress include Arkansas, Massachusetts, Minnesota, New Mexico, Pennsylvania, and Virginia, all of which scored B averages or better. Conversely, several states, including Alaska, Hawaii, Idaho, Montana, and others, received D averages or worse, indicating a pressing need for policy improvements.

The ALS Association expressed optimism regarding the potential for all states to enhance their standings during the 2025 legislative sessions. They believe that proactive policy measures at all government levels are essential to fulfilling the vision of making ALS livable and eventually discovering a cure.

Meixner reinforced this sentiment, stating, "Whether a state leads, ranks last, or lies somewhere in between, there is always an opportunity for progress. By maintaining advocacy and collaboration, we can implement policies that further enhance the livability of ALS and fuel the quest for a cure."

For those intrigued to learn how their respective states fare in this evaluation or wishing to get involved as advocates, the ALS Association encourages them to explore their rankings directly.

About the ALS Association

The ALS Association holds the title of the world's largest ALS organization. It plays a pivotal role in funding global research collaborations, aiding individuals with ALS and their families through a nationwide network of certified care and clinical centers, and advocating for improved public policies. With a mission to transform ALS into a livable condition while ardently searching for new treatments and a cure, the ALS Association remains deeply committed to its cause. For more details, visit www.als.org.

Understanding ALS

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. Its progression leads individuals to lose the ability to move, speak, and eventually breathe, typically resulting in death within five years post-diagnosis. Given the limited treatment options available, there exists a critical demand for innovative therapies.