State Policy & Advocacy

Our goal is to make ALS a livable disease while we continue to search for new treatments and cures. In 2022, we began implementing the infrastructure for a hyper-targeted, nimble, and impactful state policy and advocacy program. Through collaboration with ALS advocates, staff, and The Association’s Public Policy Committee, we’ve established a unified state policy agenda that includes 12 policy priorities in alignment with our goals to 1) advance critical policies that help to find new treatments and cures, 2) optimize current treatments and care, and 3) prevent or delay the harms associated with ALS. 

State policymakers have the power to change the future of ALS by taking action on The ALS Association’s public policy priorities.

Our advocacy work focuses on educating and mobilizing the 7,383 state legislators holding office today, state regulators and executives, and building out an active ALS advocate network to drive change centered in the voices of those impacted by ALS. We advance policy in a nonpartisan manner to achieve our mission. 

BECOME AN ADVOCATE

Katie A_Andy Beshear

Spotlight: Expanding Medigap Coverage in Kentucky

Katie Adams, an ALS advocate, with her family and Kentucky Governor Andy Beshear at the signing ceremony for legislation expanding Medigap insurance coverage.

Read Katie's Story

State Policy and Advocacy 2024 Mid-Year Report

Find Your State

Select your state to learn more about local policy priorities and find tools and resources to aid ALS advocates, staff, and coalition partners in your advocacy efforts.

Guidance for Denials Beyond an Appeal
Insurance denials can be daunting. In addition to working with providers to file an appeal, there are other steps to secure access.
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