Why We Walk: Advocacy

The ALS Association is the only ALS non-profit organization to support people with ALS on every front — care services, research and advocacy. Find out how money raised by Walk teams all over the country positively impact these important mission priorities.

With significant wins behind us, The ALS Association will continue to focus on key public policy objectives going forward — for those living with the disease and those yet to be diagnosed. Today and every day, we will work together to mobilize the ALS community, bringing them together to speak with one voice.

Each year thousands of people work in their own communities, travel to Washington, D.C., send letters and make phone calls to government officials to demand changes in legislation and support initiatives that will improve the lives of people with ALS and their families. This is in addition to the 1,000 people that annually attend our National ALS Advocacy Day in Washington, D.C. to lobby Members of Congress to support vital ALS legislative priorities.

Our Advocacy Efforts help to:

  • Ensure access to treatment for patients with ALS — currently 80% of people with ALS receive care from government programs.
  • Advance regulatory and legislative and policies and initiatives to speed the development and approval of new treatments.
  • Secure $80 Million annually in government funding of ALS Research.
  • We worked to eliminate the 24-Month waiting period for the Medicare Waiver for ALS patients. ALS is now one of only two diseases for which the waiting period does not apply. This is the ONLY change that Congress has made to the waiting period since it was established.

A recent win for the ALS community was that the Centers of Medicaid and Medicaid Services (CMS) announced that they will not move forward on plans to apply competitive bid rates to Complex Rehab Technology (CRT) power wheelchairs and accessories.

This policy change means that people living with ALS and other neuromuscular diseases will continue to have access to medically necessary equipment CRT, including custom head support and seating systems, mounting hardware, adjustable leg rests and specialty drive controls.

On May 2, 2017, the FDA approved Radicava, the first new drug specifically for ALS to be approved in 22 years. Through The ALS Association’s advocacy efforts, the drug was moved quickly through the approval process for people with ALS to gain access to this newly approved drug.

Lastly, we spur innovation. The first ever FDA Guidance Document was submitted to the Federal Drug Administration (FDA) that clarifies and expedites the regulatory pathway to drug approval. We collaborated with members throughout the ALS community, including people living with ALS and their family members to develop the document. It will serve as a roadmap to help industry navigate the development process and provide the Agency with an ALS community-centered view of the disease and how it should approach potential therapies for ALS.

Learn more about Advocacy.

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