Advocacy Guiding Principles

As legislative, regulatory, and other policy proposals are considered, they must be measured against the mission and values of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

The ALS Association’s public policy priorities are grounded in our advocacy guiding principles which maintain that policy proposals must preserve and/or enhance health care, benefits, and services for those who have it, provide coverage to those who do not, and lower costs and improve quality for all. This must be achieved at the federal and state level and in both public and private settings. Research funding must be preserved and increased, people with ALS must not be discriminated against, and resources and support for caregivers must be increased.

Principles

  1. Protect and expand access to health care, benefits, and services: 
    People with ALS and their families must have health care that is accessible, affordable, adequate and understandable. The ALS Association is committed to fighting for people with ALS on every front to break down barriers to health care, benefits, and support services.
     
  2. Preserve and increase support for ALS research: 
    Funding and support must be provided for research in all phases to discover new life-extending therapies and technologies for people with ALS. The ALS Association is dedicated to ensuring laws, regulations and incentives relating to the therapy development process effectively and expeditiously promote new interventions and, ultimately, a cure for ALS.
     
  3. Fight for people living with ALS on a wide range of issues: 
    People with ALS should be protected against discrimination in all settings, including in the workplace, when purchasing health insurance, or receiving veterans’ benefits. The ALS Association monitors legislation and regulation regarding health care, disability rights, taxation, and more to ensure the ALS community is represented.
     
  4. Increase resources and support for families and caregivers of people with ALS
    Families and caregivers are the lifeline for people with ALS and must be recognized and supported. The ALS Association believes federal, state and private programs must do more for families and caregivers in terms of programs, supports and financial aid.