Advocacy Guiding Principles
As we consider legislative, regulatory and other policy proposals, we measure them against The ALS Association’s mission: 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.
Our public policy priorities are grounded in our advocacy guiding principles, maintaining that policy proposals must preserve and/or enhance health care, benefits and services for those who have them; provide coverage to those who don’t; and lower costs and improve quality for all.
These goals must be achieved at the federal and state level, and in both public and private settings. In addition, research funding must be preserved and increased; people living with ALS must not be discriminated against; and resources and support for caregivers must be increased.
- Protect and expand access to health care, benefits and services.
People living 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 living with ALS on every front to break down barriers to health care, benefits and support services.
- 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 living 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.
- Fight for people living with ALS on a wide range of issues.
People living with ALS should be protected against discrimination in all settings, including in the workplace, when purchasing health insurance or when 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.
- Increase resources and support for families and caregivers of people living with ALS.
Families and caregivers are the lifeline for people living 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, support and financial aid.