Public Policy Priorities

Our advocacy work focuses on educating and mobilizing members of Congress, State Legislators, and the Federal and State government in a nonpartisan way to provide comprehensive support and advocacy for people with ALS and their families, while advancing research for new treatments and an end to ALS.

The Jenson Family with Executive Director Lance Christian at Representative Earl Blumenauer's office.

ALS Northwest is aggressively advocating for legislative priorities that make a difference for people with ALS.

We thrive on being collaborative and working with any and all stakeholders in the ALS community to improve the lives of people with ALS. Join our advocacy interest group for calls to action and to get information on ALS Advocacy initiatives.

Federal Advocacy Priorities

Build and grow the ALS Caucus in the House of Representatives and the Senate

The House and Senate ALS Caucuses are on a mission to bring together members of Congress from both sides of the aisle to share experiences, exchange ideas, and collaborate to find a cure for ALS. They do so by raising awareness about the challenges faced by ALS patients and their families, thinking creatively about policy solutions to reduce the negative impacts of ALS and investing in groundbreaking research.

Our advocacy efforts involve meeting with our Congressional delegation to educate them about ALS and its impact. Our goal is to have every member of Congress from the Northwest become a Member of the ALS Caucus in their respective body.

118th Oregon and SW Washington Congress members in the ALS Caucus:

Senator Jeff Merkley, Oregon

Senator Maria Cantwell, Washington

Rep. Suzanne Bonamici, Oregon

Secure congressional funding for ALS research

Each year Congress completes a complicated appropriations process to fund the federal government. The single largest funder of ALS Research in the world is the US Government. Keeping the needs of ALS at the forefront of the minds of Congress members is crucial to keep funding secure.

Our activities involve asking our congressional delegation to commit to supporting ALS by signing Dear Colleague Letters for ALS Appropriations including support for:

ALS Research Funding at the National Institutes of Health
The ALS Research Program (ALSRP) at the Department of Defense (DOD)
Funding for the ACT for ALS Act: ALS Research and Expanded Access Funding
Support for the National ALS Registry and Biorepository – Centers for Disease Control and Prevention (CDC)

Pass other congressional acts that improve or impact the lives of people with ALS

There is often legislation before Congress that makes a difference for people with ALS and their families. Sometimes these bills are ALS specific, and sometimes they impact the larger community but are important to people with ALS. We make sure the voices of people with ALS are represented on those issues. Priorities include:

Passing the Elizabeth Dole Home Care Act S. 326: This expands Veterans Directed Care and similar programs to all VA medical centers; creates a pilot program to provide home health aide services for veterans that reside in communities with a shortage of home health aides; and requires the VA to establish a warm handoff process for veterans and caregivers who are discharged from or ineligible for the Program of Comprehensive Assistance for Family Caregivers.
Passing the Benefit Act of 2023: The BENEFIT Act (S.526/H.R.1092) can improve the FDA’s therapy approval process by making their process more transparent.
Passing the Justice for Veterans Act of 2023: This law extends increased Dependency and Indemnity Compensation (DIC) paid to surviving spouses of veterans who die from ALS, regardless of how long the veterans lived with ALS.
Passing the Air Carrier Access Amendments Act: This law provides an avenue through which disabled individuals experiencing air travel discrimination can file complaints with the U.S. Department of Transportation and create new standards for aircraft to ensure accessibility for individuals with disabilities who use wheelchairs and complex mobility devices.
Passing the Credit for Caring Act: This law provides support for family caregivers to offset the cost of long-term care in the home or in a facility, with a tax credit of up to $5,000 a year to defray the costs of caregiving.

State Advocacy Priorities

Raise awareness of ALS and its impact in our local community

Ensure state laws support access by people with ALS to treatments and medical services

Many state programs like Medicaid, the Oregon Health plan and other agencies have rules and regulations that dictate how people can access treatments. We advocate for people with ALS to have full access to all FDA approved therapies and services. These efforts can include:

Enhancing state funding for ALS Clinics and services that help people with ALS.
Supporting people with ALS to access the same quality healthcare as people who live in more urban or resource-rich communities.
Advocating for state laws that allow the use of Telehealth for providers to meet with and treat people with ALS.
Advocating for the elimination of the Use of Quality-Adjusted Life Years (QALYs) as part of health care decision-making for access to new therapies or treatments. Policies like these are promoted as initiatives to cut healthcare costs by indicating a higher preference for funding therapies based on the quality of life of healthy people. These policies are discriminatory towards those with disabilities and people with ALS.
Banning Copay Accumulator Adjustment Programs and supporting legislation that makes sure all insurance copays count towards the cost of drugs. Many insurers have disallowed copay assistance (also known as copay savings program, copay coupon, or a copay card) from counting towards a patient's annual deductible or out-of-pocket maximum. As a result, people living with ALS can face increased costs for getting prescriptions and therapies.

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