ALS Ice Bucket Challenge Progress


2020 Public Policy Priorities

The ALS Association’s policy priorities are grounded in our advocacy guiding principles. Our federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission 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.

Waive the Five-Month Waiting Period for Social Security Disability Insurance

The ALS Disability Insurance Access Act (S. 578/ H.R. 1407) would eliminate the five-month Social Security Disability Insurance (SSDI) waiting period for people with ALS. Under current law, people with ALS who qualify for SSDI must wait five months before receiving those benefits. Given the nature of the disease, Congress must eliminate this five-month wait.

Protect Access to Noninvasive Ventilators

The Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R. 4945) would remove noninvasive ventilators (NIV) from competitive bidding for five years and require Medicare to update national coverage policies. Unless Congress acts, beneficiaries with ALS will lose access to home NIVs and support from respiratory therapists – resulting in significantly higher costs and a devasting impact on patient care and quality of life. The ALS Association is working with patient, physician and respiratory therapists organizations to enact this legislation.

Fairly Compensate Families of Veterans with ALS

The Justice for ALS Veterans Act (S. 3091/H.R. 4748) would increase dependency and indemnity compensation (DIC) paid to surviving spouses of veterans who die from ALS regardless of how long the veteran had ALS prior to death. Because ALS is a service-connected disease, families of deceased veterans receive a DIC. However, they are denied a supplemental DIC increase available only to families of veterans who live at least eight years with a service-connected disability. Families of veterans who died from ALS deserve the same compensation as other military families. The ALS Association is collaborating with stakeholders across the veterans’ health network to enact this legislation.

Preserve and Increase Federal Resources for ALS Research

  1. ALS Research Program – Department of Defense:
    In fiscal year (FY) 2020, The ALS Association initiated and led the campaign to double funding from $10 to $20 million for the Department of Defense (DOD) ALS Research Program (ALSRP). For FY 2021, Congress should again double funding from $20 to $40 million. Increased funding is needed because ALSRP has only been able to fund half of the most promising research applications it receives. Studies funded by the DOD, VA and NIH have found that people who served in the military are up to twice as likely to develop and die from ALS as those with no history of military service regardless of which branch they served in, where they served, or whether they served during peace or war. The DOD ALSRP program is funded as a part of the Congressional Directed Medical Research Program.

  2. National ALS Registry/Biorepository – Centers for Disease Control and Prevention:
    Congress should provide at least $10 million in FY 2021 to continue the Center for Disease Control and Prevention’s (CDC) National ALS Registry/Biorepository. The Registry collects and analyzes health claims and other data in close collaboration with the DOD, Veteran’s Administration, Medicare and the National Institutes of Health. It connects people living with ALS to researchers conducting clinical trials across the U.S., collects and shares biological samples through the Biorepository and funds its own important risk factor research.

  3. National Institutes of Health – Department of Health and Human Services:
    Congress should provide at least a $44.7 billion in FY 2021 for the National Institutes of Health (NIH), a $3 billion increase over FY 2020, to increase investments in ALS research. NIH spent approximately $83 million on ALS research in 2018, with the National Institute of Neurological Disorders and Stroke (NINDS) making the largest investment, and four other NIH Institutes contributing the balance.

Expand Access to Telemedicine and Telehealth

The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS. The ALS Association will work closely with stakeholders across the health care and technology ecosystem to expand a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method.

Represent People Living with ALS on Access to Health Care, Drugs and Therapies

The ALS Association is an active participant in coalitions of leading patient advocacy organizations that advocate to ensure protections for preexisting conditions and access to high quality, affordable care in public and private insurance. In addition, the Association is working with other ALS and rare disease organizations to advance our Principles for Urgent, Patient-Centered Clinical Trials, including increased access to experimental therapies and fast-tracking Food and Drug Administration approvals for effective drugs for everyone with ALS.