2017 Public Policy Priorities

Current Patient Needs

Waive the Five-Month Waiting Period for Social Security
With leadership from The ALS Association and strong grassroots advocacy, legislation will be introduced in February of 2017 in the House and Senate to waive the five-month waiting period for Social Security Disability Insurance (SSDI). After a disability claimant has been approved to receive SSDI benefits, the individual is subject to a five-month waiting period before the individual will receive the disability benefit and access to Medicare. During this deeply challenging time, many families who have paid into Social Security are left with no form of income creating hardships. Congress must acknowledge the special circumstances facing our community and waive the five month waiting period for SSDI which provides access to critical Medicare coverage for people living with ALS.

Access to Home Health Services
Access to home health services is a fundamental priority for people living with ALS, their caregivers and The ALS Association. In 2017, The Association will work with new Administration and congressional leaders to ensure access to home health services which enable those with ALS to live in their homes and communities. This includes, but is not limited to, educating and advocating with policy makers to ensure that any barriers to appropriate access to care are reduced or removed. It also includes addressing problems such as patient avoidance, dropping patients and illegally limiting the number of hours services are provided.

Preserve Access to Complex Rehab Technologies (CRT)
In 2016, The Association worked with Congress and coalition partners, such as MDA, to enact legislation to preserve access to power wheelchair accessories such as custom head support and seating systems, mounting hardware, adjustable leg rests, and specialty drive controls among other wheelchair accessories upon which people with ALS depend. The Centers for Medicare and Medicaid Services (CMS) was scheduled to significantly reduce payments for these accessories; however, The ALS Association worked with partners to successfully lobby Congress to delay implementation of these cuts. In 2017, The Association will work to implement a permanent solution through the legislative or regulatory processes.

Advancing Research

Provide $10 million appropriation to continue the National ALS Registry at the Centers for Disease Control and Prevention
Congress and the Administration made establishment of the National ALS Registry a top priority through the enactment and implementation of the ALS Registry Act in 2008 (P.L. 110-373) and by appropriating funding to develop and implement the registry in each of the past nine years. Using a variety of enrollment strategies, including online self-enrollment, the registry currently is identifying the number of cases of ALS in the U.S. and collecting data that may help us learn more about what causes the disease and how it can be prevented, treated, and, ultimately, cured. Continued funding is necessary in FY 2018 to move the registry forward, support related ALS research, help people with ALS enroll in the registry, conduct outreach activities to identify ALS cases across the country, establish an ALS biorepository that collects blood and tissue samples, and enable the registry to support recruitment for clinical trials to develop new treatments for the disease.

Provide $10 million appropriation to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD)
Studies supported by the DOD, Department of Veterans Affairs, National Institutes of Health, Harvard University and the Institute of Medicine, among others, repeatedly have found that military veterans -- regardless of branch or era of service-- are approximately twice as likely to die from Lou Gehrig’s disease as those who have not served in the military. To support our nation’s military veterans in the fight against ALS, Congress and the DOD established the ALS Research Program (ALSRP) in FY 2007. The ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer-reviewed. While Congress has continued to appropriate funding for the ALSRP, the current level leaves a large number of projects unfunded. Congress must continue to support and expand this vital program.

Under Watch

Medicare, Medicaid and the Affordable Care Act
As Congress and the Administration consider changes to the Medicare and Medicaid Program, as well as the repeal/replacement of the Affordable Care Act, The Association will track closely and work with other patient advocacy groups to examine emerging proposals to determine their impact on people with ALS and their families.

For Further Information Please Contact: Kathleen Sheehan, Vice President, Public Policy,