What can you do to #ChallengeALS


Legislative Priorities

Continue appropriations for critical ALS research programs at the Centers for Disease Control and Prevention and Department of Defense (DOD).

  • Appropriate $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.

The Administration and Congress have made the establishment of the National ALS Registry a top priority through the enactment 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 what causes the disease and how it can be treated, prevented and, ultimately, cured. However, funding is necessary in FY 2016 to continue the registry, fund registry-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 advance clinical trials to develop new treatments for the disease.

  • Appropriate $10 million 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. In order to support our nation’s military heroes 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 more than 95% of submitted projects unfunded. Opportunities to discover and deliver a treatment to veterans will be lost, leaving them and all people living with the disease with no effective treatment option. Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us.

Enact the Dormant Therapies Act

Regulatory barriers and limited incentives to pursue innovation have hindered the development of new treatments for ALS and other diseases with unmet medical needs. In fact, people with ALS will die in an average of just two to five years because an effective treatment does not exist.

The Dormant Therapies Act would accelerate the search for a treatment for ALS and other diseases by removing the barriers that limit medical innovation and by providing incentives to develop new treatments that can improve, prolong and, ultimately, save lives. Specifically the bill will: Encourage research on treatments that hold promise for treating diseases with unmet medical needs, but have been set aside in the lab because they lack or have weak patents.

Ensure Access to Speech Generating Devices

The Centers for Medicare and Medicaid Services (CMS) has taken several different actions that deny people with ALS timely access to the speech generating devices that meet their specific medical needs. These actions fundamentally change long-standing coverage policy and significantly limit what technologies are available to people with ALS. Specifically, CMS has:

  • Issued a “coverage reminder” that would prohibit coverage for SGDs that include non-speech technologies such as email, internet access and environmental controls;
  • Routinely begun to deny coverage for eye tracking, which is needed in order to access SGDs by people who have lost mobility ; and
  • Implemented a "capped rental" payment system that requires people with ALS to first rent SGDs for a period of 13 months before owning the device. If a person is admitted to hospice, a hospital or a nursing facility during the rental period, Medicare payment for the SGD will cease.  Moreover, people with ALS may not “unlock” SGDs during the rental period, which denies them access to non-speech technologies.  

The ALS Association has been working with CMS, Members of Congress and other stakeholders for nearly a year to fight these policies, including securing the signatures of 200 Members of Congress on a letter to CMS expressing concerns about SGD policy.   CMS has since rescinded the “coverage reminder” and is reconsidering its SGD coverage policy, a process expected to continue until July 31, 2015.  Action is needed not only to ensure the new coverage policy provides access to SGDs that have non-speech technologies, but also that Medicare covers eye tracking technology.  Moreover, action is needed to eliminate the capped rental requirement so that people with ALS continue to have access to SGDs when and where they need them.