ALS Advocacy Update

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Delegates in front of Capital Building 1Cheryl joined more than 600 advocates from every state in the nation at The ALS Association’s National Advocacy Day and Public Policy Conference May 8-10 in Washington, DC.  Conference attendees included 128 people with ALS who traveled to Washington from all over the country.

On May 10, National ALS Awareness Day, delegates met with Congressional representatives on Capitol Hill. Cheryl, who joined other delegates from the Golden West Chapter, shared the story of her and Ismail’s 30-year journey with ALS with several legislative assistants of Congressmen and Congresswomen.  Everyone who heard their story was moved by it. She gave each representative a copy of One Blink at a Time, the book she and Ismail wrote about their journey.

ALS advocates made three requests of Congress this year:


1. Their first request was to Waive the SSDI Five-Month Waiting Period. This would exempt people with ALS from the five-month waiting period to begin receiving Social Security Disability Insurance (SSDI) benefits once they are approved. The current waiting period was established in 1954 with the inception of the program and was meant to allow time for temporary conditions to reverse. However, ALS is a disabling, progressive disease, and there is no known way to slow, stop or reverse the progression of the disease. According to The ALS Association, about 50% of people with ALS will die within 16 months of diagnosis, and the waiting period unfairly imposes significant hardships on people with ALS and their families because people with ALS can no longer work and generate income and the five-month waiting period prevents people disabled with ALS from accessing Medicare benefits. The Association explains that under the current law, some people with ALS will lose their fight with the disease while waiting for benefits they have earned and for which they qualify.

On May 17, The ALS Association issued an “Action Alert” announcing that Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced S.2904, the ALS Disability Insurance Access Act, to waive the five-month Social Security Disability waiting period for people living with ALS. Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced H.R. 5183, identical legislation in the House of Representatives. Members of Congress are urged to cosponsor the ALS Disability Insurance Access Act and support people living with ALS.

You can help: Urge your members of Congress to co-sponsor the bill.  Just go to The ALS Association’s Public Policy page and click on the “TAKE ACTION” button in the text box titled “Waive the SSDI Five-Month Waiting Period for People with ALS” in the top left corner of the page.

2.  The ALS Association’s second request of Congress this year is to pass the Senate Health Innovation Package/Enact the Dormant Therapies Act. According to The ALS Association, Congress’s doing so 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. The Association says that 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 patents or have weak ones. The Association explains that The Dormant Therapies Act would:

    • Create a new category of drugs called “dormant therapies,” which are those that are deemed to have insufficient patent protections but show promise for treating diseases like ALS.
    • Provide a 15-year period of data exclusivity for these drugs, which offers incentives for therapy development similar to those afforded by patent protection that would begin at the time of FDA approval so that manufacturers are not penalized for pursing treatments for challenging diseases like ALS that can take 15 or more years to develop.
    • Ensure that the decision to develop a potential treatment will be driven by the treatment’s potential to benefit patients instead of the strength of the patent.
    • Remove the disincentive for manufacturers to pursue treatments for difficult diseases like ALS where it can take 15 or more years to develop a treatment.
    • Require that manufacturers of dormant therapies agree not to use any existing patents to block generics after the 15-year regulatory exclusivity period ends.

3. The ALS Association’s third request of Congress is to Preserve Access to Complex Rehab Technologies (CRT) such as Complex Rehab Technology wheelchairs, which are individually configured to meet the specific needs of people like those with ALS who have significant permanent disabilities. Proposed House and Senate bills (H.R. 3229 and S. 2196) would clarify that CRT power wheelchair components and accessories which require highly individualized configurations, fittings, adjustments, and housing are exempt from a competitive bidding program. The Association explains that a competitive bidding program requirement would cause people with ALS to lose access to critical technologies and be forced to utilize standard technologies that do not meet their medical needs and could pose a threat to their health.


Congress Takes Action on ALS Priorities!

According to Advocacy Action Center on The ALS Association’s website (


    1. On June 7, 2016, the Senate voted overwhelmingly to pass Senator Dick Durbin’s (D-IL) amendment (#4360) to the National Defense Authorization Act (NDAA) to strike provisions from the NDAA that would have devastated medical research at the Department of Defense, including the ALS Research Program, which to date has discovered four potential treatments for ALS.
    2. The Senate Appropriations Committee passed its version of the FY2017 Health and Human Services (HHS) spending bill and included $10 million to continue funding for the National ALS Registry which will allow the Registry to continue funding ALS research, identify what causes the disease and help to advance the search for a treatment. It will also enable the Centers for Disease Control to fully implement the ALS biorepository, which collects blood and tissue samples from those enrolled in the Registry. The Senate bill also included a $2 billion increase in funding for the National Institutes of Health (NIH) and a $100 million increase for the National Institute of Neurological Disorders and Stroke (NINDS).
    3. The House of Representatives passed the FY 2017 Defense Appropriations bill and provided $7.5 million to continue funding for the ALS Research Program at the Department of Defense. If enacted into law, this would bring total funding for the ALSRP to nearly $70 million. Research funded by ALSRP has identified four potential treatments for ALS to date.