(June 21, 2016) As the appropriations process continues on Capitol Hill, we are thrilled to tell you that, thanks to your advocacy, Congress is taking action on several priorities for the ALS community!
Senate Bill Includes $10 Million for the National ALS Registry
- The Senate Appropriations Committee passed its version of the FY 2017 Health and Human Services (HHS) spending bill and included $10 million to continue funding for the National ALS Registry. This additional funding will allow the Registry to continue funding ALS research, identify what causes the disease and help to advance the search for a treatment. The funding also will enable CDC to fully implement the ALS biorepository, which collects blood and tissue samples from those enrolled in the Registry, something that is so critical to advancing ALS research. Visit the CDC's website or view this fact sheet to learn more about the important work the Registry is doing.
- 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).
- Importantly, the legislation included language providing direction to both CDC and NIH on how the agencies should focus efforts on ALS research. This language helps to ensure that funding for ALS research is coordinated with other federal agencies and the broader ALS community and is strategically targeted so that this critical funding can make the most difference in the fight against the disease.
House Passes Defense Bill that Includes $7.5 Million for the ALSRP
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. The ALSRP funds innovative translational research that has identified four potential treatments for ALS to date. An infographic that includes more information about the ALSRP is available here.
Thank you to every ALS advocate who reached out to their Members of Congress in support of these important priorities. You are making a difference!
(June 7, 2016) The Senate voted overwhelmingly to pass Senator Dick Durbin's (D-IL) amendment (#4369) to the National Defense Authorization Act (NDAA) to protect crucial medical research programs at the Department of Defense (DOD).
Senator Durbin's amendment strikes dangerous provisions from the NDAA that would have devastated medical research at the DOD, including the ALS Research Program, which to date has discovered four potential treatments for ALS.
Thank you to all our advocates for their outreach on this issue. Together, we are making a difference!
(May 17, 2016) 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.
Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving benefits and Medicare; regardless of the level of disability,and regardless of how fast the Social Security Administration approves the claim.
The ALS Disability Insurance Access Act would eliminate the five-month waiting period for people with ALS so they can receieve disability benefits and Medicare ASAP! Please urge your Members of Congress to cosponsor the ALS Disability Insurance Access Act and support people living with ALS. You can visit our action center to send a customizable letter to your Members of Congress.
(January 6, 2016) As we welcome the new year, The ALS Association would like to thank the thousands of advocates who took action in 2015 to make a difference in the fight against ALS in Washington, DC. Your efforts to reach out to Members of Congress and government agencies throughout the year had a significant impact and resulted in policies that not only advance ALS research and the search for a treatment, but also help ensure people living with ALS have access to the health care they need and deserve.
(December 18, 2015) Great news!! The Senate and House cleared legislation to delay scheduled cuts to Complex Rehab Wheelchair Accessories by 12 months. The Association and Muscular Dystrophy Association (MDA) worked closely to advance this critical issue and ensure people with ALS continue to have access to these vital technologies.
The legislation now heads to the President's desk to be signed into law. The Association will continue to be actively engaged on this issue and we will keep you updated as discussions for a permanent solution progress.
For more information on this issue, please visit our website. Thank you to everyone who took action on this important issue and supported people living with ALS!!