ALS Association



Steve Gleason Enduring Voices Act Moves Through House, Heads to Senate

The Steve Gleason Enduring Voices Act (S. 1132 and H.R. 2465), which would permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases, was included in the government funding package approved by the U.S. House of Representatives last night.

Under the leadership of Steve Gleason, a former New Orleans Saints player living with ALS, and Team Gleason, this bipartisan legislation was introduced by leading sponsors Sen. Bill Cassidy, M.D. (R-LA) and Sen. Amy Klobuchar (D-MN) in the Senate and Rep. Cathy McMorris Rodgers (R-WA) and Rep. John Larson (D-CT) in the House, in conjunction with The ALS Association’s National ALS Advocacy Conference in May 2017.

“ALS is a devastating disease that often robs people of the ability to communicate with their loved ones and the health care providers who care for them,” said Calaneet Balas, president and CEO of The ALS Association. “On behalf of people living with ALS, we thank Steve Gleason for his leadership on this issue and applaud Republicans and Democrats for coming together to pass this bipartisan legislation. And, of course, we were proud to play our part in advocating for it.”

Steve Gleason said: “The silence and isolation that comes from losing the ability to communicate does not discriminate between types of injuries, diseases, accidents, or conditions. Most people who have severe disabilities are expected to fade away quietly and die. For me, that was not ok. With the right equipment and the right technology, these same people can live and be productive for decades. I know I speak for all who use this technology in saying we cannot revert back to the changes that preceded the Steve Gleason Act of 2015. I am grateful for Senators Cassidy and Klobuchar for their leadership on this issue.”

Dr. Cassidy said: “This legislation gives a voice to those who cannot speak and empowers those affected by degenerative diseases. The previous administration’s decision to limit patient access to these devices was misguided, and I thank my House colleagues for advancing this bipartisan legislation to permanently fix this problem. I look forward to voting for its passage in the Senate.”

For more information on the Steve Gleason Enduring Voices Act, click here.

The ALS Association network plays a lead role in advocating for increased public and private support of ALS research and public policy initiatives that responds to the needs of people with ALS. Our organization’s public policy efforts in Washington, D.C., have raised the profile of ALS at the White House, among members of Congress, and within federal agencies, including CMS, the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Department of Defense (DoD), the Department of Veterans Affairs (VA), the Social Security Administration (SSA), and the Centers for Disease Control and Prevention (CDC).

For more details about our biggest successes in ALS advocacy during 2017, please click here.