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Sen. Cassidy's Steve Gleason Act made official

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Former Saints Player Steve Gleason (left) interacts with father-in-law Paul Varisco through vital technology for people with ALS.

Americans with degenerative diseases now have expanded access to speech generating devices through Medicare and Medicaid under a bill signed into law by President Trump February 9.

The U.S. House of Representatives included the Steve Gleason Enduring Voices Act in the government funding package that was approved Tuesday night. U.S. Senator Bill Cassidy and Gleason celebrated the passage in the House, and the Senate passed the legislation later in the week.

The Steve Gleason Enduring Voices Act fixes Medicaid and Medicare policies that limits access to speech generation devices for people with degenerative diseases. Cassidy introduced the legislation along with Senator Amy Kloubuchar. U.S. Representatives Cathy McMorris Rodgers and John Larson carried the House companion bill.

“This legislation gives a voice to those who cannot speak and empowers those affected by degenerative diseases,” said Dr. Cassidy. “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.”

This year's legislation is a followup bill to the Steve Gleason Act of 2015, which made the devices eligible for insurance reimbursement. The Steve Gleason Enduring Voices Act will make the 2015 changes permanent and do away with federal policies that limit access to these devices.

“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,” said Gleason. “I am grateful for Senators Cassidy and Klobuchar for their leadership on this issue.”

Gleason is a former defensive back for the New Orleans Saints. He became a local legend after blocking a punt during the Saints' first home game after Hurricane Katrina devastated the Crescent City. Shortly after retiring from the NFL, Gleason was diagnosed with ALS, a neurodegenerative disease also known as Lou Gehrig's disease.

“ALS is a devastating disease that often robs people of the ability to communicate with their loved ones and the health care providers that care for them. On behalf of people living with ALS, we thank Steve Gleason for his leadership on this issue and we applaud Republicans and Democrats for coming together to pass bipartisan legislation to permanently ensure access to speech generating devices,” said Calaneet Balas, President and CEO of The ALS Association.