In the summer of 2014, Gail Gleason, a mother from Spokane, came to me with concerns about Medicare denying access to cutting-edge speech generating technology for patients living with degenerative diseases.
You may know her son, Steve Gleason, from his NFL career with the New Orleans Saints, or his time at Washington State University, or his advocacy on Amyotrophic Laterals Sclerosis (ALS). No matter how you know Steve, he is a hero and inspiration to all of us, and especially to the thousands of Americans living with degenerative diseases who, like him, rely on speech generating devices to communicate with their family, friends, and doctors. He has chosen to fight back against ALS, and to undergo this very personal battle in the public eye to bring awareness to this disease and the people who it impacts on a daily basis.
Gail and her son Steve feared thousands of people would lose their ability to communicate with the world around them – to share their stories, order coffee, tell jokes, ask for help, or say “I love you.” Following my conversation with Gail in 2014, I got to work. In September of 2014, I led a group of more than 200 Members of the House and Senate—Democrats and Republicans— in a letter to the Center for Medicare and Medicaid Services to investigate why speech generating devices weren’t covered under Medicare. I introduced the Steve Gleason Act shortly after and worked with my colleagues in the House and Senate to advance the bill. In July of 2015, it was signed into law by President Obama. This legislation ensures that Medicare covers payments for speech generating devices or accessories for those with degenerative diseases. When bureaucratic rules threatened to silence many, the Gleason Act gave these individuals the peace of mind to know that their voices would continue to be heard.
The Gleason Act was a major first step, and today I’m honored to introduce the Steve Gleason Enduring Voices Act to make permanent the changes accomplished in the Steve Gleason Act. The Steve Gleason Enduring Voices Act ensures there are “no white flags” and that access to speech generating devices continues indefinitely for those who need it most. This is about giving a permanent voice to the voiceless.
Born and raised here in Spokane, Steve is a hometown hero for me and many others in our Eastern Washington community. Speech generating devices and innovative eye-tracking technology, like Steve uses, allow people living with ALS and other diseases here in Eastern Washington, and all across the country, the chance to continue living full lives and to communicate with their family and loved ones. I am proud to lead the charge on this legislation.
P.S. Be sure to check out www.mcmorris.house.gov/gleason to learn more about the legislation.