Today Senator David Vitter (R-LA) introduced the Steve Gleason Act, legislation that will help preserve access to speech generating devices (SGDs) and eye tracking technology for people with ALS! U.S. Representative Cathy McMorris Rodgers (R-WA) will be introducing a companion bill in the House. We urge you to contact your Senators and Representative and ask them to cosponsor the Steve Gleason Act! A sample email that you can personalize and send is available in our Advocacy Action Center here.
As you know, the Centers for Medicare and Medicaid Services (CMS) have taken several different actions that deny people with ALS timely access to the SGDs. This legislation would reverse those actions and make sure that people have access to the SGDs they need, when and where they need them. Specifically, the bill would:
- Eliminate the "capped rental" payment system for SGDs to once again enable people with ALS to purchase SGDs. This provision would allow people to keep their SGDs if they are admitted to a hospital, nursing facility or hospice. Importantly, it also would allow people to "unlock" their SGDs so they can access non-speech technologies such as email, the internet and environmental controls.
- Ensure coverage for eye tracking and other technologies that enable people who have lost the use of their arms and hands the ability to access SGDs.
While CMS is in the process of revising their coverage policy, these other policies are impacting people with ALS today so it is absolutely critical to address these issues as soon as possible. People with ALS do not have time to wait. Therefore, please contact Congress today!
Thank you to everyone for all that you do to make a difference! Thank you especially to Steve Gleason whose relentless efforts have helped put a public spotlight on these issues and helped to move them forward.
Together, we are making a difference!