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| Oregon and SW Washington Chapter
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Help Preserve Access to SGDs! Your help is urgently needed. The Senate is close to passing S. 768 the Steve Gleason Act, legislation which would ensure people with ALS have access to the speech generating devices (SGDs) they need when and where they need them. However Senator Ron Wyden (D-OR) needs to hear from you as soon as possible today!
We urge you to call Senator Wyden’s office in Washington (202-224-5244) and ask him to support his constituents with ALS by agreeing to pass the Steve Gleason act as part of the SGR agreement, also known as the “Doc Fix.” You can use these talking points when you call:
• My name is ________ and I am a constituent living in (your hometown) Oregon.
• I am calling to urge Senator Wyden to agree to pass the Steve Gleason Act (S. 768) as part of the SGR agreement.
• This vital legislation would help preserve Medicare coverage for speech generating devices (SGDs). SGDs are critical to the lives of people living with ALS (Lou Gehrig’s disease) who have lost the ability to speak.
• I hope Senator Wyden stands up for people with ALS and supports passage of the Steve Gleason Act as soon as possible. People with ALS are being harmed today because Medicare policy is denying them access to the SGDs they need.
• I hope people with ALS can count on Senator Wyden’s support.
If ALS prevents you from calling his office, please send an email as soon as possible. Simply cut and paste the text below onto the contact form for the Senator here: http://www.wyden.senate.gov/contact. After entering your contact information on the form, select Medicare/Medicaid as the message topic.
Please take action as soon as possible today! Thank you.
Dear Senator Wyden:
I am writing to urge you to support your constituents living with ALS in Oregon by agreeing to pass the Steve Gleason Act (S. 768) as part of any SGR agreement. The vital legislation has broad bipartisan support and would help preserve Medicare coverage for speech generating devices (SGDs). SGDs are critical to the lives of people living with ALS (Lou Gehrig’s disease) who have lost the ability to speak.
Last fall, more than 200 Members of the House and Senate signed onto a letter to CMS (http://bit.ly/1s0328c) expressing concern about policy changes the agency had made that are restricting access to SGDs. While CMS is in the process of revising some of its coverage policy, any changes that result will not address all of the issues. It requires legislation. And that legislation, the Steve Gleason Act, is urgently needed because people with ALS are being harmed today.
The Steve Gleason Act would help make sure that people with ALS 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. Without this provision, people may be forced to return SGDs and go without an SGD altogether when they are admitted to a facility.
Importantly, it also would allow people to “unlock” SGDs at their own expense so they can access non-speech technologies such as email, the internet and environmental controls. Without this provision, people with ALS will continue to be denied access to vital technologies that most Americans take for granted.
• 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. Without this provision, coverage for eye tracking will continue to be denied, rendering an SGD completely useless to a person who has lost mobility and has no other way to access the device.
I cannot overstate how important this legislation is to people with ALS and their families. This is a horrific disease that robs people of the ability to move, to eat, to speak, to breathe. Ultimately, it is fatal in an average of just two to five years. As people with ALS are fighting for their lives, they should not also be forced to fight Medicare policies that deny them a voice and take away access to technologies that everyone else takes for granted. So please support passing the Steve Gleason Act as part of the SGR agreement and help give a voice to people with ALS.
Thank you for acting on this important public policy matter.
Lance Christian
Executive Director 
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