In case you missed it, an important share from Team Gleason: Steves open letter in The Washington Post calling for Medicare to reverse its new rules on Speech Generating Devices like the tablet Steve uses to communicate. He also had this to say: There are many groups working on the issue. Our organization, Team Gleason, is a champion in this cause. The thousands of patients and families we speak with joined us in a letter writing campaign through the Center for Medicare Advocacy We are writing to legislative leaders and Secretary Burwell. Last week, 31,000 emails were sent and we are still going. I am encouraged that my two Congressional leaders, Cathy McMorris Rodgers and Congressman Steve Scalise, have a bipartisan letter making its way through the House and Senate. They are urging Medicare to rethink the shortsighted policy decisions that cripple an already crippled population. While I am grateful for the support, I am also outraged. We just spoke with a mother of 4 in Baton Rouge, who has ALS. A primary focus in her life was being able to participate in her sons’ education. She just received her communication device. Now she cannot email teachers, check test scores or follow her sons’ online schedules. Medicare has disabled her. We are not asking much. Most expect us to fade quietly and die. If Medicare gets their way, many of us will. I am asking Secretary Burwell to change that. I am asking the Secretary to give us our voice back. ALS stole it once. Medicare is trying to steal it again. SG
Posted on: Tue, 02 Sep 2014 05:03:31 +0000
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