If you’ve read about ALS and Steve Gleason, wondering what you can do to support the fight against ALS and to help those people living with the disease, here is your chance to take action:


Representative Cathy McMorris Rodgers (R-WA-05) recently introduced the Steve Gleason Act of 2015, H.R. 628. This groundbreaking legislation would allow people who receive Medicare to immediately purchase and transfer ownership of speech-generating devices (SGDs) to the patient and would remove them from the Medicare capped-rental requirement. Eye tracking devices would also be included.


You probably remember our previous blog posts on this important issue. Reinterpretation of the Social Security Act and the issuance of a coverage reminder prohibiting SGDs from having any non-speech capabilities, such as email and Internet surfing, left many patients without the devices they need to communicate and to access vital information. Unfortunately, Medicare contractors routinely deny coverage for eye gaze technology, even though it changes the lives of people living with limited or absent mobility in their arms and hands.


In 2013, the Centers for Medicare & Medicaid Services (CMS) reclassified several devices, including SGDs, indicating that previous interpretation of the Social Security Act was inaccurate. And in April 2014, CMS applied the capped-rental rule, requiring patients to rent SGDs over a 13-month period before owning the device. Patients in an extended hospital stay or a nursing facility are hit hard by this legislation because Medicare will not cover the rental fees while the patient is in the rental period. Additionally, it prohibits any ability to unlock the devices to include non-speech capabilities.


Mounting pressure forced CMS to revise their definition of an SGD and requested comments in November. The CMS National Coverage Determination is anticipated to resolve the non-speech capabilities issue, and is expected in July. Capped-rental, however, is defined by CMS as a legislative issue. The proposed legislation, if passed, will require CMS to reclassify the SGDs.


This is where you come in: Please take a few moments of your time to contact your Representative and ask him or her to support this legislation. You can find contact information here: http://www.house.gov/representatives/find/