Vitter: Steve Gleason Act officially law of the land

NEW YORK, NY - MAY 30: Former NFL player Steve Gleason attends the Social Innovation Summit May 2013 - Day Two on May 30, 2013 in New York City. (Photo by Cindy Ord/Getty Images for Social Innovation Summit)

U.S. Sen. David Vitter announced tonight that President Barack Obama has signed S. 984, The Steve Gleason Act of 2015. The Steve Gleason Act, authored by Vitter, will make speech generating devices (SGDs) more accessible, helping patients diagnosed with diseases such as Amyotrophic lateral sclerosis (ALS) live more independent lives. Vitter’s legislation passed through the Senate in April and passed the House earlier this month.

 

“Steve and Team Gleason deserve all the praise in the world for not only shedding light on this issue, but helping get our bill across the goal line,” Vitter said. “Making this equipment more accessible and affordable will allow more ALS patients to literally have a voice to communicate with their family and friends.”

When the bill passed Steve Gleason said, “Last year sweeping changes were made at Medicare. I was shocked to learn that those changes would include Medicare stripping communication devices (SGDs) from people whose only means of communication was those very devices. In a Washington Post op-ed, I called it a human rights violation. We saw it happen far too many times. People who wished to live productively, denied access to the one tool that could liberate them.  People in hospice, who had their SGDs seized, so their last words to their loved ones were mere silence. Thankfully, legislative leaders like Senator Vitter, Congresswoman McMorris-Rodgers, Congressman Paulsen, Congressman Scalise and many others, saw this tragedy and intervened. These leaders stepped up on behalf of those who couldn’t take action themselves. At the time, the Steve Gleason Act seemed like a long shot. It was given only a 2% chance of passing, but the ALS community never waved the white flag. That was not an option. With help from  this extraordinary ALS community of patients and caregivers, as well as advocates like the Center for Medicare Advocacy, we made some noise. A lot of noise. People, like myself, who are literally voiceless, were heard. Loud and clear. This legislation may have my name on it, but please know it is the ALS community and the diligent legislators who deserve our applause.”

Vitter named the legislation in honor of Steve Gleason, who was diagnosed with ALS in January 2011. Vitter has been working with Steve and his foundation, Team Gleason, on this legislation since early 2014.

The Steve Gleason Act of 2015 would make the following reforms:

 

  • Give immediate relief for patients who have been denied access to SGDs since the Administration’s rule change in 2014
  • Reverse the Centers for Medicare & Medicaid Services (CMS) capped rental policy to allow patients to own their devices and continue using them in facilities such as nursing homes
  • Ensure that eye tracking technology and gaze interaction accessories are covered under Medicare for ALS patients with demonstrated medical needs. NOTE: This is the technology Gleason uses to verbally communicate.

Vitter’s bipartisan bill is co-sponsored by Senators Angus King (I-Maine), Amy Klobuchar (D-Minn.), Lisa Murkowski (R-Alaska), Chuck Grassley (R-Iowa), Mark Kirk (R-Ill.), and Susan Collins (R-Maine). Congresswoman Cathy McMorris Rodgers (R-Wash.) introduced the companion bill in the House of Representatives along with original co-sponsors Congressmen Steve Scalise (R-La.) and Erik Paulsen (R-Minn.). The legislation is endorsed by Steve Gleason’s advocacy organization, Team Gleason, as well as the ALS Association, the American Speech-Language Hearing Association, Center for Medicare Advocacy, the American Occupational Therapy Association, and the United Spinal Association.

Vitter also worked with Team Gleason last year to pressure CMS to rescind a designation that limited access for certain medical equipment, including the speech generating device that Gleason uses.

In the 113th Congress, Vitter along with Senator Chuck Schumer (D-N.Y.) introduced bipartisan legislation, the Ensuring Access to Quality Complex Rehabilitation Technology Act, which would create a separate benefit category for Complex Rehab Technology (CRT), such as a power chair or speech devices, within the Medicare program. Click here to read more.

Since being diagnosed with ALS, Gleason has since been confined to a wheel chair and lost his ability to speak. Gleason’s speech generating device has allowed him to regain his ability to communicate. Team Gleason has worked to provide individuals with neuromuscular diseases with leading edge technology and create a global conversation about ALS to ultimately find effective treatment and a cure.

Gleason came to Washington D.C. as Vitter’s guest to the State of the Union in January 2015. Vitter and Team Gleason met with U.S. Department of Health and Human Services Secretary Sylvia Burwell to discuss ALS legislation. Click here to read more.

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