This week, the U.S. House of Representatives unanimously passed the Steve Gleason Act, which is named for and inspired by former NFL star Steve Gleason, who was diagnosed with ALS in January 2011. With broad support from both parties and both chambers, President Obama is expected to sign it into law.
But what did it take to land this piece of legislation on the President’s desk?
I’m glad you asked…
Summer 2014: Steve Gleason releases an open letter about concerns regarding changes in regulations from the Centers for Medicare and Medicaid Services (CMS) that negatively affect access to speech generating devices– devices people living with ALS and other degenerative diseases need and rely on to communicate with the world around them. Gail Gleason, an advocate for people with ALS and mother of Steve Gleason, approached House Republican Conference Chair Cathy McMorris Rodgers (R-WA) about those concerns. The problems were three-fold:
1. Local Medicare contractors stopped covering eye tracking accessories.
2. Placement of the device in capped rental category.
3. Medicare denied patients the ability to ‘unlock’ their device using their own post-tax money.
September 11, 2014: McMorris Rodgers leads a bicameral, bipartisan letter to CMS inquiring on why the agency made these arbitrary changes. The letter had overwhelming support with more than 200 cosigners including Republicans and Democrats from both the House and the Senate.
Fall 2014: McMorris Rodgers maintained contact with CMS. After several months of back-and-forth with the Administration, CMS eventually decided to address the issue of unlocking devices, one of the three issues brought forward by Team Gleason.
December 17, 2014: CMS formally responds to the letter led by McMorris Rodgers and acknowledges that they will grant the request to lift the regulations on unlocking the device. However, that was only one of the problems.
January, 2015 : Having only one of three concerns addressed by CMS, Steve traveled to Washington, D.C. to meet with the heads of CMS and legislative leaders. Steve and Team Gleason were told the only course of action to correct the sweeping changes would be legislation. On January 30, McMorris Rodgers introduces H.R. 628, the Steve Gleason Act, to address CMS’s failures on the remaining two issues.
April 22, 2015: Senate passes Steve Gleason Act (S. 984), introduced by Sen. David Vitter (R-LA), and sends it to the House.
June 2, 2015: McMorris Rodgers and Majority Whip Steve Scalise (R-LA) work with Chairman Paul Ryan to move the bill through Ways and Means Committee. It passes unanimously.
July 15, 2015: House unanimously passes the Steve Gleason Act and sends it to the President’s desk.
July 30, 2015: Became Public Law No: 114-40.