Medicare Funding Changes May Affect ALS Patient Needs


A proposed Medicare change could mean funding changes for those who need help due to Lou Gehrig’s disease.

Ben Thimmes was diagnosed with ALS in 2007. Like many other patients, he uses a speech generation device - or SGD - to help with a variety of daily tasks, things we take for granted like email and environmental controls. 

His wife, Sarah, says getting the device was an answered prayer.

“It was like night and day. He could sit by himself and tell us all of his needs on pre-programmed buttons,” said Sarah.

But access to the $20,000 SGDs could change soon. 

As of September 1, many devices won't be covered because they offer additional functions other than speech. 

In April 2014, Medicare stopped covering the devices with a co-pay and changed to a capped rental program. It means patients are on a month-to-month contract for 13 months before they own the device. 

And, if a patient is admitted to the hospital or a care facility, Medicare would no longer cover the device, meaning the family could have to return it. 

"They're so personalized, you know, you can’t just pull another one off the shelf and use it,” said Sarah.

She says she worries for families like hers having future access to this critical technology. 

“The hardest is people like Ben with ALS will not get the technology that they need to communicate.”

Sarah says she's not giving up on the fight for access to these machines.  She reached out to Congressman Steve Stivers. He sent her a letter promising action. 10TV followed up with Stivers’ office, but our calls for comment were not returned. 

READ: Medicare Coverage for Speech Generating Devices