Steve Gleason Bill Passes House: Landmark Victory For ALS Patients


ALS patients with speech and motor disabilities may soon have easier access to better health care services and machines that will help them go through the demands of everyday life.

Last April 22, the US Senate passed the Steve Gleason Act (S. 984) that would allow ALS patients to keep their speech generating devices (SGD) as long as they are admitted to a hospital, nursing facility or hospice. The Steve Gleason Act will also provide ALS patients access to the internet and environmental controls and restore a patient's ability to upgrade his or her SGD.

The legislation then proceeded to the House of Representatives where the bill was introduced by Representative Cathy McMorris Rodgers (R-WA).

Today, the US House passed the bill which is now on its way to getting signed by President Barack Obama.

"This is a huge victory for ALS patients across the country," noted Senator David Vitter. He added that the accessibility and affordability of assistive equipment will allow patients to communicate with their family and friends. Even when they lose their speaking abilities, the equipment will even "literally give them a voice."

SGD manufacturer Tobii Dynavox also applauded the passing of the bill, calling it a victory for patients with communication disabilities.

"Congressional passage and the subsequent signing by President Obama of The Steve Gleason Act is a victory for Medicare patients who rely on assistive technology to communicate with their loved ones and caregivers," said Tobii Dynavox North American Market Unit president Tara Rudnicki. They look forward to the legislation's swift implementation to enable patients who need assistive technology to be able to "have and keep their voices."

The two goals of the Steve Gleason Act may soon be implemented as law: exclusion of SGDs from the "Capped Rental" category until 2018 and Medicare coverage of SGD-related eye-tracking devices.

Tobii Dynavox is working with the Centers for Medicare and Medicaid Services (CMS) and the US Congress to allow patients to have access to assistive technology even after Oct. 1, 2018. Medicare placed SGDs under the "Capped Rental" category, effective April 2014. This category allows patients to make use of SGDs, when in hospitals, nursing facilities or hospices, until Oct. 1, 2018.

Most patients are unable to access their SGDs without eye-tracking technology. Last year Medicare denied many beneficiaries of coverage for this technology. The Steve Gleason Act should allow coverage of eye-tracking technology.

The piece of legislation, which is now awaiting approval from President Obama, was named after former NFL player Steve Gleason who is now battling ALS.

"It's encouraging how far we have come in such a short time. Simply put, Medicare committed a blunder, when they chose to deny people like myself access to technology," said Gleason through his Tobii Dynavox, eye-tracking technology SGD which allows him to tweet, e-mail, listen to music, watch videos and surf the internet.

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