• ALS Crowd News
    • Aug 23, 2015

    What the Gleason Act Could Mean for ALS Patients

As seen on PR Newswire July 27, 2015

Stuart Millheiser, founder of the non-profit ALS Guardian Angels, is a recognized voice for ALS awareness and research. His charity offers funding and a strong network of support to victims of amyotrophic lateral sclerosis and their loved ones.

According to Stu Millheiser, the U.S. House of Representatives passed the Steve Gleason Act on July 16. It passed in the U.S. Senate in April last year. With President Obama’s signature, people with ALS who are suffering motor and speech disabilities would have access to improved health care and machinery.

The Act would allow those with ALS to retain their speech generating devices, or SGDs, for the duration of their hospice, nursing facility or hospital admission. It would also ensure that ALS patients have access to the Internet, which is necessary for the SGD’s environmental controls and upgrade function.

The passage of the bill in the House and Senate is a gigantic victory for Americans with ALS. Access to assistive technology can help ensure more ALS patients are able to communicate with friends and family. When the disease steals victims’ ability to speak, their SGDs can speak for them. SGD manufacturers are applauding the bill’s passing, calling it a major victory for those with communication disabilities.

Furthermore, the congressional passage of the Steve Gleason Act, and its expected approval by President Obama, would be helpful for Medicare patients who rely on assistive technology to share their thoughts and needs with caregivers and loved ones.

The Steve Gleason Act has two goals: to exclude SGDs from “Capped Rental” categories until 2018, and to extend Medicare coverage to SGD-related eye tracking devices that aid in communication.

Currently, the majority of ALS sufferers cannot use their SGDs without highly specialized eye-tracking technology. Last year, Medicare denied coverage of this technology. Now, the Steve Gleason Act will ensure health insurance companies include coverage for eye-tracking technology in their policies.

This legislation honors former NFL player Steve Gleason. The football legend is now fighting ALS. He finds it encouraging that the strides in ALS awareness, research and care have come so far in so little time.

The Steve Gleason Act is set for review in 2018, but advocates are already working with the U.S. Congress and the Centers for Medicare and Medicaid Services to give ALS sufferers access to assistive technology after this deadline.

Stuart Millheiser is the founder of ALS Guardian Angels. Millheiser founded ALS Guardian Angels in 2007 to help patients that are suffering from ALS, formerly known as Lou Gehrig’s disease. Millheiser has helped hundreds of people with ALS by providing everything from medical equipment to support for basic living expenses.

Millheiser has been referred to as “a true angel on earth” for his charitable work. He feels a sense of accomplishment by helping those in need. After the viral spreading of the ice bucket challenge during the summer of 2014, Millheiser is hopeful that more people will continue to become aware of ALS and support this truly important cause.


About Author


ALS Crowd co-founder, friend and ALS patient supporter. Jenny launched the CrowdCare Foundation in 2012 to bring patient involvement into the acceleration of a cure for rare and orphan diseases.


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