The ALS Association Endorses Legislation to Preserve Access to Speech Generating Devices and Eye Tracking Technology

January 29, 2015

Washington, D.C. (January 29, 2015) — Today, The ALS Association endorsed the Steve Gleason Act, introduced in the Senate by U.S. Senator David Vitter (R-LA) and to be introduced in the House by U.S. Representative Cathy McMorris Rodgers (R-WA), that would help preserve access to speech generating devices (SGDs) and related eye tracking technology. The legislation responds to recent Medicare policy changes that have resulted in denials of coverage for eye tracking and prevented people from accessing SGDs and non-speech communication technology such as email and the internet, which are so critical in the day-to-day lives of people with amyotrophic lateral sclerosis (ALS).

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are approximately twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival.

“The ALS Association applauds Senator Vitter and Representative McMorris Rodgers for their leadership and for standing up in support of people with ALS across the country,” said The Association’s President and CEO, Barbara J. Newhouse.  “SGDs give a voice to people with ALS who have been robbed of the ability to speak by this horrific disease.  They are their windows to the world.  This legislation preserves that voice and ensures that Medicare policy cannot take it away.”

Over the past year, several different Medicare policies have limited the ability of people with ALS to access SGDs and eye tracking, which is used to access SGDs by people with ALS who have lost mobility in their arms and hands.   These policies include: a “coverage reminder” that would have prohibited coverage for SGDs that include non-speech technology such as email, internet access and environmental controls; routine denials of coverage for eye tracking; and "capped rental," a payment system that requires people with ALS to first rent SGDs for a period of 13 months before owning the device.  

“These changes have had a significant negative impact on the lives of people living with ALS and their loved ones,” said Patrick Wildman, The Association’s Vice President of Public Policy.  “Under capped rental, Medicare will stop paying the rental fee for an SGD when a person is admitted to a hospital, nursing facility or hospice.  The policy prohibits people from accessing email and the internet through an SGD while they are renting the device, even if they are willing to pay the cost themselves.  And without coverage for eye tracking, SGDs are useless to a person who has lost all mobility,” continued Wildman.  “Modern technology has helped to replace what ALS has stolen from people with this disease, and we must do everything we can to preserve access to that technology.”

The Association has worked closely with other stakeholders to try to address the challenges that have resulted from these policies and has actively engaged the Centers for Medicare and Medicaid Services (CMS) and Members of Congress.  Representative McMorris Rodgers along with Senators Vitter and Susan Collins (R-ME) helped lead a letter to CMS about these issues last year that was signed by 200 Members of Congress.  CMS has since rescinded the “coverage reminder” and initiated the process of revising its SGD coverage policy.

“The Association continues to work with CMS, and we are grateful that the Agency rescinded the coverage reminder and is working to revise the coverage policy,” said Wildman.  “However, that process is time consuming, and it may not address the problems with capped rental and eye tracking.  These policies are impacting people today.  People with ALS, who no longer can speak and who will lose their life to ALS in an average of just two to five years, simply don’t have time to wait.”

“The ALS Association believes this legislation is a responsible approach to address an immediate problem and would help ensure the Medicare program meets the needs of the people it was created to serve,” said Newhouse.  “It enables people with ALS to access the SGDs they need, when and where they need them.  We again thank Senator Vitter and Representative McMorris Rogers for making our fight, their fight.”

The Association also would like to thank the many other organizations that have helped lead this effort.  We most especially would like to thank Steve Gleason and Team Gleason.  Steve’s relentlessness to fight for people with ALS as he fights the disease himself is truly inspiring, and his efforts have helped to propel these issues forward and put a public spotlight on them that otherwise would not have been possible. 

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at www.alsa.org.

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