The moment the flood of ice-cold water poured over my head, there was shock and silence; seconds afterward, my senses returned. I blurted out: “That’s cold!” Family nearby laughed, the moment passed, and the video of my ALS Ice Bucket Challenge was shared online. Mission accomplished, or so one might think.
My state of frozen speechlessness was over in a moment, but for people diagnosed with ALS (amyotrophic lateral sclerosis also known as Lou Gehrig’s disease), that state doesn’t just last for a moment. It’s an ongoing, harsh and frightening reality that makes life more difficult and can actually shorten it.
LOSS OF SPEECH SIGNALS LOSS OF CONNECTION
Verbal and physical communication connects us. It is essential to life. But impaired speech (dysarthria) is among the first symptoms evident with ALS. As the disease advances, degradation of the nerves that control lip, jaw, tongue and vocal cord movement causes reduction in muscle stimulation. Unused muscles grow weaker and weaker, to the point where 80 to 95 per cent of people with ALS cannot fulfill their communication needs using their voices alone. In time, most become silent, unable to speak at all, and it’s this loss that isolates ALS patients perhaps more than any other aspect of the disease.
New clinical research points to promising investigational therapies that may slow the progress of ALS. This is important, but patients struggling now lack the luxury of time. While they wait, there are other innovations that can make their lives better and ease their isolation, especially health tech that assists essential communication. But these technologies only work if patients can get access to them.
EYE-TRACKING TECHNOLOGY OFFERS PEOPLE WITH ALS THE ABILITY TO COMMUNICATE
Advancements in precision eye-tracking can enable many with ALS to tap into lifestyle-assistive technology options. As leg, arm and lip muscles become weaker, eye-tracking tech enables users with ALS and other neurodegenerative conditions to engage in daily tasks, including wheelchair operation, home automation and augmentative and alternative communication (AAC) with family, friends and health providers.
One thing to keep in mind: for ALS patients, preserving communication is an essential part of care. If patients can’t communicate with those around them – especially family, caregivers and doctors – they are lost. The ability to communicate and be understood improves and may lengthen life. Austin Nieto recounted how obtaining an AAC device broke through his father Augie’s crippling isolation.
“With my dad’s mind unaffected, he basically became locked in his body, unable to communicate his thoughts, feelings, and basic needs,” shared Nieto. “My father was given a life expectancy of two to three years at the time of his diagnosis, and we are blessed that this year will be his sixteenth year with us since that day. I honestly believe this is a result of his EyeTech eye-tracking communication device.”
Today’s AAC technology is easy to navigate, and the clinical “magic” is driven by the marriage of medicine and software. EyeTech technology uses machine learning and artificial intelligence to translate a user’s gaze into action, enhancing conversation and ability. While the technology’s control panel is a familiar, user-friendly tablet, its operating system draws from constant human interaction, cloud-based secure data and camera calibration. The more a user makes it part of their real-world situations, the faster the technology adapts to provide an intuitive and natural connection between users and those around them. EyeTech founder and chief science officer Robert Chappell says:
“Eye-tracking is uniquely capable of enriching lives and delivering a higher quality of life to people needing to access AAC technologies. Focusing on how the technology can be a facilitator of connection and not an arduous barrier for people with neurologic conditions is what is making innovators drive toward new software and software updates geared to advance the AAC and medical fields – it’s all about accessibility for people in need – accessible of use and reimbursement.”
ALS DIAGNOSIS SHOULD TRIGGER RAPID PAYER APPROVALS FOR SUPPORTIVE CARE
Accessibility is the rub. The urgent need to support or restore communication makes getting authorization for AAC devices among the most frustrating challenges people with ALS and their families face. Payers too often treat requests for communication technology as secondary to care. This is wrong: with ALS, communication IS care.
The process is far from straightforward. People with ALS must first be evaluated by a speech language pathologist or other health professional to validate need based on cognition, speech quality and access ability. Then, device requests are sent to an AAC device manufacturer who must navigate the Medicare, Medicaid or private payer maze for reimbursement. Finally, the person with ALS must train to use the technology that will break their isolation and allow them to communicate again. Then they wait for approval to gain access. As their minutes and days tick away, they live in disease-imposed silence.
Service organizations like the Paralyzed Veterans of America (PVA) help U.S. veterans, who are twice as likely to develop ALS, navigate the Byzantine approval process. Others have to find their own path forward. Medicare often covers 80% of device costs every five years, but ALS patients without supplemental Medicaid or private insurance need to pay out-of-pocket for copays. The average cost of a speech-generating device is $15,000, so people already devastated by ALS and the potential of being trapped in a silent world face the additional hurdles of income loss and mounting medical debt.
COMMUNICATION IS A LIFE LINK
For most with ALS, this is an unnecessary hardship, imposed by a system that appears to lack the humanity required to meet their most basic needs. Communication for people with ALS isn’t just a “nice- to-have” – it is an essential life link. While caregivers, providers and AAC innovators struggle through the approval and payment process and its roadblocks, people with ALS and other neurological conditions watch precious days, often weeks, slip by.
Eye-tracking AAC technologies are proven; they support and sustain lives. There is little doubt of their ability to break the isolation of ALS patients and support those who live with other disabilities and neurological diseases like Parkinson’s and Alzheimer’s. The health system is fragmented with people with health urgencies needing to navigate its complexities. The technology works and makes a life-sustaining impact. What will it take for the payer and approval system to heed the patient’s urgent call to action?