Last summer’s viral “ice bucket challenge” focused attention and helped raise money for ALS – amyotrophic lateral sclerosis – a disease that impairs motor function so people often can’t talk or even move. But while public attention focused people on the disease, Medicare changes already in the works could now seriously curtail coverage of communication tools that ALS patients need.
Unless it is delayed, beginning Dec. 1, people with ALS could lose access to technological advances that allow them to better communicate, as a result of what Medicare is allowed to cover. In the past, Medicare has covered 80 percent of the cost for basic speech-generation devices – the machines many ALS patients use – while permitting patients to pay out of pocket for upgrades that allows the devices to connect to the Internet and perform services such as opening doors.
But last February, Centers for Medicare and Medicaid Services posted a “coverage reminder” making clear that the program does not cover the cost of upgradable devices based on an earlier national coverage determination.
The policy notice is part of a review of Medicare contractors to make sure devices comply with Medicare and coverage rules. Medicare has “suspended” the review until December, according to a spokesman, to address advocates’ concerns. ALS activists say the change will effectively bar patients from the machines they have been able to get through Medicare for years.
A basic speech-generation device costs about $4,000. But that cost jumps sharply as patients purchase added features, like eye-tracking technology used to help patients who have lost movement in their limbs, with a price tag of $15,000 or more. Typically, Medicare covers about 3,000 devices a year.
Under the new interpretation, ALS patients insured through Medicare can no longer use the program to buy devices that could potentially be connected to the internet – often the only way ALS patients communicate with people not in the room – or that perform basic functions such as turning on room lights, Wildman said. Advocates say that Medicare is already denying claims to cover eye-tracking technology.
Lawmakers on Capitol Hill are extremely interested in this issue. In a rare, bipartisan effort, 200 members of Congress signed-on to a letter in September, asking the agency to address these concerns. So far, Medicare has not responded to the lawmakers.
