ALS patients face loss of Medicare coverage for devices used to help speech

Starting Dec. 1, people with ALS — a disease that impairs motor function so people often can’t talk or even move — could lose access to technological advances that help them communicate, a change that is the result of a federal review of what Medicare can cover.

ALS, or amyotrophic lateral sclerosis, drew national attention this summer with the viral “ice bucket challenge.” But while public awareness about the disease soared, Medicare changes that could curtail coverage of communication tools were — by “sheer dumb luck” — already in the works, said Kathleen Holt, associate director at the Center for Medicare Advocacy.

Patient advocates have begun shoring up arguments to push back against the impending change, Holt said.

Historically, Medicare has covered 80 percent of the cost for basic speech-generation devices, the machines many ALS patients use. Those patients could pay out of pocket for upgrades that allow the devices to connect to the Internet and perform services such as opening doors. But in February, the Centers for Medicare and Medicaid Services (CMS) posted a “coverage reminder” noting that the program does not cover the cost of upgradable devices. In other words, Medicare only will cover the cost of the basic speech-generation device — not those that can be upgraded to perform tasks beyond speech generation or perform functions not considered medical.

The “reminder” was based on a much earlier coverage determination.

“We don’t see any reason why Medicare should turn the clock back to 2000 just because technology has evolved,” said Patrick Wildman, director of public policy at the ALS Association.

The notice is part of a review by Medicare contractors to make sure devices “comply with our coverage rules and the Medicare law,” CMS spokesman Aaron Albright said by e-mail. This review, he added, has been “suspended” until December to address advocates’ concerns. ALS groups have said the change will effectively bar patients from the machines they have been able to obtain through Medicare for years.

“Now, all of a sudden, the door is closing for them,” Holt said.

A basic speech-generation device costs around $4,000. But as patients purchase additions to the machine — such as eye-tracking technology, often used by patients who have lost movement in their limbs — the price tag can be $15,000 or more. Medicare covers about 3,000 devices a year.

With the new interpretation, Medicare-insured ALS patients could no longer use the program to buy devices that potentially could be connected to the Internet or that perform basic functions such as turning on room lights, Wildman said.

That can endanger patients, said Holt, who told a story of an ALS patient in distress. The patient, Holt said, was sitting alone on his porch when a neighborhood boy started throwing rocks at him. The boy later said he wanted to see if the patient was really paralyzed. Because the patient “didn’t have the capability of the Internet or ability to use the phone on his computer,” he was unable to signal for help. “He sat there and was just barraged,” Holt said.

The reinterpretation comes on the heels of a federal rule change that took effect in April, reclassifying speech-generation devices so Medicare patients would have to rent them for 13 consecutive months before being allowed to own them. Also, advocates said, Medicare has in recent months begun denying claims to cover eye-tracking technology, which uses patients’ eye movements to input commands in speech devices. It is often the only way “locked-in” patients — those who are conscious but can’t move or talk — can use their machines.

The rental requirement means ALS patients can temporarily lose access to the machine they have been using if they enter a hospital or hospice facility, because Medicare payments for the machines are suspended during that time, Wildman said. Those facilities are expected to provide speech devices, but devices often aren’t available or aren’t appropriately customized to match patients’ needs. If patients are released from the facility, the13-month rental clock restarts and patients may not be able to reclaim their customized machines.

This scenario depends on whether manufacturers that stop receiving payments take the next step and take devices away from patients. It is unclear whether or how often suppliers will do so, Wildman said, but the concern that it could happen remains pressing.

And the trend of denying coverage for eye tracking, which often is reversed on appeal, also delays patients’ access to the technology, Holt said.

Two hundred members of Congress signed on to a letter sent in September to CMS, asking the agency to address concerns about ALS patients’ access to speech generating devices.

The coverage reminder was scheduled to take effect Sept. 1.

But unless CMS changes its interpretation by December, the delay doesn’t make much difference, Wildman said.

“Patients aren’t asking Medicare to cover their [devices’ extra] functionality,” Wildman said. “They’re just asking to allow functionality at their own expense — which CMS routinely allows for wheelchairs, for example.”

Kaiser Health News is an editorially independent program of the Kaiser Family Foundation.