ALS Patients Win Fight Over Medicare Reimbursement For Speech Devices

After strong pushback from ALS patients and lawmakers, the government has reversed a decision that could have blocked Medicare reimbursement for certain speech generation devices beginning Dec. 1.

The decision announced Thursday by the Centers for Medicare & Medicaid Services means Medicare will continue a longstanding policy to cover most of the cost of devices that can be upgraded by patients at their own expense.

Speech generation equipment is critically important to patients with ALS and similar neurodegenerative disorders – conditions that limit their capacity for movement and speech. Patients, since 2001, have had the option of paying themselves for upgrades, including those that enable them to connect to the Internet and open doors or adjust room temperatures. But in February, Medicare announced a policy interpretation that would have precluded coverage of the cost of upgradable devices.

Patients with ALS, amyotrophic lateral sclerosis, and their advocates strongly objected. On Thursday, the government backed off.

In reversing course, CMS “emphasized the importance of technology and how critical it really is, at this point, I think, to not make a new policy immediately,” said Kathleen Holt, associate director at the Center for Medicare Advocacy, which advocates for Medicare beneficiaries.

Advocates are still worried about the future. Medicare intends to update its National Coverage Determination – the federal rule that determines what Medicare can cover – so as to incorporate technological advances that weren’t around in 2001. Public comment will be solicited, and a revised rule is likely by July 2015, said Patrick Wildman, director of public policy at the ALS Association.

That means “there’s still the uncertainty of what is the coverage policy going to look like, come July 2015,” Wildman said. “Will it be something different?”

“One of the things I would say to beneficiaries is, we’ve got a temporary reprieve on this, but don’t stop fighting,” Holt said.

CMS spokesman Aaron Albright said the agency “is committed to beneficiaries’ access to needed technologies to improve their quality of life, including the coverage of speech-generating devices for individuals with a severe speech impairment.” He added that CMS is assessing the evolution of that technology since 2001.

ALS patients had aggressive support from Congress on the question of speech generating devices. Some  200 members signed a bipartisan “Dear Colleague” letter in September, asking CMS to respond to patients’ concerns. On Tuesday, Rep. Tim Murphy, R-Pa., sent the agency another letter.

The letters also expressed concern about a recent pattern of Medicare denials of coverage of eye-tracking technology, which uses eye movements to generate commands for the speech devices. Those claim denials are routinely reversed on appeal, but the appeals process can take months.

This article was produced by Kaiser Health News with support from The SCAN Foundation.