Lawmakers: ALS patients hurt by new Medicare policies

More than 200 lawmakers are asking Medicare to explain policy changes they argue are hurting patients with amyotrophic lateral sclerosis, or ALS. 

In a letter Friday, the bipartisan, bicameral group said patients who are neurologically impaired must have full access to advanced technology like speech generating and eye tracking devices. 

{mosads}”Americans rely on these innovative technologies as their only means to continue communicating with family, friends, and the outside world, but [Medicare’s] recent actions are now limiting their ability to benefit from these tools that help lead to independent, productive lives,” the group wrote. 

The effort was spearheaded by Reps. Cathy McMorris Rodgers (R-Wash.), John Tierney (D-Mass.), and Erik Paulsen (R-Minn.), along with Sen. Susan Collins (R-Maine). 

It comes amid a national conversation about ALS following the viral “Ice Bucket Challenge” trend to raise money and awareness. The disease damages nerve cells in the brain and spinal cord, slowly inducing paralysis. 

The lawmakers’ letter said Medicare is now withdrawing coverage of speech generating devices if users expand their functionality, or “unlock” them. 

Several contractors are also issuing “routine denials” for eye-tracking technology, even for patients with the right documentation. 

Legislators called the policy changes “shortsighted” and harmful to people who are seriously disabled from their illness. 

In response, Centers for Medicare and Medicaid Services spokesman Aaron Albright said the agency is “committed” to ensuring sick patients have access to “needed technologies to improve their quality of life.” 

Medicare payment contractors are “currently undergoing a product review of available speech-generating devices to ensure that they comply with our coverage rules and the Medicare law,” Albright said. 

The review was delayed and any policy revisions will not take place before Dec. 1, he said.