Before the nation found itself awash in ice-bucket challenges, surveys showed that just half of the public knew about ALS, advocates say. Families living with the terrible disease are touched - gobsmacked, really - by the surprising surge of awareness and donations.
Before the nation found itself awash in ice-bucket challenges, surveys showed that just half of the public knew about ALS, advocates say.
Families living with the terrible disease are touched — gobsmacked, really — by the surprising surge of awareness and donations.
“Ben cries at some of the videos,” said Lancaster resident Sarah Thimmes, whose husband’s amyotrophic lateral sclerosis was diagnosed seven years ago.
But some of that joy is being crowded with worry over an issue far less likely to go viral. A review of policies on Medicare coverage for speech-generating devices could keep thousands of people with ALS and other debilitating conditions from the technology they need to communicate.
The equipment isn’t a matter of luxury or recreation. It’s the only way ALS sufferers such as Ben Thimmes, 37, and Gary Ellis, 61, can talk to their loved ones, write a note or use the Internet.
Better known as Lou Gehrig’s disease, ALS is a progressive neurodegenerative condition that typically causes total paralysis.
“The thing is, my brain still works,” said Ellis, who, like famed physicist Stephen Hawking, uses eye-gaze technology to type the words he wants his computer to say. “I can hear and understand everything.”
The Dublin-area resident blinked at his wheelchair-mounted tablet to convey his opinion on Medicare’s stance. “Sucks,” he said.
Medicare had long allowed families to use their own money to upgrade the basic speech-generating devices covered through the program, the Center for Medicare Advocacy said. The policy review, however, seems to make clear that any device capable of being adapted for nonspeech uses such as email and Internet access — as most are nowadays — won’t be covered in the first place.
“We’re very concerned,” said Marlin Seymour, executive director of the ALS Association Central & Southern Ohio Chapter. “If you happen to be an ALS patient, then you want your device to include the ability not just to speak through it, but to do email, use the Internet, turn the TV on, those kinds of things.”
Another change took place in April when Medicare switched from a copay to a “capped rental” program for the devices. That means they must be rented for 13 months before they’re owned, a process that is terminated if the patient is admitted to a hospital, nursing home or hospice program.
“Hopefully, somebody is going to have as long a life as possible,” Seymour said. “But on average, a person lives two to five years after diagnosis. So once they get to the point where they need a speech-generating device, and they’re admitted to a nursing home or hospital or anything like that, Medicare won’t pay for it.”
Mr. Ellis’ wife, Pam, said they were fortunate to obtain his $15,000 tablet — paid for with private insurance and some of their own money — before he went into Medicare-covered hospice care this year. “Had we not got it then, it wouldn’t have been covered,” Mrs. Ellis said.
The Thimmes family is in a tougher spot. Mrs. Thimmes said his speech-generating device is 6 years old and won’t be under warranty after November. “When his stops working and can’t be fixed, what do we do?” she said. “This is great technology, and they’re trying to take it away.”
Mr. Thimmes, the father of two young children, can move only one finger on his left hand. Eye-gaze technology no longer works for him, but he can communicate by moving his finger just enough to break the computer’s infrared light beam, “like a mouse click,” Mrs. Thimmes said.
Several members of Congress have signed on to a letter urging the Centers for Medicare and Medicaid Services to clarify the policies and identify a “quick resolution” to address patients’ needs.
The ALS Association, flush with some $100 million in new donations from the ice-bucket challenges, hasn’t determined how the money will be spent. Research, care and advocacy are the main missions, but local chapters also have modest “loan closets” for families to borrow wheelchairs, speech devices and other equipment.
It’s safe to say the organization hadn’t planned to direct the windfall to plug a Medicare hole.
Mr. Ellis, who used to play guitar in two bands, serve as a volunteer firefighter and run for miles, can barely move his eyes and lips. “It keeps me connected to the world,” he said of his speech-generating device.
With it, he could thank every one of the 34 kids and adults who recently doused themselves with ice water in his driveway.