- “Common sense is not so common.”
- Voltaire
Posted: October 28th, 2014
The Washington Post ran an article recently focused on the fact that ALS patients may soon lose Medicare coverage for devices which help them to communicate as their ability to speak wanes through the terrible attrition of the disease.
For roughly the past 15 years, Medicare has covered about 80% of the basic cost of speech generating machines like those that many ALS patients use. We have all become familiar with them if not through personal contact, then by seeing various public figures such as Steven Hawking and Steve Gleason use them. They are a godsend for patients and their families. Today, there are many programs where patients can record a full vocabulary when they are first diagnosed and the machines will later actually speak with the patient’s own voice and inflections.
As time has gone on, these machines more and more resemble computers in their capabilities, and many can be upgraded to connect to the internet, make emergency phone calls, and even open doors and turn on lights. As our houses become “smart” devices, there is little limit to how helpful and useful these devices with their “eye blink” interface can become.
But the CMS (Centers for Medicare & Medicaid Services) posted a notice back in February reminding people that the coverage does not apply to “upgradeable” devices; even though the cost of the upgrades is borne completely by the patients. What this meant was that if you bought an upgradable device, it wasn’t covered. They were saying in essence you had to buy the oldest, 14 year old, least helpful, least reliable and least useful model, to get reimbursement. This is simply so Stupid, it was hard to believe they would actually say it. The uproar was immediate and loud, and the CMS agreed to “postpone” a decision until December to allow for advocates to state their positions. But several public statements made in the interim would seem to indicate that they are not going to change their view.
According to the Post, some 200 members of Congress have signed a letter to the CMS stating what a bad idea this is. ALSA has weighed in as well and I urge anyone reading this to please contact ALSA and find out who you can call or write, or what else you can do to help support this effort.
Yes, there are tremendous budget pressures on all government agencies and programs, and there is nothing wrong with looking at every program to see that in implementation it matches the government’s obligations and intentions. But turning the clock back (as Pat Wildman, Director of Public Policy at ALSA has called it) on ALS patients accomplishes None of those things. There is nothing in the review of priorities and expenses which prohibits the use of common sense. The fact that we even have to fight this fight shows the all too unfortunate truth of Voltaire’s observation. Common sense has certainly deserted the CMS in this case.
