DRAFT of a letter to correct Medicare Rules
My wife died of ALS. She was a military veteran during the Gulf War and later a medical doctor at the Orlando Veterans Administration Medical Center. (Veterans have twice the chance of getting ALS than non-veterans for some unknown reason.) There is no cure.
You probably know what ALS is. It is progressive and total paralysis. Eventually, the patient loses the use of all their voluntary muscles and lies in a bed, unable to move, eat, or speak for the rest of their lives. You can itch, but you cannot scratch. You can suffer great pain, but you have no way to communicate to your nurses. Paradoxically, the mind is totally intact. You have thoughts, memories, feelings, emotions, all perfectly normal. But your muscles no longer work. You lie there, for months or years, your paralyzed eyes fixed on the ceiling, just waiting to die. ALS is always, always fatal. Families thank God for the relief that death gives.
Communication with the “outside world” is all important to these souls. They communicate with a computer that tracks the eyes gazing across a computer screen, spelling out words and phrases. It is difficult and time consuming. But quite frankly, this tedious activity—communicating through eye tracking—is all these people have got left in their lives. They desperately need their Speech Generating Devices (SGDs) to have the ability to write letters, send email, read books, and browse the Internet.
Unfortunately, Medicare has recently taken away these poor souls’ ability to communicate. Specifically, Medicare has stopped covering SGDs that include the ability to email, access the Internet, or control bed functions, lamps and televisions. Medicare also is denying coverage for eye tracking. Further, Medicare has implemented a “capped rental” system, which means that if a person with ALS is admitted to a hospital, nursing facility, or hospice, Medicare stops paying for any SGD rental at all.
Only 30,000 people in the United States have ALS. But it is a torturing disease. We must correct Medicare rules to relieve the torture.
Please…[EDITOR’S NOTE: which rule is it that needs fixing?]