Catherine Wolf, whose opinion piece is republished below, died on Wednesday, Feb. 7, a few weeks after this piece appeared.
She was thrilled to see it in print because it supports the necessity for the New York Health Act, legislation she hoped would not only prolong her life and that of other ALS victims, but would also ensure health care as a right for all her fellow state residents.
The particular story here is one of many battles she waged to accommodate the ravages of a disease from which she suffered for more than 21 years. ALS left her unable to talk, walk or eat without a feeding tube. She breathed only with the help of an implanted heart ventilator.
Though the immediate cause of her death was sepsis that did too much damage to her body, the medication denial she describes would have left her unable to function as she had been: With the spirit that became an inspiration to all who knew her and read her words.
She would want her readers to hear once more about the New York Health Act which, because it covers prescription drugs, would have authorized the medication she needed without regard to profits for big pharma or insurance companies, and would allow doctors to practice medicine unimpeded by excess paperwork.