A word to the fore: the following is a rant, not a request for information (if it were the latter, I would have put it elsewhere). Should anyone have any suggestions after reading it, I certainly wouldn’t reject them; but primarily I need to vent. Thank you.
As I’ve mentioned elsewhere, for the past 15+ years the Younger Ottlet has been dealing with a particularly nasty version of Chron’s. She held her own for a while, but between multiple surgeries (with attendant complications) and persistent anemia (at one point she needed iron infusions and/or transfusions every other week) she has not been able to work for five years or so. She finally applied for disability, and somewhat surprisingly she was approved on the first try. This gives her a stipend sufficient to allow her to starve to death in a cardboard box under a bridge, but the more important thing from her point of view is confirmation that she does indeed have a condition which impairs her ability to be productive; for her, that’s significant.
But of course there’s a catch: once on disability, her health coverage switches from Medicaid (which in the Soviet of Washington is remarkably comprehensive) to Medicare. This in turn means that she has to enroll in Part D for pharma coverage. Having been down this road myself, I advised her to sit down with a friendly neighborhood SHIP counselor. Which she did yesterday, at which point the fly plopped directly into the ointment.
No matter how hard the counselor looked, he could not find a Part D plan which includes adequate coverage for the immunosuppressive she needs to keep her Chron’s at bay. The best he could do, using every available discount and benefit, was reduce the annual cost from $150,000 to $91,000. For someone whose annual stipend will be little more than 10% of that. She said that by the time they were done, he was ready to spit nails; for her part, she was in shock.
There is am alternative, which she is pursuing with her doctor: applying to the manufacturer’s “patient assistance foundation.” If her application is approved, she will get the drug at a drastically reduced cost (if not free) for a year, after which she will need to reapply (I don’t even want to contemplate the consequences if she’s denied).
I find the situation appalling, to put it mildly. Her quality of life, if not her life itself, would be dependent on the charity* of the business which has priced the drug she needs out of her reach. With no assurance whatsoever that the program will be available in future. (I strongly suspect that one reason such programs exist it as a weapon against any legislation which would inhibit the manufacturers’ ability to gouge the public — “We regret that we would have to curtail our assistance programs if Medicare were allowed to negotiate drug prices, &c&c&c.” Perhaps I’m being overly cynical, but I kinda doubt it.)
To conclude — something I obviously find difficult — I’m furious. I have watched her deal with a debilitating condition with a grace and strength I could not possibly hope to match; to have her reduced to groveling, like Oliver Twist, not for a second bowl of gruel, but for the opportunity to lead a productive life, is beyond words. In what purports to be the Greatest Country on Earth™. Bullshit.
Again, this is a rant, not a request for information. Suggestions would be welcome, but more than anything thanks for listening.
*Bushwah. I’m certain that any costs are deducted from the manufacturer’s taxes. At full retail price, of course.
