Opps ... this turned into a rant ! Sorry ... but after all this typing I might as well post. :roll:
I think we're all getting stuck, at least somewhat, in our respective countries because our health care "systems" were created by politicians and big business. I have "free" supplemental insurance because I signed my Medicare benefits over to the insurance company. They obviously (and correctly) figured they could undercut what Medicare pays and make a profit on their insureds.
I've been going mano a mano with them for three months trying to get a leg brace. Medicare covers it, so by law my insurance (Blue Shield, which I lovingly think of as BS) must pay. After mulling it over for two months, they deemed it "not medically necessary." I had had six falls in five weeks when that little gem arrived in the mail. They listed all the ways I could protest the denial, including a "fast review" if I felt my health was in jeopardy by their decision. I hand delivered a request for a fast review to their nearby headquarters the next day. Regulations state they must review within 72 hours. Three weeks later, I was told I "didn't qualify" for a fast review of the denial, with no explanation. Fortunately my case manager was able to rap a few knuckles and finally get it OK'd.
My BiPap was ordered last November. I got one two months later that was the wrong model, with no choice of masks. It has been operational only about half the time. It hasn't worked for the last week or so, and I am dragging around like a sack of cement. Have never been this exhausted in my life.
After paying large copays at the time of delivery for the BiPap, suction unit and cough assist, I am suddenly getting bills from this company (for a BiPap that doesn't work!) for large monthly rental fees. Was never told they were rentals, as I would not have gotten the suction unit if I had known. There is no way I can pay these large monthly fees, especially for equipment that a) doesn't work, or b) I don't need yet. The supplier will not take the equipment back without a doctor's order, and since they screw up every doctor's order they get, I assume they'll be billing what we laughingly call my "estate" for the rental fees for years after I've croaked.
But, on the bright side, I can get meds that BS won't cover from South Africa and New Zealand, via my Canadian pharmacy (the American drug manufacturers cut off supplies to the Canadian pharmacy because they sold to elderly and poor Americans ... can't have that stuff going on ! ... so the pharm. orders from "sister pharmacies" elsewhere). Even with airmail shipping, the meds are still half the American price.
I think what is happening with my situation is that the insurance company has no inkling of the needs of an ALS patient. I'm sure they sent the leg brace prescription to a bone doctor for an OK, not a neurologist. I'm sure the reason for the denial of the denial review (geez !) was because it was deemed to be some kind of isolated leg problem, not a possibly fatal consequence of a neuro disease. Just as they stalled on the BiPap originally because I don't have sleep apnea.
This is where the rubber hits the road for all of us PALS. ALS is a little-known disease and except for specialists, the generally untrained medical providers don't have a clue what it takes to keep us alive. Or ... I hate to think this is true ... they just figure they can outlast us, and keep us buried in paperwork till they can bury us for good.
If it weren't for MDA and ALSA, I'm sure I would be in much worse shape than I am now (which is not too hot, but I'm still walking and typing and the sun is shining, so it's a good day). Thank God for charities !
