The bad news is you can't afford it. The good news
is that it doesn't do much if you could.
I've taken to playing a small game of "what does that drug cost" when I see a "ask your doctor if blabblabblab is right for you" type of commercial? There are some doozie costs out there; you can plop down $60,000 a year for psoriasis and twice that for any one of a zillion other fancy-dan drugs. The good news is that most are covered by Rx plans without pitched battles with insurance companies.
You've never seen a Radicava commercial and likely never will on TV. It will pop up on Facebook or on a Google ALS search on occasion but only after Google figures out you have ALS. The tendency is to go "oh boy!! at last a treatment" of course until you read the fine print and also talk to your insurance company.
I have a small but tightly communicative group of fellow ALS'ers, one of whom was recently declined coverage because, to put it bluntly, when you cross over certain physical minimums, the chances of Radicava slowing things down - which is all the drug does - slips below slim and on to none.
The drug itself has a pretty steep sticker price; $1,000/treatment administered by IV. The batteries not included is that from 10-14 days a month you need to maneuver to the hospital to sit for an hour while this IV drips in.$150,000 for the drug, say another $10-15k for the visits and you are home free.
I'm not bitter; really I'm not. I've got all types of insurance but have had ALS for over 2 years (disqualifier #1) and have a breathing capacity under 80% (that's #2) and a functionality rating scale score in the 20s (#3). So as many of my ALS friends say, well, I can either spend a few hundred grand to stay alive 10% longer although no one knows for sure or I can get off the elevator at a floor of my choice when I want and in a condition (stage) when enough is enough.
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