Comment Re:what the unholy &^%$#!!!! (Score 1) 311
$89,000/yr for deflazacort? Big Pharm clearly has the US health industry blindfolded, bent over and reamed but good doesn't it? My son has Duchenne's Muscular Dystrophy and is taking deflazacort for it. It hasn't been approved for general prescription here in Canada, but getting approval for it to treat DMD is a straightforward rubber stamp through the exceptional access program. Because it isn't formally approved, we have to pay for it and then get reimbursed for it, Also because it's an EAP drug, we're paying only a little over wholesale. Currently we pay 85$ for a three month supply, or 340/yr. That includes shipping from the pharmacy associated with the research and teaching hospital my son is being treated by.
1) Another Canadian DMD dad here. I almost hope that Deflazacort doesn't get approved in Canada. I couldn't afford it then! 2) My son is eligible for Etiplirsen - but there's no way I can afford $300k+ per year. My health care insurance only works on drugs available in Canada. 3) I've testified at the FDA Adcom for a drug in this rare disease world. What a headache. The degree of profit mongering, paperwork generating hurdles that are out there are mind blowing. I don't know if it's corruption, the free market gone wild, self-important bureaucracy, or if the circus was in town. But I can tell you that the FDA process ESPECIALLY for rare drugs is screwed up. I don't have answers. I do have a couple of thoughts though. 1) Hug your kids. Time can be short. 2) Point all the fingers you want at the Canadian medical system - I'm not complaining. (and I see a LOT more of it than 99.99% of the people whining and complaining about it) For the most part - I get to make life altering decisions for my family without having to worry about the bill.