Shkreli piece & my response in Science Translational Medicine. If FDA is transparent, then answer this!

In the Senate Oversight committee and gov reform hearing last week, the guy they’re calling my favorite ‘bad boy,’ of big pharma, Martin Shkreli proved he is finally listening to someone other than his ego. He keeps taking the fifth when he is asked if he broke the law or did anything he thinks illegal. He’s listening to council. Then he goes home, goes on Twitter and tweets, and I quote ‘I can’t believe imbeciles like this represent us and run our government” He’s the one who bought exclusive rights to Duraprim, an ancient antiparasitic, got ‘Orphan’ reclassification and jacked the price 50 fold, to 750.00 a pill.


Why didn’t anyone mention the ‘Orphan’ protected status and how it is being used on old generics like the one I’m on for the Parkinson’s like side effect of psych meds called ‘Tardive Dyskinesia,’ considered and orphan disease? My med is 300 a month and all it is is a longer acting benzo like Klonopin that’s not rarely used. Now it’s out of reach and I’m shaking like a leaf from my disorder, trying to figure out for an article I’m writing whether or not pending ‘Orphan’ application are a matter of public record. I’m on more generics. Some of them may become ‘Orphan,’ now that older drugs with R&D well behind them are being afforded this protected status. So, FDA, Tim Conte, (who is the head of FDA’s Orphan Division and is on a viewable video claiming it’s only for NEW Drugs), here’s what I want to know: can consumers find out and have a ‘heads up’ on possible future price hikes on drugs they depend on or not?


Because if we knew in advance about possible future price hikes we could have a backup plan in place. I was caught offguard and it cost me several hundred dollars and in the meantime I’m going without. Allison

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