This is a little different today. I was reading a post earlier in my Infantile Spasms group about a desperate mother whose son recently had a relapse of IS. ACTH treatment got him seizure free and was a "miracle" for them for 8 months. She has been a vocal advocate on the subject, speaking out against the most recent price increase, and for good reason. A potential cure for many IS babies, ACTH pricing has gone through the roof. A vial that used to cost about $1600 in Aug-Sept of 2007, is now an astounding $23,000!!! That is only a vial. An actual treatment (like Austin's) can cost upwards of $100,000 thanks to Questcor's (manufacturer of Acthar Gel -ACTH) greed.
Danielle is mother to Trevor, 17 months. She wrote this letter to the CEO of Questcor, with whom she has had previous contact (their story has been used as an example of success in their medication) and asked any bloggers to re-post to get it seen by as many people as possible. I, for one, am more than happy to do this as we were just in this position of needing assistance with obtaining ACTH ourselves.
You can read her letter to Don Bailey (CEO/President of Questcor) here
http://trevorshope.blogspot.com/2008/09/spilling-my-guts-for-presidentceo-of.html
1 comment:
Holli...thank you SO much for posting my letter! IS is an intensely emotional journey as it is...but then to deal with delayed treatment due to astounding price points. It just shouldn't happen.
Austin is beautiful btw!
((((hugs))))
...danielle - trevy's mommy
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