Friday, August 31, 2007

I emailed our former neurologist (was a resident for us, then he moved, ) to let him know about the ACTH price increase.

He rapidly put together a Wiki on the Miami Children's website. It can be viewed here: link (when I try & load it I get something about a security certificate, but I can just click to load the page anyhow).

Dr. Miller would love to populate the page with short stories of families who may be affected by this outrageous price increase. He has wonderful suggestions for action to take along with what you might say to various outlets. If you feel so inclined, drop him a line about your IS story (a couple paragraphs would be good) and include a photo if you like.

Dr. Miller is very dear to us, and I'm so, so very touched that he put together this page so quickly to help spread the word & hopefully make a difference!

Tuesday, August 28, 2007

Cost of ACTH Going Up

I know I have a lot of updating to do (hello, no updates in two months, BAD Blogging Mama!), but this needed to be added immediately.

I *LITERALLY* feel sick.

The manufacturers of ACTH (adrenocorticotropic hormone), Questcor just announced that they are raising the price of ACTH from ~$1,000 per vial to OVER $10,000 PER VIAL. (A typical course of ACTH can range from 3-6 vials of ACTH).

This is an absolute OUTRAGE, and I am BEYOND sick about it. ACTH is a first line med for Infantile Spasms, and many, MANY insurance companies already fight paying the $1k/bottle. Fewer and fewer kids will have access to this medication with this 1000%+ increase in cost.

Please, if you have a moment and feel so inclined, please give Questcor a shout (1-800-411-3065) & let them know that a 1000% increase on a medication that so many CHILDREN need is an outrage. That their bottom line & profit should NOT come at the expense of children's lives.