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!