As you can imagine, they were devastated by not only by the news of their son's return of Infantile Spasms, but also torn by the fact that the drug they are recommending, once again, to treat his infantile spasms is ACTH.
Yet again, they are having to deal with the same hurdles they went through with the first round of ACTH. Questcor makes the process of obtaining the drug so difficult. Not to mention the cost takes a significant chunk out of Trevor's lifetime insurance cap at 17 months old. This is a drug that just a few years ago cost around $1500 per vial, now costs $25,000 per vial.
Today she posted an open letter in response to new the CEO of Questcor, Don Bailey. Please take the time to visit her blog and post a comment to show your support. Our hope is that by getting the word out, Questcor will do something to facilitate change in policy of obtaining the drug or lower the price to make it more accessible to all that suffer the devastation of infantile spasms.