Wiki discusses alternatives to ACTH for infantile spasms

As reported here last year (Abusing the orphan drug law to rip off customers), Questcor Pharmaceuticals has jacked up the price of ACTH –a treatment for infantile spasms– by a factor of 20.
It’s a serious problem for parents and pediatric neurologists who are left to deal with the consequences. I’m told that the Child Neurology Listserv offers resources on the topic, but it’s not open to the public.

Luckily there is a wiki at Miami Children’s Brain Institute that provides tremendous information and is open to all. The wiki provides information about ACTH, how to obtain and use less costly alternatives, background on Questcor and suggestions for people who want to take action.

The wiki is sponsored by the Peacock Foundation.

July 17, 2008

3 thoughts on “Wiki discusses alternatives to ACTH for infantile spasms”

  1. Wow. That wiki is something. Explains why I’ve had increased hits on my blog lately on the Questcor-related posts.

    David, I have a question regarding consulting. I’m in a position to consider whether I might want to establish a side business as a patient consultant to a pharma company. How does one go about negotiating such things?

  2. David,
    Thanks for the post. This is a serious problem and what Questcor has done is really criminal.

    I do think it is very important to note that ACTH in fact has the best evidence for its use in what is a life destroying condition, as untreated infantile spasm become untreatable epilepsy with mental retardation. Vigabitrin may be the exception, but the drug isn’t FDA aproved and you have to go to Canada to get it. This is what makes the situation so much tougher, In a very real sense, going with an alternative is settling in a disease that takes no prisoners.

  3. let’s look at the big picture.

    questcor is the only drug company i know that publicly says it provides free ACTH for anyone who gets denied insurance coverage. do other companies do that? do hospitals do that? if patient can’t pay, do doctors automatically provide free service?

    from what i’m reading, none of you are qualified to make a judgement as to what is a reasonable profit for hmo’s, doctor’s wages, malpractice insurers, medical device mfgrs, and drug co’s?

    p.s. if someone bought questcor stock at $5.02, what is a fair return for him as a shareholder?

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