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Circle the Wagons, Infantile Spasms Community

Posted Jul 26 2013 12:00am

 

I’ve been silent on this subject for a long time now.  Too long.

 

During the silence Questcor has gathered their arrogant loins about them and is once again seeking to pillage the most vulnerable.  In the words of my friend and fellow Infantile Spasms advocate, Mike,

 

“the IS Community needs to band together and insure that our kids are protected.  Screw me once shame on you.....Screw me twice shame on me...”

 

While our open letter is aimed primarily at our community, the Infantile Spasms Community, we fully appreciate that the impact reaches further.  You have our complete and full permission to share at will with those whom you feel this will impact.  Together, we can make a difference!

 

**********

 

Questcor, the company that acquired the rights to Acthar (ACTH) in 2001 and jacked up the price of this Infantile Spasms treatment, is at it again.  They have acquired the U.S. rights to another IS treatment – Synacthen, and we do not doubt that this will be a repeat of history.  However, this deal can be voided, and the only way to stop them is if we all speak up, and speak loudly.

 

In the summer of 2007, Questcor raised the price of Acthar from $935 per vial to $23,265 per vial over the course of a weekend.  Their claim was that this would allow them to further research the medication and improve its use.  We consider ourselves very active in the IS community, and we are not aware of any effort Questcor has made to improve Acthar or its use as it related to Infantile Spasms.  In fact, other than a few laughable donations to try and cleanse their image, we are not aware of any effort Questcor has made to improve the lives of our children.  During this time, the officers of the company have made hundreds of millions of dollars while exploiting children with Infantile Spasms.

 

The newest drug Questcor has acquired is Synacthen, a form of ACTH used outside of the U.S., which is a fraction of the cost of Acthar.  Last month it was announced that Questcor acquired the U.S. rights – along with some international rights – to Synacthen.  Questcor claims that their intention is to make the product available as a possible alternative to Acthar.  However, based on Questcor’s history, there is no doubt in our minds that their only intention is to suppress competition.  In our opinion, they want to insure that another company doesn’t acquire the rights to Synacthen and offer it as a viable alternative to Acthar at a reasonable price.  The Federal Trade Commission can investigate this acquisition and void the deal, and we are hopeful that this can happen.

 

You may be thinking, “This isn’t fair but it doesn’t affect me, so I’m not getting involved.”  However, we could give a list of 100 people that have long since moved past the diagnosis of Infantile Spasms and have the diagnosis as a normal part of their lives.  Despite this, these people patrol the IS forums, message boards, FaceBook groups, support groups, local groups, etc., all in an effort to help those that have come after them.  The people that this will ultimately affect have no idea today what they face, and so it is up to us to make sure they have every opportunity possible. 

 

To stop this from happening, we need to contact the Federal Trade Commission (FTC).  Anyone willing to speak to the FTC about their concern in regards to Questcor acquiring Synacthen, please send your name, e-mail address, and phone number to mike@infantilespasms.com .  This information will be kept confidential, and only shared with the FTC.  You will most likely receive a phone call with informal discussion about your feelings in regards to the acquisition.  It will take very little time, and in return you will be helping those parents whose children have yet to receive the devastating diagnosis of IS.  Please feel free to contact us with any questions, or pass this on to others.

 

Thank you for your time,

 

Mike Bartenhagen and Danielle Foltz 

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