if you enjoyed...

raising awareness (parts I, II and III) than I suspect this post may also get your advocate juices pumping on this beautiful (forecast warm n' sunny here) Monday morning.

See...after several concerned IS parent emails to the CNF we finally heard back. A solid week later. From John Stone Executive Director Child Neurology Foundation.

I'm going to post both John Stone of CNF's correspondence addressing our concerns. Along with Mike Bartenhagen's response which (not to sway public opinion...but to encourage weary eyes to take a deep breath and continue through the whole post) had me giving him quite an exuberant standing ovation in my living room. I learned that our cute lil' cape cod has very nice acoustics.

Sooooo my friends...may I suggest you get your reading specs out and your thinking caps on...this post is about to become (well worth the read) text heavy!


Dear concerned parents,

Thank you for your recent emails. First, I extend my best to you and your families. Second, our common ground is that we all want what’s best for our children, nephews, nieces, god-children, grandchildren, and the other children in our lives.

Please forgive my having to write one email to respond to all of you. We are a staff of two trying to raise funds for medical research, awareness and education while also, just this month - producing a newsletter, annual report, brochures, new disorder specific website, posters and preparing for an annual meeting. The Child Neurology Foundation faces two major challenges: 1st, One in four children in America suffer from some type of neurological disorder; and 2nd, there is a critical shortage of child neurologists which means there is an access to care issue in America for these children. So, time is precious but I thought it important to reply to your concerns.

I appreciate your feedback about the Child Neurology Foundation's decision to launch an Infantile Spasms Awareness Week. A key part of our mission at CNF is to provide public, patient and educational programs.

Pediatricians refer children with infantile spasms specifically to child neurologists for diagnosis and treatment. All too often these children get to child neurologists too late or not at all. As you know, late or not at all is disastrous for children with this disorder. It was determined that if parents, pediatricians and other health professionals had a better understanding of this disorder AND understood how important it was for these children to be seen by a child neurologist within the first two months of seizure onset that we might save them from cognitive damage so they might live a happier and healthier life.

We hope to use the new Infantile Spasms website as a vetted site to provide information directly from child neurologists to parents and health professionals to increase awareness, provide solid educational materials and relay important new research efforts. For example, recently, the Washington University School of Medicine heard about the launch of ISAW and asked if they would post our website and information supporting ISAW on their website. They are currently working on a spasms registry and genetic study. We also hope to use the site to reach out to parents and offer an opportunity for sharing about resources and experiences.

While I understand your anger over the price increase for Acthar that took place, what you may not know is that there was a period of time where Acthar had to be rationed due to its limited availability for patients. There was even a fear that Acthar would no longer be available. The manufacturer at that time was planning to discontinue making Acthar. When this happened, our child neurologists were very concerned because Acthar is one of the most studied and most commonly used treatments for infants with infantile spasms. As a result of conversations between child neurologists and the manufacturer more than half of Acthar produced today is made available at no cost to children needing it. As an organization, I can tell you we are grateful that today Acthar is consistently and reliably available to all infants who critically need it.

My hope is that you can support the CNF's plan to raise awareness and research dollars so that children born in the future may not have to suffer from infantile spasms.


John Stone
Executive Director
Child Neurology Foundation
2000 West 98th Street
Bloomington, MN 55431

Funding Research & Education Needed to Cure & Treat Neurologic Disorders of Children You Know

With your help...we will continue to fund research to find cures for the hundreds of neurologic disorders that affect more than 10 Million Children throughout North America. Child Neurologists treat a variety of Neurologic Disorders Including: Epilepsy; Autism; Migraine; & ADD/ADHD



You will have to forgive me if I am not overly sympathetic about how busy you are. You see we are also a staff of two here, my wife and I. We have a 7 year old son that functions at about 12 months, has upwards of 100 seizures per day, he requires constant care. We feed him, bath him, change his cloths, change his diapers, he requires constant care and will for the rest of his life. In addition to caring for Broc we have two other children that have needs, a small business to run, and each of us have a full time job to occupy our spare time. I tell you this not because I want you to feel sorry for us and I won't insult you by telling you how precious our time is, I tell you this as a point reference….we are all busy.

I am not sure what your experience is in regards to the price increase as it relates to Acthar so I would like to share some information with you as many of us have been in this fight for two years. Your statements in regards to Acthar certainly look as thought they were written with assistance from Questcor as it is the same story they have been telling for 2 years. First of all Acthar was not going away with or without Questcor. I have had conversations with the Department of Drug Shortages and they assured me that Acthar would be viable with or without Questcor they would not let it fail. If you need contact information for the office I can certainly supply it. Are you aware of the fact that Questcor doesn't actually manufacture Acthar? It is contract manufactured in Canada, a process that could easily be taken over by the government if it were truly a health care emergency. I would also be interested in seeing anything that supports the claim that 50% of the Acthar that is manufacture today is made available at no cost to children that need it. I am confident that this is not the case for one simple reason, if it were Questcor would be yelling it from the mountain top, it would be a PR plus and they are short on those. I have seen no mention of it anywhere. Do you know why Questcor had a need to raise the price of Acthar? They were in a cash crunch brought on by poor business decisions, they tried to introduce Acthar to the MS market and failed. They spent a lot of money to do this and then needed a bail out, guess where they turned? They went to the IS families for that bail out.

Are you aware of the fact that since the price increase in Acthar Steve Caratt, EVP of Questcor has collect about $4,000,000.00 through sales of Questcor stock? To be honest with you I am a pure capitalist and am not really sure that concerns me but how do you think this headline sits with parents " Questcor raises price of Acthar from $1600 to $25,000, EVP collects 4 million dollars, parents lose sleep over concerns, Child Neurology Foundation gladly accepts $100,000.00"?

Are you aware of the fact that as of Monday the first drug ever approved for IS was made available for prescriptions? Will you celebrate this achievement at your Infantile Spasms Awareness Week or will Questcor frown upon this.

I was also contacted by the doctor in St. Louis that is heading up the study as were other parents and the work quickly spread. Many parents are signed up or are in the process of doing so, we didn't need an expensive website to get the word out, just a computer.

You say "My hope is that you can support the CNF's plan to raise awareness and research dollars so that children born in the future may not have to suffer from Infantile Spasms." A quick Google search will show that many of this have been doing this for years, there are two forums with thousands of members, blogs, parents that communicate via email, phone calls, you name it we do it. You see John the mistake you made was thinking this could only be done with money, you can spend $100,000 on a website and take money from a company that many feel have screwed the very people you claim to want to help but that doesn't guarantee success. It doesn't take money John, it takes people. You did accomplish one thing, you have inspired many parents to work together to create a real Infantile Spasms Week, for the people by the people. No wine and cheese, no PR company, no tainted money just real people making a difference.

If you truly want to make a difference in the fight against Infantile Spasms why not cancel your wine and cheese reception and use that money to help fund a study that compares Synacthen and\or Prednisolone to Acthar? Both are a fraction of the cost and the studies I have seen show similar results. You see John that's the problem with accepting money from Questcor, they won't be very pleased if you did this.

I am sure that Alanna has been sharing our messages with you but if not I would encourage you to read the following, see how one of those you claim to care about was treated by the company you have partnered with:


We will have to agree to disagree best of luck with your IS Awareness Week, it won’t be something I would feel good about participating in.

I don't spend a lot of time reading or pondering quotes but I saw the following on a Nickelback video and it seems very appropriate:

"Never doubt that a small group of people can change the world. Indeed, it is the only thing that ever has." ~Margaret Mead



Anonymous said...

What a great read for a Monday morning! The hairs on my back were going straight up when I read John Stone's letter. These guys are so far out of reality that they don't even know they are in bed with the pharmaceutical industry. Of course, Questcor gets the last laugh and will continue to promote the off-label use of Acthar. Who do we contact at the FDA to see if they have any interest in this off-label promotion?

Erin M.

JSmith5780 said...

Erin- as I had said to Danielle, it's awful suspicious timing considering Questcor is re-submitting their sNDA to the FDA this month.

I tried googling FDA ethics and all I could find was ethics standards for FDA employees. Maybe this site??

Monica~ James~ Connor said...

How clueless that CEO sounds & i get the heeby jeebies thinking of these 2 dirty bedfellows & their "great for us" Infantile Spasms Awareness week. thanks but no thanks people. I don't know Mike but I think I love him for that great letter. Thanks to you and him for advocating for all of us families that have been impacted by the IS monster. It's nice to know that we have such strong (& vocal) cheerleaders!!

Adesta said...

I applaud all you parents who are so emphatically advocating on the behalf of your IS struck children.

I cringed when I was reading the letter from John Stone...specially how he tried to get you to pity him with the whole "staff of two" line. Whatever. How about the staff of two, sometimes one, who have to take care of these children day in and day out!?

As I said before, while I'm not dealing with this myself, I'm angry at these people for all of you who do.

Holli said...

Nicely said, Mike.

Thanks both of you for voicing out on behalf of all of us who do not speak quite as loudly!

Mrs. M said...

You go Girl! I love your advocate voice.
It's just sad that our little people are all about dollar signs and business to these organizations.