Our email box is as on fire as things get around here.  I’ve had both an email from the Executive Director of the Child Neurology Foundation, as well as a rebuttal from Mike Bartenhagen to that mail.

I’d like to remind everyone that not all Mikes are the same.  While I won’t post Mr. Bartenhagen’s response here, as his opinions are his own, I will post the Executive Director’s email here in it’s entirety.  I’m not going to break up the email with my response, but the bracketed numbers are my inserts, and my response to the bracketed points is below the text of the email.

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 Foundation¹s 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 [1].  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. [2]

 

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. [3]

 

Respectfully,

 

John Stone                           

Executive Director

Child Neurology Foundation   

2000 West 98th Street

Bloomington, MN  55431

Still with me?  Good.   

[1] As per our previous post, we are aware of this.  Awareness is good, but so is the correct audience.  After an initial period of shock, parents do a good job of educating themselves about the disease, and I have yet to speak to a pediatric neurologist who is unfamiliar with this disease.  While I appreciate the magnitude of the task before you, it seems to me that this effort needs to be undertaken more towards pediatricians, ER staff, and other front-line medical caregivers.  Of what value is advocacy of infantile spasms toward pediatric neurologists?

[2] There are more factors at work than just a threat of nonavailability, and I’ve already railed against them.  I’ve never known a world where ACTHar cost less than $23,000 per vial, and I have some empties in my fridge reminding me of this insult to my family.  You’re fighting an uphill battle trying to convince us fighting this in our children that this is anything less than profiteering.  While I support your awareness effort, there are many, including Mr. Bartenhagen with his response to you that consider this grant nothing less than blood money.  I, on the other hand, will happily take what I can get from them assuming it’s not going to taint the educational materials.  The ISAW website shouldn’t feel like an ACTH ad.

ACTH isn’t the only treatment, nor is it necessarily the best.  It has a less than 50% success rate in “curing” children, and a non-zero chance of death or other serious injury.  This all needs to be covered in the educational materials. Prednilisone therapy needs to be addressed.  Vigabatrin/Sabril as the only FDA approved treatment for infantile spasms should be covered.  Other medicines continue to be only available overseas, and these need to be addressed as well.  My concern with Questcor’s involvement in the ISAW isn’t financial or the source of the funds, my concern is any bias that may leak into the educational materials due to their sponsorship.  I will hold your foundation accountable for this.

[3] This is not the first time we as a community have heard this.  I suspect I’ve even spoken words like it either out loud, or written it to the readership here.  I am not an idealist, I am fully aware that money makes points loud and clear.  The thing is, the money needs to be spent in the correct direction and deliver the correct message.  Your sponsor has made this offer to you for whatever the reason, and I’m not going to attribute malice or benevolence to it.  You will spend it as you see fit, on what you see fit.  Please remember, we are all watching.  This isn’t a threat, but we’re accustomed to dealing with CBS incorrectly naming the disease on the evening national news, a poorly worded headline from the Epilepsy Foundation, a battery of med students hovering over our children in the ward, educating residents in the hospitals ourselves, insurance companies that have no idea what to do with us, and a phalanx of other annoyances that we deal with on a daily basis.

Nobody knows about this disease except neurologists and the parents of the children that are battered by it.  You don’t need to tell us that nobody else should suffer.  Make sure you tell who needs to know, and in unbiased a way as possible.  Marissasbunny.com has sent four people that we are aware of to pester their pediatricians into a neurology referral.  Marissa’s pediatrician is highly regarded, and was her mother’s pediatrician too.  This is her second case of infantile spasms in forty years.

So, who needs educating?