PG-13 language ahead.

We come from all walks of life.  We’re authors, stay at home parents, action figure designers, IT professionals, and healthcare workers.  Our ages vary, but our life experiences for a few years have commonality - seizures, ACTH, and anti-epileptic drugs.  Every day since the diagnosis, we’ve probably had to tell somebody about this disease.

So why is it so hard to come to a consensus on infantile spasms awareness?

Before I delve deeper into this, I’m going to issue an apology.  I sent the text of my first awareness week post from a few days far and wide, asking people to repeat the post on their own blogs to draw attention to the IS awareness week that’s rolling up on us very soon.  Most of you did, some of you didn’t, and that’s fine- I certainly don’t want to tell anybody how to do the IS blogger job.  All I wanted is people to sit up and take notice of the situation, I wasn’t advocating any specific position on the week like I have since.  I’m sorry I didn’t take a firmer stand and was a politic as I was, or make my position clearer in the initial post.

I’ve had some emails lately giving me grief about not coming out firmly against this Infantile Spasms week sponsored by Questcor.  Too many emails to post specific text from all of them, but the general theme is that I’m being too kind to Questcor and I should oppose this week and this pairing with the CNF with all my (admittedly limited) might.

I have a counter question and a clarification- why should I advocate fighting this money going out to somebody’s pockets besides Questcor executives?  Marissa’s insurance and our wallet has given Questcor hundreds of thousands of dollars over two years, and I’ll never, ever see it again.  Why should I not want them to dole out some money to an organization that may be able to help us and future generations in the long run?  Why is the CNF guilty of sins against IS parents before the campaign has ever started?

Who are we angry at?  Just Questcor?  Questcor and CNF?  Why not the rest of big pharma and the medical industry as a whole because they don’t seem to care?  Where do we draw the line?  Why are we not upset at Greg Grunberg for not addressing IS or the Epilepsy Foundation for treating us like bastard children of the larger whole?  While we’re raging, why not be upset at parents of children with well-known diseases?  What are we going to get from all this rage?

Be angry at Questcor all you like.  Be angry about the side effects of ACTH, the price, the color of their lobby, the cut of their pants, whatever you want.  I certainly don’t like Questcor as a company, but it changes nothing.  After ranting, you may feel better when all is said and done, but it’s a pyrrhic victory at best.  Those IS patients you rarely hear back from after ACTH?  Likely, the course of treatment worked for them.  There’s two sets of parents that are frequent readers here (one here) who got a neurologist involved because they read this blog that thank whomever they pray to that ACTH exists.

Sin is not commutative.  If the CNF handles the IS awareness week correctly, think what you want about Questcor and ACTH, but they will have funded the effort.  Whatever stain you apply to Questcor shouldn’t blight the CNF, again, assuming the literature is done cleanly.  Don’t stop doing what you’re doing, IS parents, for your own IS week.  Make your videos, talk to your pediatricians.  If it helps, it helps.  The first obstacle is overworked staff.  The second is the schedule that Doctors keep.  Our pediatrician is over scheduled seven ways ‘till Sunday and when she leaves the office after 7:30 PM weekdays and 6PM on Saturday, she has little interest in materials thrust in her hands by her patients.  Another 500 pound Gorilla sized obstacle is our existing schedules.  I blog here when I can, and that’s about my limit, between Marissa care and a full time job.  Time spent on general awareness is time not spent on untangling insurance, billing, therapy, feeding, medicines, our own sleep, and other related tasks.

Pediatricians have a semi-accessible door for access, though- Grand Rounds.  Grand Rounds are regularly scheduled continuing education for doctors of all sorts.  You or I, or Mary down the street can’t kick the door down and crash that party.  Our postcards, well (or ill) wishes, and videos won’t penetrate the sanctum.  How do you think we get access to this?  Corporate backing.

Money.  It all comes down to money, doesn’t it?  Where are we as parents going to get this money to prop that door open to Grand Rounds?  Wouldn’t you rather get it from somebody who already profits from us?  Keep CNF on task.  Keep them from making it an ACTH ad.  Don’t try to stop the CNF, the only group who’s even giving this disease any publicity, from taking the money.  I find it hard to grasp that we as a group would ever want no IS awareness week, even one sponsored by Questcor, because of petulance.

I’ve heard it most recently on a Babylon 5 marathon currently going on in the house- a passage from Exodus (23:22) echoed by an old Chinese saying states that the enemy of my enemy is my friend.  Who’s the true enemy, the disease or Questcor?