All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident . Facts are stubborn, and refusal to accept them does not avoid their inexorable effects-the tragic consequences are now upon us - Hellen Keller. The time has come for everyone to step up and be an advocate for our children. It is no longer enough to simply ask questions. We need to demand answers.
Saturday, November 7, 2009
Thursday, September 24, 2009
Danielle's words....worth a read.
Once upon a time...
In a land far away...
Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.
See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.
Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.
In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.
Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.
But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.
Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.
How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.
Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.
Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.
Which leaves me wondering why?
Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?
Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.
I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.
Which brings me to my own suggestion?
If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.
I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.
I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...
Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?
If Acthar fails - Questcor will reimburse
It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.
Call me crazy, but I do believe that would generate some awareness.
In a land far away...
Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.
See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.
Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.
In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.
Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.
But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.
Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.
How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.
Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.
Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.
Which leaves me wondering why?
Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?
Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.
I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.
Which brings me to my own suggestion?
If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.
I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.
I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...
Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?
If Acthar fails - Questcor will reimburse
It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.
Call me crazy, but I do believe that would generate some awareness.
Wednesday, September 23, 2009
Questcor is at it again....
This message below is worth a read....
From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness Week
Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.
If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.
It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.
-Mike
Marissa's Dad
From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness Week
Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.
If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.
It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.
-Mike
Marissa's Dad
Saturday, August 22, 2009
Do You Know Jenny?
By Kent Heckenlively, Esq.
If you had a problem with alcohol in the late 1960s or 1970s you might be quietly approached by someone who said they were "a friend of Bill W." Bill Wilson was the co-founder of Alcoholics Anonymous and those who had been through his program identified themselves as “a friend of Bill W.”
To be a friend of Bill W. meant you understood certain principles, such as asking forgiveness of the people you’d harmed, and turning your life over to a higher power. One of my good friends became a “friend of Bill W.” before I met him and remains one of the finest people I know. He sometimes talks about how much AA means to him and how he has gone onto sponsor other people to become "a friend of Bill W.” But not a lot. Being "a friend of Bill W.” also means being humble, regardless of the number of people you may have helped.
The other day I joined a gym. I haven’t belonged to a gym for years, but for me it’s the best way to exercise. I know others can be diligent and throw their jogging shoes on and run out the door, but that just isn’t me. I need a gym.
And since it had been more than a decade since I’d lifted a weight I paid for a couple sessions with a trainer. The beefy trainer in his early twenties seemed as if he lived a life light years away from my concerns. In the midst of setting up a work-out routine he asked me about my hobbies, and I mentioned that I wrote for a web-newspaper on autism because I have a daughter with the disorder.
“Do you know Jenny McCarthy?” he quickly asked.
I told him I hadn’t actually had the pleasure of meeting her, but she also occasionally wrote for Age of Autism, in addition to her books and television appearances. Then I asked how he knew about her.
He went onto explain he had several cousins with autism and their parents were avid followers of Jenny. And it struck me then that Jenny McCarthy has become our common touchstone, just as Bill W. was to a generation of people struggling with addiction problems. Like alcoholics struggling to recover in the 1960s and 1970s we're still something of an underground movement, but Jenny is our code word.
I didn’t have to explain about the role of vaccines in autism, the raging debates, the “gene” studies which reveal less the more you examine them, and how we believe medical authorities are concealing vast amounts of information like the Vaccine Safety Database. My trainer knew. He knew Jenny.
And maybe that's been Jenny’s greatest contribution. You need only become familiar with her writings and public appearances to be in on the conversation. She has done so much of the education for us. We just need to continue that conversation.
When I go back I'm sure I'll have more conversations with my trainer about his cousins with autism and ways to possibly help them. I'd been looking for something of a break in going to the gym, but it doesn't seem like that's my destiny. The demands of the epidemic intrude even as I'm struggling to fit into a pair of size 34 jeans. And in the helping tradition of Bill W. it's the only response I could give.
In the future maybe the question won’t be “Do you know Jenny McCarthy?”, but are you "a friend of Jenny?”
Tuesday, August 18, 2009
Is there blood on your hands?
Sorry I haven't posted in a while.
I don't know why....
No energy for the fight maybe? That's a cop-out and I know it, but it is what it is. I lost it somewhere between therapy sessions, and follow up EEG's, and trips to Detroit, and meetings with specialists.
I'm struggling to get it back...because I need it.
I have six months worth of excitement, progress, fear and heartache inside, all bottled up. So I'm workin on it. I updated some things, such as my profile. It's a start anyway.
In the mean time, check out this post from a fellow blogger...
either copy and paste below OR just click on my title "Is there blood on your hands?"
http://crystaldavidsonengler.blogspot.com/2009/08/1-in-100-when-will-you-listen.html
Love the message...and the graphics!
For now...
Karen
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