Original Message -----
From: "Michel Beaudet"
To: "Internaf's mailing list" <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Cc: Undisclosed recipient
Sent: Thursday, November 06, 2008 3:12 AM
Subject: Santhera's Catena/Idebenone/Mnésis/SNT-MC17
Hi,
For those who don't know me, my name is Michel Beaudet, I'm 46, have FA and live in Quebec, Canada. I also manage Internaf and I AM MAD AS HELL AND I'M NOT GOING TO TAKE THIS ANYMORE.
Ok, I had a few days to calm down but it didn't work. So anyway here it goes.
When my friend Paul Konanz mentioned how outraged he was when some canadian parents told him that Catena would cost between $20-$30K/year for every fa'er, a detail he probably didn't know was left out. $20-$30K/year is for doses of 450mg for kids under 45kg(99lbs). 450mg for a person weighing 45kg(99lbs) is equal to a dose of 10mg/kg, which is a far cry from the ±45mg/kg found in their own clinical trials to be well tolerated, good for the heart(cardiomyopathy) and slight neurological improvements (http://www.curefa.org/docs/pr_2006-11-13_santhera.pdf ).
As for me, and most weighing about 75kg(165lbs) I'd take the max. dose which is 2250mg. For a person weighing 75kg(165lbs) it's equal to a dose of 30mg/kg, which is also a far cry from the ±45mg/kg found in their own clinical trials to be well tolerated, good for the
heart(cardiomyopathy) and slight neurological improvements ( http://www.curefa.org/docs/pr_2006-11-13_santhera.pdf ).
And now ladies and gentlemen, get ready for this and have the phone near you ready to call 9-1-1 in case it causes you to have a
heart-attack, the price they ask for this is over $100K/year or about 9K/month.
And what is this outrageous price for? A cure? A full proof treatment? A treatment that will restore most/some of your lost abilities? No
none of these. For those with cardiomyopathy it's proven it'll help stop the progression and maybe even reverse some damage, For young
fa'ers replace the "it's proven" in the previous sentence for "the trend seem to show". How can Santhera justify such a price? Not the
usual Research and development bit cause Idebenone was developed by Takeda aroun 2 decades ago. Santhera simply signed a marketing agreement with them ( http://tinyurl.com/54rtv3 ).
Paul approached a nutritional supplements company that sold Idebenone on the internet. He negotiated with them and they now offer Idebenone in 500mg caps and with a 20% discount for the fa community. He also had it tested to make sure it was Idebenone and it was. Let's take my case for example: I'll even take a higher dose of 2500mg/day. A 90x500mg bottle is, after the rebate, $56. A bottle would last me 18 days. A year supply would require a little more than 20 bottles, so 21x56 = $1176. And with that price, we all know that the company is making a good profit. How can Santhera justify selling it with a 10000% (yes ten thousand %) increase.
I have medical insurance that will cover 80% of the cost and Santhera has a program to help with the 20% remaining but it depends on your
income. Even if my insurance paid 100%, it's still highway robbery and I won't be part of it. No wonder the worlds economy is crumbling, all
the big companies (Santhera is only small when it compares itself to the bigger pharmaceuticals). All that's important to them is profit,
profit, money, money. What happened to being prous to offer a good product at a reasonable price that you know will benefit your
brothers and sisters, the world over, that are not as fortunate as you.
I spent almost 2 days writing this post, so I better send it before my computer crashes. I urge all of you who can to translate and
crosspost, we all need to organize and do something!!!
--
Michel Beaudet
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Internaf - INTERnational Network of Ataxia Friends
http://pages.infinit.net/macmike
http://groups.yahoo.com/group/internaf
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