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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