I have continued with my efforts to get Santofi to import Mytelase from France where it is still being made. I am asking for a group IND for everyone who needs it.

Today I received a call from Santofi. At 2pm today, January 22, 2013 they are meeting to try and find a way to import the drug for all the patients who need it.

So what do you need to to? CALL SANTOFI!!! 1-800-981-2491

They need your name. they need to know how many patients need the drug so they can import enough drug.

This is NOT a done deal. Your call saying you need the drug will help those in charge see there is a need for this drug.

So please get on the phone and add your name to the list. Or the name of your loved one.

You need to say you need Mytelase, it seems many people are on it because they are allergic to Bromides, so no mestinon. that is my problem.

And make sure you give your name and a contact number.


I probably made that as clear as mud. Ask if you have questions.

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Hi ,
My name is Octavia and my Mother is in need of Mytelase. She is sure she will die without it. If anyone has been able to get some or if I should just follow the advice left on this forum can someone let me know. I need help. I'm scared I will lose her. Please feel free to send me and email with any info to help her. Thank you so much!

Octavia

I just phoned Sanofi's Medical Info Dept (3/05/13) and they said they would not import mytelase for customers. Have you had any further success with them to locate product? Thanks for any feedback.

I too called Sanofi last week (on or about 3/14/2013) and was informed they would not be taking steps to bring Mytelase into the US.

I then called the MG Foundation of America to again ask why they were taking no action to help in this matter-I got no response. So I then pulled up the Foundation's Federal Tax Form 990 (this is available to anyone on the internet) and it became pretty evident why there is no help from them. The MG Foundation farms all their operations out to a management firm-Kellen & Co.- and seems to have no permanent employees. It would appear that Kellen & Co. has no intrinsic interest in the MG community other than collecting their management fee. Certainly their actions-or lack thereof-would tend to support this conclusion.
A further inspection of the Form 990 (for the year 2011, the last year available) showed some interesting facts concerning the yearly MG National Walkathon Fundraising drive. In 2011 $418,000 was raised. Expenses related to the Walk were $276,000 of which $217,000 was paid to the EW Group for running the event, leaving $142,000 to benefit the MG community-or pay Kellen & Co's management fee. In other words for every $1 raised 34 cents went to the MG Foundation and 66 cents went for expenses. A pretty good deal for somebody-you figure out who.

Basically, we have no advocates in this fight

I am going to speak to the MG Chapter to which I belong to urge them to take a closer look at the National Foundation and their activities.

well that explains alot. the MG foundation has seemed pretty scammy for a while.

I did hear from Santofi and they say it's just going to be so terribly expensive to bring the drug in. In other words we are screwed.

And the corporations make even more money. Sigh.

I appreciate all the posts. I am still desperately trying to find Mytelase. Whoever said Mestinon is more expensive in the U.S. has it backwards. Mytelase is much more expensive and now unavailable from Sanofi. I can't give up the fight since I am on my last two bottles and can't function without Mytelase. Can't we force the FDA to make them manufacture enough to support the folks who are still alive and using the drug? Does anyone have new information? Thanks much. ECJ

I have no new information. And frankly I think that is the last Mytelase you will ever see. I am told you can have friends or family purchase it for you in France and bring it into the US for your personal use. I don't think anyone here will be rich enough to make that happen.

there is no way to force them to make Mytelase. They can stop making it for any reason. There really is nothing more we can do.

I am begining to wonder if our time wouldn't be better spent trying to bring Monarsen in early. It is in stage two testing in the UK. My doctor seems to think it should work for me.

So, does anyone have any information on bringing a drug undergoing testing into the US early?

I have the final word. There will be no more Mytelase in the US. It is still being made in France and you can import it for your own use.

I am sorry. The people I talked to did want to provide it. they were very nice and I greatly appreciate all the work they put in on this. In the end it costs to much to make for the few people who take it.

So there is no more Mytelase.

So another thought. Has anyone tried contacting their Senator to see if there is something that can be done that way? I really hate to just give up on this. There just has to be a way to make this medication for those who need it.

It shouldn't be so hard to import it from one of the countries that still make it.

Mytelase is sold in french drugstores only by prescription.
Would it be possible for one US or canadian MG association to contact a french or belgian drug wholesaler and to import them?
Maybe this could be banned by USDA? There might also be high import taxes?
For your info, the full selling price in France is about 8 (eight) US$ per box of 50...
Maurice.