I called my senator's office and they called me back. It seems this is getting to be a regular problem.

Drug companies are stopping production of medications for rare diseases because they don't make money. Or they don't make enough profit on them. They were going to be looking into this and talking to other senators.

So maybe those of you in the US would like to call your senator's office. It would be nice if we could help others in the same boat. And help ourselves too.

От 26 години съм с Миастения Гравис. Първите 11 години бях на Неостигмин, Калимин 60, Местинон 60 и Оксазил, и не се чувствах добре - не можех да се обслужвам. От 15 години съм на Мителазе 10 мл и се обслужвах сам, а сега съм на Калимин 60 и нямам сили, трудно ми е да говоря, да се храня и да пия вода. Уплашен съм и не знам какво да правя.

Здравейте и добре дошли. Разбираме, че ги е страх, защото няма по-mytelase. Моля те, остани, така че да не се чувстват сами. :)

Google Translate

Hello and welcome. We understand that you are scared because there is no-mytelase. Please stay, so you do not feel alone.

THANK YOU CHEMAR! :)

oh no. I am so worried for her. for all of us really. is it time that we try to get some media exposure?

Hello Reynolds, The bottom line, and you said as much in September of 2012,
is good old supply and demand.

http://myasthenia.org/LinkClick.aspx...nQ%3D&tabid=40

Reynolds, This is really grasping at straws, but perhaps the FDA has a similar program. I can't see this flying with any physician here, however, I wonder if it would in the US?

"...Special Access Program (SAP) for Drugs and Medical Devices not Available in Canada: The Special Access Programme (SAP), via exemptions set out in C.08.010 and C.08.011 of the Food and Drugs Act and Part 2 Section 69-78 of the Medical Devices Regulations, allows physicians and dentists to gain access to health products for human use that have not been granted market authorization in Canada. Decisions to authorize this access are based on the circumstances and details of each situation. If authorization is granted, Health Canada provides a Letter of Authorization (LOA) to the manufacturer of the drug or device authorizing its sale to the requesting practitioner. A copy of this letter is sent to the practitioner. A copy of this letter must be sent with the shipment to allow timely entry of the drug/medical device into Canada..."

http://www.hc-sc.gc.ca/dhp-mps/compl...iu-uif-eng.php

Santfi has been making this medication in every country they sell it in. I think that does make the drug very expensive and much of it goes to waste. It used to be, when Mestinon was not so widely used, Roche would make the entire world's supply in New York and they would export it to the rest of the world. Every country in the world will allow sale of a US made drug.

So my theory is they could be making the drug here and allowing it to be exported to those who need it around the world. This would allow them to make less of the medication with more people buying from the same batch.

While it is supply and demand, it does seem terribly callus to allow people to fade away and maybe even die when an effective treatment exsists.

This is just so cruel.

I have spoken to the FDA and they did tell me they will let it in. They are all for it. Santfi would not agree. The easiest way to get it is for the drug company to import it themselves. Santfi said it would cost too much money.

So now we are trying to set up a method to get it from France. I have heard nothing on that front. I have no idea if that will work or not. I suspect it is probably another dead end.

The latest news I have is Santofi has stopped making Mytelase in France. So we won't be getting it from there.

In good news Alfresha in Japan has begun to make Mytelase. So now we are going to try and find a way to import it from them. If you look at their web page you will see they tagline is Taking on the challenge of 'unmet medical needs.'

Cross your fingers folks, we are getting a little closer.

Gone, Gone, Gone
 

Hello. The final word I have is Mytelase is gone from the US market and will never be coming back. I have tried to import it from Japan for a year and it is clear that is not possible. I am sorry to say we are never going to see this drug again.

I wish I had better news.