Dear DMD community, I would like to have Health Canada make its own decision, independent of the FDA, about Drisapersen and Eteplirsen and any upcoming duchenne drugs. We need all countries taking action on this, so let it be known that we want these drugs NOW. Please write to Health Canada, Rona Ambrose, our federal health minister, write to your provincial health ministers, ask your physicians to do it too, write or phone:
Food and Drugs Act Liaison Office
Bureau de liaison pour la Loi sur les aliments et drogues
200 Eglantine Driveway - C1579
Ottawa, ON K1A 0K9
Tel: (613) 960-1202
Fax: (613) 957-6231
They allow us deflazacort under special access while the FDA does not, so why not one of these exon 51 skipping drugs? We have to try. Approval would be the best, but even if we could get the drugs while further studies go on and data is collected while they monitor for safety and benefits is better than the alternative: natural history, right?