they may shut you out of their regular assistance programs but they do have other funds to help. You should contact NORD - national organization for rare diseases and ask for their assistance. They are helping Quix with her tysabri payments. Maybe she can give some other tips.
Don't give up.
Msmsinfl - I am not that far away either and it concerns me as well.
I'm interested in this too -- age 65 is not far away for me, and my understanding is that the DMD pharma companies don't allow anyone getting anything from the govt (like medicare, medicaid, VA, etc) to be in their assistance programs.
And the part D benefit is a joke for these drugs.
I am on Copaxone and I use their co-pay assistance. Go to www.sharedsolutions.com and see what you can find. They have co-pay assistance and another program. My co-pay is $75/month but they pay all but $35. Hope this helps!