There is something I don't quite understand.

Isn't there a formal advocacy group for MG patients in the USA-the MGFA?

Why aren't they taking any action regarding this?

Patient's advocacy groups have influenced research, allocation of resources, approval of expensive medications etc.

Why can't the MGFA influence the decision to remove a form of treatment which is essential for some of its members?

It has been the experience of some neurologists and even suggested in the medical literature that mytelase is more effective and better tolerated than mestinon in MuSK MG patients.

Isn't that enough for the MGFA to take action?