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Hi Robin,
I am early stage which is off label for herceptin as well. Initially we were told by the dr. that insurance would likely deny the claim and that we could appeal or apply to genentech for aid. When we first contacted our ins company they told us they couldn't determine whether herceptin would be covered until after the treatment and claims were filed.
We then filed a complaint with our state (virginia) insurance regulatory board who contacted the insurer within 24 hours. The insurance company then took action and reviewed the case for 3 weeks and approved treatment.
Their letter of approval stated that I was eligible based on the fact that I was Her+, had prior chemo, and that my onc had provided a letter of medical necessity.
Hope that helps. Good Luck!
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