Outraged at off the label cost of Herceptin

RobinP · 12-29-2005, 05:55 PM

I was just informed by my onocologist that I would have to fit the entire bill for late Herceptin since I was getting it off label. Can you believe this? I am outraged. Has anyone else gotten it off the label and has gotten insurance to pay for it; if so,how please?

Joni · 12-29-2005, 06:25 PM

I don't understand what you mean by "off the label" cost. Could you please elaborate. I have the HER-2 gene and am most likely going to get Herceptin. I'm hoping Pacificare will pay for it when I do.
Thanks,
joni

RobinP · 12-29-2005, 06:31 PM

Off label use implies to stray beyond a drug label's guidelines. Since Herceptin has not been proven in clinica trails to benefit those who are beyond 6 months of cancer treatment, then late Herceptin use would be considered off the label.

Thanks for the input so far. Bev. I appreciate your comments, and I will do the same for reimbursements; looks like there is light at the end of the tunnel.

Joni · 12-29-2005, 06:40 PM

...I am new to the Support Group and still learning how to use it. I appreciate your quick response. My re-occurence is what you would call late I guess. I had a mestectomy in 97 along with Adriamicin and Cytoxin for 3 treatments then Taxol for another 3 followed by 35 rounds of radiation. I was clear for 7 years and now it is in my neck and left lung, and lymph nodes in my chest. As my neck is broken, a long story, but radiation to it compromised the bone...I am not getting Herceptin as yet. Doc wants to watch the neck as it is what has given me the most pain.

If this isn't the area to be including my history, please let me know. Maybe I should be posting my status and questions somewhere else.

My best to you Robin in getting your Herceptin covered.

Joni

Lolly · 12-29-2005, 09:20 PM

Joni, the others are talking about late Herceptin for early stage disease...your recurrence is "late" in that you went beyond what used to be considered the benchmark for survival, 5 years.

I don't understand why you aren't getting Herceptin even with the neck issue, it's not at all like getting chemo, and could quite possibly serve to keep the mets stable and prevent further spread while you let the neck heal. I would sure ask about it, many of us are on Herceptin alone with almost no side effects.

<3 Lolly

DeborahNC · 12-30-2005, 05:22 AM

I can understand your outrage.

Although I have yet to receive an EOB from BCBS FEP after completing two cycles of Taxol/Herceptin I have been assured by my Dr's office that there will be no problem with my insurance paying. I'm Stage 1, Grade 2, ER+/PR-, Her2+++, neg. node and feel lucky to be getting it.

If I had to foot the entire bill I would be unable to take it, period.

Joni · 12-30-2005, 09:55 AM

Well Lolly, that is a good question. I assumed that it had not been used successfully without chemo of some sort. I have been talking to a nurse at the University of Arizona Medical Center (where I was covered for treatment in 1997 by another ins. provider) and she is asking for a review for me by UMC docs altho it is out of my Pacificare plan now. Don't know if it will fly without paying out of pocket, but worth a try. I will bring this up on 01/03/06 when I see my onc. UMC nurse told me of a new chemo drug called Abraxane that has fewer side effects than Taxol as it does not include Cremfor (sp). I understand premeds are not as necessary with it and it takes a shorter period of time to administer. I don't know if I can get it or it will be covered.
Thanks for the reply.

RhondaH · 12-29-2005, 06:26 PM

and it is only approved for metastatic bc, I am getting it off label and have had NO problem getting it covered (I have only had to pay for my doctor visit copays). Keep fighting...

Rhonda Hoffman

Bev · 12-29-2005, 06:27 PM

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!