Getting biologicals "off-label"

[Sharon]

Has anyone had any luck getting biological treatments
such as Orencia or Rituximab approved through their insurances
as "offf-label" treatments for SJS?

[Tharrell]

Mine submitted it to the insurance for seronegative ra. I don't think they would have filled it off label for sjs. My insurance is becoming quite the pain in the butt and will not cover medicine that is not FDA approved for a certain condition, even if it's the only one treating the condition like my daughters case for her IC.

[Sharon]

These insurances can be pains in the @$& for sure!
Which insurance do you have?
Mine is supposed to cover off-label prescriptions but I'm not sure they'll cover a biolohical for SJS.

[Jasper]

My Rheumatologist submitted the request for Cellcept under my sero-negative RA diagnosis. She also submitted the request for Rituximab under my sero-negative RA diagnosis.  Neither of those drugs would have been approved under my Sjogren's diagnosis.

Imuran did not need prior authorization, so it was just ordered and I got it with no problem. Imuran was the first drug I tried but my liver enzymes skyrocketed and it made me sick so I stopped it after a month.

I think each insurance company is different but I have found that they do try to keep from paying for drugs if they can find a way to get around it.

My insurance company is finding all sorts of ways to keep from paying for for medications. They won't pay for drugs that are not FDA approved for a certain medical condition (Sjogren's). Another excuse they use is that they won't pay for many medications after one reaches 65 years of age. They seem to think 65 is the magic age that we can no longer get certain drugs no matter what. So, I am now paying for 2 of my medications out of pocket since the insurance company won't pay for them, even with appeals from the doctor.

[Tharrell]

Sharon, I have Blue Cross Blue Shield.

[gurs]

My doc just sent my rituxan order for approval, but has it listed under RA, which is what I thought she did before. diagnoses code M05.79
My main issues stem from my SS, but again, hard for them to prove you dont have RA because the labs dont always show. My doc said my daily steriod use can interfere with labs results as well. I have joint pain, but not much swelling, prob because of the steriods and motrin et.
Not sure why the docs cant put this through under RA. Let them prove you dont have it? I guess it depends on your doctor. My RH antibodies also normal range. I think she did it the same way 5 years ago when I had it. Im sure they would fight it if it was under
a SS diagnoses or zero negative. Is this approved for lupus I wonder?

Gursie

[Sharon]

So it sounds like nobody is getting these treatments "off-label".

Tharrell- Your insurance isn't much different from others I've come across. Unfortunately.

Jasper- I'm shocked your insurance doesn't believe 65+ patients deserve treatment! 
They really should be sued! How much do the Rituximab treatment cost you out of pocket?

Gurs- Sounds like you have a very caring rheumatologist. I'm in the position of having to prove to my insurance that I actually have seronegative RA because they are fighting me on it even though my rheumy wrote it. 

[Jasper]

Sharon .....

The insurance pays for the Rituximab because it is under my RA diagnosis.

They won't pay for 2 other drugs that I take, HRT in any form and Hydroxyzine Hydrochoride (for rash and itching). Those are both cheap drugs so I buy them out of pocket.

Rituximab is also off label for Lupus.

Sharon, did your Rhuematologist submit a pre-authorization letter to the ins. co. using the diagnostic code for RA?  If he used the diagnosis of RA when filing for a pre-auth, you should be approved for it because Rituximab is approved by the FDA for use in RA. If he failed to use RA as the diagnosis, then that would be where the hang up is. Also, some insurance companies do require a step regimen. You may have to try and fail at other drugs first before they will approve Rituximab.

[Sharon]

Jasper- At least your insuarnce is paying for the Rituximab.
My rheumatologist wants me to try a different biological first which is FDA approved for RA
since he doesn't think I'll respond favorably to infusions.
He filed using the RA diagnosis.
I already tried and failed all the drugs they require before approving biological.
The problem is that the insurance is questioning the diagnosis of RA and have been delaying the approval of the med for months already.

[Carolina]

I have a friend with zero negative RA who gets a great biological (I don't know which).

A lot depends on the insurance company, but ALSO a lot depends on the doctor's ability to describe your condition correctly in order to trigger the insurance company to pay.

I have an Immune Deficiency, and have IVIG every four weeks.  I took months to get the treatment approved.  The right doctor is key in many cases.

Hugs, Elaine

[Sharon]

Thanks Elaine, I'm sure you're correct about getting the right doctor to write convincingly.