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Insurance Hiked Co-pay for Raptiva
from Jane J.

Hi Ed:  This is Jane J. again.  I don't know what I was thinking when I wrote last year saying my P was gone after 12 weeks on Raptiva!  I am the eternal optimist!  After being off for 4 months and having my P return, I went back on and have been on ever since. 

I have been fighting my insurance company since last August because they said instead of $40 for a 3 month supply they needed to increase it to $150 PER MONTH!  After talking to "people in charge" they agreed to grandfather me in with the old price but they can't send 3 months at a time like before. 

So I sat on pins and needles every month to see if I'd get my supply on time without skipping a week or two in between.  That happened often.  I was ON for a month and OFF for a month, ON for a month, OFF for a month.  My Raptiva didn't have a chance to work.  They would call to schedule delivery and when the day came, it didn't come.  And they would have to reschedule.  I finally told them DON'T YOU UNDERSTAND THAT PSORIASIS IS AGGRAVATED BY STRESS?  YOU PEOPLE ARE ADDING TO MY PROBLEM.

Eventually, they got things worked out.  So far, since January, I've been taking it without interruption. (Except for a trip out of town for which I forgot to take it with me, so missed my scheduled dose by 3 days.)  I'm still learning — you can't miss a dose!  You have to take it on the same day every week or you have flair ups.  That's what I'm dealing with right now; but I’m almost back on track. 

When they quit allowing me the old price I don't know what I'll do.  $150 is a lot of money a month but as long as it works I guess I'm stuck.

I hope it's still working for you. -Jane J.

*****

Ed’s Response:  Thanks for sending the update, Jane.  That price hike by the insurance company is awful!  Have you shared all this information with the National Psoriasis Foundation?  If you haven't, please consider doing so.  They advocate against detrimental insurance practices on behalf of all of us, but they need real cases with which to work.

Click here for a story about a recent Foundation victory. 

I've switched to Humira (another biologic) for the sake of my psoriatic arthritis — and my skin is missing my Raptiva!  Seems like I can have one or the other, healthy joints or healthy skin, but not both.  I know there's some experimentation going on with using multiple biologics (what I've heard came from outside the U.S.).  But both my rheumy and my derm get awful expressions on their faces when I suggest something like that for me.  We'll see.

I've heard from others who have had either Raptiva or Humira combined with methotrexate (MTX) and this is another possibility for me.  It's ironic, though, that I waited so long for the biologics so I could STOP taking MTX or cyclosporine. 

We must look at it this way:  Our agonies over all these options should be something we cherish — just a decade ago we didn't have these options at all. 

Stay in touch!  -Ed

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