Just so frustrated! *Vent*

B

bethylove

Guest
For over the past month(s) I've been calmly twiddling my thumbs waiting on news about kayldeco. I DO have the g551D mutation and filled out my paperwork in febuary.

A call from Vertex and they sent off the script not 100% sure of what my insurance would require (i.e. prior authorization, appeal, etc. ) Well, an appeal was neccessary since they didn't want to cover it. Appeal went through. Then the pharmacy calls to tell me they're waiting on a prior authorization. (Fast forward two weeks) And the pharmacy calls again to inform me there's another problem and that my insurance company won't cover it for at LEAST 6 months. They claim since it's not on their formulary it's not covered.

GIANT UGH! I feel so frustrated right now. ESPECIALLY since I see other people without the mutation who have been on this drug for over three weeks. I understand there's no way to know how this drug affects all the mutations (there are so many of them!) but still! To come here and see that all because of my insurance I'm stuck wihtout the drug - for what they tell me months!- while other people are just fiddling around with it in the hopes that it may do something. . . it's frustrating.
I feel that ever since I've turned 18 its been one ordeal or the next with insurance companies. Don't get me wrong. I LOVE THEM. I'd rather go through this ten fold than have to pay the 300k price tag of the new drug. But that doesn't make it any less frustrating.
I can't be the only person under Blue cross blue shield of RI who has this mutation and is eligible for this drug. And of course its not on the formulary you twits it JUST got approved. BLAH. I hate the fact that paper pushers are playing god with people's lives here. SO FRUSTRATED!

End of vent.
 

Ratatosk

Administrator
Staff member
I've wondered if this might happen. We have BCBS in a different state and two years ago we had to switch DS enzymes to Creon, because Pancreaze wasn't on their formulary list. Nor was zenpep. Pancreaze STILL isn't. A friend of mine whose daughter had similar issues with Pulmozyme is G511D and is supposed to be put on kalydeco this summer and it wouldn't surprise me one bit if they don't get the run around.

IMO, might be wise to get an attorney. We had to do this when DS was a newborn and BCBS refused to cover synagis shots (RSV) for infants wcf.
 

Printer

Active member
One suggestion. Contact the Division of Insurance for the Stare of RI. Tell them what you have writted above. Good luck, Bill
 

missT

Member
Hi, I have Blue Cross/Blue shield too. I am one of the "fiddling around" people. I just wanted to say--we are all in the same boat--we all have CF--and all of us are DESPERATE for ANYTHING that will give us relief. I dont have the G551D mutation but I also feel your frustration. We all want the magic bullet (as my Dr calls it) I really pray you get the drug.
 
C

cindylou

Guest
Ugh, I'm SO sorry to hear about this!

I recommend getting in touch with Beth Sufian or the CF legal hotline (their info is on the CFF page). They were very helpful to me in getting insurance stuff sorted out when I got married.

Also, have you talked to your doctor/clinic about this? Sometimes if the doctor calls the insurance company personally and really leans on them, it helps.

I had Blue Cross of Idaho for two years and honestly, it was the best insurance I've ever had! They covered everything (except Nexxium, for whatever reason) without a whisper. We moved before Kalydeco got approved, though, so I'm not sure how they would have handled that one.... I'm so frustrated for you that you're running into such problems!!!
 
C

cindylou

Guest
Oh, another thing - do you have a case manager at BC? If not, I would call and ask for them and start talking to them personally instead of regular customer service line people.
 
B

bethylove

Guest
Thanks for listening and all the advice. People have finally gotten back with me and it's just a waiting game at this point to see if appeals will be accepts or denied.
 

Ratatosk

Administrator
Staff member
IMO, I'd look at getting an attorney or contacting Beth Suffian. We went round and round with BCBS in our state over the synagis shots --- appeals from our doctor, letters from us and got no where. Then a friend of the family who's an attorney faxed over a letter pretty much stating the same things we and the doctors did and within MINUTES we had approval.
 
Top