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Avatar universal

My trial has been cancelled.

I just got called by the study nurse.  The trial I was in was cancelled because 3 patients had elevated bilirubins.  For now, the plan is for me to stay on SOC until my follow-up appt. next Wed.  Dr. mentioned that he'd like for me to consider rolling over onto Boceprevir if I can find a way to get it paid for, since I've already been on the SOC for 9 wks.  I will be unblinded on my viral loads and will find out if I was getting the placebo or the study drug; but that information wasn't available when she just called.  My brain is feeling confused and honestly, I don't even know where to start.  I have insurance, but these drugs aren't on their formulary and it's a sh*tty insurance because it's Medicare Advantage.  So, I'm not sure if the drug company will enable me to have any patient assistance.  My husband started a new job and was adding me to his insurance, but he doesn't have any paperwork or card on that yet and I don't have any idea whether it's in effect, or if it will even cover such expensive drugs right out of the shoot.  Part of me feels like giving up and saying that's it, I've had it, no more I quit.  Because I'm just so tired of trying to get SVR.  But, the other fighter part of me, says, what do I have to lose by trying?  I don't have any desire to wait another 5 yrs for all oral treatments, so that's not even on my radar screen.  I've been doing treatments on and off since 1997 and I am wanting to get on with my life.  I just wanted to let my friends here know what I found out.  Susan400
73 Responses
179856 tn?1333550962
I'm sorry Susan I responded to your email earlier and all I can say is that I am just going to pray you are already UND, didn't have the bilirubin problem and were not on the placebo so it's all a moot point.   You deserve it so much.  ♥
Avatar universal
Sorry susan, why don't you call mercks patient asst. site and see? Heres part of what is said there, maybe they will work something out......Good luck

At Merck we realize that sometimes exceptions need to be made based on the patient's individual circumstances. If you do not meet the prescription drug coverage criteria, your income meets the program criteria, and there are special circumstances of financial and medical hardship that apply to your situation, you can request that an exception be made for you
Avatar universal
I'm so sorry you had this news today. I do know the INF and RIBA were not on my insurance formulary either but they did have a process in place for requests outside of their formulary and sent me a letter of approval for a year's treatment as soon as my doctor sent in the paperwork. Don't stop trying.
Avatar universal
I'm so sorry about this news
You are one of the strongest people I have ever known so I know you'll find a way.

Good luck Susan,
Mike
Avatar universal
Susan,  I was 8 weeks into a study and switched over to Bocaprevir too, it has been pretty painless.   I highly recommend this path, do whatever you can to figure out your husbands insurance and drug assistance that you can.  You can do this!  
Avatar universal
Hi Susan,
Sorry to hear about the trial.  It sounds like your doctor is definitely in your corner.  Perhaps between him and the patient assistance site you can get the approvals and financial assistance needed.  I hope this works for you - I am on the path for a Gilead trial as I am a null responder also.  We are all sending our thoughts.
jsf52
Avatar universal
bummer - but, h*ll, it's just another detour on the road, there's no doubt about your getting  to svr  in the end. Keeping up the ifn while sorting out what to do next won't waste your investment in a lead-in. Rollover to boce seems a good option. Also, for quad, you don't have to wait for an all pill  no-ifn regime, only for one more drug to add to the current triple. bms790052 and r7128 would seem the front-runners, but as far as I know neither has gotten to phase 3 yet,
29837 tn?1414538248
I'm going to work on something for you...

Magnum
29837 tn?1414538248
Read your messages. I think I have some great news for you!

Mag
Avatar universal
My news keeps on getting better - NOT!  I just found out that for the last 9 wks, I've been only on SOC, drew placebo arm.  For crying out loud, will I EVER get a break?  I'm sorry but I just need to complain some, I am so wanting to put on a pair of boxing gloves and wail at a fr*gging punching bag, you know?   Susan400

Magnum, thanks for the info, I'll PM you.
Avatar universal
That's a nice thought, but 90% of the clinical trials will not take a person who has been exposed to a PI.    It took me 3 years to finally get a trial and it was this one.  

Susan400
223152 tn?1346981971
Susan, you have more bad luck than anyone I can think of.  If there is a good side, it may be that you have been on SOC and not exposed to an agent that runs up your bilirubin.

I hope you can roll into Boceprevir.

frijole
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