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Posted 3/6/2014 11:12 PM (GMT 0)
Hi everyone, I'm a concerned wife and have a few questions. My husband was told today that he is now stage 3 with his hep C. His doctor recommends that he investigate the latest (and very expensive) drugs solvadi and galexos. My husband hasn't participated in any treatments prior to and was diagnosed 5 years ago. He likely contracted hep c through his work as a firefighter approx 10-14 years ago. We weren't expecting to hear the progression taking a quicker pace today so now looking at best options. He has Manulife coverage. The doctor said no one has started this combined treatment due to cost ($100,000) but would like to know through this forum if anyone has, side effects or anything else we need to know. Thank you in advance!!!
Posted 3/7/2014 12:48 AM (GMT 0)
It seems like alot of insurances are approving treatment in the US. You just need to talk with your insurance and try to get it covered. I know if they weigh short term vs. Long term costs they might cover it. You just need to fight for the coverage. I also think the companies making the meds offer vouchers and support.

Someone will chime in and offer input.
Posted 3/7/2014 2:45 AM (GMT 0)
Las21.

Welcome to the forum, though I am really sorry you have had to find us at all!

My Mike also has Hep C, but has been down the whole trail to End Stage and Transplant. After TP, his Hep C came raging back and is destroying his nice new liver.

He has stated one of the mega expensive Hep C oral treatments and is doing well.

There are several threads in here from Canadian Hep C patients. Look down the ones that have Sovaldi in the title and you will read about their funding.

And some of them may come in here to post...lots of folks are having GOOD luck getting the drugs.

Keep an eye on our threat too: Mike's Sovaldi and Olysio Treatment Log...we are focused more on sides that financing, but Mike got his through Florida Medicaid and thus hasn't had to rob any banks for the $100,000++++ (Just kidding about the banks.)

Good luck to you both,
Mama Lama
Posted 3/7/2014 12:19 PM (GMT 0)
Thank you for the prompt replies. I will continue reading the recent posts. I think I will have my husband join this forum. Likely help him more than myself. Thank you!!
Posted 3/7/2014 2:04 PM (GMT 0)
I live in Ontario and have Manulife ins. I am starting my 6th week ( 12 week prog.) of Sovaldi and Rib. I have geno 2 with stage 3 fib.
I am covered 100 %. Your Doctor is wrong, sort of. Things are changing by the minute re coverage in Ontario.
First contact Gilead Canada they will set you on the path. Some Canadians on this forum are receiving 80 % then the remaining covered another way.
Maybe some of our fellow Canadians can chime in. GP`s aren`t aware of whats really happening with this as it is so new. The specialists and Clinics are on it big time.
Read up on it here.
Good luck eh !
Posted 3/7/2014 6:57 PM (GMT 0)
Thank you944s. Do you mind if I ask how you are with the treatments as in any side effects (keeping in mind everyone is different of course)?
Posted 3/7/2014 9:22 PM (GMT 0)
No sides at all, well almost.
I work out 50 min every other day. Appetite is the same.My lab numbers are ok, blood down slightly no big.
Slight bit of brain fog mainly watching tv but nothing to severe. Maybe it`s the show I`m watching ?
Itch after a shower but I use a cream and it stops.
No nausea, headaches, rashes, joint pain or depression.
Most feel the meds working in a positive way just days after starting, I did as well.
Take my advise and contact Gilead asap. If you leave it to a family MD you could be delayed.
He should be turning you over to a clinic or specialist.No disrespect to your MD but...?
Posted 3/8/2014 3:47 PM (GMT 0)
Thank you 944s. My husband has geno 1. I've relayed to him your answers. Appreciate the insight...
Posted 3/8/2014 5:39 PM (GMT 0)
       hi las21,   the treatment "sovaldi and galexos" is a off label tx.  in the U.S. its called" sovaldi and olysio".  both drugs are approved txs with interferon and ribavirin, for genotype 1.  drs. in the US. have been prescribing sovaldi with olysio off label for tx of hard to cure, late stage, and interferon intolerant geno 1 patients. insurance companies will approve with a little push from your dr.  kudos to your dr for for his/her attempt to get this for you

     a couple of our members have started tx with this combo.  im sure they will pop in and give you there experience getting approved for this tx.  it seems that outside of the US, THESE PREMIUM PRICED DAAs are generic equivalents. galexos= sodium simeprivir.  how cool!!!

    side effects of this combo have not been studied, but appear to be baby aspirin compared to the approved txs for geno 1.  your stage 3 liver biopsy should help, along with your docs persistance.

best barry

Posted 3/8/2014 5:57 PM (GMT 0)
read and forward this to your dr.

hcvguidelines.org/full-report-view

one of our faithful got this tx with this report

also the cost in canada is significantly less . in the US. sovaldi can cost $1000.00 a day and olysio $600.00 a day
barry
Posted 3/8/2014 8:44 PM (GMT 0)
Las 21,

I hadn't paid attention to the different name in Canada for Olysio....so Mike is on the off label regimen for geno 1a, Interferon intollerent, hard to treat, advancing fibrosis less than 3 years post transplant. We cannot be more thankful. After 5 days he has no complaints. He switched his meds to afternoon with a snack and a nap and that is going well.

He is expreriencing some bad leg cramping...but that has been on and off for YEARS. Who knows if it is a med, electrolytes, or the Hep C. Time will tell.

Keep us posted.
ML
Posted 3/8/2014 10:01 PM (GMT 0)
Las21 I am from Canada and I'm on week 5 of the 12 week treatment with Sovaldi+Ribavirin and my insurance is SunLife Financial Canada - Public Service Health Care Plan.

My treatment thread can be found at the link below, I am being treated for Genotype 2 and the cost to our insurance was almost $100k however my insurance covered 80% and if I threw in $3000 they covered the other 20% also for a full 100% coverage.

My thread explains my ups and downs since February 6th when I started treatment, my side effects mostly nausea are a very small price to pay to know I will be cured by May.

My Sovaldi+Ribavirin treatment thread

www.healingwell.com/community/default.aspx?f=25&m=2984761
Posted 3/8/2014 10:09 PM (GMT 0)

944s said...
I live in Ontario and have Manulife ins. I am starting my 6th week ( 12 week prog.) of Sovaldi and Rib. I have geno 2 with stage 3 fib.
I am covered 100 %. Your Doctor is wrong, sort of. Things are changing by the minute re coverage in Ontario.
First contact Gilead Canada they will set you on the path. Some Canadians on this forum are receiving 80 % then the remaining covered another way.
Maybe some of our fellow Canadians can chime in. GP`s aren`t aware of whats really happening with this as it is so new. The specialists and Clinics are on it big time.
Read up on it here.
Good luck eh !

944s is correct, my specialist also told me on January 8th I wouldn't get Sovaldi for 2-3 years! The wife and I came home and she got on the computer and found the DIN# for Sovaldi and we gave to our insurance company who at first claimed they wouldn't cover it, two days later they said they would but didn't know how much they would cover.

Then I contacted Gilead and weeks of back and forth and less than 1 month later on February 5th the Sovaldi was at my door...my specialist had no clue at all what she was talking about and seriously believed in her mind we wouldn't get it for 2-3 years no matter what and she actually scheduled me to begin Peginteferon+Ribavirin treatments in May which I am so glad never happened.
Posted 3/10/2014 11:34 PM (GMT 0)
Doug here got my galexos (olysio) today and my sovaldi last week. I think my bile is working poorly and causing pain bloating and gas causing way to many bathroom visits. very uncomfortable. I have been dealing with this for along time and its at its worst. no more pain free days for a long time now. if anyone is dealing with the same, any advise would be much appreciated. my drug plan through work is capped off at 25000. with that and momentum and my clinic going up to bat for me I was able to get the treatment. talked to my nurse today and told her how I was feeling and decided to give it a couple of days before I start. I hope this intestinal storm gives me a break. it seams no one has any answers on this one.


did 12 month interferon ribvin 5 years ago and failed. what a ride. geno 1a stage4 its gonna be a long ride back but we can do it. good luck to all
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