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Since my last update, possibly good news regarding Sovaldi treatment and me!

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Posted 3/20/2014 4:52 AM (GMT 0)
DaveInTo, I am also from Canada and I am not sure if I am hearing you correctly when you say "but with Health Canada not approving the dual therapy of Sovaldi and a Ribavarin - only with Interferon - my hopes were shelved yet again. "

Well this might be interesting, I am prescribed Sovaldi and Ribavirin each day BUT it actually comes with Interferon in the prescription because apparently Ribavirin is not sold alone in Canada!

So what they first suggested to me was to *throw out* the Inteferon and when I said that would be a waste they said they would dispose of it. Before that happened the next time though I asked the pharmacist to donate my Interferon to the Hepatitis Support Clinic.

Anyways what I'm getting at is, are you saying Health Canada WILL pay for Sovaldi + Interferon? If thats the case I am pretty sure that Ribavirin comes INCLUDED in the packaging, at least in Canada and this is the way mine comes.

Possibly your doctor could write a prescription for Sovaldi + Interferon if you confirm with the pharmacist the the Interferon packaging comes with Ribavirin, I know through the pharmacy "Bioscript" in Western Canada it does come packaged together and I could not get Ribavirin without getting Interferon even if it meant throwing it away which I found really odd!

Hope this helps..
Posted 3/20/2014 10:21 AM (GMT 0)
Hi AllenM,

I should have been more specific in my previous post regarding Health Canada's approval of Sovaldi...

The us not one of packaging or what Health Canada is willing to pay for (It is not in the mandate of Health Canada to pay for any medications). The issue is what drug combinations or regimens that Health Canada is allowing Sovaldi to be prescribed with and for which type of HCV virus.

From Health Canada at

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2014_sovaldi_165043-eng.php#a1

"Sovaldi, an antiviral agent, was authorized for the treatment chronic hepatitis C virus (CHC) infection in adult patients with compensated liver disease, including cirrhosis, for (a) the treatment of genotype 1 and genotype 4 CHC infection in combination with pegylated interferon (PEG) and ribavirin (RBV); and for (b) the treatment of genotype 2 and genotype 3 CHC infection in combination with ribavirin (RBV)."

So, for us geno1's, we can only be prescribed Sovaldi with pegylated interferon and ribavarin.
Posted 3/20/2014 1:59 PM (GMT 0)
Understood, thanks.
Posted 3/20/2014 2:17 PM (GMT 0)
Hi Dave
I see no reason why Dr. Wong won't get you started on off label of Galexos(Olysio) and Sovaldi.
I am a not responder to interferon so I fully expect him to start me when I see him. I too am cirrhotic but still compensating.
I have 80% private coverage and hope to get copay assistance from Jannsen and Gilead. The nurse at TWH is sending me the hospital forms in the mail.
My next annual appointment is in May and although I would love to get started before, I can only imagine how busy they must be right now.
Best of luck! Stay in touch!
Posted 3/20/2014 8:41 PM (GMT 0)
Hi Tony,

Thanks for the quick response. I just spoke with Blue Cross and they have yet to make a decision on Galexos or Sovaldi at this point. They have had them both under review but have yet to make the call.

When I was looking at doing PegInf, Ribavirin, and Bocepriver I was advised by Blue Cross that the meds were 100% covered with no co-pay or deductible - except for the annual $20.00 deductible that they charge on the first prescription of each year.... I think I should be able to find a way to cover that!

I just hope that they make a de idiom (hopefully the correct one!) prior to May 1.

You are correct, the TWH Liver Clinic is a very busy place and I feel the same as yourself - no need to push them to be seen earlier as I am grateful enough to be under their care. The current wait time for a new referral is around 18 months. I have a great Gastro who I can visit for the more minor stuff. Best to leave Dr. W and his team to deal with the more urgent issues rather than to tax an already under resourced team.

Cheers, and best of luck!

D
Posted 3/20/2014 11:04 PM (GMT 0)
I take it Blue Cross is your wife's plan? They are a good company so I imagine they will cover it soon. I know SunLife and ManuLife do so it should just be a matter of time. Not too long I hope.
Wow 18 months!!! I had no idea??
Posted 3/28/2014 6:52 PM (GMT 0)
Just an update. Booked to see the nurse at TWH Liver Centre on Monday to begin treatment off label Sovaldi and Galexos 12 weeks no Ribavirin. As a 60 yo geno 1 ( not sure if I'm a or b) null responder with cirrhosis I have at least a 93% chance of success.
Wish me luck!
Posted 3/28/2014 7:02 PM (GMT 0)
Congratulations! Looking forward to even more good new from you!
Posted 3/28/2014 7:12 PM (GMT 0)
Hey Steve ..good journey! I take it VL <15 is considered undetectable? Am I correct?
Thanks :)
Posted 3/28/2014 7:34 PM (GMT 0)
Nope. It's not undetectable. It's detected, it's just below 15 and they can't pinpoint the number because the test isn't sensitive enough.
Hopefully Mondays test will be, though!
Posted 3/28/2014 7:56 PM (GMT 0)
WHAT DOES NEGATIVE OR "NOT DETECTED" MEAN?


The viral load can range from "not detected" to hundreds of millions. The meaning of "not detected" or "negative" differs, depending on the test used. In one lab, the detection limit for the *quantitative* HCV RNA test by *PCR* is 200 virus equivalents/ml (and with the *qualitative* test they can detect down to 10 virus equivalents/ml). The less expensive quantitative *bDNA* test has a detection limit of about 200,000 virus equivalents/ml. So it is less sensitive, but above its detection limit it is more accurate than the PCR test.

So, when you are "negative", maybe you have no Hepatitis C virus in your blood. But maybe also, you do have Hepatitis C virus in your blood, but the number of viruses is lower than the detection limit. {Example: If the less expensive quantitative *bDNA* has been used, and the detection limit is 200,000 virus equivalents/ml, any number less than this would register as "negative" or "not detected", when in fact, the viral load could be present, but less than this detection limit.} Your lab can tell you which testing measure is used, and your doctor can explain what it means in your case.

www.hepatitiscentral.com/hepatitis-c/what-is-viral-load.html

Post Edited By Moderator (MamaLama) : 3/28/2014 4:22:36 PM (GMT-6)

Posted 3/28/2014 7:57 PM (GMT 0)
I get very confused in this area I admit!
Posted 3/29/2014 2:11 AM (GMT 0)
>15 is the virus count(v/l). it is followed by the word detected or not detected. todays technology can quantify(v/l) down to>7, and the qualitative (detects active virus) down to 5 copies of virus. so >15 can be reactive.
barry
Posted 4/5/2014 5:09 PM (GMT 0)
Well two huge days yesterday and today. ManuLife is covering 80% and two hour long conference calls with Jannsen and then Gilead has them eating the copay(I am geno 1b and doing the off label Sofosbuvir and Olysio/Galexos). That is worth about $40,000! The agents at both Pharmas were very friendly and appreciative that I had everything in order to speed up the process.
I have only been working part time since 2010 thanks to the damage done by Interferon and that actually paid off today. My tax returns have been so measly that the copay assistance was never in question. I have my nest egg for retirement but they never asked about personal financial worth, just my income for the year. Never even considered my partner's income either which could have been problematic if they looked at household income.
Nurse was pleased that all went so quickly and the pharmacy will ship as soon as Jannsen gives them the copay details; I imagine early next week. I keep getting impatient with people, want things done right now but forget there are many others like me vying for time and attention.
Once the drugs are delivered I’m going to stockpile a week or so supply. I’ve been hearing of delivery supply problems and want to avoid the stress of potentially running out mid treatment.
Nurse was good with that. She also gave me my labs and they looks stable. Moderate MJ is no problem. She actually asked me if I was drinking at all ***?? I guess there are some that still do but that is a death wish for folks with cirrhosis.
Well that’s it for now! I’ve been thanking my lucky stars (they know who they are) for all this amazing good luck.
Posted 4/5/2014 5:21 PM (GMT 0)
I`ve have not had any supply problems with Sovaldi / Sobosbuvir. In fact Bioscript here in Ontario calls me about 10 before I run out to confirm shipment. I don`t think they will let you stockpile .Mine are given in a 28 day doses. I`m on my last 28.
Posted 4/5/2014 5:31 PM (GMT 0)
I already got the thumbs up from Toronto Western to delay my first day starting the drugs to one week after I receive my first delivery; have a 7 day bumper. The drug is in high demand and I have friends in the USA that have had some problems with their orders being filled. It's not just the delivery it's that actually demand can exceed inventory.
I went through this stress a few years ago with Pegasys (Interferon/Riba). It's an added stress worrying about missing doses due to availability. Not likely to happen but can.
The nurse simply schedules my ongoing blood work from the day I commence, not the day I receive the drugs.

Post Edited (TonyinTO) : 4/5/2014 11:44:38 AM (GMT-6)

Posted 4/5/2014 6:24 PM (GMT 0)
Tony, Welcome to the Dragon Slaying CLUB. My partner, Mike, is on the same combo and doing very well. If you look at our thread, you will see that by week 4 his Viral Load was at <15 UNDETECTED. Music to our ears. Big celebration going on at our house.

The celebration includes changing the smoke detector batteries, planting the box garden on the patio, and grocery shopping. And that was MIKE's share. He hasn't done this much in YEARS. He is better every single day.

Best to you,
Mama Lama in Florida where it is 86 F this afternoon.
Posted 4/5/2014 6:24 PM (GMT 0)
Tony, Welcome to the Dragon Slaying CLUB. My partner, Mike, is on the same combo and doing very well. If you look at our thread, you will see that by week 4 his Viral Load was at <15 UNDETECTED. Music to our ears. Big celebration going on at our house.

The celebration includes changing the smoke detector batteries, planting the box garden on the patio, and grocery shopping. And that was MIKE's share. He hasn't done this much in YEARS. He is better every single day.

Best to you,
Mama Lama in Florida where it is 86 F this afternoon.
Posted 4/5/2014 7:47 PM (GMT 0)
Interesting your on a 7 day.
I have my blood done every two weeks. Unfortunately here in Ontario only 1 or 2 VL`s are done not like in the US.
Some advise from someone who is almost finished.
Don`t look for sides. Kind of like waiting for the other shoe to drop.You`ll stress yourself out.People do get headaches and itches, gas, heartburn etc when their not taking these meds.
Also marking the days off on the calender doesn`t make it go any faster. You will know by how many pills you have left.
After a few weeks if you have no or little sides you can just cruise along.The regiment of taking the meds becomes more of a ho-hum thing. Don`t be to concerned about taking it exactly at the same time everyday. I mean if you sleep in one morning no big. Just space it out for your evening dose.
Good luck.
Posted 4/5/2014 7:53 PM (GMT 0)
Thanks Mama. I hadn't checked in here in a while and so happy Mike is doing well. Yes <15 is the viral response they want to see by week 4 excellent!! Keep up the good things in your life!
Posted 4/6/2014 1:46 AM (GMT 0)
944 thanks for the encouragement about absence of sides. As I'm starting in Spring and on them for the best part of the summer, I have some concerns about the photo sensitivity issue. Also living in Toronto and an avid bike rider. I'm hoping with sensible applications of sunscreen that will not be an issue for me.
Galexos has a warning about potential rashes caused by exposure to the sun.
Looking forward to starting.
Hey did you know that they are starting Phase III of Sofosbuvir and Simeprevir (Sovaldi/Olysio(Galexos)) picking up where the Cosmos II trials finished. ACtually looking at 8 week arms! Soon to the FDA so status can change from "Off Label" to and FDA/Health Canada approved therapy.
http://www.dddmag.com/news/2014/04/janssen-hep-c-combo-therapy-moves-phase-3
Posted 4/6/2014 2:11 AM (GMT 0)
Tony, we are on a the 12 week Sovaldi/Olysio...and it is going well.

Mike has bad skin problems, before the treatment, so we took lots of extra precautions with the sun...

Hat -- always
UV clothes -- he got some Columbia shirts with 50 or 60 protection.
Gloves--he got some UV tip-less light weight fishing gloves for driving.

You likey wear long sleeve shirts and gloves biking, and a hat, so it is your face you ahve to be careful of and legs.

We were at clinic this week and our Coordinator told us one of his clients was thinking he had olive skin and it would be a problem if he did his regular swim laps. NOT good. He is a MESS.

Re apply sun screen often.

And GOOD LUCK.

Mama Lama
Posted 4/6/2014 2:22 AM (GMT 0)
Thanks Mama. I will proceed with caution! I rarely sunburn,, even after long hours in the sun but having my body chemistry changed so radically doesn't mean it couldn't be a big problem.
Posted 4/7/2014 7:56 AM (GMT 0)
Hey guys. I am writing for my step daughter, She is on AISH. Assured Income for Severely Handicapped in Alberta. She was put on Zaxin 2 1/2 years ago by her GI specialist. At that time she got it from Salix in the states for next to nothing. She goes to get more of it and the pharmacist tells her, good news. It is now available in Canada. Bad news it is costing her over $600. per month and guess what AISH - Blue Cross will not cover it. Gone to politicians and ready to go on the news. She is 27, has diabetes, epilepsy, and this huge stomach issue which is solved by Zaxine! We are at our wits end!
Posted 4/7/2014 9:18 AM (GMT 0)
Chelseafan, very sorry to hear about your daughter. I am very aware of the AISH program and my younger brother receives AISH as he went blind after an accident at 18 and has been on it for over 20 years so I have seen how they can be in regards to funding.

I would very much consider contacting GlobalTV news or CTV/CBC in either Calgary or Edmonton to get the news out, Blue Cross also wasn't willing to help with medication I recently needed and luckily our insurance covered most of it.

I am thankful for everything the AISH program has done for my brother however he has also went through alot of the years and when I visit him I am thankful he has a small subsidized apartment in a apartment building for people with disabilities otherwise he would be screwed with average rents here being around $1000 for a 1 bedroom apartment and then food etc. he would be screwed.

I really hope both Blue Cross and AISH realize they have people in AB that need help who have next to nothing for income or no income at all that cannot even work and their family cannot afford the medications.

I wish you and your daughter the best of luck and I hope you can get things worked out.
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