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

By the way, as an aside, isn't the price of a transplant about $500,000.00? I'm sure I read that somewhere.

Allen if she calls me back, I promise to pursue it as far as we can. Will let you know.

Just another small update and some advice for anybody contacting Gilead, when you first contact them they will tell you they need your info and the best number to get ahold of you and when you ask when they will call back they will probably reply "In about 24-48 hours..." and in my case they never did so I called them back.

When you call back they will try the same thing, instead what you do this time is tell them "I have limited time to sit and wait for phone calls while I get sicker and damage my liver and cannot discuss this while working and NEED to speak to a caseworker now!", remind them you called once and they did not reply and you want to speak with a caseworker now or you will hold...amazingly a caseworker will all of a sudden become free if you offer to "Wait on hold no matter how long it takes as you need the medicine asap"

With that all said and done the ONLY complication I ran into with this so far is because I am Genotype 2 I will not need Peg-interferon and my prescription is for Sovaldi(400mg) + Ribvirin(600mg) but the problem is you cannot get Ribvirin here in a prescription without getting the Peg-interferon.

After some back and forth and me confirming with the pharmacy that is true and relaying that to Gilead and then my specialist speaking with Gilead this morning I am told the prescription company filling the scripts called "Bioscript"(bioscript.ca) , they will separate the Ribvirin for me from the Peg-interferon packaging. Initially Gilead has made a suggestion more than once that I "Just throw it out" and when I said thats alot of money to just throw away and couldn't someone use that medicine? They then came up with the plan to work with Bioscript to separate it and they tell me it will be disposed of and I need not worry as I will ONLY be charged the $3000 out of pocket for full coverage...something still doesn't sound right about all this to me but either way I just want my prescription and they can deal with my insurance plan.

I was told yesterday I should still have my Sovaldi and Ribvirin by the end of this week and will be calling within the hour to confirm with Gilead or Bioscript when they can get it delivered to me.

I'm both excited and somewhat scared, things have progressed so quickly! Trust me the wife and I have been on everybody's ass to return calls and follow up and I didn't give up!

I'll update you all again soon if I hear more...

Hello
I'm so pleased to find this discussion about new drugs and Canadian availability and possible coverage.
I have had HCV geno1 for over 40 years, failed SOC four years ago, but still a compensating cirrhotic, 60 years old.
I've been "on hold " with my family Dr. and the Toronto Western Liver Centre ever since. I've been watching carefully all the developments with ABBVIE and Gilead for some time and many of my American support group friends are already on Sovaldi and having great results, some with IFN and others only on Sovaldi and Ribavirin.
I'm very proactive and have been hounding my Pharmacist for any "news". So far nothing until finding this thread. I have private health with Manulife.
Thank you AllenM for the DIN#. I will give her a call again this morning with that information.
Is anyone else here with Manulife and have any comments?
Thanks and good luck to everyone here!

Update: I just got off the phone with the Pharmacist at Shoppers Drugmart and she will be checking things out. She did tell me that Shoppers Drugmart also has a patient assistance program to help with financing ..something to be aware of!

Post Edited (TonyinTO) : 2/12/2014 7:04:41 AM (GMT-7)

Hello Tony, I wish you the best of luck in getting prescribed Sovaldi and also being covered by your insurance. I have not heard anybody mention Manulife but if you call them directly and give them the DIN# they should be able to tell you over the phone if its covered and for what amount...mention to them other insurance providers like Sunlife Financial are covering it so why aren't they?

I think the more other insurance providers see others covering it they will really have no choice to also offer coverage or risk losing customers who go elsewhere for insurance.

Good luck!

Thank you for the welcome and all your awesome posts AllenM! Yes I will check in daily and read and share all that I can!

HI zoarie
Wishing you a smooth journey and every success! Gilead actually paid over eleven billion dollars to Pharmasset for the original molecule then add to that all the R&D, marketing, insurance and on and on..Very expensive but now worries they will make a ton of money in no time!
http://www.reuters.com/article/2011/11/21/us-gilead-pharmasset-idUSTRE7AK0XU20111121

Hi mama and tony,
Thanks tony for the clarification. That is more like what i was told, i just can't remember a darn thing. And i am glad u joined. This is a fab place for keeping current and in touch with people that really know how this is.
Mama, i will be thinking of u and mike tomorrow, and sending special energy. Am saying prayers to all the gods, or any that will listen.
Thanks for writing,
Z

well I'd first like to say hello to everyone and thanks to the people responsible for this sight. I found this sight trying to find info on the sovaldi drug, i read a couple of posts and thought there is some good info shared here and hope to do the same. my is doug I'm a 51 year old male and live in Toronto ont Canada.

well I'd like to share a bit of history with you all. about 11 years ago I started felling rundown and a little off and was getting this lower right inflammation bloating and a lot of discomfort. after 2 years of countless tests and ibs drugs I went to the hospital one day feeling really lousy they did a ct scan and I was told your appendix look inflamed and this the cause of your problems. ooook who was I to argue. they took them out and about 3weeks later same deal discomfort pain. so after more ibs drugs and no change a doctor did more blood tests noticed my iron levels were fluctuating up and down and sent in for a hepc test, well it was confirmed Toronto western hepc geno1. did 12 months of interferon with ribavirin 4 months past the time they told me when I started due to a high viral count and got a phone call one day from my doc saying stop taking the drugs your virus came back. ya I was pretty upset, I think I got all the side effects and made up a few more during this treatment. it knock the crap out of me. oh they did a biopsy and I was diagnoust with cirrhosis. drank my fair share of beer when I was young but didn't play with the hard stuff to much. I'm sure the hepc did more damage then the beer did, but I'm sure it didn't help. now I'm not ranting but I'm 51 years old and I feel there wasn't enough information to the public on this disease or blood to blood viruses until the aids virus came to light, even then I think hepc kinda took a back seat. I've never had a blood transfusion used needles or have any tattoos. but and I'm not saying by anymeans this is where I got exposed to it but I worked in the machining steel industry for 30 years and pretty much all of us had pic kits sharpened tweezers pins ect in there tool boxes to remove metal slivers that you got quite often. now after reading that the virus can survive for up to 4 days on a object under the right conditions and if your tool box wasn't close by or the persons you were working with used your stuff hmmm really kind of made me think how uneducated we all were and some still are. I think they only started to put latex gloves in the first aid kits as of about 15 years ago for the first aid guys.


ok enough of that lol I was looking around the net for info on the sovaldi drug and came across this sight and noticed I have a fellow clinic brother tony in to, ill have to keep an eye out for any new posts he writes lol. because of liver cancer they do a ultra sound and a consult with my doc every 6 months, I was there about 3 weeks ago and was told of the drug solvaldi taking with olysio for 12 weeks 2 pills a day with minimal side effects and about a 80% or better cure rate. wow I thought what a dream. they asked me about coverage and told me its going to cost about 70,000 oh my god and the drug was on the market for less than a month. so I got on the phone at the clinic I have group insurance from work and they told me ya your covered on both drugs. yeeha. 2 days later I contacted momentum the drug supply for gilead and we had a conference call with the insurance company and was told about a 25000 cap. wish they told me that on the first call. so momentum said I could talk to my work about increasing my drug cap. I told him I haven't worked for sometime and really didn't want expose my situation to them, he said that's fine and didn't seem concered at all. so I phoned anyway wanting to get this moving and the insurance company told my work that everyone on the plan would have to be increased' no individual changes. well with several divisions and over 500 people on the plan that wasn't happening. so i'm at the mercy of the Ontario government I guess and they apparently don't like to give up any info as in if when or where. my nurse told me today that we are waiting on trillium that's an Ontario program that will help low income people after they have exhausted any insurance. I also came across something called eap the exceptional access program. not sure if that's the same as the trillium or not. also seen a post here about someone appealing directly to gilead. you would think that momentum would mention that but then again it might be cutting into there chunk of change. I think we need someone that works on the inside lol. i'll keep looking for any info here and will share anything that might help. thanks for hearing me out dougintoont

BTW , here is one such case of a woman in Ottawa, a newspaper article where you will find a link to a petition to sign. Please pass it around! You may have to copy paste the internet address.
http://www.ottawacitizen.com/health/hepatitis+drugs+funded+late+Ottawa+woman/9514730/story.html

WOW 944's that's awesome! I have a 20% copay with Manulife so great you are getting 100% coverage.
I'm going to call the Toronto Western Liver Centre now ans see what they say!
Thank you!!!!

BTW the DIN for these drugs in Canada are:
Sovaldi 2418355
Galexus 2416441
Good luck to all in The Great White North!

Thank you 944!
I just got off the phone with an operator at ManuLife and yes VERY STRESSFULL!! lol But she was very pleasant and told me she will be my personal case manager, that both drugs are covered but she needs to investigate the protocol for processing. I will hear back next week.
The nurse at Toronto Western told me there are copay assistance programs.
I cannot thank you enough!
I'm a 60 year old cirrhotic man and I feel like crying I'm so excited!
You have made my day,my week,my month,my year with your information sharing ..thank you!!!!
I will keep you posted :)