Hep C Discussion Forum

Cinnamon Girl · Guru

I'm shaking as I type this! It's finally here in BC!

mallani · Guru

Hi Jaded,

Congrats. All will be well! Carry on. Cheers.

Jaded · Senior Member

Well...3 months to the day I posted this thread and became aware of the the coverage for treatment...I am overjoyed to say that my 1st viral load test (4th week of 24 weeks TX) came in today HCV NOT DETECTED!!!! Hard to believe after 19 years of waiting to be able to say it...that day is here and that exactly 3 months ago I was wondering if I'd be lucky enough to be selected to receive treatment. Fortunately I became aware of the changes on the day it became available to apply and got an early start. Thanks to God and those in heaven who answered my prayers.

Brian1412 · Guru

Good luck man. This med is spectacular and works fast. I had zero problems or effects

This will finish. The hep for you..

Peace

Brian1412 · Guru

Dr einhorn the great oncologist does the same thing.even people and drs he doesnt know anywhere in the world. Thats awesome to me. Oh yes he never charges them

Barnacle · Senior Member

Jaded I was on the Sov/Oly/Rib treatment but I felt an improvement just a few days after starting Tx. I reported this to my nurse who was amazed since I was the first to get this treatement she was more used to hearing how horrible patients feel after starting.
Hang in there this stuff really works and I had very few side effects during treatment. It's been over a year now...

Jaded · Senior Member

Thx PL...tonight will take the last pill of the 1st week...23 more to go. No side effects so far at all...and I don't know if it's physiological but I have been feeling better everyday...I especially feel great today. I have much better energy and have not needed my evening naps the last few day.

Gracie...no...no Riba...it was not even mentioned. I have not heard of this protocol with Harvoni. To my knowledge Harvoni is all that is needed. At the time I when I was a non-responder I did not have cirrhosis. The nurse said so far of the 150 people treated with Harvoni there have been no fails...so I like those odds. I was pretty overwhelmed with a lot of of feelings but once I started things have settled down. I'm am finally feeling optimistic about the future again and starting to feel like my old self instead of damaged goods. I mean...I find myself holding my head up.

-- Edited by Jaded on Thursday 21st of May 2015 05:11:22 AM

-- Edited by Jaded on Thursday 21st of May 2015 05:12:09 AM

Gracie · Guru

I'm another Canadian hoping to get on the Harvoni train. Did they offer you RIBA as well? Heard it increases the odds for cirrhotic prior non responders. I go this Friday to see the gastro doc. I'm nervous and excited And apprehensive and scared all at once. Weird feelings.

PL · Member

I'm excited for you! Glad to hear that BC came to the plate. I'm Canadian as well. :) I wish you the best of luck and strength as you go through this treatment and look forward to your coming posts!

Jaded · Senior Member

Had my nurse's consultation at 3 pm and picked up my script at the pharmacy right after. I will take my 1st pill in 3 1/2 hours. I decided to go with 11 pm as my treatment time so I can sleep off any side effects. I've been counting down the days...and here we are!

Tig · Admin

Congratulations Jaded! That's wonderful news and I'm sure it's a real relief to know that all your i's were dotted and the t's were crossed, ensuring all was approved. The wait to start may take forever but it'll be upon you soon enough. You're going to do well and your chances of success are better than excellent. I can assure you that in my opinion, better than excellent is pretty darn good! Get ready to slay that Dragon....

Jaded · Senior Member

I start on May 14th. I'm required to have a consultation with the nurse 1st and they will all be away next week on a conference and can't begin treatment without that consultation. Everything is all set up though and rubber stamped with BC Pharmacare and Gilead Momentum. In my case there is no deductible and it will be all paid for by Pharmacare...Gilead won't send the drugs to the pharmacy until they have been assured they will be paid by someone and they receive the prescription from the Dr...then they send the drugs and prescription to the pharmacy of your choice...and now this has all been done. I've waited this long without knowing whether the day would ever come...and come before it's to late to matter so I can wait another 13 days no problem. I had a good nights sleep last night...the last few days I've had more trouble than usual sleeping...today I feel rested and calmer. I'm ready to go.

-- Edited by Jaded on Saturday 18th of April 2015 10:17:49 AM

-- Edited by Jaded on Saturday 18th of April 2015 10:21:42 AM

Stormy · Veteran Member

Congratulations!!. We really are going to win this battle!

Jaded · Senior Member

Thx everyone...pretty overwhelming. It took 3 weeks from the day I learned of the coverage for approval plus another 19 years of dealing with this dragon. i appreciate all the good words! I'll turn 60 July 2nd...I'm hoping for a really great birthday this year with big news!

Paul B · Senior Member

mallani wrote:
Great news.
You were wise to give 48 weeks of Victrelis triple a miss.
Best of luck.

Congratulatons and good luck moving forward. + 1 for what Mal said !!

Tess · Senior Member

Congrats Jaded!!! You took the right steps for you, and now you have the best shot yet at stomping the dragon. And it seems like your good doctor has got your back! Best of luck!!! biggrin

- Tess

Tig · Admin

Congratulations Jaded! That's wonderful news and Malcolm is so right, you were wise to avoid 48 weeks of anything, especially the Int/RIBA/Vic triple. Harvoni is a great way to go. Get ready to board the Train, it's about to leave the station! Good luck...

mallani · Guru

Great news.

You were wise to give 48 weeks of Victrelis triple a miss.

Best of luck.

Jaded · Senior Member

I have just been informed that I got approved for 24 weeks of Harvoni!!!! YIPPEEE!!!! I had to take another blood test (viral load) and wait a bit over a week for the results (Easter Holidays so it took longer) then my Dr submitted the application and 3 days later I have been informed that BC Pharmacare will pick up the cost less the deductible which Gilead Momentum will cover...I'm not sure yet what percent that is but I don't have to pay anything.

So I will begin treatment any day. Now what I need is for Harvoni to work for me.

I'm so glad I waited...my Dr offered the Interferon/Ribaviran and Boceprevir treatment to me last year which was covered by BC Pharmacare but I refused it because I didn't like the success rate stats compared to the new treatments...not to mention after 70 weeks of interferon I had enough of that.

Soooooooooo...a new chapter begins.

Jaded · Senior Member

Thx mallani...

I just walked in door after my late night dog walk. After I last posted here I sent an email to my Dr. to ask what the chances are of me being one of the 1500 people selected to be treated. It was midnight here as I was approaching the door and I was thinking how I once sent my Dr an email at midnight on a Saturday night expecting or hoping he would reply on Monday or perhaps Tuesday or Wednesday. To my disbelief he replied 5 mins later. I was thinking that he has to be the only Dr in the world who would reply to a non-emergency email from a patient immediately on a Saturday night. I then thought...well it's midnight...and before I could close the front door I heard my email alert sound. I will post the correspondence.

Hi Dr XXXXXXXXXXX

I will be seeing you on Monday but I just wanted to ask you a question.
I just became aware of the change in coverage of treatment by pharmacare
for Hep C treatments and see that they will only treat 1500 people in
the 1st year...which is not a lot. I was wondering what my chances are
of being one of them and Monday will be an eternity away to ask you
because it is on my mind now obsessively.

XXXXX

his reply was...

hi XXXXXX!

although the ministry expects that about 1500 ppl will be treated, they have not put a cap on this. and in fact, 1500 ppl for BC sadly is a lot when you consider how few people have been traditionally treated in canada per year.

regardless, you're good - not to worry. see you on monday!

XX

Soooooo...I'm feeling better about this now. I very quickly lessened my expectations after doing a little math and was beginning to think this might still take a few years...but his email suggests things look good.

-- Edited by Jaded on Wednesday 25th of March 2015 07:23:02 AM

-- Edited by Jaded on Wednesday 25th of March 2015 07:29:42 AM

mallani · Guru

Well done Canada.

Jaded, hope you win the lottery. Cheers.

-- Edited by mallani on Wednesday 25th of March 2015 02:19:00 AM

Jaded · Senior Member

I'm kind of in a state of shock. Shortly after I posted this I went for a walk with my dog (I just came back). All of the sudden I was overwhelmed and I started running...something I have done only on a few occasions over the last 15 years because of a knee problem that I've recently come to attribute to the 70 weeks of interferon I did about 18-19 years ago (seems to finally have resolved). That short run was a kind of release I think (my dog was running sideways pulling on the leash looking at me and trying to get me to go faster..LOL)

Rubye...I was told last time I saw my Dr that yes they would prioritize treatment and that because I have cirrhosis I would likely be one of the 1st to receive it. I've had such terrible fatigue lately and really was beginning to wonder if this cure was going to come too late for me. I usually know better than to allow myself to get too excited before anything is finalized but I can't help it. As you said they will only treat 1500 in the 1st year...I don't know what my odds are of being one of them even though I have cirrhosis. It says 80,000 people here are infected with a 1/3rd being unaware...so that leaves about 50,000 which means maybe 3% will get treated this year overall. I don't know what percentage fall into the the cirrhotic category...roughly 15% (may7500 people) I guess so that leaves 20% of those who get lucky the 1st year (my guess...1 out of 5 cirrhotics maybe...who knows). I really can't let myself get to exited yet and winning the lottery was probably a premature reaction to the news.

Swimmerchic...congratulations with your success...great news and thanks for your reply.

Tig56...thanks for saying so.

I still have to be approved and then hope for good results but at least I have something to finally feel positive about.

-- Edited by Jaded on Wednesday 25th of March 2015 01:06:18 AM

-- Edited by Jaded on Wednesday 25th of March 2015 01:30:17 AM

-- Edited by Jaded on Wednesday 25th of March 2015 01:51:37 AM

Tig · Admin

Outstanding news indeed!!! Thanks Jaded, I'm so glad Canada has come through for those with this disease. Big WOOT!

Tig

SwimmerChic · Member

Congratulations! Great news. I remember the night specialty pharmacy told me I was approved for 8 weeks of Harvoni. I cried all the way through supper. At a restaurant. I have 9 pills left and a 2nd lab confirming my NORMAL 4 week labs. It's a great train ride! biggrin

Rubye · Senior Member

This is indeed very good news. I wonder if they will stipulate who gets treated like here in the U.S. where you have to have cirrhosis to obtain treatment. That is if you receive Medicaid. 1500 people sounds like a pretty small number but maybe you don't have the huge Hep C population we have here in the states. Anyway, I'm happy for you.

Jaded · Senior Member

http://www2.news.gov.bc.ca/news_releases_2013-2017/2015HLTH0014-000386.htm

NEWS RELEASE
For Immediate Release 2015HLTH0014-000386 March 23, 2015	Ministry of Health
B.C covers two curative hepatitis C drugs
VICTORIA British Columbia is providing public drug plan coverage of two new, often curative, hepatitis C drugs effective March 24, 2015, announced Minister of Health Terry Lake today. People with hepatitis C will be able to apply tomorrow for coverage under B.C.s PharmaCare program of Sovaldi (sofosbuvir) and Harvoni (ledipasvir and sofosbuvir). These new medications cure about 90% or more of people treated; are easier to take; involve a much shorter course of treatment; and have fewer side effects than older drugs. These two new drugs can utterly change the lives of people with hepatitis C for the better, said B.C. Health Minister Terry Lake. These drugs represent a significant advance in the treatment of chronic hepatitis C, and more British Columbians affected by this virus now have significantly better odds of becoming free of the disease. British Columbia and Ontario jointly led negotiations with the drugs manufacturer through the pan-Canadian Pharmaceutical Alliance (pCPA). The alliances process allows participating provinces and territories to leverage their collective buying power and negotiate better prices for new drugs. This is another example of the power of our collective action, when we choose to work as one, said Ontario Minister of Health and Long-Term Care Dr. Eric Hoskins. By working collectively to leverage our joint buying-power, we have been able to expand access for patients in a responsible way that makes our health-care system more sustainable. Each participating jurisdiction can choose whether to accept the deal and cover the drugs on their public drug plans. Prices and terms for this negotiation are confidential. Sovaldi treats hepatitis C genotypes 1, 2, and 3, and was approved for sale by Health Canada in late 2013. Harvoni treats genotype 1, and was approved for sale in late 2014. Many older hepatitis C treatments often have difficult side effects; one such treatment, peginterferon, is injected under the skin as well. Older drugs also have various cure rates for those able to tolerate the side effects. Both Harvoni and Sovaldi are swallowed as a pill, and have far fewer side effects. This is incredibly welcome news for people living with hepatitis C in B.C. and their families, said Daryl Luster, president of the board of the Pacific Hepatitis C Network. As a person who treated with interferon and ribavirin, I know how difficult those older therapies are. The hepatitis C community is excitedly anticipating the change these new game-changing medications will bring to thousands of people living with hepatitis C in British Columbia. PharmaCare will cover Sovaldi or Harvoni for people who meet certain criteria. For example, people who have never before been treated for hepatitis C or who have failed treatment with older drugs may be eligible for coverage. The B.C. Ministry of Health expects to cover treatment for about 1,500 people in the first year. PharmaCare will monitor and evaluate the effectiveness of the drugs and the outcomes for patients as part of its coverage program. These publically funded drugs will bring the hepatitis C cure to infected British Columbians, improve their health, and prevent needless deaths from liver disease, said Dr. Mel Krajden, medical head, hepatitis for the B.C. Centre for Disease Control and professor at the Department of Pathology and Laboratory Medicine at the University of British Columbia. This begins the path to eliminate hepatitis C in British Columbia. In order to fund these drugs and other new therapies, the ministry will continue its overall efforts to lower drug costs for PharmaCare. Some recent examples include: the recent single-sourcing of seven generic drugs; participation in the pan-Canadian price initiative, which has brought ten common generic drugs to 18% of the brand name price; and PharmaCare coverage changes for DPP-4 inhibitor diabetes drugs. These efforts have saved tens of millions of dollars for PharmaCare. Sovaldi and Harvoni are the second and third new hepatitis C drugs PharmaCare has covered in the past six months. In October, PharmaCare began coverage of Galexos (simeprevir) for certain people after successful negotiations to lower its price. PharmaCare also covers Victrelis (boceprevir) and peginterferon/ribavirin, for the treatment of chronic hepatitis C. March is Liver Health Month, which provides an opportunity to raise awareness of the signs and risk factors for liver disease, including hepatitis C. Quick facts: Hepatitis C is a serious, communicable disease that is spread through direct contact with the blood of an infected person. Symptoms may include fatigue, jaundice, abdominal pain, and joint pain. In some people, it can cause liver damage (cirrhosis) or liver cancer. There are about 80,000 people living with hepatitis C in B.C. However, many people with the virus have no symptoms; about 33% of people living with hepatitis C do not know they have it. About a quarter of people with hepatitis C do not need treatment, as their body fights off the infection. For those with persistent chronic infections and disease in B.C., about 50,000 in B.C. may eventually require treatment. People who are successfully treated and cured of hepatitis C infection are then not able to pass the disease on to others. In 2013-14, about 1,200 people in B.C. were treated for chronic hepatitis C with medication. Learn more: For more information on PharmaCare coverage of hepatitis C drugs, please visit: http://www.health.gov.bc.ca/pharmacare/formulary/dds.html For more information about liver health, please visit: www.liver.ca
Media Contact:
Laura Heinze Media Relations Manager Ministry of Health 250 952-1887 (media line)

Connect with the Province of B.C. at: www.gov.bc.ca/connect

I regularly check a website to see of there is any change in the coverage status here...I never have any expectations when I do and just saw the above that was released yesterday. I can't believe it...I feel like I just won the lottery.

I'm stage 4 fibrosis/mild cirrhosis and will be 60 in 14 weeks. My liver still functions but the last year especially has been hard and this news doesn't come a day too early. My Dr said I will be a priority so I can only hope that this means a special birthday present this year. YIPPPEEE!!

I just bumped up my DR's appointment to Monday!

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