new to hep c, living in Ontario, Canada

[andy_k]

hi,

do we have anybody here from Ontario, Canada?

i have got tested positive for hep c about 4 months ago, found a family doctor which set up for me an appt with gastro in Brampton for march 2011. it looks like they are very busy and 7 month is normal waiting time for ontario (i was told so). and it looks like gastro will accept the people by refferal only...

does anybody has an expirience with that system in ontario? or maybe you have any advise how to get an appt faster?

also, could you please advise any internet sites where i can find the info about who gets approval for treatment

i'm not really sure what stage of hep c i have. just the results of the test, that i have gen 1, 1.62e+6 viral load, and ALT 72

thanks a lot
andy
  

[andy_k]

thanks a lot for your help and advise!

yes, i would like to know more about clinical trails st TWH.
now i'm at that stage that i don't really know anything about this process.

so, all the information is greatly appreciated!

ps
i've sent a message to Will

[Trish77]

Andy - Will brings up a good point regarding treatment and cost of drugs.  One of the options for treatment IS clinical drug trials.  One of the other reasons for potentially pursuing TWH is that they are a major liver centre and do alot of trials.  They, of course, take their own patients and you have to be their patient to be in their trials.  

As Will mentioned, he's in a clinical drug trial at TWH and I was also.  Send either of us a message if you have any questions on how that works.....if that's not information overload for you at this juncture.  It's certainly an option you should be aware of and I'm glad that will brought it up.

[willbb]

If I remember correctly the last i heard when I was at the TWH they are still looking for volunteers for the study. You might want to let andy know or he can send me a message.

Or would that just complicate things at this juncture?

[Trish77]

It's simply a bottleneck issue, Bill.  Only two labs processing PCR's from all across the country...it simply takes time.  I guess they could hire more people, expand the labs....but ....well....it is what it is.

[Trish77]

Yeah....I know how they decide.  I had insurance as well and it would cover 80% of my costs.  The drugs have a DIN # and you call your insurance company with the DIN # and they will tell you how much of the cost they will cover.

That still left me with a significant amount, for me, to cover on my own.  So then there is the Trillium Drug Plan in Ontario that you can apply to for assistance with the balance.  Based on your income, they decide if you warrant assistance and they determine an amount you need to pay for out of pocket yourself and after you've paid that amount, then it kicks in and they cover the balance.  It takes awhile for the approval to go through when it comes to Trillium, like a couple of months.  

Having said that.....the Trillium Drug Plan powers-that-be and how they look at Hep C treatment is a major issue with me how they decide who gets funding for treatment drugs for persons with Hep C.  In their infinite wisdom, they have decided that persons who are early stage liver disease, as in Stage 1, do not get funded.  They will reserve funding for those with later stage liver disease.  Never mind the fact  that it does not go away, that treatment in the early stages can prevent a whole host of other illnesses and issues and that, since treatment fails for a significant number of persons, the more time you have on your side the better.....they still make you wait until your liver disease is later stage.  I was turned down for funding since I was Stage 1, Grade 1.  My doc was furious, absolutely furious.  My next docs were prepared to fight for it and were used to having to do that and had a certain amount of success with that so it's not a blanket denial to all but it's a reality for many and that's how it is.  I ended up in a clinical drug trial instead so it was no longer an issue.  It still bites my a$$ for those folks who aren't in that situation and I talked with other folks who got denied and were very upset by that.  

To me, this is utterly archaic.  Having said that, even a hepatologist I highly respect agreed with this process, saying we can't afford to fund everyone so he supports this approach.  Maybe one of the few things I disagree with him on.

Sorry to be so stark....that's the reality.

[andy_k]

thanks Bill and good luck to you too!

[andy_k]

thanks Trish!

by any chance, do you know how they decide who gets the treatment drugs covered by the gov or other organizations in ontario?

how does it work? if the the gastro/hepo doctor decided that you need a treatment, will be it covered somehow?  or it is just a start point and you have to look for a way to find the money?

i have the drug insurance at work, but i don't think that it will cover those expensive drugs.

[Bill1954]

That’s interesting, Trish. I suppose there is a wait to batch out large quantities perhaps? More or less the same here in terms of labs; Quest Diagnostics is one of our largest commercial labs here; I believe they only process PCR’s at their facility her in California. We probably do have a larger number of labs performing these tests, though. Typically, here in the states 10 working days is sufficient to turn NAT results around to the doctor’s office, and it often happens faster than that.

Good luck Andy, and keep reading; you’re asking the right questions—

Bill

[Trish77]

Bill...viral load testing in the U.S. might take a couple of weeks but not so much here in Canada, depending on where you're getting treated out of and where your tests are being sent.   There are only two labs in Canada that process PCR's ( I don't think that's changed since I finished treatment?) and those waiting for those results can be waiting 6 weeks or so often enough.  

Andy.....I'd say it's potentially a good thing you have to wait even though it's really hard not knowing.  It helped me alot to spend some time understanding all the in's and out's of treatment etc. and that helped me make good choices for myself as I went along.  You'll get there soon enough and then you'll get the ball rolling....but believe me, there will still be waiting time as you go through the process so just take it as it comes.  You'll do alright.

[andy_k]

Thanks a lot for answering, I really appreciate that!

I’m just trying to find the best way on how to deal with it.

i've read about new promising drugs that hopefully will be introduced next year, but at the same time kinda scared with all the stories about sx of tx

so, maybe it is a good thing that I have to wait and don’t need to make any decisions now. i don’t know…
  
Thanks again!
Andy

[willbb]

Sorry i didn"t get back to you however it looks like you are recv.lots of good advice.

Just to add to what Bill just said in regards to viral load, mine would be considered very high, and I have very min. fib.

All the best.   WILL

[Bill1954]

Hi again, Andy. No problem answering questions, that’s what this place is about. I see what you’re trying to do; establishing trends is often a good idea. However, viral load bounces around all over the place, and really doesn’t tell us much about disease progression.

Progression is defined by how much scarring has occurred to the liver; and viral load has little bearing on that. For instance, my viral load was tested many times, was never greater than 150,000 IU/mL, but I had developed very significant fibrosis.

Conversely, other patients in here have reported viral loads in excess of 50,000,000 and biopsy results indicated very little scarring to the liver. When a patient begins treatment, THEN viral load gains importance; at that point, it can determine how rapidly the patient is responding to the treatment drugs. If the response is slow, it might indicate the drugs aren’t working well, and additional action might be warranted.

I keep harping on this point because it’s a fundamental of HCV management, and important to understand.

Once you’re tied in with the specialist and in the loop there, test results can be had overnight; although some viral load tests can take a couple of weeks to turn around. If treatment isn’t deemed necessary right now, then usually testing every six months is the norm in order to monitor your disease.

Keep asking questions as they arise; I’m sure you’ll have plenty. It’s important to try to grasp the basics of the disease in order to make informed decisions regarding your health. And a little anxiety is normal, by the way :o).

Best to you,

Bill

[Trish77]

Hi Andy,

I checked out the Scope clinic online.  They seem to have one hepatologist on staff who has some connection with TWH.  Their Hep C information though is out of date, back to 2007.  It says there isn't a cure yet and that ribavirin might be included with interferon.  Well it's always included with interferon and there IS a cure, it's just that it doesn't work for everyone.   Whichever way you go, just make sure that the person you're dealing with is current on their knowledge of treating Hep C, even if their website is not.  (That's a first red-flag for me, personally.....you would think their on-staff hepatologist would want the information they're putting out to be current and accurate.)

As for speeding up the process, I'm not sure you can - if you decide to book in with TWH or even go there as a second opinion at some point, which is how I ended up there when I wasn't comfortable with my first gastro's approach, you may get lucky and get in sooner like I did, within a month.  However, I wouldn't panic too much about a four month remaining wait.  Use the waiting time to get very familiar with Hep C and treatment protocols etc. so that you know what questions to ask and so that you'll recognize good information from bad when it's being given to you.

I didn't repeat any tests while I was waiting as I had no tests to repeat, other than to have a second test run to confirm that the Hep C antibody is indeed present.  Not until I got to my gastroenterologist ten months later did I get the tests you've already had so I knew virtually nothing until then, not my genotype, viral load, staging, nothing.  When I got to my gastro, he did those tests and it took another two months of waiting to get those results - so it took me about a year to find out all that information.  He recommended I go into treatment right away based on my viral load with no biopsy and I insisted on a biopsy.  That I only had to wait a couple of weeks to have done and then three weeks for results.  My gastro's recommendation that I go into treatment based on my viral load and with no biopsy were both faulty to me and the reason I went looking for a second opinion, which landed me at TWH.

Regarding your question on a viral load test - I wouldn't worry about that too much.  It goes up and down and doesn't correlate with liver damage at all so what your viral load is tells you virtually nothing about your actual situation.   The biopsy will tell you more and will tell you what stage of liver damage you're at.  When you decide to start treatment, that's when viral load becomes important as they'll do a viral load test at the outset of your treatment and then monitor for the duration of treatment to see how the drugs are working to eradicate the virus.  Until then, viral load is a number but of less concern than the other numbers such as ALT and AST.

If you want to get a CBC, just to see where your liver enzymes are at, you can....however I don't see that it will exacerbate all that much in the short term.  I'd save the trouble and go with the results you have until you get to the gastroenterologist.

Hope this isn't information overload and hope this helps in some way.

Trish

[andy_k]

hi Bill

thanks a lot for answering!

i just was thinking that if i can get another test at around 6 month or so after the first one, it can show some changes and it will be easier to see how fast hep c is progressing and make any decision about treatment and etc

no really sure how it works, so was trying to build a history of test results.

i just don't wanna wait for 7 month for appt, and then the gastro will say something like "the last test was done about 8 months ago, lets do another one to see where you are now".
and i will wait a couple of months more to get to see him next time...

i do realize that it is just a begining and and that all the major decisions regarding it are still ahead, just feel anxious about it

thanks
andy

[Bill1954]

While waiting for six months to deal with this may seem barbaric, it’s not uncommon and won’t likely cause you any more harm than perhaps some anxiety. The disease typically progresses over years and decades, not weeks or months.

You’re viral load will likely change over a six month period; whether it increases or decreases is probably of little consequence at this juncture. This value will become important later if you decide to undergo treatment, Andy.

Best of luck,

Bill

[andy_k]

thanks Brent!
good luck to you too!

[andy_k]

hi Trish,

thanks a lot for the info.

i'll try to ask my FD to send me to toronto,

the FD reffered me to one of the gastro's at the Scope clinic in brampton.
it looks like a good choice and in my area, i was just worried about that 7 month wait time
but i'm waiting for 3 months already, maybe will just wait for 4 more. i have asked at gastro's office to put me on a waiting list in case if somebody cancels the appt.

did you do or repeate any tests while you were waiting for your first appt with a gastro?

i've done my last blood test in July, and was thinking about asking my FD to send me to get another liver function and virus load test maybe in December. just to see how it changes in 6 month period.

thank you,
andy

[IAmTheWalrus]

Not from Canada, but I have spent some time there and will be back in Toronto in two weeks, so I feel a little connected. Welcome to the forum. There is lots of good help and info here. Best of luck!

Brent

[Trish77]

sorry...just noticed you DID find a family doctor and that's good.  Not easy for newcomers to find one so you're doing well with that.

[Trish77]

Hi Andy,

I'm from your area as Will and Bill have mentioned.  If you don't have a family doctor, how did you get referred to the Gastroenterologist?  Through a walk-in clinic doctor?  I had a 10 month wait first time I was referred to the gastroenterologist in my area and when I contacted Toronto Western Hospital for a second opinion, I got in within a month but was told I was lucky as it usually takes six months.  However, they have a number of hepatologists on staff and it's worth a shot if you can get to downtown Toronto well enough.  You'll also get very good knowledgeable care there.   Whoever referred you to the gastro in Brampton, you can ask them to refer you instead to TWH.   Specialists don't take patients directly, they need a referral from a physician.  

It'll take a biopsy to know what stage you are and when you get in to the gastroenterologist / hepatologist, they can take care of that.  

Hope that helps and good luck with this.

Trish

[andy_k]

hi Will,
thanks for the info about Toronto Liver Clinic.

i didn't have a family doctor, and just found one that was accepting patients close to my place. so not really sure how good he is, don't know him at all.
don't know anything about the gastro niether

by any chance do you know if can call the Liver Clinic in toronto and make an appt or at least request if it possible to get one, or it has to be done by family doctor?

i'm sorry if my questions sounds kinda damn, i'm new to canadian health care system and have no idea how it works.

thanks
andy

[andy_k]

thanks Bill,
i will try to send Trish a message.

[andy_k]

thanks a lot!
i will check the forum tomorrow and next week.

[willbb]

HI Andy I am also from Ontario,and there are a few others that will respond in the next few days.As Bill said Trish77 is also in the area and is very helpfull.

As far as not being able to get reffered to a gastro here until Mar. that is an extraordinarly long time here. Your GP is obviously reffering to one that must be extremely busy. My avg. wait time was never more than about 4 or 5 wks.

Having said that ,because not all gastro"s here are all totally familiar in all aspects of HCV my advice would be to ask your GP to refer you to one of the hepatologists at the Liver Clinic in  Toronto. It is one of the foremost clinics in North America.

They are much more knowledgable about HCV than most of the Gastro"S.  They would most likely order a biopsy and as Bill said that is the best indicator of how things are.

They would then be able to talk to you about treatment or not depending on the stage you are at.

If you need any other info as far as the Liver Clinic  go to the send a message link to myself or Trish77 and we will help you out.

All the best.. Will