Recommendation for PCR testing labs in NY pls

[Trish77]

I'm waiting to see if I get in the drug trial and if I do, first dose is Feb. 29.  However, there are a couple complications that have come up and I'm having to be prepared to resort to Plan B, which is regular SOC.  

Having said that...much to my dismay, I have found out that there are only two labs in Canada that do PCR's and the upper limit of any assays available at either lab is 1.3mil IU/ml which is where I already am.  On top of that, the government will only cover one quant PCR per year and I had mine last July.  I would like an accurate baseline before I start tx and if not in the trial, I want to start as fast as I can get everything in place.

I would like to start with an accurate baseline.  The doctor can't give me that because government regulations don't allow for it.  I can't even pay for my own because the labs are government labs.

Therefore.  Since I live close  - as in an hour and a half - from the US border at Niagara Falls. Ontario/NY....I wonder if anyone has gone for quant PCR tests at labs in that area within a couple hours drive.. possibly more..that I can get tests done - if you have contact information, that would be great.  I can call to get the information I require.  

Yes, I'm jumping the gun a bit but this information would be useful to not only myself but to others in my position who may not have the option of a drug trial..which I might not myself.

Thanks, appreciated.

Trish

[HARRYBEADS]

  Trish don't know where you are being treated but run the otherway.I had my load checked twice in one year in Canada, Oct 06 and again in Feb 07 when I started treatment. Go to another University Hospital.!!!!!

I guess it is not a concern now, but for others, here. Everything works out in the end.


Harry

[Trish77]

Well...the wait is over.  I got the word at noon today.  I'm in.  Treatment starts Friday Feb. 29th.  Relieved and scared and happy to finally be getting on with it.

[dointime]

lemonade out of lemons - I like that.:))  

I too found the uncertainty before getting into my trial very wearing, and drove myself crazy juggling my (all unpleasant and difficult) options around.  

dt      

    

[Trish77]

when I said I'd suck it up if it came to that, I didn't mean I'd suck it up and go with the inaccurate baseline.  I simply meant I'd suck it up that this is the reality as a whole.  I'll pursue the quant PCR in the U.S. until reality tells me I can't get that either.  I imagine it will come down to a cost issue rather than anything else.  And.. it will be what it will be.

[Trish77]

I agree with you that I probably have as good a chance with SOC if I get into one of the lesser arms but there really is only one lesser arm, and that's half the INF and full weight-based riba.  The only other departure from SOC is the arm that takes you off treatment at 26 weeks if you RVR.   The benefits of the drug trial for ME is that I'd get an accurate baseline to start, I'd get weekly quant PCR's for the first 4 weeks, then at 6 and 8 weeks, then at 12, etc.  I'd get all my drugs paid for.  On regular SOC, I cover 20% of my own drugs, which is better than 100% but it will still be a bit of a hardship for me.  I will not have my accurate baseline and I will not get my quant PCR's until 12 weeks.  I'll get qual PCR's at 4 and 8 weeks instead.  

The BEST of these arms is the PI, full INF and weight-based riba.   If it doesn't work, I get a subsequent 48 week SOC paid for.  Yes, there are risks.  We'll be monitoring for those.

The other downside for me not getting into the trial is that I have yet another delay.  I'll have to sort out payment for the 20% of the drugs my benefits don't cover.  I have to book another appt with my doc and wait to get in and get the drugs ordered, blah blah blah.  I'm out of patience really but I'll have to find some more. I either suck it up with an inaccurate baseline or go looking to get one done in the U.S.  I'll suck it up if it comes to that...I just don't want it to come to that.  

And yes, I'll make the most of whatever I get dealt with.  I've got a long track record of making lemonade out of lemons.  My squeezing arm just gets a little tired once in awhile.  But yes...it'll be what it'll be.

[dointime]

You know you probably have just as good a chance of SVR with SOC than with the average of all the trial arms.  So maybe one or two of the arms have huge success, if you are not in those arms then it's neither here nor there to you.  You might have a virus that can be beaten by SOC alone, without the hassle and the risk of a trial.  It really is just your luck, and unfortunately there's no way of telling in advance.  

Anyway I hope you get what you want.  If you don't then all you can do is regard it as a blessing in disguise.  

dointime  

[Trish77]

Thanks for your comment.  I have an Rx from a Canadian doctor and we'll see how that goes.  I'm a bit weary at the moment and have to rest up so that I can go back at it again.  

As far as family health history, my family is really remarkably healthy and live into their late 80's and 90's.  I find it a hard pill to swallow that one aunt who didn't manage her diabetes well and suffered a heart attack after a lifetime of carelessness can be the eliminating factor but it will be what it will be.

I understand that trials are not perfect, particularly Phase II trials which is what I'm being considered for.  I did ask about rescue drugs and I knew before going into this that trials usually don't allow such things.  I did digest some of the risks of this one and some of them were and are quite sobering, actually.  All in all, I'd decided to proceed.  A bit of paperwork delay and my aunt's lifestyle choices may change that and obviously I'm a bit frustrated with that but I'll get over it.  I always do..pick myself up and go at it all over again...just differently.  Just a bit weary from it all at the moment.  It'll pass.

What trial are you going for yourself?  Thanks for the encouragement, appreciated.  Let me know how things go with you.  Take care.

Trish

[Wassup]

There were some friends who had been guests in my home, (before my dx w/ HCV). They too were concerned that they may have contracted the Virus from, my nail clippers, a razor, etc. Jim was correct in that I believe it is illegal for a lab to perform any test without an Rx. You might be able to go to the ER of a hospital, explain your situation, and possibly get an 'on call' M.D. there to write you the Rx.  Re: trials/ Studys, I'm also in your same position Re; General Health family history concerns, etc. I'm meeting with Dr.s on 2-28 to see if I'm a candidate for one of their studies. I was warned that 'Studies aren't always all they're cracked up to be' and further, 'to inquire before you start tx, if there are any rescue drugs'. These are meds they give you when or if they feel you are3n't responding to tx as you should. Good luck to us both in the same boat, Trish.  Ant B

[Trish77]

Thanks Jim.  That's an excellent starting point and helps immensely, much appreciated. Really..honestly...I'm thinking the cost will be beyond me but until I come smack up against such a reality, I'll follow it through.

The sticking point on the drug trial is that they want the technician who did my biopsy to provide them with the results in a different format.  He told them it would take him 7 days to do that.  We don't have 7 days.  The study nurse doesn't know if they can make allowances for that.  Then they asked me if anyone had died of any heart-related problems in my family.  My aunt died of a heart attack at 50 years old from complications from her badly managed diabetes.  I told them without the diabetes she wouldn't have had heart issues but that still seemed to be a big deal...something the study nurse needed to discuss with the doctor overseeing the trial.  This on top of the information from the Public Health lab makes it not one of my favourite days lately but I'll see how things go.  

[jmjm530]

You should also know that the price on these tests are negotiable against the "list price" published. If you call customer service, ask to speak to a supervisor and explain that you're paying out of your own pocket you could save a lot. Another way to get the test at way below list is to find a participating doctor and have that office draw the blood with the understanding that you will pay the doctor's cost for the test which is already discounted.  Of course, this involves a doctor's visit which may add to the cost. When you call Quest, make sure to ask if they accept Canadian prescriptions, because if not, you may have to see -- or at least get an rx -- from a U.S. doctor. What is required is an rx and a diagnosis code -- although not sure if a diagnosis code is needed if it's out of your own pocket. I believe the U.S. diagnosis code that will work for Hep C is 07054

-- Jim

[jmjm530]

Just punch in the zip code of the closest town over the border from you in the link below.

Since it's a pre-treatment test, sensitivity is less important than getting a test with a high upper limit. For that reason, a simple Bdna (limit around 600 IU/ml) may be the most cost effective, or one of their real-time PCR that goes down to 50 IU/ml. Just check on the upper limit as they may have more than one. If price is secondary and you don't want to do any research, just order "Heptimax" and it's all done for you. Another advantage here is that if you decide to border cross again to re-test, you could use the same test which goes down to 5 IU/ml. I've read somewhere that all things equal, it's best to stick to the same test for comparision purposes but I wouldn't fret over that one bit.

http://www.questdiagnostics.com/hcp/psc/jsp/hcp_psc_index.jsp