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Author Topic: New Here, Need advice!  (Read 5785 times)

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Offline fitandsick

  • Member
  • Posts: 6
New Here, Need advice!
« on: June 15, 2015, 02:19:30 pm »
Hello, I have a unique story... or so I think. I could use some advice.

I'm a 30 year old male, very healthy, active, fit. My entire life I've always taken care of myself with the exception of some binge drinking when I was younger and still a drink or two as a 30 year old adult.

My wife and I have been trying to conceive a second child for over a year. The second time around has proven to be a lot more difficult. This lead us to see a fertility specialist who recommended IVF treatment.

As a requirement to continue with IVF we both had to take an infectious disease blood test. I had no concerns about this... a few days later i received a phone call telling me that I had tested HCV positive. OOF! wasn't expecting that. My  wife on the other hand had tested negative (despite being intimate with me for over 7 years).

My mother was HCV positive. she died from liver failure due to cancer several years ago. I've never done IV drugs, never shared needles, haven't been with a lot of sexual partners... so this seems like the only way I could have contracted it.

My PCP referred me to a hepitology specialist who i saw in April, and May of this year. He drew blood and ran several tests including:

Genotype 1A
HCV RNA (11 mil/ul)
"comprehensive metabolic panel" (AST:36, ALT:37)
Hemogram
Iron Binding Profile
Ferritin
ALPHA-1-ANTITRYPSIN
TISSUE TRANSGLUTAMINASE IgA
EGFR
ANA
CERULOPLASMIN
ANTI-MITOCHONDRIAL/SMOOTH ANTIBODY
and a couple others I might forget.

All of the function tests showed "normal" results. I was also given an abdominal ultrasound that showed normal liver mass.

My specialist then decided it would be best if I started Harvoni, he prescribed it and submitted it to my insurance company (neighborhood health plan) for approval.

On May 28th I received my first Denial letter from NHP stating it wasn't "medically necessary" for me to receive treatment because there was lack of evidence of "Fibrosis stage F3-F4". My doctor pretty much told me this was "normal" and we'd file appeals until they approved... he didn't seem worried that I would get treatment.

LONG WINDED I KNOW! So here's my questions

Why didn't my specialist order a fibrosure/fibroscan test for me? The internet seems to indicate I need one of these to know what "stage" I am. If all of my hepatic functions etc... look normal is it obvious that I don't have a late stage fibrosis? Should I demand this?

How likely is it that I'll get approved for treatment if I'm not showing any signs of being sick or show liver damage? I want to rid myself of this disease so I can live my life without worry... this also affects our options for infertility.

What does an abdominal ultrasound actually show?

I could use any advice or similar stories... I'm kind of at a loss. This seems like such a long road to go down.  its depressing to think there's a cure out there that I can't get because I'm not sick enough... Ridiculous!

Offline KimInTheForest

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  • Posts: 1,967
  • Believe in yourself
Re: New Here, Need advice!
« Reply #1 on: June 15, 2015, 03:20:28 pm »
Hi fitandsick. I understand your problem. There may be someone here who can offer more information, but this is what (I think) I know:

1. I believe a person can indeed have normal liver function tests (ALT, AST, etc), and "feel" healthy, and still be at an advanced stage of fibrosis.

2. An ultrasound is not sufficient for showing or staging fibrosis.

3. A Fibrosure (blood test) or Fibroscan (specialized ultrasound) is not terribly accurate at lower stages of Fibrosis - even up to Stage 3. Before I started treatment, I had a Fibroscan at one clinic, on one machine that showed me to be F3. I then had a Fibroscan at another clinic with a different machine and operator that showed me to be F2. In my case, my access to treatment is not dependent upon my stage of Fibrosis. But for someone dealing with an insurance company, you can see how the variability of this particular method for staging fibrosis may not help you.

4. Biopsy, while invasive, is still apparently considered the "Gold Standard" for determining fibrosis and degree of disease progression.

So you could either: 1) let your doctor continue through the appeal process and hope you are approved at some point (many people go through this procedure before getting approved for Harvoni - world's most expensive pill), or 2) you could ask for a fibroscan, and if it comes back with an F3 value then you can use that. If it doesn't return an F3 value, you could either try a 2nd fibroscan with a different machine and operator, or go on to biopsy.

However, your doctor may feel his chances of getting you approved are better if he doesn't have a piece of lab work that definitively says you are only F0-F1 (although really, if you have had HCV since birth, you are probably more than that by now).

Bottom Line: While this is a difficult time and a difficult stage of the process for you (having to fight for approval for treatment), just remember that the cure is actually here, and you will be cured. Just a couple of years ago, none of us could say that with any certainty.

best to you,
kim :)

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline fitandsick

  • Member
  • Posts: 6
Re: New Here, Need advice!
« Reply #2 on: June 15, 2015, 03:52:01 pm »
Thank you Kim I appreciate your info! It is good to know a cure is available... just sucks to know how hard it is to get!

Would it be smart to get a Fibrosis test even if my Harvoni gets miraculously approved? I mean... just so i know how to live my daily life. What to look out for?

I hadn't thought about the fact that he didn't do a fibrosis test with the intention of not having a low stage on file... ignorance is bliss i guess?

Thanks again.

Offline KimInTheForest

  • Member
  • Posts: 1,967
  • Believe in yourself
Re: New Here, Need advice!
« Reply #3 on: June 15, 2015, 04:23:47 pm »
Yes, I would think that anyone with Hepatitis C, and any doctor treating an HCV patient, needs to know the stage of disease progression. Otherwise, how do you know where you're at? So yes, you do want to know your Fibrosis stage by one means or another.

There may not be any strategic component to your Dr. not ordering those tests. That was just a guess on my part. So go ahead and ask him for the fibrosis test, I would say. I do know that some people who are getting their Harvoni through insurance have found that their Dr is not giving them any viral load test during treatment, which most people really want to see so they can celebrate when they first reach "undetected". One person's Dr. told her that if he doesn't do one during treatment, then the insurance company won't have any basis for shortening duration of treatment mid-stream. Because that has been happening to some people - they get cut off after just 8 weeks because they reached UND at Week 2 so some bean-counter at an insurance company overrides all medical knowledge and decides 8 weeks of Harvoni should be good enough. Crazy what's going on right now!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline WitchyWoman

  • Newbie
  • Posts: 1
Re: New Here, Need advice!
« Reply #4 on: May 18, 2017, 01:05:59 am »
Hey FitandSick,

I know it's been a couple of years since you posted. I'm in the exact position with my husband and the fertility docs and the infectious test and OMG he is positive part. I wanted to know if you received treatment? How long did it take? How are you doing now, and did you conceive another child?

Much appreciated.

 


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