44 Year Old Man Just found Out

[NYCHEPCMAN]

I was feeling pressure by my right rib cage so I went for a physical and had a blood test - just found out I tested positive for Hep C 1b - AST 35, ALT 66 and an F2 (borderline F3). This didn't surprise me.

My mom was diagnosed with this a few months before she died in 1999 and both she and I received blood transfusions so this makes sense. One of my doctors do not beleive that this is how I became infected since it was so long ago and is insisting that I got it other ways. That isn't important to me right now but being able to line up the right treatment as soon as possible.  Anyone could shed light on what any of this means and what I can expect in terms of getting approved? I have regular health insurance including prescriptions through GHI (EmblemHealth) Express Script. Thanks.     

[KimInTheForest]

Welcome to the forums, NYChepman! Sorry to hear about your recent diagnosis, but you are approaching it the right way by focusing on getting treatment rather than on how you got it. (BTW, many of us contracted HCV a VERY long time ago - about 45 years in my case, and I was finally cured this year with Harvoni.)

I am in Canada so I don't know all the ins and outs of the US insurance system. I know that some people get approved quickly, others have to fight their way through a lengthy appeal process.

Make sure you have a good doctor. Are you seeing a hepatologist or GI or other specialist for this?

all the best,
kim

[KimInTheForest]

Also, do you know your viral load? That is a test you will want to have done if it hasn't been done already. Your genotype (1b) responds quite well to just 8 weeks of Harvoni if you also have low viral load, and are treatment naive, and no cirrhosis. (And at F2, you are quite a ways away from cirrhosis.)

kim

[NYCHEPCMAN]

Thanks so much Kim - I am seeing a gastro doctor. He seems calm about this - its my regular doctor that isn't (though admits she doesn't specialize in this).

My HCV is 1,237,287 and Heptimax is 6.09.

[Mike]

Welcome to the forum, NYC,

You are right: It really doesn't matter how you contracted HCV. What's important is to know you have it and how to avoid spreading the virus (actually HCV is pretty tough to spread outside of direct blood-to-blood contact).

GI physicians are well suited to treat HCV, so it sounds like you have this covered (most GP's don't know much about HCV and I've found that they're generally oblivious to the new treatments, cure rates and so on). 

The new treatments are boasting 90%+ cure rates and these rates are improving at an accelerated pace.

Simply put, this is the best time to learn you are HCV positive because the current treatments are short, effective and well tolerated.

This wasn't the case 5 years ago.

It looks like you have all the things you need to move forward with treatment, and this what the GI (gastro) will be talking to you about. The GI might want a few more blood tests, but you have the majority of what's needed to start treatment.

Be prepared, however, to arm wrestle with the insurance company due to the cost of treatment.

Feel free to ask questions here, as forum members have a bunch of collective knowledge and can most likely provide you with quality answers. 

Best wishes, Mike

[KimInTheForest]

That's a pretty low viral load as these things go. I think your profile fits the 8-week category of Harvoni quite well. I bet that is what your GI will prescribe. But if he/she prescribes 12 weeks, so much the better. Don't refuse. Then comes the possible battle of getting insurance to cover it.

kim

[NYCHEPCMAN]

Thanks both! I am supposed to see GI doc next week to "discuss treatment options."  I don't want to get ahead of myself but I am hoping for Harvoni...will keep you posted. This has helped my anxiety - I felt like I am in an alternative universe - as I always blessed with good health and never felt any problems until recently. Glad I listened to my body. 

[BillT]

Hi NYC and welcome to the forum,
                                                Your numbers look really good.As you can see from mine we're very much the same and have improved dramatically since I started.The 1b from my understanding seems to be the easiest one to cure.I'm on the Viekira with no ribas and my week 4 showed undetected so take that for what's it worth.Like everyone is saying just concentrate on getting approval,and there's a lot of information here if you need to fight the insurance company.It's a sin they're making it so hard on people.Not everyone has to fight so just keep that in mind.Keep us posted on how things are going and if you have any questions just ask.Cheers

[NYCHEPCMAN]

Thanks BillT - I have an appointment with the gastro doctor tomorrow morning to discuss treatment options so I am a but nervous with what he wants me to do and insurance approval. I have GHI (EmblemHealth) which contracts with Express Scripts which from what I understand has some type of exclusive agreement with the Viekira! 

Hoping it won't be much of a fight and not sure if your doctor matters in this fight?  Thanks for words of encouragement - seems most family and friends either don't see what the big deal is (i.e you can still drink or plan a vacation) or judge me for having it.

 

[Joe NM]

You should be approved for 12 weeks of Viekira Pak no problem, and luckily if it's 1b then you won't need to take ribavirin and can avoid those side-effects! Due to the 'preferred drug' policy of E-Scripts you'd need to go for that rather than Harvoni.

[NYCHEPCMAN]

Met with doctor yesterday - he's all set with me going through treatment - just cautioned me to be ready to fight with insurance company. Like Joe NM said, doctor  said the good news is that I have 1B so no need for ribavirin. He asked me to reach out to insurance to see if they need anything else (blood tests, liver scan etc) to approve.  So hear goes - any advise is welcomed.

I also have an abdomen scan next Monday because doctor wants a baseline look at my liver for post treatment follow ups.

[dearprudence]

Hi NYCHEPCMAN,
I too have GHI (Emblem Health) Express Script. Had HCV for over 40 years - 1A. They approved Vpak and Riba for me rather quickly. Doc handled everything. Wanted Harvoni but my doc said don't fight it because insurance company may put you on back burner since you didn't take what they offered. He fought for me toget 12 weeks rather than the 8 they approved and we got it. He was a researcher on Vpak and assured me about taking it. Express Script does have a relationship with Abbvie and so Vpak is their drug. Had my viral load done at 12 weeks post treatment in the beginning of November and I am cured. My doc is in NYC and has been my Hep C doc since 1999. Stay strong and know you are headed in the right direction. Good luck to you, Prudence

[NYCHEPCMAN]

Thanks-- haven't heard back from insurance company...interesting I got an abdominal scan which found no abnormalities....so doctor is very happy and noted my liver numbers are normal since I stopped drinking...

[Coach Mike]

Hi,
You definitely "picked" a good time to find out you have this crap.  Good advice above.  See the GI and see what he/she recommends.  You probably should call your insurance company and find out their criteria for treatment of HCV and what drugs they cover on their formulary.  That information will give you a better idea how hard you will have to fight for coverage.
There are other options now, but you I would see what the insurance company says first.  After all, that why people have health insurance, or at least that is what I always thought.

Good Luck,
Coach Mike

[NYCHEPCMAN]

Just as an update- first batch of viekira will be shipped here Tuesday. A lot of anguish about three copayments of $11,000 - and that I don't qualify for help bc of income- but folks at proceed (abbievie) were so helpful and compassionate.  So copayments will be $5!

I'm have no idea how people with disabilities get through this process. It was quite a journey -