Treatment frustration

[worried55]

So I just had my follow up with my doctor at mass general in Boston.  I see the best doctors but yet they are bound by insurance red tape!!! I am 3a and was diagnosed last year.  I contracted it somewhere in the past 5 years.  My labs are fantastic and my fibrosis score is 0-1. We r pushing for insurance to cover Sovaldi and dacklinza. I am going to call the insurance company daily!!! We are also looking into an upcoming gilead trial.  I'm only 37 and have two kids.  I'm so scared I'm going to get sick before they can treat me or even worse death. I'm feeling a little defeated. Just had to rant.  Anyone have any advice on dealing with Harvard pilgrim?

[KimInTheForest]

Hi Worried55. I understand your frustration and your worry about all this! It is indeed outrageous the way so many people are being denied treatment or experiencing such great delays in being treated.

Regarding your fears of your health plummeting (or worse) while you wait, I think you will be okay on that score. Hep C progresses so very slowly (even 3a, honestly), that with you being just 37 with great labs and virtually no fibrosis, I think it would be many years before you were in serious trouble. Not an excuse for insurance companies to deny you treatment, of course. But I don't think you need to panic about rapid deterioration. I had Genotype 3a for about 45 years before being cured earlier this year with a 12-week clinical trial of Harvoni+ribavirin. My health had remained good throughout that time, and my fibrosis, after 45 years, was F2.

But absolutely keep pushing for treatment, keep phoning the insurance company… squeaky wheel gets the grease. And good for you for pursuing clinical trials. A lot of people (myself included) have gotten cured that way.

best,
kim

[yag1064]

Hi worried55,
   Your words touch me. I was in a similar place eight years ago. Your words brought back those scary thoughts that I had. All I can tell your is that I had to let that energy go. I finally made friends with the idea that the virus is going to be with me until my cure was found. Up until then my numbers were high because I felt so trapped. That energy was driving me nuts. I worried about my future.
   I had to experience the dark age treatments of the past that were 48wk long with shots of poison medicine and I failed. That was in 2007 with no new treatments in the foreseeable future. That's when I started to treat myself better by eating well and reducing as many toxins as I could. I found out that it was all up to me. I stopped separating the virus from myself. More or less it is a part of who I am. OK, I got to stop because I am no one special. I'm ordinary, but until I was able to accept me with my conditions my wishes were poisoning the well. My numbers started to improve. Were they "Normal"?, No, but they are marginally outside. For me this is about treating my liver well.
   Its all about you. You make the decisions that will make the difference. No one else has as much to gain. Your mind can sometimes stir up the chemical factory and bad things happen. Why not enjoy the life you have. I know for me I have improved. My motto: "Don't Believe Everything You Think". Peacefully abide. That helped my condition. The hard part is finding your path. It takes effort, but you are worth it!.
    Concentrate on the present. How do I feel right now? There is no right answer. But if you listen will you hear an answer. Take notice of it. It makes a difference.

Best wishes on your path,
Rick

[worried55]

Thank you both for the encouragement.   Kim I can always count on you to reply and be supportive!  Thank you!  When I was first diagnosed last year my viral load was 38100 and only slightly elevated labs...like barely.  My new labs are all normal and my viral load is 28000.  She said its some of the lowest she's seen and doesn't expect it to turn aggressive. She thinks my body is doing a fantastic job of keeping it at bay.  I am going to continue to stay healthy and do lol I can until I get my meds.  She thinks I will be undetected in a week after I get them.  I wish I knew where I got this thing! But I guess I just have to move forward!   Thanks again

[KimInTheForest]

That's the spirit, Worried. It's all about moving forward at this point. I am sure the new treatments will work for you - whenever you get them.

kim

[MaryC]

Worried55,
I wasted a lot of energy when I was initially diagnosed trying to figure out how and when I was infected with this virus. I also started to sink into my own 'pity party'. It wasn't healthy or helpful for me since I may never really know the answer to these questions.

You've come to the right place for information and support for sure.

Your attitude of acceptance and living healthy is awesome. Continue to fight for your meds!  Perseverance will prevail though it might be a challenging road ahead. It is worth the fight. 

Best to you,
Mary

[BG]

Hi Worried,

I definitely went through a period of sadness when I found out about my HCV infection after having it for probably 40 years. Hang on, hope and take care of myself is what I did for the next eight years after finding out. For me it took a lot of changes. When I went through the pegintron and ribaviron treatment for 54 weeks of hell, I had no insurance and the drug company supplied the drugs at no cost. (bless them) Unfortunately I was a nonresponder. I couldn't even get health insurance because of the pre-existing condition I had. Thanks to the new health laws (Obama care) I finally got into regular doctor visits, a referral to Lahey Hospital and treatment with Harvoni--and so far, after 6 months I am virus free. Harvoni for six months at $1250 per pill is mind-bending. when finally I got treatment again I was on medicare and got the best supplemental policy I could, and still the out of pocket cost would have been unreachable to me. This time a very caring pharmacist helped by getting me enrolled with the Patient Access Network. All out of pocket costs were taken care of by this organization.

The point is, Hep C need not be a hopeless situation, but it is long term fight. Turn over every stone for help with getting treatment, ask questions and try to keep moving forward. Above all, keep focused on all good things and take care of yourself. It sounds as if you are doing that. Keep it up.

Best wishes,
Bill

[taliah]

I think it's normal to be sad to find out about HCV. I found out when I was 16 and I probably had it since I was 1. I'm 27 now. I spent a lot of my formative years convinced I was going to die young. I think my parents were convinced my emo-ness was because of being a teenager, but at least some of my fascination with death was due to finding out I had HCV. I was very driven and I accomplished quite a bit, that I think I woudn't have otherwise. You know how they say, "Live everyday like it's your last"? Well, having HCV really made that saying real for me.

Although, I also never seriously considered marriage until Solvaldi because I thought it didn't make sense.

The good news is that even though I've had it for basically my entire life, my liver numbers are still all in the healthy range and there is no sign of cirrhosis. So having HCV does not mean you can't live a normal life (though of course, it's better to be treated). I am as healthy/active/energetic as any of my peers, except those that are serious health nuts. My viral count is extremely low. The only exception for me is that I don't drink alcohol, but I never liked the taste or experience anyway.

I think the news that you might die early comes as a shock to everyone--but really, there are no guarantees in life. Anybody can die at any time. I could cure myself of HCV and die in a car crash the next day. So you can't know for a fact that HCV would actually affect the course of your life.

I would hang on and work through this emotionally. And push back at insurance, if they try to deny you. But also keep your hopes up because I do hear there are cheaper drugs coming out (with shorter treatment duration), since there is so much money in HCV cures.