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Hepatitis C Research

Prognosis

  • By hcv30yrsurvivor

    One of the areas of HCV research that I have been very disappointed in is the lack of information about what happens if you have been infected 10, 20, 30 years. We have known about this disease long enough to have decent information. The one study everyone quotes was a 20 year study but after 20 years most of the patients were in their 60’s and started to die from other causes. I have been infected for 30 years and have no data to make any sort of decision.

    I know my life insurance company thinks I am a high risk because I am paying 3 times what I should pay for my age and health. My health insurance company seems to think there is no reason to treat because I have lived with it for so long without any issues. So which is it? It can’t be both.

    I have waited 30 years for an effective treatment. At my last doctor’s visit my doctor told me my numbers were low and I should wait. Wait for what? Right now I am waiting on insurance to decide if they will let me get treatment. They currently only cover the treatment with the highest side effects and I assume the lowest cost for them. It is nice to now that my health is so important to them.

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  • By Meaghan Coneys Moderator

    Hi hcv30yrsurvivor,

    Thank you for your post and thank you for sharing your experience. I am sorry to hear you are waiting to receive the treatment you need. It can be so frustrating dealing with insurance companies, doctors, and having to wait until you are told it’s the right time for you to get treatment. I thought you would maybe find the following link helpful – https://hepatitisc.net/living-with-hep-c/hep-c-resources/. There are some resources listed you may be interested in checking out regarding treatment, clinical trials, and various support. Apologies in advance if you’ve already tapped into some of these resources (as you’ve been living with HCV for quite some time) however I felt I would send anyways just in case. Again, thanks for posting your comment. We are happy you are a part of our community and love hearing from you. Wishing you all the best today.

    Warmly,

    Meaghan (HepatitisC.net Team)

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  • By hcv30yrsurvivor

    Thank you for your response. I guess there really is nothing new. As an update, my insurance decided to go against my doctor and prescribe the cheaper therapy with more side effects. My first blood work on therapy at 4 weeks shows basically no viral response. These are suppose to be great new therapies but the only thing great about them is the price. I will finish out or at least get someone to agree that this is a complete non-response so I get try a real therapy. Probably now resistant to Protease and NS5b inhibitors… Only one mechanism left.

    One other thing, any trial that shows 100% response is either lying or cheating. We have been lied to for far to long. Is there anyway to combine patients experiences here to get a “real” response rate?

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  • By Cas

    I did 12 weeks of Harvoni. I am almost to my one year svr bloodwork to make sure. I am anemic which is weird as I was always way high iron levels in my blood. I get shots and am asked if I am on blood thinners…I have never been a bleeder before and I am 49 years old. I am still fatigued all the time yet cant sleep at night. All of which I can deal with as long as I am not dying. I can eat more spinach and work on the fatigue and non sleep as long as I can watch my grandkids grow up. Now as for insurance…I was denied 4 times and got angry. I wrote emails to state reps, governor, anyone I could think of…this Senator (Democrat) took a stand for me(a republican) right? How funny..yet he is the one that got me approved. Im not changing my politics but I would vote for him.

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