I can understand your frustration. At least you don't appear to have any fibrosis so you do have time on your side. Ideally of course you'd want to clear the virus while that remains that way. Keep at the insurance companies but they prioritize tx hoping people like you can hang in long enough until the patent expires or there is a cheaper possibly shorter alternative...which is likely in the future I believe. So many new drugs will continue to come out.
At this time I'd honestly be looking at having tx couriered from India if you are in the US...that's legal and what I'd be doing...although I'm in Canada and the rules would require me to personally go to India and bring it in with me...it's not allowed to be couriered here. All you need is an RX from your Dr and you can import 12 weeks of tx. It's not very expensive to do it either. Everything you need to know is here.
Thanks for the update and adding some of your background. It does help us relate to you and understand things better. I know the anger that you're feeling. You're among a lot of people that have been where you are or remain in lockstep with you. As soon as these new DAA's hit the market, every provider, including the government agencies in the USA and abroad, started this denial process as soon as they realized the cost involved. I call it piss poor planning, among other things. Everyone has the right to recover R&D costs and some reasonable profit, but this is ridiculous.
Keep up your healthy lifestyle, it does make a difference. I contracted the virus in 81 due to a similar tattoo party and wasn't cured until 2013. I didn't find out I was positive til 96, and trashed my liver before and for a few years after I failed treatment the first time. It's a slow progressing disease and I fortunately didn't destroy my liver by the abuse I put it through. Since your liver appears in good shape, according to your history, you've got some time to get this figured out. I don't think they will be able to continue this treatment denial based on liver fibrosis for long. The lid on that box of hornets was removed and they aren't going to get that swarm back in the box. Something is going to have to be done and I think it will be a new approach with financing, improved treatments and some cheaper options. The next two years will hopefully show us the needed changes. In the meantime, I plan to be a squeaky wheel whenever possible.
Hang in there and know that we're here to listen. Lots of good people here and if you need to vent, fire away. Just do yourself a favor and try to not let the anger eat you alive. It's easy if you let it happen. You'll get this figured out and I hope you feel like you can count on us to help you through it.
squeezemylemon said
Sep 24, 2015
History? Ok. Picked up HCV at a tattoo party I'm thinking between May and June 2002. Dumbest decision I've ever made. Stopped drinking when I was diagnosed in 2008. Never been much of a drug user, aside from a little bit of pot here and there.
Had a biopsy last year. Denied treatment 6/29/15 for being too healthy, which is what eats away at me daily. Excuse the hell out of me for exercising, trying to eat right, and staying away from alcohol. Haven't had a cigarette since 2/10/14. I absolutely despise my doctor. He laid down and rolled over like a dog instead of fighting for me. I spend most of my time frustrated and angry. All the things I used to love mean nothing to me anymore--except for music.
I guess I'm not going to find a lawyer to take my case after 26 attempts at representation. Just thoroughly pissed right now, I guess. Fortunately my anger fuels my workouts. Be just my luck that I croak from a stress-related heart attack right before I'm able to get treatment. Sorry, talking about it doesn't make me feel any better, makes me even angrier. So that's me.
wmlj1960 said
Sep 23, 2015
Hi James.
I was also denied coverage for treatment but was approved after an appeal and additional testing to rate how damaged my liver was. Have you had a biopsy, fibrosure or fibroscan test done?
Feel free to look around the site and note the search function you can use to view previous threads on a subject you have questions about. If you don't find a sufficient answer that way feel free to start a new thread on that subject. Also, in case you are un-familiar with some of the abbreviations you see there is a thread with definitions posted by mallani here:
We have plenty of knowledgeable and helpful members who are glad to help. So make yourself at home. We're glad your here. Welcome to the group.
Groupergetter said
Sep 23, 2015
Hi James, and welcome. Like your name (my son's name as well) :) There are many here who know first hand your frustrations in trying to get approval, myself included. VERY VERY FRUSTRATING!!! If you do a search of threads you'll find a number of folks that have jumped through the burning hoops. What insurance do you have? What state do you live in? Depending upon your circumstances, persistence may make the difference. As Tig said, with a bit more info members may be able to give insight. Take care.
Tig said
Sep 23, 2015
Hi James,
Welcome to the forum! Sorry you're getting the run around from your providers, it seems to be very common these days. We discuss this often around here, even today there has been some conversation on it. It's a global problem and you're absolutely right, there has to be a resolution found, and soon.
Please tell us a little about yourself. Can you tell us about your history? It helps us understand your situation better if we know your genotype, lab values, fibrosis stage and if you've treated before. If you add it to your signature line, it accompanies your future posts.
There will be others come along to greet you soon. It's a good group, I'm glad you found us too! Good luck...
squeezemylemon said
Sep 23, 2015
Hi Everyone,
I am glad I found this forum. I spend most of my time furious, frustrated and angry because of my health insurance provider's denial of my Harvoni prescription. I've almost sworn off all doctors unless I need emergency medical attention, I have a newly formed hatred of insurance companies, and I've always known that lawyers are sneaky bloodsuckers, but now that I need one more than ever, I can't PAY to get an attorney to take my case.
I am absolutely appalled that there is a cure for Hep C, yet because of the ridiculous pricetag, only the wealthy will be cured. Safe to say I should just hang on for another 7 years until Gilead's patent expires and I may be able to get affordable curative medication?
I can understand your frustration. At least you don't appear to have any fibrosis so you do have time on your side. Ideally of course you'd want to clear the virus while that remains that way. Keep at the insurance companies but they prioritize tx hoping people like you can hang in long enough until the patent expires or there is a cheaper possibly shorter alternative...which is likely in the future I believe. So many new drugs will continue to come out.
At this time I'd honestly be looking at having tx couriered from India if you are in the US...that's legal and what I'd be doing...although I'm in Canada and the rules would require me to personally go to India and bring it in with me...it's not allowed to be couriered here. All you need is an RX from your Dr and you can import 12 weeks of tx. It's not very expensive to do it either. Everything you need to know is here.
Check out this blog...
blogs.hepmag.com/gregjefferys/
Hi James,
Thanks for the update and adding some of your background. It does help us relate to you and understand things better. I know the anger that you're feeling. You're among a lot of people that have been where you are or remain in lockstep with you. As soon as these new DAA's hit the market, every provider, including the government agencies in the USA and abroad, started this denial process as soon as they realized the cost involved. I call it piss poor planning, among other things. Everyone has the right to recover R&D costs and some reasonable profit, but this is ridiculous.
Keep up your healthy lifestyle, it does make a difference. I contracted the virus in 81 due to a similar tattoo party and wasn't cured until 2013. I didn't find out I was positive til 96, and trashed my liver before and for a few years after I failed treatment the first time. It's a slow progressing disease and I fortunately didn't destroy my liver by the abuse I put it through. Since your liver appears in good shape, according to your history, you've got some time to get this figured out. I don't think they will be able to continue this treatment denial based on liver fibrosis for long. The lid on that box of hornets was removed and they aren't going to get that swarm back in the box. Something is going to have to be done and I think it will be a new approach with financing, improved treatments and some cheaper options. The next two years will hopefully show us the needed changes. In the meantime, I plan to be a squeaky wheel whenever possible.
Hang in there and know that we're here to listen. Lots of good people here and if you need to vent, fire away. Just do yourself a favor and try to not let the anger eat you alive. It's easy if you let it happen. You'll get this figured out and I hope you feel like you can count on us to help you through it.
History? Ok. Picked up HCV at a tattoo party I'm thinking between May and June 2002. Dumbest decision I've ever made. Stopped drinking when I was diagnosed in 2008. Never been much of a drug user, aside from a little bit of pot here and there.
Had a biopsy last year. Denied treatment 6/29/15 for being too healthy, which is what eats away at me daily. Excuse the hell out of me for exercising, trying to eat right, and staying away from alcohol. Haven't had a cigarette since 2/10/14. I absolutely despise my doctor. He laid down and rolled over like a dog instead of fighting for me. I spend most of my time frustrated and angry. All the things I used to love mean nothing to me anymore--except for music.
I guess I'm not going to find a lawyer to take my case after 26 attempts at representation. Just thoroughly pissed right now, I guess. Fortunately my anger fuels my workouts. Be just my luck that I croak from a stress-related heart attack right before I'm able to get treatment. Sorry, talking about it doesn't make me feel any better, makes me even angrier. So that's me.
Hi James.
I was also denied coverage for treatment but was approved after an appeal and additional testing to rate how damaged my liver was. Have you had a biopsy, fibrosure or fibroscan test done?
Feel free to look around the site and note the search function you can use to view previous threads on a subject you have questions about. If you don't find a sufficient answer that way feel free to start a new thread on that subject. Also, in case you are un-familiar with some of the abbreviations you see there is a thread with definitions posted by mallani here:
http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/
We have plenty of knowledgeable and helpful members who are glad to help. So make yourself at home. We're glad your here. Welcome to the group.
Hi James, and welcome. Like your name (my son's name as well) :) There are many here who know first hand your frustrations in trying to get approval, myself included. VERY VERY FRUSTRATING!!! If you do a search of threads you'll find a number of folks that have jumped through the burning hoops. What insurance do you have? What state do you live in? Depending upon your circumstances, persistence may make the difference. As Tig said, with a bit more info members may be able to give insight. Take care.
Hi James,
Welcome to the forum! Sorry you're getting the run around from your providers, it seems to be very common these days. We discuss this often around here, even today there has been some conversation on it. It's a global problem and you're absolutely right, there has to be a resolution found, and soon.
Please tell us a little about yourself. Can you tell us about your history? It helps us understand your situation better if we know your genotype, lab values, fibrosis stage and if you've treated before. If you add it to your signature line, it accompanies your future posts.
There will be others come along to greet you soon. It's a good group, I'm glad you found us too! Good luck...
Hi Everyone,
I am glad I found this forum. I spend most of my time furious, frustrated and angry because of my health insurance provider's denial of my Harvoni prescription. I've almost sworn off all doctors unless I need emergency medical attention, I have a newly formed hatred of insurance companies, and I've always known that lawyers are sneaky bloodsuckers, but now that I need one more than ever, I can't PAY to get an attorney to take my case.
I am absolutely appalled that there is a cure for Hep C, yet because of the ridiculous pricetag, only the wealthy will be cured. Safe to say I should just hang on for another 7 years until Gilead's patent expires and I may be able to get affordable curative medication?