So.this is the right place to acknowledge. Your frustration or anger its no problem as most of us have had it at one time or another. We all understand. Your a great example of. Being very knowledgeable. About what you need to do. So lets see if we can find somewhere that can make thst happen. Thst place exists.we judt have to gind it.:.. if you need to vent in the meantime. Feel free to vent..
Brian1412 said
Jun 21, 2015
There is a place in iowa somewhere that can get you treatment. That you need. Be it Harvoni. Or one of the others
I have sugested to before check with the support groups in the bigger towns preferably. A university. The people in those sipport groups know where the doors. Are. Who the right drs are etc. I had the same problem and that is how i got the expensive stuff which if it sticks. I beat the dragon in fairly short time
Rubye said
Jun 21, 2015
I certainly understand your frustration. The thing is I seriously doubt that any state would go bankrupt if they treated everyone who has Hep C. Gilead has offered most of the states very good deals and some state medicaids have refused the deals because Gilead wants them to treat everyone and they don't want to bear that cost. When Sovaldi first came out it was really very simple and then different groups got involved and made it complicated. One of those groups was the AIDS people. They sent letters to all the state medicaid programs asking the states not to fund treatment unless the patient has cirrhosis and one or two other problems. For example, I have cirrhosis along with neuropathy and so was able to gain treatment. Still, it was not easy and I had to see several doctors before I found someone who would give me a prescription.
All I can say is don't give up. Make noise. At one point a local newspaper did an article on me about how I was not able to get treatment even with cirrhosis, and I have Medicare and medicaid only as a secondary insurance. That same week I was given the prescription and was approved by my insurance. I feel extremely lucky to have treated and guilty that so many others are not able to treat. You are right that it is easier to get treatment if you are older. I'm 67 and had Hep C for 40 years. I had longer to get sicker. I'm sorry you are having to cope with this. Most people with insurance get Harvoni quickly and easily and so don't relate to what you are saying here. My suggestion is talk to everyone and anyone who will listen and just don't give up. However, it will help to lose calling people names. Take care and good luck to you.
Tig said
Jun 21, 2015
Hey Robin,
Sorry you're getting the run around Bro. But honestly, it's not the fault of the Harvoni warriors here or anywhere. Everyone is simply trying to rid themselves of this virus. Some get it, many don't. What we can try to do is brainstorm and network together until we all find a way. The current state of healthcare in the US and the way it's being administered, is presenting problems for too many people. Let's do what we can to fix it. Right now it looks like there's no end in sight, but instead of giving in, we step up and try harder to make it right. One day at a time Robin...
It wasn't until 1-2 years ago that the Sovaldi protocols became available for use outside of the trials. Until then all we had was Interferon, Riba and maybe Incivek or Victrelis. Those were horrible protocols, and like Harvoni or Sovaldi and Riba or Sovaldi and Olysio, some got it, and many didn't. Actually, many started and couldn't finish it for breakthrough or terrible side effects. The difference, aside from SVR rates, was absolutely no mention of it on TV, radio or in print. Nobody seemed to care then either and the stigma kept many of us from talking about it. That's what brought the owners of this forum to set up this place. A place where we can all get together and vent, seek support and listen. We're listening Brother and understand. I hope you give us a chance. Our skin is thick, but remember, we're friends.
Have you contacted all of the organizations on our Payment Assistance page? Not just Gilead's Support Path, there are many others. There are also trials still ongoing. Have you contacted the Iowa Attorney General and Insurance Commissioner's offices? They have helped many people here, it's worth trying. If there's anything you need help with, I hope you let me know or anyone for that matter. We do care, trust me on that one.
Greg D said
Jun 21, 2015
The coffee's on and the door is always open Robin.
Trainhopper said
Jun 21, 2015
its whatever.... to be honest about ****.... the reason I havent been around is because every time im on it's harvoni this harvoni that.... well mother****ers my ammonia lvls stay around 100/mmol a day with 3600ml of lactulose monthly.... still (having my second painful as all hell biopsy) am a fibrosis lvl 1.75? not a solid 2 but declaring such....and still im denied for (reasonably price) hep c treatment pills? Even in the early 2000's my treatment has been the cheapest....IN FACT OVER THE WHOLE COURSE OF HEP C TREATMENT MINE'S ALWAYS BEEN THE CHEAPEST! So ya im not gonna hang around a chat where people preach harvoni... when kids like me are honestly dying from no sav/rib.... so in closing...... im sorry for my outburst.... (really I'm not I'm just being polite).....Im sure I was one of the most combative in here.... but to be honest..... if no one stops to think what true **** is happening.... And I know my geno type is rare..... But god dammit no compassion from anyone.... just harvoni harvoni ****in harvoni....even ****in commercials.... AS I slow slip into senility caused from ammonia build up in my blood.... As a once very active man who faught colorado river fires who hopped trains, who welded who... who... who did a **** ton in 20 years muscles cramp so bad he cries out from just the morning stetch and yawn slowly dies from the inside.... *another harvoni commercial*
Trainhopper said
Jun 21, 2015
all of it is federal dude.... still the states govern it... like food stamps... do you go to a fed office for food stamps? no you go to a county office.... it's bankrupting the state while they wait for federal funding to kick in. I mean just ask a hep DR or a gastro DR like 4 have said the same thing to me.... Compassionate care act and the cost of harvoni is bankrupting the system.... I'm glad it works so well. But you have people like me with geno type 2b that it does nothing for and am being denied care because of the cost. Also I never claimed that that harvoni is wrecking the system.... It was broke to begin with. Like I said before medicare/medicaid in most states is paying for it (im glad they are) but I was on my way to being approved, (even tho my pills cost way less than harvoni) but was denied a 4th time because (and this is what my 3rd....count it 3RD Dr said...."harvoni is wrecking the healthcare system.... especially state/fed funded ones....) Lets put it this way.... 1.5 years ago a case sort-of like mine was approved for Sav/Rib with a fib lvl 2... I have hepatic enecphilopathy.... and still dont/ wont qualify for my even cheaper pills! Basically (even if I get booted from this forum) NOONE IS THINKING ABOUT THE REPERCUSSIONS OF HARVONI! I'm denied over a guy whos 70 and in end stages of cir.? WTF is this society coming to? a 35 y/o/m with a fib lvl 2 cant get treatment but.... But a dude who has already lived his life (and no matter what pills you take it wont cure cir.), get the most exspensive treatment alvail. on the taxpayers dollar? I mean even business sense dictates the younger will pay more back in time.... any way (insert name here), like I said its a good thing it works but kids like me? left to the F*CKIN DOGS my lat note.... LMFAO YA DUDE THEY ARE COVERING IT THUS.... MY BITCHING!!!
Brian1412 said
Jun 14, 2015
Just courious about a thing in your post regarding Harvoni. Is bankrupting many states. Medicaid. And Medicare? Medicaid. Will certainly. Bankrupt. The states who extended. It . Medicare is a federal. Program. The fact that only 10 million people signed. Up out of 330. million prople puts more on the states. Thst expanded. It sure is a mess but harvoni. Is not the cause.
If i understand. Correctly they arent covering Harvoni. For you? I guarantee either a university. Hospital system or a county system has access. To get you the script gratis. We hsve found the best place to find this is thru the hep c support groups. Locally. And or the universities. Systems. It works just s little hard to find. Check with the support groups in your area::
Good luck
Trainhopper said
Jun 14, 2015
Hey guys and gals.... Been a while I know I know..... I have just been really busy with trying to live life lol. So here's where I am at. I move/live in Iowa Now.....It sucks here but most places do. I am buying a house with my girlfriend here..... Again it sucks but is what it is. I will be seeing a judge about my SSI... Apparently (this is great) They have decided to take me off my disability. They stated that my hep c is better (even though I have had no treatment in the 20 years I have had it). All this comes as Iowa is deciding whether or not to allow fibrosis lvl 3 and under access to meds. This coming in the wake of Harvoni.... Harvoni is bankrupting a lot of states (the ones who pay for it on medicaid/medicare) and up until then Iowa was considering allowing people (like me with fib.1 and a non interferon Rx) access to the non-interferon meds (savoldi yadda yadda..... I know I spelled it wrong) Lol so.... if they do decide to allow it I may be screwed anyway by losing my SSI. Enough about me..... How is everyone? Cinn? Tig? all the usuals? I hope things in everyones life is good.... or as good as can be expected.... I will try and be more active... This forum has helped me in a great many ways, I just wish I could be here more often Talk to you all soon ( I hope lol)
-- Edited by Trainhopper on Sunday 14th of June 2015 01:16:38 PM
So.this is the right place to acknowledge. Your frustration or anger its no problem as most of us have had it at one time or another. We all understand. Your a great example of. Being very knowledgeable. About what you need to do. So lets see if we can find somewhere that can make thst happen. Thst place exists.we judt have to gind it.:.. if you need to vent in the meantime. Feel free to vent..
I have sugested to before check with the support groups in the bigger towns preferably. A university. The people in those sipport groups know where the doors. Are. Who the right drs are etc. I had the same problem and that is how i got the expensive stuff which if it sticks. I beat the dragon in fairly short time
I certainly understand your frustration. The thing is I seriously doubt that any state would go bankrupt if they treated everyone who has Hep C. Gilead has offered most of the states very good deals and some state medicaids have refused the deals because Gilead wants them to treat everyone and they don't want to bear that cost. When Sovaldi first came out it was really very simple and then different groups got involved and made it complicated. One of those groups was the AIDS people. They sent letters to all the state medicaid programs asking the states not to fund treatment unless the patient has cirrhosis and one or two other problems. For example, I have cirrhosis along with neuropathy and so was able to gain treatment. Still, it was not easy and I had to see several doctors before I found someone who would give me a prescription.
All I can say is don't give up. Make noise. At one point a local newspaper did an article on me about how I was not able to get treatment even with cirrhosis, and I have Medicare and medicaid only as a secondary insurance. That same week I was given the prescription and was approved by my insurance. I feel extremely lucky to have treated and guilty that so many others are not able to treat. You are right that it is easier to get treatment if you are older. I'm 67 and had Hep C for 40 years. I had longer to get sicker. I'm sorry you are having to cope with this. Most people with insurance get Harvoni quickly and easily and so don't relate to what you are saying here. My suggestion is talk to everyone and anyone who will listen and just don't give up. However, it will help to lose calling people names. Take care and good luck to you.
Hey Robin,
Sorry you're getting the run around Bro. But honestly, it's not the fault of the Harvoni warriors here or anywhere. Everyone is simply trying to rid themselves of this virus. Some get it, many don't. What we can try to do is brainstorm and network together until we all find a way. The current state of healthcare in the US and the way it's being administered, is presenting problems for too many people. Let's do what we can to fix it. Right now it looks like there's no end in sight, but instead of giving in, we step up and try harder to make it right. One day at a time Robin...
It wasn't until 1-2 years ago that the Sovaldi protocols became available for use outside of the trials. Until then all we had was Interferon, Riba and maybe Incivek or Victrelis. Those were horrible protocols, and like Harvoni or Sovaldi and Riba or Sovaldi and Olysio, some got it, and many didn't. Actually, many started and couldn't finish it for breakthrough or terrible side effects. The difference, aside from SVR rates, was absolutely no mention of it on TV, radio or in print. Nobody seemed to care then either and the stigma kept many of us from talking about it. That's what brought the owners of this forum to set up this place. A place where we can all get together and vent, seek support and listen. We're listening Brother and understand. I hope you give us a chance. Our skin is thick, but remember, we're friends.
Have you contacted all of the organizations on our Payment Assistance page? Not just Gilead's Support Path, there are many others. There are also trials still ongoing. Have you contacted the Iowa Attorney General and Insurance Commissioner's offices? They have helped many people here, it's worth trying. If there's anything you need help with, I hope you let me know or anyone for that matter. We do care, trust me on that one.
The coffee's on and the door is always open Robin.
Basically (even if I get booted from this forum) NOONE IS THINKING ABOUT THE REPERCUSSIONS OF HARVONI! I'm denied over a guy whos 70 and in end stages of cir.? WTF is this society coming to? a 35 y/o/m with a fib lvl 2 cant get treatment but.... But a dude who has already lived his life (and no matter what pills you take it wont cure cir.), get the most exspensive treatment alvail. on the taxpayers dollar? I mean even business sense dictates the younger will pay more back in time.... any way (insert name here), like I said its a good thing it works but kids like me? left to the F*CKIN DOGS
my lat note.... LMFAO YA DUDE THEY ARE COVERING IT THUS.... MY BITCHING!!!
Talk to you all soon ( I hope lol)
-- Edited by Trainhopper on Sunday 14th of June 2015 01:16:38 PM