Hi TK, hopefully SupportPath will take care of your med costs.  You would still be able to use the PAN $ to cover doctor visit deductibles and any associated testing during tx.  Man, I hope they come through for you soon.  From what I've read they're great at helping out folks in your situation.  

Thanks Mike,

I think i get it now, my scrips for the samr meds as yours have been at the speciality pharmacy for monthsmy insurence justs keeps dening them. anyway its good to kmow it i get some help from support which is where im at with all this and i still have a copay the pan card will help. glad to hear ur are going to get ur tx started. Heres wishing you SVR as soon as possible brother!

So i applied for PAN last week and i recievee a card and letter in the mail saying i was approved for a year. Does anyone know how much they will really cover? Should i call the speciality pharm to tell them i jave it? I have no exp with any of this....

Hi TK, just wanted to say hello and welcome.

I agree with what Malcolm and Tig have said about GS-5816/Sovaldi, and in your position I would want to wait for it to be approved, or if you can get into a trial that`s even better.

We`ve had many people here who have had very positive experiences of clinical trials... see our dedicated `Clinical Trial Participants` section.  There are also a couple of useful `sticky` threads in the same section which would give you some idea of how to evaluate a trial. 

If you wanted to get more feedback on that subject please feel free to start a new thread and I`m sure you`ll get some helpful replies.

All the best of luck with whatever you decide! 

Tig,

Just thought id update you and anyone else thats intrested, support path now has my imfo and is awaiting the request from the speciality pharmacy. I have been in contact with the person who runs the trials at univetsity of penn hospital, and they wete sent all my medical records, she thinks there may be a trial open immediatly or if not very soon. what is everyones opinions on trials?   The onevi was intrested in wss solvaldi and gs-5816, but they said they were done recruiting for that one. they are reviewing my records now and will be in touch soon i hope!!

Thanks Tig,

I appreciate the encouragement.  How many of us lose Harvoni in the 3rd, 4th month, even after initial approval from insurance? It is such a sad story...

BYW, I was UND (orig. 6 mil) after 4 weeks and will get my 12 wk labs next week.

Thank you again, Tig. 

Hi Joann,

So glad to hear you're just about over! You can do six more days standing on your head, lol! Okay, maybe not but it would fun to see. Please let us know how it goes. SVR is near!

Congratulations on going after them and getting things accomplished so quickly. I have mentioned that course before and it works. I'm glad you didn't give them any choice. That's the way it should be, but we shouldn't have to fight tooth and nail to obtain the care. Good for you!!!

Might be better to start a new thread in the General Discussion section to discuss the outrageous costs of these treatments. If you don't find an established thread (should be) you can use it or start a new one with a title that fits your topic. It's always important to fight for what's right!

Tig

Hi Bill,

After my 3rd month denial from Express Scripts, I got so upset that I called Attorney General's Office.  He called insurance company here in CT.  The meds came the next day!

 I also called Fox news, so now if we want one, we have an actual empethetic reporter who is interested in our stories, the good, the bad and the ugly.

 Personally, I am just not sure how much to tell.

What do you guys think about going public with this?  Should we start a new post or no?  The cost of this genius drug is untenable, unless you go to jail where there is money waiting for you.

6 days Harvoni left!! Yaaaaaaaaaaaaaaaaay!!!!

Tig,

Your info is great! I was just on that trials site a fee days ago a couldnt find any active ones, i used ur link and emailed them. i am only 40 miles from philadelphia. i will be calling support path in an hour also. i think this forum is great and cant wait to start a thread in the " on tx section"

TK,

The Sov/GS5816 trials are in Phase 2 and 3 now and as Malcolm mentioned, should be released within the year. I checked the clinical trials website and found there is still a Phase 2 trial recruiting for that protocol, along with GS-9857 (pan-genotypic protease). It's a 6 week trial. You could ask your physician to look into it for you and see if you qualify. Often there are area physicians that run these studies. It's another option for you to check into if interested. There is no charge if you're accepted. If you're in PA, there is a trial center in Philly and Pittsburgh handling it.. Here's the link to that information. The trial I'm talking about is the first arm listed. The contact and location info is at the bottom. If you need any help deciphering it let me know.

https://clinicaltrials.gov/ct2/show/study/NCT02378961?term=Gilead+GS+5816+HCV&rank=4&show

Tig

WoW BJ what an amazing thread this is.

I must have had my feet up and dosed off on the train when you were writing most of this. Dave, Pl, Swimmer,Brian Matt, Tig, TK  I'm happy that all this has been done and everyone is either on the train or getting on soon. Although I missed this thread and Just fought my own little battle it's the same story. the most important things being said here is we have to be the one that gets involved in the fight and appeals. My case Because The coupon for 12 weeks half of my TX was up and because I need 24 weeks.  I did very similar things BJ recommends filled out the Appeal best I could sent income etc.  

I'm treating at Weill Cornell NYC they have been getting things done for me I did very little. I got lazy and shame on me for that. I thought all was well. 

When your doctor doesn't seem to be able to just get you a pass better start getting an education on being your own advocate right away. It's not as hard as you may think. BJ mapped out a great plan here and it worked for me as well. A key items is getting them to understand you mean business. You have Dr approvals and prescriptions so fight  When done right it will let them know they can't placate you or send you down other roads to apply for funding if you have insurance. you aren't asking for it for free.  I reminded them about the GS 7977 phase II trials thy squashed  2 years ago. I said lawyer I reminded them their own prescribing information reads I should get 24 weeks How could you cut me off I have 80% insurance. and kept saying I have 7 pills left now I have 6. I may relapse will you take my insurance again?

That Harvoni support path team must be huge. And everyone one I got on the phone with tried to ask the same info i must have called 10 times and never got the same person even when I asked by name. But they have every thing you said in their computer You just have to remind them they are looking at it. in most cases they are asking you for Phone number and birth date thats how they enter your open file. reminding them brings them back on point and up to date so you don't have to repeat yourself.

My sister said follow the money and you'll find out where the hold up is. She was right 100% Gilead controls most of that. Lets say Gilead does have cost in R&D Well that's not all testing etc. Anybody recall how much it cost to buy the rights and patents for GS7977 Sofobusvir? And then they Can all money spent in R& D testing with BMS in 2011? 12?. Hey waht happened to delacisvier Add 2 year of R&D to make ledipisvier and work on the simpisvier that was off lable. Now add Lawyer protection and set-up the development of support path hotline all those people on the phone get paid and someone created that system. Protection in how to distribute around the world and protect it. I could go on but it's always been about the money. when people say well they deserve to get their money back I laugh. We are paying for everything I mentioned as well. We are paying for Gilead to protect their greed investment.   I find it funny that this new thread came up 10$ Copay in Bangladesh. I got a feeling with all the new meds coming out Harvoni my might fall. We will find it harder to get get Harvoni if new meds are much more affordable. Look at Abbive some insurances want us to go that route just cause it's cheaper.

I'm sorry if this now sounds like a debate and not a solution. But it does come back around to WE are our own advocate for now

I wish some agency that was neutral who really does know and can find out if any of this is a real factor or not. And do something about it  And what should we do if it is. I hate to say a Lawyer it's like saying should I hold this snake or the other? A Friend of mine would say Just take the Med you fought for and wash it down with some Shut T-F-U Juice LOL thanks for listing anyway. And again Really good info BJ 

BillS      

Hi Rich,

The IL28B genotype doesn't seem to matter anymore- it was important for Interferon combo treatments.

You can wait for GS-5816/ Sovaldi. The SVR rate should be 90-100%. It should be approved later this year.

At your age and VL, SVR chances with Sovaldi/Riba are 80-90%. I'd want 1200 mg/ day of Ribavirin- I took it for 48 weeks.

Best of luck.

Tig,

I am definitly going to call them mon morning, i checked out the link for te riba, it seems that for my weight id have to take 1000mg of that, although i checked out gileadcs website and it looks like they are in the middle of a stage 2 trial that combines solvaldi and some new thing (5816?) that eliminates the need for riba with all genotypes. im sure thats a year away but does look very promising.i have to dig out my latest test results and post all my numbers, ive made a habit of getting copies the past few times. but im almost positive my vl was under 100,000, thats thoudand not million, which is very low, but i am aware that vl doesnt mean a whole lot until ur in tx, and then u want it undectable. its been a battle for these meds to say the least but it will be worth it in the end. im hopful that support path will come through, which is probably best since my ins is a joke. its great to read that this thing is beatable, and im luckier then most when it comes to age and liver damage, so my hopes are still high. i honestly dont think hep c will be around in 15 years, as more and more better tx's come out and it becoms more affordable. i will post my numbers from labs as soon as i can!

TK,

I hope Support Path comes through as well. They have a well oiled machine there and if they can help you they will let you know quickly. But as I mentioned before, it's a good idea to contact them to introduce yourself and see how things are progressing. They will tell you what you need to know. Either way, stay positive and stay involved. If it isn't today, it will be tomorrow, you can count on that. Times are changing Brother, for the better!

There are several forms of Ribavirin, both brand names and generics. There are different strengths in both capsules, caplets and even a liquid form. So doses can be adjusted in literally all forms. Aside from the liquid, all forms start out at 200mg. Some forms list higher available strengths, but all I've seen provided is the 200mg size. That decision is your doctor's and pharmacy. I'm going to provide you a link to some information on it. It should help you understand it better.

I'm confident that you will defeat this beast soon. The opportunities are getting better all the time. I'm also sure you and your son can look forward to many years together! I found out when my daughter was 6, back in 96. I'm cured and she's 25 now. So do your best to not worry about this. I understand why you might be, but again, things are looking very good for people affected by this disease. Hang in there!

http://www.hepatitisc.uw.edu/page/treatment/drugs/ribavirin-drug

Tig

TIG,

Thanks for the info and encourgement. I do have the CC IL28B Gene for what its worth, and i do see a GI specialist, here in PA. My Dr. wrote the scripts for solvaldi and riba so long ago i would never think anyonewas still trying to get the meds for me id it wasnt for the speciality pharmacy calling me and having me fill out papers. i sent all the info for support path in last week and now i need a different paper becausethey dont want to give me the ribapack but instead the riba caps? i asked them what the difference was and they said one is a pill one is a capsual which is eaiser to adjust doses with. i really hope this support path comes through for me i am wayyyy under the income req, but ive had so much bad luck trying to get this stuff, ive read alot of posts on here since yrsterday and i see alot of people have been cured of this monster, im just hoping to be one of them, i have a 5 yo son who depends on it!

Hi TK,

I'm glad I could answer some of your questions. Anytime you have them, please ask. I want to point out the search function at the top of each page. Use one or two keywords and you'll find discussions we've had on the subject. We've got a lot of data and personal experiences here on the forum.

The favorable gene they are talking about is likely the IL28B gene. It is involved in the immune response to HCV. Variations in the IL28B gene have been linked to better treatment response among people with chronic HCV. The newest protocols, their effect and success based on this gene continue to be studied and debated. There are separate alleles (types) associated with the IL28B gene that determine sensitivity to different protocols. If you have that test information, you can share it if you like. Please feel free to share any of your test results. It helps us provide our opinions.

The issue of further fibrosis testing is a decision you and your doctor have to come to an agreement on. I feel it's important to trust the decisions made by your specialist. Are you seeing a board certified Gastroenterologist, or Hepatologist? Some see an Infectious Disease specialist as well. They know more than anyone about the specifics of this disease. Since you've received both an F1 and F3 result by Fibrosure, then there is going to be uncertainty. Your age, weight are in your favor. Do you know how you may have been infected? The length of chronic infection sometimes matters. You should know that with GT 3A, the treatment now is going to be Sovaldi and Ribavirin for 24 weeks here in the USA.. It doesn't matter what your fibrosis level is, it's the standard length of treatment.

Don't worry about the Ribavirin either. It may cause some side effects that are annoying, but they can be handled fairly easily. We can talk more once you get ready. It's totally doable! Don't believe everything you read on the Internet!

Nobody here is going to judge you over what you've done in the past. The drinking is a bad idea with Hep C, it's like gasonline on a fire. My advice is to put it all behind you, that's what matters.

I'm going to provide you with a link for some additional information on Hep C in general and the current protocols. It might help to answer a few questions. Will also give you one from here on our abbreviations and setting up your signature information if desired. There will always be questions, so don't hesitate to ask! Good luck...

Tig

http://www.hepmag.com/articles/2512_18756.shtml

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/

PS: What a game! GO ZAGS!  "ELITE 8" 

Support path sent my first bottle of Harvoni yesterday. I am feeling very grateful.

Stormy

sorry i hit send before i wanted to, but i am worried about 24 wks of riba, im in pretty good shape physically, im about to turn 34 on mon, am 5'10, and 165lbs. i have heard this tx is easier to tolerate then interferion was, but i almost wish they would have just prescribed me something i could of got. i do have that favorable gene with my 3a if u know what i mean, i forget exactaly whatthats called. anyway im watching Gonzaga play ucla at the moment, i see ur a fan so Go Zags!

Tig,

Thank you for ur quick reply, i had a biopsey back in 2009 which showed stage 1, the dr does not want me tohave another one of those, even though i said i would go through it. they also told me the nearest place to have a scan done is 600 miles away so again not an option. i know i will catch hell from people but i had been drinking the nigjt before i had my bllod drawn for the first fibrosure test. i have since stopped such behavior after seeing that F3 grade. the second test i was obviously not drinking well rested and it came back F1 close to F2 with necroactivity score of 1. I am goimg to call support path on mon to check in. i also just filled out the application for PAN. from what i have learned the 24 weeks i will need are going to be expemsive so 

Hi TK,

Welcome to the forum! I'm glad you found us. We have both supportive and helpful members here and a lot of experience with these issues. I know you'll be getting some useful suggestions.

I would certainly make a call to Support Path. The specialty pharmacy will work for you, but at their own pace. It doesn't hurt to call and ask if they have heard anything yet. We have heard that they sometimes need authorization from your doctor. A call may open a door up a bit quicker. If you need their contact information, the link in my signature, the red Payment Assistance, will take you to that info.

Is there a possibility your doctor can order a Fibroscan, MRI or biopsy to get an accurate fibrosis determination? The Fibrosure test is inaccurate at the high and low ends of the spectrum. Your test results seem to put you at each end of that, so if you want to know your actual fibrosis stage, discuss these other options with your doctor. Regardless, you will still need 24 weeks as a GT 3.

Stay positive and forever active in your care. You're your own best advocate, make sure your healthcare team knows you plan to be involved. Get copies of your reports, lab tests and anything else you think you need. Maintain your own file. I missed out on a trial once because I failed to do that. I just didn't think I'd need it two decades later. Those documents are yours, get copies!

If you need any other information, just ask and we'll do our best to help you find it. Keep us informed on your progress and good luck!

Tig

Thanks for the tip Brian! That's good to know.

Tig

Yes, I think the support path people are awesome.  Again, I highly stress to make yourself know to the ones in the daytime. What a a great group of compassionate people. . Evil Pharma ......

Thanks Tig!!  You and the others have been a big help and support since I've been on board here a year already..You guys are great and the wealth of information is incomparable..

WOOT! These are the stories we are happy to hear and share. This is what happens when friends help friends! Working together as a team is what makes this place great. Good job BJ! PL, it's your turn and we're here for you. But you're going to do very well I'm sure of it. Everything you've accomplished has been successful and so will this!

Tig

I'm here to attest to Gilead Support Path works too!  And thanks to BJ who posted what to do below in this thread.  I followed it, and was accepted by Support Path and just received Harvoni today after 2 denials by United Healthcare. I'm positive and excited to get this new lease on life!  Thank you guys!

Still trucking along with my Harvoni from Gilead's Support Path.  Got my 2nd bottle on Thursday.  I ordered it while I still had some left just in case.  Order placed directly with Covance the pharmacy without any question or hassles. So far all is going great.  sometimes I wakeup with a headache (i take before bed) and maybe get a little tired but not much else.  I've also had a few cases of euphoria where I realize all of a sudden that "i feel pretty good, my  head is clear and I actually feel like doing something"  Not just that I have some energy to do something - but that I want to. what a HUGE change from old regimes!!

Thanks , you guys have been important in my journey to this point . I'll let y'all know how it's going 

Good to hear from you again, David, and what great news!

I remember you were having difficulties getting approval for Sovaldi and it`s great that the Support Path came through for you.

Having a supportive doctor and being proactive yourself makes a real difference, and it`s good to hear how easy the process was in the end.  We`ve heard this from others here too.

Thanks for your encouraging update and all the best of luck with your treatment!

Keep in touch! 

Hi David,

Outstanding! I'm so glad you were able to get the help of Support Path! What a relief to get started on such a good protocol. Let us know how it progresses and good luck!

Tig

Hey All , I haven't posted in a while but am a regular reader , and this is my go-to spot for info . I was denied twice by my ins. over the last drawn out 9 months or so , only an f 0-1 , but was accepted into the support path with relative ease . I'm now on day 3 of 12 weeks Solvaldi/Riba . I have a great support group that pushed it through beginning with my Doctor , but even without such help it seems clear the process is straight forward enough . Get denied twice and then apply for the program . 

Hoping for all of us to get this thing done !

What I don't understand is why doctor's don't want to provide documentation to Support Path. It's like they just don't want people to have a Gilead med.

I felt the same way about my Dr.  But stand your ground with him/her.  As far as Gilead's Support Path goes there is only one page with minimal info they need to complete.  Heck I did most of it for my Dr such as name, tele #, address , what medication - info I knew.  All he needed to enter was his tax ID, his license # & my dosage and sign/date.  

Sometimes I think they see those of us who successfully clear HepC as badges of honor.  who knows, maybe the get some "perks" from the pharma. companies when they prescribe these expensive drugs to their patients.  When we get the drug from Gilead they don't get this recognition (or "perk").  Plus these doctors can be so bloody arrogant.  Thinking that everything is going to happen according to their schedule - seems they have forgotten who they work for: YOU!!

What I don't understand is why doctor's don't want to provide documentation to Support Path. It's like they just don't want people to have a Gilead med.

Anyway, I am so glad more people are being able to treat but sad to hear how difficult it is to get there for so many of us.

My experience with Gilead's Support Path was that it took all of a browser button click to get my approval numbers for my specialty pharmacy. I am so thankful and extremely humbled that Gilead has this program available. They've been wonderful, as has my insurance company and CVS specialty pharmacy. My problem has been my doctor's incompetent staff.

Hey Brian,

Thank you for the update and good news! Maybe there's hope for the future after all... I certainly hope so. 

Tig

Thanks for the info Brian...I'm still in the midst of appeal #1 with United Healthcare.

The Reps ( all Companies were there ) all said the same thing.  It is the Dr that has to push them thru. They repeated that the insurance companies are numbers people , and the Dr had to charge at some of them. They also said  that they were negotiating who would be their prescription plan, company (whatever they are called)  and once that was set, that is when it all becomes easier.  I think I saw or they said the signed with  e- script ? something like that in WSJ

They all said that everyone that needed to get Harvoni from the company would indeed get it. Period. The Harvoni guy said the same.  They are Fast tract to 2.

All the reps were awesome, non competitive, and just wanted to get the right information out.  Help for all is very near.

Yes, but that is not profit.   That shows a well run insurance  company.

A couple  who was at this meeting in Miami, had experienced a major issue with their insurance Company, United Health .  The wife is the patient.  The insurance Company  denied her treatment over 3 times.   They had insurance thru , you guessed it , United Health, and was a company provided plan.

The Husband went down the hall, threw the  denials in the CEO's face, told him in many angry words GFYS!  The next morning  an overnight package was waiting on his desk. It was Harvoni.... I had a Testicular Cancer supportee with the same company. He thought they were the bomb, Until they dumped him mid treatment.

They are numbers people. no excuse but they is how they think.

Happy for you BJ.  I know the frustrations you've been through.  Your perseverance has paid off.....BIG TIME :) Good luck in your tx.  SVR SVR SVR.  Cheering you on.

Hallelujah BJ!!!  Good for you!  I'm still all caught up in the "process", but because of your help and your instructions it saved me a lot of time I'm sure...Hopefully, I'll be right behind you!

It's been a little over 2 weeks since sending in my application to Gilead's Support Path to see if I could get Harvoni from them and today I received my first bottle of Harvoni!

There are so many situations we go thru where it's such a pain in the butt to get results; jumping thru hoops one after another, being frustrated with lost paperwork or block headed operators.  Waiting and waiting and waiting.

I can honestly say this was the most pain free, organized, easiest and FASTEST process I have been thru in years.

I am so grateful to Gilead for providing me with this medication. 

I won't deny that my experience was a learning one and that I am very dismayed with my insurance company.  I also am not blinded by Gilead's generosity that something has to change with the cost of these medications and that Gilead plays a huge role in all that.  It is a little mind boggling to me that they can readily give this drug FREE to so many on one hand - yet want insurance companies to pay $100,000 for it. It's just so out of whack! But I'm no martyr and I wanted Harvoni and i'm certainly not going to apologize for that! What I will do, however, is help others get the medicines they need, if I can and shoot off letters periodically to express my opinion and what I've learned thru this experience. Something has to change that's for sure!

I am waiting to start until I get some more info. There was some note about surgery and dental work that I have a question on: I am mid-process of implants (teeth ones unfortunately....:) . I've had the bone grafts done & now I need the implants put into the bone. They put you under for that (not general anesthesia; the other kind) and of course cutting open the gums so I just want to make sure that the Harvoni won't be an issue. Anyone know anything about that? 

This jar of Harvoni might as well be a $500 bottle of champagne. You really want to open it and drink it down but then again you want to savor the moment.

I'm nervous but I have to admit the list of side effects on the script info is about the shortest I've seen in a long time! 

So I should be hopping on the train soon.  I have my ticket just need my departure date.

Tig56: Good info!  

I'd like to get those stats for NYS CDPHP. 

And I was thinking today that it kind of pisses me off that I had to use the Support Path to get Harvoni.  I have insurance.  A  lot of people aren't as fortunate and those are the ones who should be using support paths and assistance programs not me!! Damn CDPHP.  And truth be told, they knew that this drug was coming and they knew how much it was going to cost and they know how  many members would need it. They build these things into their premiums and increases every year.  You can't tell me that isn't in there somewhere the past several years as my premiums increase every single year! I would like to know how many people have applied and been denied by CDPHP.  Is that a matter of member record? I wonder how I could find out more of this info I'd love to write the Times Union a nice little letter. Especially after the CEO of CDPHP did an interview w/ them and spoke on how he wishes they could cure everyone and how we all have to work together.  

Awesome that u won your appeal.  - When I saw the F4 I was surprised you even had to do that. But hey - you did what u needed to and now you are on the road to recovery! Good for you! I don't have to take Ribavirin; not that I could anyway. I did try other treatments, twice but I didn't relapse as much as had to drop out due to the sides of interferon, ribavirin or both. I do have to do the 12 weeks tho.

Hey BJ

I am F4, my insurance is and was BCBS of Illinois / Wisconsin. They denied the first time based on a unsubstantiated exclusion in there formulary that said previous exposure to the new Abbvie drugs and a list of other Gilead drugs disqualified any for Harvoni.

My appeal was based partly on that there conclusion or basis for this was highly flawed and had no evidence to back up its assertion. Which is totally true and accurate. So I won my appeal or like they said they reversed there lame position. Now I am on the Harvoni & Ribavirin treatment for 24 weeks. Which is what I should have been on (24 weeks) when I did the Abbvie Clinical trial Turquoise II. Interestingly its what the FDA and Abbvie now prescribes for there patients with F3-F4 Cirrhotics.

Its what can happen when someone enrolls in the wrong arm (short term versus long term) of a clinical trial, some participants get stuck with a arm that has a lower SVR percentage. 

matt            

Hey BJ,

I was curious about insurance profits and looked up some info quickly and found one example report (dated) that showed Blue Cross of Tennessee in 2012 had over $5.6 Billion in annual revenues and made a profit of $221.5 Million that same year. It had a profit margin of 4%, which made it the lowest earner in the state! Combine that to investments and banked revenues and it adds up to billions more. If the TN office is the lowest, imagine the highest! Then add up every state and every insurance provider and then you have an idea of the annual revenues and profit potential that health insurance companies have. These people have money and they want to keep it. Bottom line though is they could afford it if they wanted to...

http://www.timesfreepress.com/news/business/aroundregion/story/2013/apr/30/bluecross-earns-record-221-million/106688/

Tig