Hep C Discussion Forum

TK, my prescriptions for Sov/Riba were sent to Accredo Specialty Pharmacy last week. They then called to tell me what my co-pay was per month ($3K, even with my insurance), and asked if I had received any copay assistance. I gave them my Sovaldi SupportPath AND PAN Foundation information. As for PAN, I believe the initial grant is for $15K. That can be used for any medical service related to your condition for six months before you received your grant (dr/specialists, copays, etc.) and up to six months after the grant expiration date (it's for one year). I called them when I first received my card. Like you, I had no idea how much the grant was for. I was told that mine was for $15K, and that if my medical costs went over that during the year, I could call them back and ask for another $15K. If you have any questions about PAN, please give them a call. They are great people and will gladly answer any questions you may have. Anyway, if your specialty pharmacy has your prescriptions in hand, you can certainly call them and give them your info. Best of luck to you TK, you're on your way! Mike

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!!

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

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"

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      

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!

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!

The key to gillead is the drs.the process is actually pretty simple. If the dr,or even better,his assistant. Says. It is time to treat. That is pretty much it. Gilead isnt going to tell a dr,well we dont think so.that would be a pr nightmare and they arent going to go there.as someone said,the process is pretty simple,but. My delay was simply the caseload of my dr.he wrote the script,and it wad a week or two before support. Had everything. Once they did, the path ladies did the rest quickly. Call support. In daytime. They will and pushed for the required info,which really wadnt much and quickly done.
With private insurance they know i t works anf they they know they going to have to honor. The drs order. Or they going to get dinged by someone.its like a law suit. Insurance. Knows on day one what they going yo have to pay,theytry to make it work for them until the last. Posible second. With all the regulations and regulators. They know time is short.thst puts the patient in the driverd seat. Use that yo get the meds. Evil pharma is looking at 2,0 now,the more hear it works more scripts selling Harvoni 2.0. They deserve it

The ladies at support path have called me every day after i had recieved meds. They sre awesome

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 everyone, I was given a rx for Solvaldi and riba by my Dr back in Oct of 2014. My insurance has denied me twice and also has denied my appeal. The specialty phrm. Who is handling my scripts has sent me the papers for "support path" and the papers for the riba. I filled them out with all the required documents and sentthem back. The pharmacy called yesterday to say they sent me the wrong riba papers and they are sending me a new one to sign. What I would like to know is after the specialty pharmacy has all the needed paperwork how long will it take for me to find out if I'll qualify. I have geno 3a so I need the Solvaldi and riba for 24 weeks. I've been getting the runaround and denials for almost 6 months now. I had 2 fibrosure tests done in this time the first showed me as an stage 3 the second showed a stage 1. So I really don't know how bad my liver is. I have never treated before and I just want to get started. If anyone knows anything that would help me respond please let me know. Should I be calling support path even though my pharmacy is doingit. I'm so confused by all this...thanks

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 ......

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

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!!

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! 

 

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.

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.

Hey Brian,

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

Tig

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.

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.

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!

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.  

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