Isn't Cronic Hep C Enough? Will Gilead? My Insurance ? the Pharmacy relly kick me off the train ?????
dharmabum said
Mar 27, 2015
I would bet a little money that they blame it on a computer error. That's what my insurance/pharmacy did...
Bills said
Mar 27, 2015
bubble wrote:
It seems we are all geared for what to and could expect Bill after your nightmare. I took your advice and had a three way with Abb-vie, and Accredo. All approved, 28 day supply (X3) and every delivery is a $5 dollar co-pay. No BS. I was pre-approved for the finacial discount. Got Abb-Vie's nurse assistant to get my Doc off his butt. I am supposedly getting my delivery today from Fed Ex. These rocky roads make us all stronger and everyone should post their plight.
Also, Abb-Vie assign's a case nurse (RN) who you report to. Mine is very friendly and knowledgeable. I agree with Zavr, Abb-vie is incredible and sooooo helpful. The first blood work at 2WEEKS is common now she sez. Still wish I did not have to take Riba. Will post my side effects. Thank-you Bill for your posts. Good stuff. Good Luck my brother.
Great news Bubble I'm so glad things are working out for you finally. We are so lucky to have a thriving support system here that is not swayed by outside influences with agendas that steer us in any one direction. It's just us and I hope it stays that way. You have a good plan to be involved in your treatment decisions yourself. In any severe illness and complicated maze of separate agency's etc. there is high possibility someone will be out of step. Getting advise from people who have done it before is our best line of action. These obstacles seem easier when someone shows you a short cut or way in. I never would have been able to do this alone. I'm really looking forward to seeing you get started finally You've been waiting a long time but it is the best time to do something the easier treatments are here and soon they will be more options and high success rates. Your on Riba, and its not so much fun but there is a lot of experience here on how to deal with it. Sharing your important blood levels will also take the sting out your guessing there are a few real good interpreters here. Good Luck My friend your on the train.
BillS
-- Edited by Bills on Friday 27th of March 2015 09:08:31 PM
Tig said
Mar 27, 2015
Hey Bill,
Thanks for the PDF links for the Patient Advocate information! They have been added to the Patient Advocate section in the Payment Assistance thread. We appreciate the help of everyone here in keeping our forum current and filled with useful information! Well done and thanks again!
Tig
Stormy said
Mar 27, 2015
Glad that issue is sorted out. Seems there are many people involved in this process. It can be mind boggling at times. Too many cooks?
Stormy
bubble said
Mar 27, 2015
It seems we are all geared for what to and could expect Bill after your nightmare. I took your advice and had a three way with Abb-vie, and Accredo. All approved, 28 day supply (X3) and every delivery is a $5 dollar co-pay. No BS. I was pre-approved for the finacial discount. Got Abb-Vie's nurse assistant to get my Doc off his butt. I am supposedly getting my delivery today from Fed Ex. These rocky roads make us all stronger and everyone should post their plight.
Also, Abb-Vie assign's a case nurse (RN) who you report to. Mine is very friendly and knowledgeble. I agree with Zavr, Abb-vie is incredible and sooooo helpful. The first blood work at 2WEEKS is common now she sez. Still wish I did not have to take Riba. Will post my side effects. Thank-you Bill for your posts. Good stuff. Good Luck my brother.
Bills said
Mar 26, 2015
Latest news on that
I went and picked it up so this month is in hand as we speak/ write / post, I wanted to keep everyone updated on this as it or something similar could happen to any of us. This Hravoni and some of the other interferon free TX's are so easy on us. It's like night and day. We were always getting hit with one problem after the last, and every step was tough. As i said my biggest difficulty was if I would remember to take 1 pill a-day. Funny how even that almost became a problem that I couldn't control. Murphy 's law. One last thing I'm still waiting on is who made it happen. I think the Pharmacy knows but support Path stills says they don't know who stepped up.
I received This information from The Patient Advocate its PDFs / articles on the help they offer here. I'll post it here and Pass it to the guru's and monitors for consideration on the Help support thread
Sadly, it is all about the all mighty dollar. I'm so glad it worked out for you. Onward to a second chance at health! Congrats.
-Rob
Zlikster said
Mar 25, 2015
:) glad it's all resolved well Bill!
No generic Harvoni yet, but 1/2 of it, Sofosbuvir is now available in Egypt and India. RRP 300$ per bottle. I bet lots of Americans who are denied by their insurance for tx would opt in for cheap generics.
best
Bills said
Mar 25, 2015
Thank you thank you all A to Z every bit of this was inspired by your support
We are learning something It's Interesting because it exposed something about following the money. I am grateful that it happened to me and not one of you that didn't have the means to cover it if need be ( get a loan ) Or someone who is being told tough cookies you can't have it and believes that line of $%&*@#.
I Thank God for the foundations that are their for you ( and us) and help meet this need. The Express Scripts disaster is another big problem that needs to be straiten out as well. But this scenario is all I have to on go right now. I have plenty more to say and many more thanks to give but I gotta get back to work for now and catch up before they notice
OK?
I'll be back I herd this on the radio when woke up it's worth waiting till the music starts
Way to go Bill ! This probably would of made "Fierce Biotech News" with this disgrace. It is illegal. (IMO) Persistance pays with the health industry. I hear a train whistle..............
Groupergetter said
Mar 24, 2015
I had problems from the get go with Express Scripts, fought them tooth and nail for approval, and every month seemed a task to get my meds. In January my insurance carrier changed to Caremark for specialty pharmacy. I was actually able to get my meds filled early and each month they have contacted me to make sure I'm still compliant. Only question asked is "are you in the hospital" The ride is getting shorter for me. Will start my last bottle of meds in 6 days. Hoping and praying we all make it.
Great news Bill, glad to hear your ride continues, getting closer to the end of the journey. What a glorious day that will be.
mallani said
Mar 24, 2015
Hi Bills,
Great news buddy. Onward! Cheers.
Brian1412 said
Mar 24, 2015
Congrats. I knew you would gix it. My deal only has the dr and his nurse
And the hospital. Even with them
And they are awesome. I have to call and say. Wtf? My meds sat at federal express for. 5 days bc nobofy thought to call me ecept yhe Gilliead path girls who call me everyday. My faith and your faith and persistence Tells us to have faith. That faith and it is always with us
It is the script people who are on the boyyom. The priving deals witj yhem and gollead are long done, its insurance and people like the script co. Thst is where problem will rise. Iy id malpractice to cut a patient. Mid treatmen. Thats what regulators are for and they go after it. Go kill this dumb virus. And follow you faith
Rubye said
Mar 24, 2015
This is wonderful news Bill.
It's always impressed me how when I step back and let go, things have a way of working out without me in control. I don't believe in a traditional god but do find life is so much better when I breathe and give up. Next thing I know, there it is. Anyway, I am so happy for you.
Yes, I thought that was your house also. At least you have a close friend to hang out with on the lake.
Tess said
Mar 24, 2015
That's great news Bill!!! God gave you the will to keep fighting. It sounds like you are also blessed with a wonderful nurse
BTW, I thought that house in your photo seemed like a cool place out in the woods or on a lake. Have fun there this summer!
- Tess
dharmabum said
Mar 24, 2015
Hi Bill,
Call/write to your State Attorney General - Illegal Denial of Coverage.
I had a similar issue as I was rounding third. I had received 2 months Harvoni through Caremark and one day before the third and last month's shipment I got a call from Caremark telling me that they could not send me the meds (they were no longer an approved pharmacy!); as directed by their parent company Express Scripts! I was thrice prior- authorized and all labs, Rx, and records were with Caremark.
Express Scripts had not one iota of info on me. No way can they process this Rx in a timely manner(Caremark & Express Scripts are same company!) they told me. It would take 5-10 days to process the paperwork and then another 3 days for mailing. Not to mention my physician's papers.
At the root, I am sure that they were very very reluctant to fork over more money, even if I was approved for 3 months. They are acutely aware that if you miss doses you cannot finish the treatment.
What did I do? I called the Attorney General of the State of CT. That very afternoon the Assistant AG actually called my insurance. Oh boy, I got the Rx the next day! This is life threatening nonsense and I like to call it a creative denial. I also called/wrote the CEO, sales and marketing division of the insurance company and the CT Insurance Division.
Is it possible for a pharmacy to be evil. YES, EXPRESS SCRIPTS IS THE DEMON.
The final explanation was that a computer glitch had allowed me to use Caremark (wasn't my choice) for 2 month via a computer glitch. Then when the error was discovered a list was compiled to allow those already in treatment to continue with Caremark. Oh, my name was on the botton of the list and was dropped by accident.
You can't make this stuff up. Call the top cop in your state. Send him/her an email so that you have it in writing. You still have time. I could hardly breath for two days, until my Harvoni arrived. I was no better than an "amuse bouche" for two days.
I am so sorry that this sort of sneaky behavior has been allowed to worm its way into our critical care treatment.
Jo
Tig said
Mar 24, 2015
Hey Bill,
So glad things worked out in your favor! I was praying for you too Brother! God works in funny ways, but faith brings positive change. Can we get an Amen on that one? You bet!!
The pharmacy was probably calling because they had already accepted your prescription and were crapping their pants when the financial issue surfaced. It's all about the money$$$. I'm sure they're all relieved now...
Your ticket is now pre punched and the train is rolling again! Good luck buddy! Next stop is SVRville!
Tig
Matt Chris said
Mar 24, 2015
Hey Bills
Wow! that was fast - (God's Speed) quite a turn around. Bills, all the regular members have been thinking of you and hoping for a positive outcome for you. Yes, to acknowledge and feel appreciation to the most high God for the good things in our lives shows a persons relationship to the one that has helped them. Reminds me of one of my favorite scriptures from Philppians 4:6 & 7
Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God; 7 and the peace of God that surpasses all understanding will guard your hearts and your mental powers by means of Christ Jesus. From NWT
Was thinking that maybe your Insurance prescription coverage does not have a out of pocket maximum and that possible only appies to your major medical portion of your insurance. Whatever it is, it doesn't matter now.
Yaahhooo for you Blll, onward and upward toward SVR
matt
Bills said
Mar 24, 2015
Thank you Roger , Gator
I am cracking up about my picture there
I wonder how many of you think that's my house? Maybe Harvoni saw that and felt sorry for me LOL. That's my neighbors camper Its a beautiful place in a campground lakefront you can't see from that angle and very private. Its an old camper with that make shift screen porch.
As you can see it's a come as you are place. I wish I had a place like that, there is a million frogs fish ( bass ) humming birds bears coons skunks woodchucks ( groundhogs ) chipmunks rock music a rowboat. I live in like urban suburbs where taxes are too high. he's had that spot for 25 years His kids spent all summers growing up swimming and playing at that lake. i got to go over and tell my neighbor Mark I'm going to help him get reset up for summer. Get some bait and drown some worms.
I'm sure the train stops there I'll look for some pics of the grounds
i feel alot better no
rblood said
Mar 24, 2015
Hi Bill,
I have been keeping up with your struggle to stay on the train. I am very happy to hear it has worked out for you! And I will also thank God for his help for you.....Roger
Bills said
Mar 24, 2015
Latest and Greatest NEWS
5$ co-pay is reinstated I feel like mushy puddle relief on the floor and it feels great. The Train ride is on. The moral of this story is don't give up.
In AA we are suppose to be willing to accept GOD's will whatever it is. and that is however and whatever God is to us ( aka as we understand him ) and then " try" to accept any outcome as your Gods will. I do believe 6-7 years ago when I had no place left to turn and accepted my fate ( possible death etc.) I made a deal with God and I entered in to something I can't explain. At that time in the beginning of the Hep C journey i felt closer to this higher power than ever before. Even tough i thought I was going to die. Over the years that feeling fades ( my line is I have a Rock solid faith ( that comes and go's ) I do admit I have times when i say what happened God? Or maybe I'm dreaming or just hoping to hard. Even tough my faith wavers I have been sustained with My Sobriety My Job steady income, My insurance, Good doctors, family support, this forum and AA which should come first. It feels dark at times but there always seem to some light. And I have the memories that better things than I can imagine have happened when I least expect they would. I was just contemplating what bank to get the home equity loan at for my meds. and the phone rang. The Pharmacy called and said you are back on a 5$ co pay for the last 2 refills pick up Thursday Ok? It was my Nurse who I couldn't reach through this that lit the fire that made this happen. Remember I said the staff at Cornell has always helped me with this stuff and I have a lot of faith in them. Not Dr Jacobson the staff. Prime Aid's Pharmacy main office is in NYC I get my pick-up in NJ she was working the one in NYC. its a few blocks from their office. She knew where to go to get the result all doors where shutting for me. I don't regret my effort. I learned a lot this week. Or being outraged on greedy persons in this. It's another special day in my journey. Another thing I can look at as being in the hands of a loving God, who accepts us even with our defects. Another thing I learned is all I can do is be willing to accept Gods will. I don't believe in instant faith or name it and claim it. God's time is, not our time, hes always late. But He's Always right on time. Maybe this thread is done maybe not. I'm going back to my seat on the Train.
I deeply thank you all for you your prayers and encouragement.
Gator Man said
Mar 24, 2015
Hi Bill,
You are in a difficult spot and having to make a tough choice if you have to resort to a home equity loan to handle the co pay. When I was initially denied my last S/O refill, I considered paying for the last month out of pocket. I was fortunate that the plan administrator realized that it was not legally acceptable to discontinue coverage mid-treatment.
I don't know enough about the Gilead Support Path program to offer any advice other that to keep pushing it with them and hopefully they will make up the difference. I certainly hope they will make up the difference. In any event, I would continue with treatment even if you have to come out of pocket. At the end of the day, good health means far more than money, but you already know that.
I'll have a virtual drink to your UND and hope that it all works out. Keep us posted.
john
Bills said
Mar 24, 2015
Ok Update
1/2 of Friday, All of Monday and 1pm now Tuesday I have not stopped calling every nook an cranny of my Insurance, the Foundations, Pharmacy etc
My insurance paid the obligations - so did the Gilead coupon so I am now 20% pay out of pocket ( my plan don't have the 100% kick in ) I'm in NJ not NY my doctor is in NYC
today I submitted W2 tax info and house hold budget to Harvoni support path they are considering an exception. I used the lawyer words, and many other terms. Their still not hanging up on me yet so i guess I have some shot left to get something.
But my ultimate plan will be home eq loan if nothing else happens. Yeah I am sick of this. Please Don't think I didn't try to pick up all the advice and encouragement here as I went I did and Appreciate it so so Much. I fought 3 previous treatments standing up I'm UND and I am not a quitter. I'll get SVR if it kills me. The same sword I'm using to kill the dragon I'll use to take blood from Gilead. We all know how hard this is to get a doctor you can trust a team to get you paid for. I see many people here who have it worse. I decided not to complain all I want is SVR whatever it takes. I will sign up for every class action lawsuit I can find. Writ the congressmen governors and all that crap.
I wish I knew sooner I would have taken a vacation to Egypt and picked up some souvenir Harvoni. If Gilead pays me back I might just do it anyway for my neighbor who's have trouble getting approval.
Something I notice: I was alerted by the Specialty Pharmacy that I needed money for my next refill. Why? Why them? Because they are last in loop to get paid and have the highest risk of not getting paid. Insurance is careful to only pay what they contract to do. their job is done. Gilead fills the gap for each refill as needed. I think Gilead dose it by discounting the Pharmacy's cost for the med. NOT paying anything. The Pharmacy still makes their points in the sale of the med. Everybody's happy OH ME I have to add my 5000$ for the next sale to happen and the Pharmacy and Gilead get paid again for refill 5 and then 6 But Who Cares? The only one who cares is the person who makes $$$ on the final sale ( The Pharmacy ) insurance don't care they don't have to pay $25.000 Gilead don't care they don have discount their profit. The Pharmacy wants the sale to happen so they make their ponit$$ So they warned me.
The saddest thing is if I don't pay and relapse I have to it again Gilead and the Pharmacy gets paid again. At my further expense and my insurance 's expense If attempted this year it will be 15K K out of pocket . I wonder if Dr Jacobson would put a good word in for Me? I did a 48 week trial for his team that failed ( DB025 trail ) He felt so bad then He offers to let me go right into the Incivek TX back to back ( it was just approved ) for another 26 weeks till i relapsed again. Did I mention the GS7977 was in Cornell at that time and they never mentioned it or thought maybe it work for me? I missed that trial by a week. Way to go Dr Jay good lookin out. I don't blame the staff they are the best and took very good care of me I'm still at Cornell Dr Jay is not LOL. Forgive me for remembering my needle pricked belly, the taste of Fat and brain fog etc.
The story will continue I have 6 pills left I guess I'll be at the Bank tomorrow LOL. This really does suck.
Thank you all I'm still laughing, I'm happy to be UND I'd drink to that if my liver wasn't shot
BillS
Brian1412 said
Mar 23, 2015
Yup and if they don't, say the word Malpractice a few select times. All the reps here say that works like a charm
Brian1412 said
Mar 23, 2015
so, they say your income is too high to continue ? Surely your union wh0 administers your health plan can get this fixed. Why won't they pay? Doesn't it make since that those without Union plans or Caddy plans, would be the ones who get assistance. I think so.
If your in New York, don't they still have the law that forbids non treatment of limits?
I understand your frustration, but I still think it is wrong to continue with the greedy evil Pharma. They hade a 11 BILLION dollar acquisition considered very risky to have this drug, and even better version on the pike, that is "curing" many people.
There is a way to fix it. Seems to me that you are so close to getting to the cure, it might just be worth it, to pay the difference and be free of this disease. Only doing that after you have explored all options for assistance. If your being treated at a medical center such as county Hospital, there is always assistance there.
Hang in there, you will find the way . The goal is being free of this dumb ass virus
Cinnamon Girl said
Mar 23, 2015
Bill, this is a terrible state of affairs and I really feel for you. It`s quite possible that the 12 weeks you`ve done have been enough but of course the longer you can stay on treatment the better your chances of SVR will be.
I don`t enough about the system to be able to advise you but it`s worth trying all options available to push this through.
All best wishes go out to you and hoping for the best. Keep us updated. ~ Jill
bubble said
Mar 23, 2015
Bill: Remember this: There is a warning on Harvoni and Vikera-pac. It states "not to stop taking this medicine while being treated for Hep-c". And to "notify your health care provider". Im sure they will re-autthorize the discount. This should have been outlined before you began treatment.
bubble said
Mar 23, 2015
Hey Bill S. X2 on the previous post. I am willing to bet if you re-run this to someone who GAF, you will get this resolved. Are you the first one on this website with this? All of this should of been explained upfront. It's desceptive insurance practice IMO. I am getting rocked and rolled too and I dont even have one pill yet.
clhndluke said
Mar 22, 2015
Hey Bills, When I was talking to Support Path they told me PAN would help with co-pay which I am sure you tried but they also said if I could not get
any help to call them back, I guess what I am saying is keep calling them back and maybe you will find the right person to help you wade thru this,
it sure seems to me that they would rather work with you and just quietly help you thru this, rather than face a boatload of bad publicity, good luck...
.....
Dzdayscomin said
Mar 22, 2015
This is just an opinion, but have you been UND for those 1st 12 weeks?these drugs are powerful and I know you have relapsed before but maybe 12 weeks is enough to do the job? These drugs are unlike those that you relapsed on......not advice just an opinion, a pretty stinkin dirty deal if ya ask me.
Michaele said
Mar 22, 2015
Hey Bills , Im speachless . I wish I could find the words to comfort you and reassure you , but I know they are only words . So insteady I'll say a few prayers for you. Best Wishes Michaele
Bills said
Mar 22, 2015
Thanks Malcom
Your team of experts are doing just fine
You and you lovely wife go have the Beignetat? that Cafe. Its good for cirrhotics your off duty on Holiday Pratice your swing
hey you might be able to to get a fishing trip in? Take lots of pics and smile these guys will handle my whining LOL
Have fun
BillS
mallani said
Mar 22, 2015
Hi Bills,
Man, you don't deserve this. I wish I could help but don't understand the system.
I hope you get some answers soon. Best, buddy.
Bills said
Mar 22, 2015
Thanks Rudi
On think I can always count on is kind words and great advice for everyone here. Not be rude but as good advise I do have to put this off till tomorrow
Matt may also be on to something about a another 100% kicking in but I need to get hold of my policy or a supervisor to check that out
The difference in my BCBS is I'm in a Union and the is a 3rd party management company some of our coverage is direct from the IBEW so it may be different But I'm going to take the advise of sleeping on it for now There's nobody going to answer any questions till Monday morning anyway
I'm be back with an update sometime Monday
Thanks Rudie, Rubye, Matt, and Tigs
RudiRoo said
Mar 22, 2015
Hi Bill,
I'm so sorry this happened to you. You deserve so much better.
I hope you'll consider calling out the people who failed to give you the correct information for their unprofessional and uncaring behavior. If they did this to you, they can do it someone who has no other options. If you report the people who gave you misinformation, or failed to warn you of this enormous impending cost, you may be able to protect others from a similar fate.
I know it's hard when you are facing something like this but I hope you can just let go tonight so you can wake up well rested and ready to do some a** kicking. It sounds like there are some a**es that well and truly deserve some kicking!
Hugs ~ Rudi
Matt Chris said
Mar 22, 2015
Hey
The thing to remember is the Gilead coupon counts toward and is the same as if you paid toward the 20% out of pocket, not after. So check what your maximum out of pocket is.
matt
Bills said
Mar 22, 2015
Matt Chris wrote:
Hello Bills
Sorry to read about your ongoing battle. The simple view from the numbers ($) standpoint generally is
# 1 What does your Insurance policy say regarding your maximum total out of pocket expense per calendar year amount
#2 The Gilead Co-Pay coupon is for a max amount over a time range
The Gilead Coupon is valid for 6 months after first redemption, up to 25% of the catalog price of a 12-regimen.
So if your out of pocket annual maximum is less than 25% of a 12-week regime (or 25% of $94,500 = $23.625) your should be not paying any extra.
Example - my insurance is BCBS the Annual Maximum of of pocket is $6000.00, so the Gilead covered about $4000.00 in Dec 2014 and $6000.00 in 2015 totaling around $$10,000. regardless if it was 12 weeks or 24 weeks. The coupon has as its limit $23,625.00 after that other arrangements have to be made.
Most 80 /20 Insurance plans have a maximum out of pocket that you pay of the 20% part, then the 100% coverage kicks in. The Gilead coupon pays the out of pocket portion up to $23,625.00
Bill check your policy closely.
matt
Hi Matt,
Your right on I have BCBS too and whether it's exactly the way you say or close to it I know what you mean. And thats why I'm preparing for the worst and may have to pay
I was told my allowance was up and Gilead gave what they are obligated to. Last moth was when Gilead copy ran out so the took my annual allowance now I'm on 80-20% I could have gotten help with the rest but my last years income put me over the limit. My NY Docs do have few more tricks but I may find out the same about income. I'll go and pay but I'll go kicking and screaming a little or a lot. As in my last post I'm not going to loose the battle I got 10 days left
BS
Bills said
Mar 22, 2015
Thank You Rubye
I like the reporter thing. I'm all for an article, and I agree about faith in the system that's why I'll start a fight over it but I'm not going to loose the battle, After the battle and if I pay I'll be back to finish the fight. I have planed to go to the liver walk ( American Liver Foundation ) Verona New Jersey early May I want to see what they are doing about this insurance and price gouging. It would be a real good venue to get publicity for this.
Many of the advertisement we see is How great it is that new cures are out " It's time to treat" which is true but if you have the insurance and if your Hep C G1 Cirrhotic failed treatment. Why don't they advertize the petitions and truth behind the pharmaceuticals companies greed. Why can't the government make Gilead copay 24 weeks. No I have no faith in the decision makers feeling sorry for us. Gilead gets all kinds of pats on the back for bringing the cure to us and the 12 week copay. They don't loose on that its really just discounted they made the pills anyway. The gouge the insurance for all they can 1st then say Ok heres the pills.
I would love to see some of this forum members at this event or the one in NYC coming up and I know We would be welcome. I wonder if they would consider helping the Hep C community to be herd.
BS
Matt Chris said
Mar 22, 2015
Hello Bills
Sorry to read about your ongoing battle. The simple view from the numbers ($) standpoint generally is
# 1 What does your Insurance policy say regarding your maximum total out of pocket expense per calendar year amount
#2 The Gilead Co-Pay coupon is for a max amount over a time range
The Gilead Coupon is valid for 6 months after first redemption, up to 25% of the catalog price of a 12-regimen.
So if your out of pocket annual maximum is less than 25% of a 12-week regime (or 25% of $94,500 = $23.625) your should be not paying any extra.
Example - my insurance is BCBS the Annual Maximum of of pocket is $6000.00, so the Gilead covered about $4000.00 in Dec 2014 and $6000.00 in 2015 totaling around $$10,000. regardless if it was 12 weeks or 24 weeks. The coupon has as its limit $23,625.00 after that other arrangements have to be made.
Most 80 /20 Insurance plans have a maximum out of pocket that you pay of the 20% part, then the 100% coverage kicks in. The Gilead coupon pays the out of pocket portion up to $23,625.00
Bill check your policy closely.
matt
Bills said
Mar 22, 2015
I'm Hopeful Tigs
One thing I see is the road in back of me how it was so hard and very dark at times. The higher power I call God has sustained me for many rough rides even when i wasn't looking or asking. How could I loose faith now.
I will be sure to write about this part as it is so important to others. My real fight starts Monday for all I know it might be over by Tuesday. I'll back tract some of those foundations I called so we can Add them to list. I think they would have helped if I wasn't over their guidelines on income.
And your right I know I do deserve it but nothing will stop me for completing my treatment without any lapse in Meds. I can't let that happen. I thank tou and everone for the heart felt support you guys give so freely.
Peace
BILLS
Rubye said
Mar 22, 2015
Hi Bill, I'm sorry this has gotten so messed up for you. Tig has much more faith in the system then I do. I would keep working with Support Path - ask to speak to higher Ups, etc. What finally got me treatment was the media. For months I kept getting the run around from doctors and so I finally called a reporter I knew. He did an article on Hep C and how difficult it was for poor people to obtain treatment - even with cirrhosis. The day after the article appeared I received calls from two different doctors and had the script within the week.
Our stories are different but the point is the media gets things done and quickly. Of course it was terribly embarrassing being exposed like that but at least I no longer have the virus. Just one more consideration for you.
Tig said
Mar 22, 2015
Bill,
I would like you to know that nobody in our world would consider your need for or request for assistance from one of these organizations as anything other than necessary. Regardless of all the others out there, you also deserve to be treated fairly. You have traveled a long and difficult road Bill. You have every right to be angry over this delayed denial of coverage and after so many attempts at Tx, I feel you've earned the right to get this promised care. I hope that in your phone calls and discussions tomorrow, you'll talk to someone that has both understanding and common sense. Please let us know what you find out. I'm pulling for you dude! Stay strong...
Tig
Bills said
Mar 22, 2015
Tigs
thanks so much for your quick response
I don't think I got a number for PAM yet. Being it's Sunday and i think most these foundations may be more on line weekdays I'll call Monday What I've seen so far is most are income based. That alone was the roadblock for the handfull I called. These where all phone number's provided by support path and each other. It was like a circle of passing the buck dis you call this one? Yest they gave me your number and them too. So I was pretty disgusted with 2 hrs of repeating information.
I think for me it's income problem. and having insurance that covers 80%. As I said I was afraid of this and questioned it a few times. I was ready to tap into my annuity fund or get a home equity or something. and they all said no problem. It would be selfish of me to think i fully deserve outside coverage or take form a foundation when there are so many that can't get what they need. And I not just talking Hep C it's any life threatening condition. I wanted to attend a riot outside Gilead 2-3 years ago when we knew what they were planing. "Their plan was to have it all and Cash in" How big is the Yacht HARVONI I'd like to see it and invite some of my friends from the projects with Hep C. We can do a cruse around Manhattan. Yes I still have sick sense of humor thank God.
I'm trusting that my support in Weil Cornell will do something For 6 years they took care of me, before, after during my 1st 3 treatments. this is the first glitch so far. As for your advice I am making note of the insurance commissioner, and file a complaint.State Senator's, House Representative, Governors office, the insurance commissioners office. and move this up front GET an ATTORNEY on it. As much as I don't like lawyers either they are necessary evil.
Actually when I was speaking to Support Path there was a hint that Gilead may do something. Commonsense sense tells me they would love to get $$$$$ help the needy foundation make up the difference before they just wave the copay and take a little bottle of pills off the shelf for me. That would make a nice article about Gilead's ethics.
For me it's like saying I'll take food or clothing set aside the for poor when I do have some clothes and If really have to pay will have to give up something to get it. I'll just have to be willing to admit to myself life ain't fair. And others have it worse and a lot less than I do. Some people on this site paid out of pocket for the whole Incivek and Victrillis etc. Many peoples co-pays and coverages have exclusions, the Mri's the blood-work ultra sounds are not covered. As I said I'd rather go to the Riot and find the one who owns that yacht. How long can he swim?
I'll be back on Monday with an update OH I have 10 pills left? The riot may start in 11 days LOL Hope i don't scare any of you too much take comfort in knowing I'm on your side. Thank you Tigs
BillS
Tig said
Mar 22, 2015
Hey Bill,
Sorry to hear about this. These things make you want to rip your hair out, including that of the idiots making these decisions. Let's see what we can do.
What organizations did they provide you? Have you checked our payment assistance thread lately? There are some updates. I recommend the PAN Foundation if you haven't called them.
You should contact your insurance commissioner tomorrow and file a complaint. Your state Senator's and House Representative will help you as well. That may take time but they do respond faster to emergencies. Then there's the Governors office, tell them whats going on. They can work with the insurance commissioners office. They can pry into stuff you can't, so tell them what's going on. They work for you. If all else fails, you may be able to get an attorney on it for far less than a $12K payment. Sometimes a phone call and/or letter from one can make a difference. A lawsuit to recover your out of pocket costs is also a possibility. You have the pre approval confirmation from all of your providers working for you.
These are just ideas Bill. I wish I could do more. I know you were told that 24 weeks was required. What's the possibility of 12 weeks doing the trick? I'll visit that information again and look for possibilities. Don't give up hope. I can only imagine your disgust and disappointment. Let's try and hold onto hope. Leave no stone unturned! Keep us in the loop Brother, you know we're here for you.
Tig
Bills said
Mar 22, 2015
Just when you think you can sit back and rest easy, It all comes down to money ( GILEAD S GREED #1 ) and the insurance co's and the Pharmacy.
I'm told I have to pay $5,000.00 copay for month 5 and $6500 for month 6. I'm not so much angry that may have have to pay. but that Nobody flagged it before or even as I started treatment. And I Did Ask all of them.
The 12 weeks coupon was good for 12 weeks so was I riding for free
Last month (#4) Because the Harvoni $5.00 copay was up they emptied my copay allowance of $5000.00 per year, to cover the 4th month. They didn't tell me I was on my own now and star saving up $12,000.00 to finish. Harvoni said well heres some foundations that help. I make too much money based on last years income.
How? How? could everyone ( the ones above ) say don't worry you are approved for 24 weeks according to the drs approval the pharmacy insurance and then never ADMIT there would be a catch 1/2 way you should prepare for. I had been thinking of moving assets to be made available thinking What if but I was told don't worry your approved for 24 weeks ( even though that co pay only say 12 weeks ?) YES It even says in my bottle of pills 2 refiles left. I asked the parmacy last month about the 12 week coupon, No sir you are approved for 24 weeks.
Whats the catch? everyone was getting paid. Their all on the dollar train. It's like using sky-miles that run out 1/2 way They kick you off the Plane? WTF > may have borrow the money to stay on the train but I'm shining my shoes and deliver a message they will find HARD to SIT WITH. Lucky I had Doc appointment already scheduled for Friday anyway to do the 12 week check up. The Nurse on my case got right on it and says she will continue Monday morning.
Never Never Never fully trust these Greedy Bastards. Now that I vented
I'm Grateful
1st. For all of U for keeping me somewhat sane all the advice and knowledge you've put into me. All the laughs and tears
2. My doctors and especially my Nurse who handles my case and got me this far. BTW 12 week blood UND liver numbers all OK Except platelets
3. That i do have good insurance and good job I'm blessed to have had very little trouble getting any care any time. i really feel bad for those who are not as fortunate, I really do.I wish I could help them.
4. I'm grateful that I have the choice to Ask God for the serenity to accept the things I cannot change (and try to really mean it) I'm trying not to dwell on still kicking someone for this.
5. My family who puts up with me
6. Any advice on how I might proceed and not have to pay for this?
I would bet a little money that they blame it on a computer error. That's what my insurance/pharmacy did...
Great news Bubble I'm so glad things are working out for you finally. We are so lucky to have a thriving support system here that is not swayed by outside influences with agendas that steer us in any one direction. It's just us and I hope it stays that way. You have a good plan to be involved in your treatment decisions yourself. In any severe illness and complicated maze of separate agency's etc. there is high possibility someone will be out of step. Getting advise from people who have done it before is our best line of action. These obstacles seem easier when someone shows you a short cut or way in. I never would have been able to do this alone. I'm really looking forward to seeing you get started finally You've been waiting a long time but it is the best time to do something the easier treatments are here and soon they will be more options and high success rates. Your on Riba, and its not so much fun but there is a lot of experience here on how to deal with it. Sharing your important blood levels will also take the sting out your guessing there are a few real good interpreters here. Good Luck My friend your on the train.
BillS
-- Edited by Bills on Friday 27th of March 2015 09:08:31 PM
Hey Bill,
Thanks for the PDF links for the Patient Advocate information! They have been added to the Patient Advocate section in the Payment Assistance thread. We appreciate the help of everyone here in keeping our forum current and filled with useful information! Well done and thanks again!
Tig
Glad that issue is sorted out. Seems there are many people involved in this process. It can be mind boggling at times. Too many cooks?
Stormy
It seems we are all geared for what to and could expect Bill after your nightmare. I took your advice and had a three way with Abb-vie, and Accredo. All approved, 28 day supply (X3) and every delivery is a $5 dollar co-pay. No BS. I was pre-approved for the finacial discount. Got Abb-Vie's nurse assistant to get my Doc off his butt. I am supposedly getting my delivery today from Fed Ex. These rocky roads make us all stronger and everyone should post their plight.
Also, Abb-Vie assign's a case nurse (RN) who you report to. Mine is very friendly and knowledgeble. I agree with Zavr, Abb-vie is incredible and sooooo helpful. The first blood work at 2WEEKS is common now she sez. Still wish I did not have to take Riba. Will post my side effects. Thank-you Bill for your posts. Good stuff. Good Luck my brother.
Latest news on that
I went and picked it up so this month is in hand as we speak/ write / post, I wanted to keep everyone updated on this as it or something similar could happen to any of us. This Hravoni and some of the other interferon free TX's are so easy on us. It's like night and day. We were always getting hit with one problem after the last, and every step was tough. As i said my biggest difficulty was if I would remember to take 1 pill a-day. Funny how even that almost became a problem that I couldn't control. Murphy 's law. One last thing I'm still waiting on is who made it happen. I think the Pharmacy knows but support Path stills says they don't know who stepped up.
I received This information from The Patient Advocate its PDFs / articles on the help they offer here. I'll post it here and Pass it to the guru's and monitors for consideration on the Help support thread
http://www.patientadvocate.org/requests/publications/PAF.pdf
http://www.patientadvocate.org/requests/publications/GU-Financial-Assistance-Debt-Crisis.pdf
http://www.patientadvocate.org/requests/publications/GU-Healthcare-Costs-For-Patients.pdf
http://www.patientadvocate.org/requests/publications/National-Underinsured-Resource.pdf
http://www.patientadvocate.org/requests/publications/GU-Underinsured.pdf
There were other numbers they gave me not links
I'll be back soon
Great News Bills!
Sadly, it is all about the all mighty dollar. I'm so glad it worked out for you. Onward to a second chance at health! Congrats.
-Rob
:) glad it's all resolved well Bill!
No generic Harvoni yet, but 1/2 of it, Sofosbuvir is now available in Egypt and India. RRP 300$ per bottle. I bet lots of Americans who are denied by their insurance for tx would opt in for cheap generics.
best
Thank you thank you all A to Z every bit of this was inspired by your support
We are learning something It's Interesting because it exposed something about following the money. I am grateful that it happened to me and not one of you that didn't have the means to cover it if need be ( get a loan ) Or someone who is being told tough cookies you can't have it and believes that line of $%&*@#.
I Thank God for the foundations that are their for you ( and us) and help meet this need. The Express Scripts disaster is another big problem that needs to be straiten out as well. But this scenario is all I have to on go right now. I have plenty more to say and many more thanks to give but I gotta get back to work for now and catch up before they notice
OK?
I'll be back I herd this on the radio when woke up it's worth waiting till the music starts
https://www.youtube.com/watch?v=Yh7UxJfbVwo
BS
Hey Bill, Happy to hear the good news!!!
Way to go Bill ! This probably would of made "Fierce Biotech News" with this disgrace. It is illegal. (IMO) Persistance pays with the health industry. I hear a train whistle..............
I had problems from the get go with Express Scripts, fought them tooth and nail for approval, and every month seemed a task to get my meds. In January my insurance carrier changed to Caremark for specialty pharmacy. I was actually able to get my meds filled early and each month they have contacted me to make sure I'm still compliant. Only question asked is "are you in the hospital" The ride is getting shorter for me. Will start my last bottle of meds in 6 days. Hoping and praying we all make it.
Great news Bill, glad to hear your ride continues, getting closer to the end of the journey. What a glorious day that will be.
Hi Bills,
Great news buddy. Onward! Cheers.
This is wonderful news Bill.
It's always impressed me how when I step back and let go, things have a way of working out without me in control. I don't believe in a traditional god but do find life is so much better when I breathe and give up. Next thing I know, there it is. Anyway, I am so happy for you.
Yes, I thought that was your house also. At least you have a close friend to hang out with on the lake.
That's great news Bill!!! God gave you the will to keep fighting. It sounds like you are also blessed with a wonderful nurse
BTW, I thought that house in your photo seemed like a cool place out in the woods or on a lake. Have fun there this summer!
- Tess
Hi Bill,
Call/write to your State Attorney General - Illegal Denial of Coverage.
I had a similar issue as I was rounding third. I had received 2 months Harvoni through Caremark and one day before the third and last month's shipment I got a call from Caremark telling me that they could not send me the meds (they were no longer an approved pharmacy!); as directed by their parent company Express Scripts! I was thrice prior- authorized and all labs, Rx, and records were with Caremark.
Express Scripts had not one iota of info on me. No way can they process this Rx in a timely manner(Caremark & Express Scripts are same company!) they told me. It would take 5-10 days to process the paperwork and then another 3 days for mailing. Not to mention my physician's papers.
At the root, I am sure that they were very very reluctant to fork over more money, even if I was approved for 3 months. They are acutely aware that if you miss doses you cannot finish the treatment.
What did I do? I called the Attorney General of the State of CT. That very afternoon the Assistant AG actually called my insurance. Oh boy, I got the Rx the next day! This is life threatening nonsense and I like to call it a creative denial. I also called/wrote the CEO, sales and marketing division of the insurance company and the CT Insurance Division.
Is it possible for a pharmacy to be evil. YES, EXPRESS SCRIPTS IS THE DEMON.
The final explanation was that a computer glitch had allowed me to use Caremark (wasn't my choice) for 2 month via a computer glitch. Then when the error was discovered a list was compiled to allow those already in treatment to continue with Caremark. Oh, my name was on the botton of the list and was dropped by accident.
You can't make this stuff up. Call the top cop in your state. Send him/her an email so that you have it in writing. You still have time. I could hardly breath for two days, until my Harvoni arrived. I was no better than an "amuse bouche" for two days.
I am so sorry that this sort of sneaky behavior has been allowed to worm its way into our critical care treatment.
Jo
Hey Bill,
So glad things worked out in your favor! I was praying for you too Brother! God works in funny ways, but faith brings positive change. Can we get an Amen on that one? You bet!!
The pharmacy was probably calling because they had already accepted your prescription and were crapping their pants when the financial issue surfaced. It's all about the money$$$. I'm sure they're all relieved now...
Your ticket is now pre punched and the train is rolling again! Good luck buddy! Next stop is SVRville!
Tig
Hey Bills
Wow! that was fast - (God's Speed) quite a turn around. Bills, all the regular members have been thinking of you and hoping for a positive outcome for you. Yes, to acknowledge and feel appreciation to the most high God for the good things in our lives shows a persons relationship to the one that has helped them. Reminds me of one of my favorite scriptures from Philppians 4:6 & 7
Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God; 7 and the peace of God that surpasses all understanding will guard your hearts and your mental powers by means of Christ Jesus. From NWT
Was thinking that maybe your Insurance prescription coverage does not have a out of pocket maximum and that possible only appies to your major medical portion of your insurance. Whatever it is, it doesn't matter now.
Yaahhooo for you Blll, onward and upward toward SVR
matt
Thank you Roger , Gator
I am cracking up about my picture there
I wonder how many of you think that's my house? Maybe Harvoni saw that and felt sorry for me LOL. That's my neighbors camper Its a beautiful place in a campground lakefront you can't see from that angle and very private. Its an old camper with that make shift screen porch.
As you can see it's a come as you are place. I wish I had a place like that, there is a million frogs fish ( bass ) humming birds bears coons skunks woodchucks ( groundhogs ) chipmunks rock music a rowboat. I live in like urban suburbs where taxes are too high. he's had that spot for 25 years His kids spent all summers growing up swimming and playing at that lake. i got to go over and tell my neighbor Mark I'm going to help him get reset up for summer. Get some bait and drown some worms.
I'm sure the train stops there I'll look for some pics of the grounds
i feel alot better no
Hi Bill,
I have been keeping up with your struggle to stay on the train. I am very happy to hear it has worked out for you! And I will also thank God for his help for you.....Roger
Latest and Greatest NEWS
5$ co-pay is reinstated I feel like mushy puddle relief on the floor and it feels great. The Train ride is on. The moral of this story is don't give up.
In AA we are suppose to be willing to accept GOD's will whatever it is. and that is however and whatever God is to us ( aka as we understand him ) and then " try" to accept any outcome as your Gods will. I do believe 6-7 years ago when I had no place left to turn and accepted my fate ( possible death etc.) I made a deal with God and I entered in to something I can't explain. At that time in the beginning of the Hep C journey i felt closer to this higher power than ever before. Even tough i thought I was going to die. Over the years that feeling fades ( my line is I have a Rock solid faith ( that comes and go's ) I do admit I have times when i say what happened God? Or maybe I'm dreaming or just hoping to hard. Even tough my faith wavers I have been sustained with My Sobriety My Job steady income, My insurance, Good doctors, family support, this forum and AA which should come first. It feels dark at times but there always seem to some light. And I have the memories that better things than I can imagine have happened when I least expect they would. I was just contemplating what bank to get the home equity loan at for my meds. and the phone rang. The Pharmacy called and said you are back on a 5$ co pay for the last 2 refills pick up Thursday Ok? It was my Nurse who I couldn't reach through this that lit the fire that made this happen. Remember I said the staff at Cornell has always helped me with this stuff and I have a lot of faith in them. Not Dr Jacobson the staff. Prime Aid's Pharmacy main office is in NYC I get my pick-up in NJ she was working the one in NYC. its a few blocks from their office. She knew where to go to get the result all doors where shutting for me. I don't regret my effort. I learned a lot this week. Or being outraged on greedy persons in this. It's another special day in my journey. Another thing I can look at as being in the hands of a loving God, who accepts us even with our defects. Another thing I learned is all I can do is be willing to accept Gods will. I don't believe in instant faith or name it and claim it. God's time is, not our time, hes always late. But He's Always right on time. Maybe this thread is done maybe not. I'm going back to my seat on the Train.
I deeply thank you all for you your prayers and encouragement.
Hi Bill,
You are in a difficult spot and having to make a tough choice if you have to resort to a home equity loan to handle the co pay. When I was initially denied my last S/O refill, I considered paying for the last month out of pocket. I was fortunate that the plan administrator realized that it was not legally acceptable to discontinue coverage mid-treatment.
I don't know enough about the Gilead Support Path program to offer any advice other that to keep pushing it with them and hopefully they will make up the difference. I certainly hope they will make up the difference. In any event, I would continue with treatment even if you have to come out of pocket. At the end of the day, good health means far more than money, but you already know that.
I'll have a virtual drink to your UND and hope that it all works out. Keep us posted.
john
Ok Update
1/2 of Friday, All of Monday and 1pm now Tuesday I have not stopped calling every nook an cranny of my Insurance, the Foundations, Pharmacy etc
My insurance paid the obligations - so did the Gilead coupon so I am now 20% pay out of pocket ( my plan don't have the 100% kick in ) I'm in NJ not NY my doctor is in NYC
today I submitted W2 tax info and house hold budget to Harvoni support path they are considering an exception. I used the lawyer words, and many other terms. Their still not hanging up on me yet so i guess I have some shot left to get something.
But my ultimate plan will be home eq loan if nothing else happens. Yeah I am sick of this. Please Don't think I didn't try to pick up all the advice and encouragement here as I went I did and Appreciate it so so Much. I fought 3 previous treatments standing up I'm UND and I am not a quitter. I'll get SVR if it kills me. The same sword I'm using to kill the dragon I'll use to take blood from Gilead. We all know how hard this is to get a doctor you can trust a team to get you paid for. I see many people here who have it worse. I decided not to complain all I want is SVR whatever it takes. I will sign up for every class action lawsuit I can find. Writ the congressmen governors and all that crap.
I wish I knew sooner I would have taken a vacation to Egypt and picked up some souvenir Harvoni. If Gilead pays me back I might just do it anyway for my neighbor who's have trouble getting approval.
Something I notice: I was alerted by the Specialty Pharmacy that I needed money for my next refill. Why? Why them? Because they are last in loop to get paid and have the highest risk of not getting paid. Insurance is careful to only pay what they contract to do. their job is done. Gilead fills the gap for each refill as needed. I think Gilead dose it by discounting the Pharmacy's cost for the med. NOT paying anything. The Pharmacy still makes their points in the sale of the med. Everybody's happy OH ME I have to add my 5000$ for the next sale to happen and the Pharmacy and Gilead get paid again for refill 5 and then 6 But Who Cares? The only one who cares is the person who makes $$$ on the final sale ( The Pharmacy ) insurance don't care they don't have to pay $25.000 Gilead don't care they don have discount their profit. The Pharmacy wants the sale to happen so they make their ponit$$ So they warned me.
The saddest thing is if I don't pay and relapse I have to it again Gilead and the Pharmacy gets paid again. At my further expense and my insurance 's expense If attempted this year it will be 15K K out of pocket . I wonder if Dr Jacobson would put a good word in for Me? I did a 48 week trial for his team that failed ( DB025 trail ) He felt so bad then He offers to let me go right into the Incivek TX back to back ( it was just approved ) for another 26 weeks till i relapsed again. Did I mention the GS7977 was in Cornell at that time and they never mentioned it or thought maybe it work for me? I missed that trial by a week. Way to go Dr Jay good lookin out. I don't blame the staff they are the best and took very good care of me I'm still at Cornell Dr Jay is not LOL. Forgive me for remembering my needle pricked belly, the taste of Fat and brain fog etc.
The story will continue I have 6 pills left I guess I'll be at the Bank tomorrow LOL. This really does suck.
Thank you all I'm still laughing, I'm happy to be UND I'd drink to that if my liver wasn't shot
BillS
Yup and if they don't, say the word Malpractice a few select times. All the reps here say that works like a charm
If your in New York, don't they still have the law that forbids non treatment of limits?
I understand your frustration, but I still think it is wrong to continue with the greedy evil Pharma. They hade a 11 BILLION dollar acquisition considered very risky to have this drug, and even better version on the pike, that is "curing" many people.
There is a way to fix it. Seems to me that you are so close to getting to the cure, it might just be worth it, to pay the difference and be free of this disease. Only doing that after you have explored all options for assistance. If your being treated at a medical center such as county Hospital, there is always assistance there.
Hang in there, you will find the way . The goal is being free of this dumb ass virus
Bill, this is a terrible state of affairs and I really feel for you. It`s quite possible that the 12 weeks you`ve done have been enough but of course the longer you can stay on treatment the better your chances of SVR will be.
I don`t enough about the system to be able to advise you but it`s worth trying all options available to push this through.
All best wishes go out to you and hoping for the best. Keep us updated. ~ Jill
Bill: Remember this: There is a warning on Harvoni and Vikera-pac. It states "not to stop taking this medicine while being treated for Hep-c". And to "notify your health care provider". Im sure they will re-autthorize the discount. This should have been outlined before you began treatment.
Hey Bill S. X2 on the previous post. I am willing to bet if you re-run this to someone who GAF, you will get this resolved. Are you the first one on this website with this? All of this should of been explained upfront. It's desceptive insurance practice IMO. I am getting rocked and rolled too and I dont even have one pill yet.
Hey Bills, When I was talking to Support Path they told me PAN would help with co-pay which I am sure you tried but they also said if I could not get
any help to call them back, I guess what I am saying is keep calling them back and maybe you will find the right person to help you wade thru this,
it sure seems to me that they would rather work with you and just quietly help you thru this, rather than face a boatload of bad publicity, good luck...
.....
This is just an opinion, but have you been UND for those 1st 12 weeks?these drugs are powerful and I know you have relapsed before but maybe 12 weeks is enough to do the job? These drugs are unlike those that you relapsed on......not advice just an opinion, a pretty stinkin dirty deal if ya ask me.
Hey Bills , Im speachless . I wish I could find the words to comfort you and reassure you , but I know they are only words . So insteady I'll say a few prayers for you. Best Wishes Michaele
Thanks Malcom
Your team of experts are doing just fine
You and you lovely wife go have the Beignetat? that Cafe. Its good for cirrhotics your off duty on Holiday Pratice your swing
hey you might be able to to get a fishing trip in? Take lots of pics and smile these guys will handle my whining LOL
Have fun
BillS
Hi Bills,
Man, you don't deserve this. I wish I could help but don't understand the system.
I hope you get some answers soon. Best, buddy.
Thanks Rudi
On think I can always count on is kind words and great advice for everyone here. Not be rude but as good advise I do have to put this off till tomorrow
Matt may also be on to something about a another 100% kicking in but I need to get hold of my policy or a supervisor to check that out
The difference in my BCBS is I'm in a Union and the is a 3rd party management company some of our coverage is direct from the IBEW so it may be different But I'm going to take the advise of sleeping on it for now There's nobody going to answer any questions till Monday morning anyway
I'm be back with an update sometime Monday
Thanks Rudie, Rubye, Matt, and Tigs
Hi Bill,
I'm so sorry this happened to you. You deserve so much better.
I hope you'll consider calling out the people who failed to give you the correct information for their unprofessional and uncaring behavior. If they did this to you, they can do it someone who has no other options. If you report the people who gave you misinformation, or failed to warn you of this enormous impending cost, you may be able to protect others from a similar fate.
I know it's hard when you are facing something like this but I hope you can just let go tonight so you can wake up well rested and ready to do some a** kicking. It sounds like there are some a**es that well and truly deserve some kicking!
Hugs ~ Rudi
Hey
The thing to remember is the Gilead coupon counts toward and is the same as if you paid toward the 20% out of pocket, not after. So check what your maximum out of pocket is.
matt
Hi Matt,
Your right on I have BCBS too and whether it's exactly the way you say or close to it I know what you mean. And thats why I'm preparing for the worst and may have to pay
I was told my allowance was up and Gilead gave what they are obligated to. Last moth was when Gilead copy ran out so the took my annual allowance now I'm on 80-20% I could have gotten help with the rest but my last years income put me over the limit. My NY Docs do have few more tricks but I may find out the same about income. I'll go and pay but I'll go kicking and screaming a little or a lot. As in my last post I'm not going to loose the battle I got 10 days left
BS
Thank You Rubye
I like the reporter thing. I'm all for an article, and I agree about faith in the system that's why I'll start a fight over it but I'm not going to loose the battle, After the battle and if I pay I'll be back to finish the fight. I have planed to go to the liver walk ( American Liver Foundation ) Verona New Jersey early May I want to see what they are doing about this insurance and price gouging. It would be a real good venue to get publicity for this.
Many of the advertisement we see is How great it is that new cures are out " It's time to treat" which is true but if you have the insurance and if your Hep C G1 Cirrhotic failed treatment. Why don't they advertize the petitions and truth behind the pharmaceuticals companies greed. Why can't the government make Gilead copay 24 weeks. No I have no faith in the decision makers feeling sorry for us. Gilead gets all kinds of pats on the back for bringing the cure to us and the 12 week copay. They don't loose on that its really just discounted they made the pills anyway. The gouge the insurance for all they can 1st then say Ok heres the pills.
I would love to see some of this forum members at this event or the one in NYC coming up and I know We would be welcome. I wonder if they would consider helping the Hep C community to be herd.
BS
Hello Bills
Sorry to read about your ongoing battle. The simple view from the numbers ($) standpoint generally is
# 1 What does your Insurance policy say regarding your maximum total out of pocket expense per calendar year amount
#2 The Gilead Co-Pay coupon is for a max amount over a time range
The Gilead Coupon is valid for 6 months after first redemption, up to 25% of the catalog price of a 12-regimen.
So if your out of pocket annual maximum is less than 25% of a 12-week regime (or 25% of $94,500 = $23.625) your should be not paying any extra.
Example - my insurance is BCBS the Annual Maximum of of pocket is $6000.00, so the Gilead covered about $4000.00 in Dec 2014 and $6000.00 in 2015 totaling around $$10,000. regardless if it was 12 weeks or 24 weeks. The coupon has as its limit $23,625.00 after that other arrangements have to be made.
Most 80 /20 Insurance plans have a maximum out of pocket that you pay of the 20% part, then the 100% coverage kicks in. The Gilead coupon pays the out of pocket portion up to $23,625.00
Bill check your policy closely.
matt
I'm Hopeful Tigs
One thing I see is the road in back of me how it was so hard and very dark at times. The higher power I call God has sustained me for many rough rides even when i wasn't looking or asking. How could I loose faith now.
I will be sure to write about this part as it is so important to others. My real fight starts Monday for all I know it might be over by Tuesday. I'll back tract some of those foundations I called so we can Add them to list. I think they would have helped if I wasn't over their guidelines on income.
And your right I know I do deserve it but nothing will stop me for completing my treatment without any lapse in Meds. I can't let that happen. I thank tou and everone for the heart felt support you guys give so freely.
Peace
BILLS
Our stories are different but the point is the media gets things done and quickly. Of course it was terribly embarrassing being exposed like that but at least I no longer have the virus. Just one more consideration for you.
Bill,
I would like you to know that nobody in our world would consider your need for or request for assistance from one of these organizations as anything other than necessary. Regardless of all the others out there, you also deserve to be treated fairly. You have traveled a long and difficult road Bill. You have every right to be angry over this delayed denial of coverage and after so many attempts at Tx, I feel you've earned the right to get this promised care. I hope that in your phone calls and discussions tomorrow, you'll talk to someone that has both understanding and common sense. Please let us know what you find out. I'm pulling for you dude! Stay strong...
Tig
Tigs
thanks so much for your quick response
I don't think I got a number for PAM yet. Being it's Sunday and i think most these foundations may be more on line weekdays I'll call Monday What I've seen so far is most are income based. That alone was the roadblock for the handfull I called. These where all phone number's provided by support path and each other. It was like a circle of passing the buck dis you call this one? Yest they gave me your number and them too. So I was pretty disgusted with 2 hrs of repeating information.
I think for me it's income problem. and having insurance that covers 80%. As I said I was afraid of this and questioned it a few times. I was ready to tap into my annuity fund or get a home equity or something. and they all said no problem. It would be selfish of me to think i fully deserve outside coverage or take form a foundation when there are so many that can't get what they need. And I not just talking Hep C it's any life threatening condition. I wanted to attend a riot outside Gilead 2-3 years ago when we knew what they were planing. "Their plan was to have it all and Cash in" How big is the Yacht HARVONI I'd like to see it and invite some of my friends from the projects with Hep C. We can do a cruse around Manhattan. Yes I still have sick sense of humor thank God.
I'm trusting that my support in Weil Cornell will do something For 6 years they took care of me, before, after during my 1st 3 treatments. this is the first glitch so far. As for your advice I am making note of the insurance commissioner, and file a complaint.State Senator's, House Representative, Governors office, the insurance commissioners office. and move this up front GET an ATTORNEY on it. As much as I don't like lawyers either they are necessary evil.
Actually when I was speaking to Support Path there was a hint that Gilead may do something. Commonsense sense tells me they would love to get $$$$$ help the needy foundation make up the difference before they just wave the copay and take a little bottle of pills off the shelf for me. That would make a nice article about Gilead's ethics.
For me it's like saying I'll take food or clothing set aside the for poor when I do have some clothes and If really have to pay will have to give up something to get it. I'll just have to be willing to admit to myself life ain't fair. And others have it worse and a lot less than I do. Some people on this site paid out of pocket for the whole Incivek and Victrillis etc. Many peoples co-pays and coverages have exclusions, the Mri's the blood-work ultra sounds are not covered. As I said I'd rather go to the Riot and find the one who owns that yacht. How long can he swim?
I'll be back on Monday with an update OH I have 10 pills left? The riot may start in 11 days LOL Hope i don't scare any of you too much take comfort in knowing I'm on your side. Thank you Tigs
BillS
Hey Bill,
Sorry to hear about this. These things make you want to rip your hair out, including that of the idiots making these decisions. Let's see what we can do.
What organizations did they provide you? Have you checked our payment assistance thread lately? There are some updates. I recommend the PAN Foundation if you haven't called them.
You should contact your insurance commissioner tomorrow and file a complaint. Your state Senator's and House Representative will help you as well. That may take time but they do respond faster to emergencies. Then there's the Governors office, tell them whats going on. They can work with the insurance commissioners office. They can pry into stuff you can't, so tell them what's going on. They work for you. If all else fails, you may be able to get an attorney on it for far less than a $12K payment. Sometimes a phone call and/or letter from one can make a difference. A lawsuit to recover your out of pocket costs is also a possibility. You have the pre approval confirmation from all of your providers working for you.
These are just ideas Bill. I wish I could do more. I know you were told that 24 weeks was required. What's the possibility of 12 weeks doing the trick? I'll visit that information again and look for possibilities. Don't give up hope. I can only imagine your disgust and disappointment. Let's try and hold onto hope. Leave no stone unturned! Keep us in the loop Brother, you know we're here for you.
Tig
Just when you think you can sit back and rest easy, It all comes down to money ( GILEAD S GREED #1 ) and the insurance co's and the Pharmacy.
I'm told I have to pay $5,000.00 copay for month 5 and $6500 for month 6. I'm not so much angry that may have have to pay. but that Nobody flagged it before or even as I started treatment. And I Did Ask all of them.
The 12 weeks coupon was good for 12 weeks so was I riding for free
Last month (#4) Because the Harvoni $5.00 copay was up they emptied my copay allowance of $5000.00 per year, to cover the 4th month. They didn't tell me I was on my own now and star saving up $12,000.00 to finish. Harvoni said well heres some foundations that help. I make too much money based on last years income.
How? How? could everyone ( the ones above ) say don't worry you are approved for 24 weeks according to the drs approval the pharmacy insurance and then never ADMIT there would be a catch 1/2 way you should prepare for. I had been thinking of moving assets to be made available thinking What if but I was told don't worry your approved for 24 weeks ( even though that co pay only say 12 weeks ?) YES It even says in my bottle of pills 2 refiles left. I asked the parmacy last month about the 12 week coupon, No sir you are approved for 24 weeks.
Whats the catch? everyone was getting paid. Their all on the dollar train. It's like using sky-miles that run out 1/2 way They kick you off the Plane? WTF > may have borrow the money to stay on the train but I'm shining my shoes and deliver a message they will find HARD to SIT WITH. Lucky I had Doc appointment already scheduled for Friday anyway to do the 12 week check up. The Nurse on my case got right on it and says she will continue Monday morning.
Never Never Never fully trust these Greedy Bastards. Now that I vented
I'm Grateful
1st. For all of U for keeping me somewhat sane all the advice and knowledge you've put into me. All the laughs and tears
2. My doctors and especially my Nurse who handles my case and got me this far. BTW 12 week blood UND liver numbers all OK Except platelets
3. That i do have good insurance and good job I'm blessed to have had very little trouble getting any care any time. i really feel bad for those who are not as fortunate, I really do.I wish I could help them.
4. I'm grateful that I have the choice to Ask God for the serenity to accept the things I cannot change (and try to really mean it) I'm trying not to dwell on still kicking someone for this.
5. My family who puts up with me
6. Any advice on how I might proceed and not have to pay for this?
Bills