Hep C Discussion Forum

Tig · Admin

Is a pause all right?

dharmabum · Senior Member

Not sure where to post this, but here is good mainstream opinion article on the Gilead pricing craziness. ...fear and loathing in America

http://www.huffingtonpost.com/jeffrey-sachs/the-drug-that-is-bankrupt_b_6692340.html?ncid=txtlnkusaolp00000592

Tig · Admin

Hi Bob,

Glad to hear from you again! I'm pleased to know that you have been approved for Harvoni. It's the new gold standard offered by Gilead and very effective, with few side effects if any. There are so many options on the horizon, it boggles the mind how fast the changes are occurring now. Good grief, a couple of years ago, nothing had really happened for a couple decades. The best improvements were Incivek and Victrelis and many of us know how fun and long those treatments were! But you should do well. I'm sorry about the issue with your unused Sovaldi and Riba. I would have a hard time throwing it out too. It would sit in my cabinet until it expired, then I'd hang onto it for another year and then throw it out! I hate to throw anything away. You never know, something might happen and it could be used... Good luck--

Joann,

Congratulations on your Und! That's fantastic! Let us know how things progress.

Tig

dharmabum · Senior Member

In my case, a 12 week course was approved, with initial prior auth required along with second month and third month prior auth required. I trust my doc to handle this and consider myself so very lucky indeed to have her. I am on my second bottle.

As far as treatment itself goes, I just got a verbal on my 4 wk labs and went from viral load of 5 million to UND. Not bad for a slow day in February!

Bob54 · Member

Would like to add to this thread that all of my difficulties in obtaining my Sovaldi, then Harvoni prescriptions were directly attributable to my Doctors processes and had nothing to do with my insurance co. Submitting the wrong forms, then incomplete forms, then incomplete diagnosis, then unsigned forms all lead to a lengthy process. In the end my prior auth was approved for 12 weeks to be dispensed at 4 week intervals with only the initial authorization, no monthly prior auth required. As it should be, if I've received prior auth for a 12 week prescription, why reauthorize every 4 weeks? I guess my point is did the Dr. get auth for a 12 week course or did he only request a 4 week prescription with every intent to reauth every 4 weeks? Perhaps so he could determine whether the med's were achieving their goal. Just sayin.

I was one of those who offered up my Sovaldi and Rivapak on this site a few months back. Because of the liability issues, it never occurred. I then contacted my Doctor's office who told me to send them in. When I did, I was contacted that they could not accept them and they returned them to me. $28,000 of Sovaldi and 3 months of Rivapak, don't remember the cost but know it's expensive. Just don't have the heart to throw it in the trash.

skewedButNotBroken · Senior Member

I paused for 4 days near the end of my treatment which ended 6 weeks early and I still achieved SVR12, but as Cinnamon Girl suggested, you should, if possible, follow the normal schedule.

Cheers,

Cinnamon Girl · Guru

Hi again Julia,

Sorry your thread went off in another direction, these things happen sometimes in a lively forum such as this.

My personal opinion is that you should follow your doctor`s advice on this, even though you don`t like him any more. I haven`t heard of a case where someone restarts a course of Harvoni or any other Hep C treatment after a gap of that long. You`ve responded very well and your viral load came down from 12 million to undetected by week 4 and so you must still stand a very good chance of SVR after completing the 8 weeks.

When will you have your next viral load test done, do you know?

Wishing you all the best of luck, keep your hopes up!

gerewolf · Member

Wow, I seem to have started a firestorm here about insurance companies. But my question, which has not I don't believe been answered is, can you take a long pause (15 days) between taking the 8 weeks and then continuing with the final 4 weeks? My doctor says I'm OK now and it's been too long to take the final 4 weeks. But I now don't like him very much because I see him as one of those workaholic Chinese doctors (I'm Chinese-American) who is a bit sold on himself.

shadow10cats · Senior Member

I am so sorry. I haven't been on post for awhile and just read this. I never meant to say anything to hurt your feelings and I apologize for doing so as that is never my intention. Please accept my apology

dharmabum · Senior Member

Thanks Tig, Rubye, Bill,

You are very kind. Anyone now on Harvoni has already done their due diligence... hopefully, others can benefit from our unique experience.

Joann

Started Harvoni 1-14-15 after failing peg/rib 2012

Tig · Admin

Rubye wrote

We need to be fighters but the point is in an ethical society we should not have to be fighting to get the drugs that can save our lives. Our fight should be about getting healthy, not knocking down road blocks.

I couldn't agree more...

Tig

Rubye · Senior Member

The entire crux of the matter is that we should be treated with respect and trust, just like people with any other disease. That does not happen. I know there are some good doctors but the ones I had to deal with this last year certainly did not give a damn about who I was at all. They were more of a road block than insurance. Insurance is insurance, but at the same time they should not be allowed to jeoparize a person's treatment, and as for Big Pharm, well we all already know they are only in it for the money and never really did make much of a pretense of wanting to truly help anyone. As patients with a life-threatening disease we deserve support and caring and help, not road blocks set up in order to save money rather than help a patient.

I'm afraid Hollywood is not going to come through for us Bills.

Actors really can't afford to take a stand on anything much until a cause already has support and has been accepted as "safe" thanks to the media twisting everything around. Tyler does do a good job of talking about Hep C, but you don't really see do many "stars" wanting anyone to know they have Hep C. It remains the skeleton in the closet to the extent that many doctors even refuse to help.

Anyway, Joann, I know what you mean. We need to be fighters but the point is in an ethical society we should not have to be fighting to get the drugs that can save our lives. Our fight should be about getting healthy, not knocking down road blocks.

Bills · Guru

I like the fire and fearlessness we seem to have about fighting the Dragon. It's been a fight for years and we should all give ourselves a HOO-RA ! did I say that right ? We are all in this together. We are tough and nobody will stand in the way of us getting treated and win this fight. We have so much fight in us We should be able to kick the $#(+ out of hep C without Harvoni. It's hard to be complacent to the system when we are grasping for this cure and missing one pill could be a powerful blow to our recovery or not. these clerical people do not realize what kind of fear is driving us.

I try to stay calm when looking for my next refill I call all the numbers I have till somebody says " I will do that " Nobody is going to have the chance to say oops i forgot or didn't do it yet. Then I ask when? and writ it down with a name. and call to be sure they are on it. I've been lucky enough to start while I have enough time to find a break in the chain and be able to fix it. It is up to me to be 100% proactive and not trust the person on the phone they don't know me and they don't my case. but they will by time I'm done. Yes it may sound like I'm talking down to child or a dumb ass but I'll apologize later or I'll get a supervisor. And I'll rat on the one that gives me a hard time. If I miss my pill on account of them they don't want to meet me. I'll Call my doctors office again and ask did you send them what they want? Write it down again It makes them responsible legally. The do record calls and such.

I was approved and have proof. I don't like Gilead's ethics and dislike the insurance systems protecting themselves and their money at my healths expense and worry. I'll be able to thank them when it's over. I'll always sympathize with the underdog and people who fall in the cracks. Reminds me of a friend who used to say When I get to Hell I'm gonna kick Ronald Regan in the ass Why I don't know but it was funny then. My thoughts for the people who let anyone with any illness like this wait are no where near as cute as a kick in the pants.

Just sayin

BS

dharmabum · Senior Member

Hi there BJ,

I am hyper aware of the inner workings of the provider system. I am certainly not going to fight the system here, and did not mean to suggest that I was ungrateful for getting this treatment.

But, I beg to differ...

first of all, they do not pay $30,000 - they do get a discount (federal and thru Gilead);

secondly, if the meds are not working at all, that is when they consider making some changes;

thirdly, my doc has all this under control - she is in the Yale, New Haven system and they do this prior authorization for all of their Harvoni patients and have done countless times before Harvoni came along.

I am new to this forum and I was tired and frustrated and really only wanted some positive feedback. I am a grandmother, so I know all about picking my battles, believe me! I have to be honest. Your post really hurt my feelings.

dharmabum · Senior Member

Gentle folks,

I finally got my 2nd month Harvoni; YES! Saw my doc last week and I dutifully pocketed the requisite 1 month lab slip - to be drawn from my shy hopeful vein on the 14th of February. I am hoping for the best and cannot wait for the doc to get that 2nd prior authorization (ugh) over to the insurance company.

Unable to forget that I am on pins and needles while I wait for results, I will be passing the time shoveling snow, giving my dog the perfect haircut as detailed on Youtube , the grandson and I working our little hearts out on our very experimental web site which will go live in 11 years when he is 18. I really feel that spring would come in mighty handy right now. March 8th the clocks change, so that will make a big difference in my mood, anyway.

When the lab results are returned and reviewed, I will post them here. We won't need to go demonstrate...these drugs are curing us! Just have to make sure that access to all is a reality.

Jo

shadow10cats · Senior Member

my thoughts on "...asked why must we continue to provide these prior authorizations......"

I am not an advocate for the insurance companies by any means. Mine would not even approve Harvoni for me even after I appealed so I had to go to Gilead. But - I do think I get why they are asking for these each month. It's not to give you a hard time, I'm pretty sure they don't have a committee sitting around a table thinking up ways to make our lives more stressful. And to be honest, if that is what they require, then that is what you will have to do. If you get organized & stay on top of this there is no reason it should get you upset or stressed. First I'd make sure that your Dr is aware a "pre-auth" will be required every month. Next, I'd mark a day on the calendar to call & make sure it was done. I would allow at least 7 - 10 days before you run out. If you call your Dr on 20th, I'd then call your insurance company on the 25th to make sure they have it & ask if there are any issues & confirm you will be able to pick it up on the date you need it.

As far as why is your ins company is requiring a pre-auth: Unfortunately, I don't think they give a hoot about how you are doing. Am I pretty sure they do care about handing out $30.000 worth of meds each month. I know for a fact many insurance companies paid out big bucks for some of the other drugs like Telaprevir without requiring pre-auths each month, only to find later on that a lot of patients were no longer taking it due to side effects & thousands of dollars of good drugs were wasted. From what I was told, many insurance companies lost tens of thousands of dollars thru sending out medications to people no longer taking them. I really believe this has played a large part in why they are so leery of handing out Harvoni. I think they just want to make sure all is well & you are still on the program & handling the drug so they aren't throwing money down the drain again.

Sometimes you have to pick your battles. But we have to take on some of the responsibility for ourselves & our health also. So if they want a pre-auth each month then you make darn sure it's done & if you have to pay your premium yourself (vs taken out of a payck) - you make darn sure it gets paid & on time. My philosophy is that I'm not letting anyone or anything get in the way of me taking this drug and getting cured.

Bills · Guru

Another creative Idea biggrin

What about the American Liver Foundation? They have always been on our side. I'm sure they are aware of our struggle but more people asking questions maybe will help get a fire going ?

http://www.liverfoundation.org/

Bills · Guru

I feel We are getting a raw deal " Just not a popular disease, as Linda states below. " HIV killed Millions and scared the hell out of everyone else. Remember Nobody liked Aids when it first hit as a major epidemic. Maybe politically incorrect but people said The Junkies and Homosexuals deserve it for being immoral. It took years for that stigma to fade into compassion.

The general Public only began to have compassion when Movie stars and Politicians and Rich people got infected. Followed by children born with HIV and medical staff Mothers fathers brothers sisters became victims I have at least a dozen close dead friends.

I think for us it's the cost that's a problem ( I blame Gilead ) ( I add the insurance Co's) And I don't think we are understood or a major concern to get us treated. They seem to have an Idea Oh we see people live with HEP C 30 40 years Why you all committing of the wood work now> Well because we finally got a cure that works. Are they look at the stats on liver transplants / liver Cancer / continuing to live unaware infecting more people. feel sorry for the ones like us who are sick and only have 30-25 % of liver left. Don't consider the people with no symptoms till they get closer to liver failure. And or Or continue to infect.

How about having Famous people speak up for us for example Steven Tyler had Hep C and many others ( Creative thinking again ? )

Bill S

RudiRoo · Senior Member

Bills wrote:
Just to be fair does anyone know 1st hand or family if Cancer patient typically go through this? how about aids ? Are we all barking up the same tree. Or are we just the stepchild nobody wants to care about?

My mom and mother-in-law both passed of lung cancer in the past two years. They got everything they needed and STAT. No questions, no foot dragging. Just care. My friend is co-infected with HIV/HCV. His HIV meds, no problem. HCV TX ? He's told he's not that bad and TX can wait. Very, very sad. Very, very wrong.

dharmabum · Senior Member

Linda,

Yes, I totally agree. It goes back to money. Deals are being made left and right with Gilead, so it will get easier as the year progresses. Only Express Scripts chose the wrong pharma to prefer. Last year, I worked with State Dept.

of Ins , State Advocate, and US Congress to open up treatment to all. Honestly, I don't feel that any of these agencies helped at all. Just not a popular disease, as Linda states below. Any moviemakers out there?

Rubye · Senior Member

My step-mother has Leukemia and she has none of these problems. Nor did my mother or father (cancer and kidney disease) but that was back in early 2000. I've read that people with AIDS had very similar problems gaining access to meds/treatment in the early days but don't think they have problems nowadays due to all their hard work to gain help from the Feds and the public. I'm afraid Hep C people will never get it together to be much of a political force to facilitate any kind of change. And it's for just that reason that the entire establishment is able to ignore what's right for Hep C patients.

Who knows, maybe it will change as more Boomers find out they have the disease. However, I'm afraid they will feel they will need to keep it hidden.

Michaele · Guru

The speciality pharm called me, and asked when would it be good to FedX my Rx. It always showed up on time. and I made sure they had to get a signature and not just leave it sitting on the stoop . Michaele They want to make sure you get it on time. I usually got mine a wk before I was out of pills

Bills · Guru

Just to be fair does anyone know 1st hand or family if Cancer patient typically go through this? how about aids ? Are we all barking up the same tree. Or are we just the stepchild nobody wants to care about?

dharmabum · Senior Member

I am so tired of trying to second guess the insurance companies. The specialty pharmacy actually called yesterday to set up the second Harvoni delivery. I have no idea if they will send the medication before the doctor sends the second prior authorization, but I will let you all know. I do not put anything past insurance companies. Even though they get huge government and pharma discounts, they still like to tell you that the meds cost them $30,000.00 a month. The cruelty and greed surrounding these new meds is truly unprecedented.

Rubye · Senior Member

I wonder if they are wanting to make sure you are undetected in order to give you the refills. I read where one person on S/O was taken off by his insurance at 8 weeks because he still had a viral count. I think they figure if it hasn't gotten you to the undetected point by 8 weeks then it is simply not going to work. Or, they are hoping you might slip up by not doing the extra paperwork and then they'd have a reason to take you off. I'm sure it depends on your insurance company though because mine didn't need any documentation once they approved the drugs. Scary stuff.

dharmabum · Senior Member

Harvoni, great drug -- stuck in a baaaaad system.

I have been prescribed and approved for 90 days of Harvoni; and have received one bottle (28 pills) with two refills allowed. The start date was 1/14 and I will have blood drawn on 2/4 in anticipation of having to submit a second letter of prior authorization to insurance provider.

This prior authorization will have to be submitted for my 3rd and last month, as well.

I called insurance provider and sincerely asked why must we continue to provide these prior authorizations, as it is upsetting for the patient who must become a sort of secretary for the MDs office. I explained that this is stressful and not at all healthy for a patient to have to consider that you may not send more medication if you do not successfully get a memo from my doc. They, of course, have no answer except to say that they want to know if the treatment is working. I think that they are looking to take you off the meds and save money. I specifically asked that if I am doing well after 1 month, will they withhold the meds. OH NO, they say. Yet they can give me no solid reason for the never-ending prior auth letters. I also asked if they do this to chemo patients. No answer, they did not like that.

Anyway, pay those insurance bills before 1st just to be sure, online if you can, because that is an instant payment and peace of mind. Take the Harvoni as diligently as you can, it matters...

I have a very good feeling about all of us on Harvoni. I think that we are going to do great on this medication. Get this virus out of me!!!!

Jo

RudiRoo · Senior Member

I like your thinking' Bill! From your keyboard to Gilead's marketing department!

shadow10cats · Senior Member

Re: Storing / Returning / Donating Pills

The reason no one does it is because once a bottle has been in the hands of someone else - opened or not, they can not give it to another person. Liability Issues. What if someone did something to their meds & someone got sick or died? Unfortunately that is the kind of world we live in. People have done it with aspirin on store shelves. Some pervert who thinks all persons w/ HepC deserve to die gets their hands on some Harvoni, contaminates it with some toxin, donates it to a Dr and that Dr hands it out.

I had the same thing happen when I started Telaprevir. I had to stop and I had 1.5 mos of it left, I had interferon & Ribavirin left. I was on a chat group and this guy was talking about how he had started his treatment and there was an issue w/ his ins company & they wouldn't refill his scripts. He had a few left but was about to run out & was freaking out bec if you stopped the Telaprevir you really could not start back up again & he'd be stuck waiting for another drug bec once you stop it you can't get back on it. So in private we worked something out. Sure he was taking a chance - he didn't know me but let me tell you he was so grateful! We kept in touch for a few months and he had enough to tide him over until it got straightened out. Unfortunately I think that the only way to do something like that is on a black market type basis. Just saying.....

Bills · Guru

Interesting subject

When I was on Incivek they had to lower the Ribavin from 1200 to 800 and 1000 at times. So I had 3 extra bottles when I broke through and couldn't give it away I did give to my Doc for them to decide or dispense in a case like this.

I have an creative thinking Idea What if we can return our unused meds at our doctor or Pharmacy ( especially harvoni and sovaldi or the big $$ ones ) The doctors can turn them in as unused and should get new safe pills from Gilead in return to dispense in such emergencies. It's clearly a matter of where the pills came from how old are they and liabilities if anything happens.

We know it's not costing Gilead much to make them but flushing $1000$ pill(s) somebody paid for is a crime. Meanwhile we have problems like this.

Do ya think Gilead would consider it good publicity in light of the price gouging

Just a thought

BS

-- Edited by Bills on Thursday 29th of January 2015 05:22:28 PM

Cinnamon Girl · Guru

RudiRoo wrote:
Just thinking creatively about this Jill -
I'm wondering if doctors can't risk opening themselves up to legal action if, for instance, a drug error is made with donated unused medications?

Yes Rudi, I agree, and the doctors who do keep spare drugs as an emergency supply for patients in need are doing so on an informal and purely voluntary basis.

I guess it could be done through pharmacies but then it would need to be properly licensed. There doesn`t seem to be an easy solution to this but it would benefit so many people if there were a way for it to be organised.

Miss B · Senior Member

Did you contact Gilead's Support Path? Maybe they can send you a few pills to bridge the gap until you get this straightened out.

RudiRoo · Senior Member

Just thinking creatively about this Jill -

I'm wondering if doctors can't risk opening themselves up to legal action if, for instance, a drug error is made with donated unused medications?

But what about pharmacies? Why couldn't they accept the medications and doctors could refer their uninsured or otherwise needy patients to them? I would think a pharmacy would have the resources to verify that the medications are correct and it wouldn't be a huge, time consuming activity and would probably be great for their marketing purposes?

Does anyone have any experience in this area?

I have a bunch of Zofran which is a crazy-expensive anti-nausea med that didn't work well for me. If my doc won't take it, I'm going to try offering it to the American Cancer Society for chemo patients.

Cinnamon Girl · Guru

Hi Julia, I`m so sorry you`re in this situation, it really shouldn`t have happened and I do hope it can be resolved as quickly as possible.

Your chances of SVR would be higher if you were able complete the 12 weeks but on the other hand you`ve been doing so well and it was great to see your recent 4 wks undetected result (belated congrats!), and it`s still possible that the 8 weeks you`ve completed has been enough.

I`m hoping for the best possible outcome for you, do keep us updated. Good luck!

Hi Tig, yes I totally agree with what you said, and we know that some doctors do this already so what`s to stop this being a widely accepted process I wonder?

Rubye · Senior Member

There's so much about how treatment is administered that is a tragedy. It would indeed be such a simple matter for a doctor to keep on hand extra meds for instances like this one, but they don't. Or at least most don't.

Well said Tig.

Tig · Admin

I agree with BJ and wanted to say one more thing. How many times have we had a member approach the forum with an offer of their leftover medication? Numerous times as we all know. As advocates for everything HCV, remember circumstances like this and use it in your attempts to make positive changes in our world of care. Here is a perfect example of a patient, through little fault of her own, needing these meds on an emergency basis and not being able to obtain them. If the treating doctors or facilities were willing and allowed to accept these left over medications, they could dispense them in an emergency to patients like Julia. Having no legal means to distribute these expensive and medically valuable leftover drugs, that will otherwise go down the drain, or in the trash, is a tragedy of the highest order.

I'm aware that there are some doctors out there that have somehow been able to store their patient's leftover meds and have used them in emergencies like this. Perhaps this is something you can ask your doctors about the next time you meet and see if this is something they can do or might consider. Find out if they will share how they were approved to do this. I think this would be a very valuable service for patients everywhere. It wouldn't be a loss for the manufacturer, because these supplies would fill in in an emergency, during a break in treatment such as Julia's and could be replaced when their supply stream was corrected. Nobody would be profiting at all, provided the doctor didn't charge a fee for doing it. Thoughts?

Tig

shadow10cats · Senior Member

Julia: It's very odd for any company, especially an insurance company - that deals with life saving & health issues, to deny services for one late or non payment. I believe they must, by law send you a notice that your insurance will be cancelled by X date unless payment is made. Whether or not that is required, they do send out a notice. If I were to be totally honest something seems amiss to me. I guess that it's just another example of how you have to be in control of your own situation & stay on top of things, especially important things like this. I would put a reminder on my cell or if you are on the computer a lot put one on the calendar in Outlook that way whether or not you get the invoice you know it's due and can go online and pay it.

It was wrong big time for them to deny your refill however if they hadn't actually cancelled your insurance. I am sure it all has to do with the price of the script. If it was a $100 medication things could very well have been different. but regardless, once you get this all straightened out I'd look into this a bit more. If they hadn't sent you anything about cancelling your ins and if it was still in effect when they denied the refill look into what your policy says about a late pmt. Then check with your state insurance agency & see what you can find out. It makes no sense why they would not authorize your meds over one late pmt when your ins was effective. Now if you got a notice of cancellation & you still didn't get it paid on time and your ins was actually cancelled when you went to get your script filled that's a whole other story.

More importantly, is it safe for me to assume that you spoke to your Dr about this immediately? Seems he'd let you know if you had cause for concern. I know when I was on Telaprevir if I missed more than "x" days (can't remember if it was 1-2-3) that the virus could potentially mutate and the drug would no longer be effective. Your doctor should be advising you along these lines however. Seems if he knew you might be without the meds for an extended pd of time he would be advising you of any concerns. It may be if you were off it for more than a week he may not have you go back on but you really need to take that up with him/her.

I hope you have been able to get everything squared away and you are doing well

Tig · Admin

Hi Julia,

I'm sorry you're having these difficulties with insurance. I simply don't understand why they did that to you. You should've had a 30 day grace period prior to that penalty. Aside from the frustration of that, if I were in your shoes I would be optimistic that as a 1b non cirrhotic, 8 weeks may be enough. Then again, I remember your viral load was 12 million and that calls for 12 weeks. But with that said, you were undetected early and are non cirrhotic. So I would be more optimistic than pessimistic that you may be okay at 8 weeks. I'm not familiar with the recommendations or practices regarding breaks in treatment with Harvoni. So this is going to be a question for the medical professionals. Keep us informed!

Tig

gerewolf · Member

Dear Hep C bros and sisters:

Thanks so much for your kind and informative response. I always get so much out of this group. Anyway, my next question is about the disruption. I have had 8 weeks of treatment. The my insurance company got bogged down in sending out January bills and so I didn't pay the premium. So then they stopped the medication because I didn't pay the premium. My husband called them and paid online and pleaded with them to get the medicine to her doctor. In the meantime, Storm Juno hit New York and things came to a standstill for a few days. My question: Is an interruption all right? Will it harm the treatment if there is a week or two-week lapse in the treatment? Thanks so much.

Julia

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