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Post Info TOPIC: Maybe not sick enough


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Maybe not sick enough
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Hi Iris,

Re: your Zep vs harvoni ques ... we have a number of folk who have done Zep here, and some are still on, some just finishing ZEP ... here is the list I know of:

 ... we have not had a "TON" of zeppers here, but some. A couple zeppers first appeared (briefly, quite a while ago) I can't find their handles right now for some reason, (maybe they were in trials?) they posted for a bit and have since moved on, I expect all went well.

Currently, aside from MyMallards, and JohnAnton1 here, we also have Rick (also hailing from Chicago), and Meow76, all currently on ZEP. A couple others (earlier) that we have not heard back from for a while - Silverecho (Canada, I believe), and mr tambourine man (UK). There were a couple others as well (I believe), further back? - but their names are not coming to mind if so ... also add Jmiff79 ...

Some of them are in this thread - Zepatier Warriors.

You can use the "search function" above and see who and what a search of "Zep" will show up, there is also info about Zep in "Hep C News" and in other catagories on this site.

I am glad your doc has at least made some alternate suggestions to you as far a drug choices, (he, asking you, what you think about switching to another drug regime, aside from the harvoni he first wished for you and repeatedly requested) but, this still does not get you past your main problem which you indicate is the insurance insisting you be F2 or greater

If zep is less expensive than harvoni, and epclusa is the most expensive of the three, and your doc thinks your insurance will suddenly just change it's mind on a "cost" basis alone - then it just highlights to me that the F2 "requirement" must be the insurances "bull". I would ask for the best and most expensive Gilead drugs I could get, failing that I would settle for less expensive Zep if that was the only way I could get treatment. But if it IS true that the F2 IS what the insurance is basing their denials on, then why would they then appove ZEP. Like I said before, I would be getting my doc to be asking for BOTH harvoni AND epclusa, you might get the harvoni in default! Ya never know.

I would still exhaust proving my liver was F2, by getting a fibro-scan, and have your doc request again for the first-choice drug he first wanted for you. 

Zep is effective, and I am sure it would do the job for you, but you would have to be checked for certain RAV's, just another extra blood test, and if found, then riba might possibly have to added (at least that is my recollection). Your doc first suggested harvoni, which has an excellent track-record for you, you being a GT1, and epclusa as well has an excellent track-record for you as a GT1 (and for all GT's for that matter).

Are you on ANY other meds, for other ongoing health conditions - that may have a small consideration too, in choosing regimes. (BTW - you mentioned milk thistle one time - I hope you were not on milk thistle at any time near to when you have had assessment bloods drawn - milk thistle can erroneously skew things to "look" better i hear.)

Hey, BTW - that was a very good data-filled post you first made on this thread (way back June 2016), if you have no further labs that are changed from this, or that you can add to this, you should put some of this lab data in your sig. line - helps for questions and sussing.

We'll see what else somebody else thinks on this zep thing. smile C.



-- Edited by Canuck on Friday 28th of July 2017 05:21:25 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Iris,

Sorry to hear you're having such a difficult time with all of this. I think you're deserving of so much more, certainly an award for perseverance. I hope you'll check in often and let us know how things are in your world. You are part of our little family here and if there's anything you want to talk about, fire away. We've got big shoulders and it sounds like you have every reason to lean on ours. You're among friends...

If your fibrosis stage is still F1-2, know that you  still have some room before cirrhosis becomes part of the picture. I realize that doesn't help with other things this disease brings to our lives, but it does give you some wiggle room. I'm also curious when you had your last fibrosis stage done. I'm with Canuck, you need a current eval and perhaps another set of eyes on your case. A simple blood marker test, like the Fibrosure may be possible. They're easy and shouldn't be that expensive. There are ways you can request that without a doctor's order, if needed. We have the power!

Let us know if there is anything we can help you with. You're not alone in this! Stay strong and never give up. The victory, when it comes your way and it will, is going to be that much sweeter! 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hey Iris,

Thnaks for the update - sorry about the state of affairs.

Hey, you sure need a sig line, with all your "particulars" on it - so we can see at a glance when you last had ultrasounds, fibroscans, progressing Fscores over time, current bloods, where your ALT/AST's/bili's have been and are at, and hx. Sure helps, instead of asking you stuff everytime or searching through the old threads. Altho you do have some good hx data in your bio.

I am giving your doc the benefit of doubt, but I am hating your insurance company - the fscore requirement is just BS in my world!

Did you ever go for a fibroscan, and what and when were your most current labs/U/S?

No one should be carrying HCV since since 1978 or 1988 and being denied/delayed treatment! I don't know what else you can do, except keep trying with this doc, or a new one, with this insurance, or another - maybe a current fibroscan would help? Good the "fatigue" card was used - when did your doc re-submit this fatigue-laden approval request? 

If they refuse you Harvoni again, next time, have your doc ask for epclusa as the first choice, harvoni as his second choice, they will probably give you harvoni in default! And, if you are refused, consider how to get out of this non-treatment bermuda triangle you are stuck in - new doc/new insurance/or new fibroscan might help. 

I hope you have your own file at home of all your tests and labs, just in case you have to make a dif move, to get treatment sooner. Being immunized (A/B/flu) in advance of treatment is a good idea, not just to better protect you, but saves a little time (to already have it done), when it comes time to start treatment.

Your doc can draw blood now, to test you, to see what your current levels of immunity to A and B might be, then you know, whether you need to be immunized (or re-immunized as the case may be).

I wish things were going better for you. Keep pulling. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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You guys are great to have concerns about me.  Thank you for giving a crap, because I don't get any support in my home.

Ok...putting this out there... HEALTH NET is the offending insurance company ...they will not treat unless you are f-2 or more. I am currently f-1-2. Not quite there, upside... liver hanging in. I get real sharp pains in the general area though. AND fatigue. ..oh yea...so the hepatologist is subbitmiting my debilitating fatigue this time...don't know why he would not have done so last time..and possibly to try something other than Harvoni. (That makes me worried) Cardiologist said no problem, he will call hepatologist and clear me for treatment. I should know more soon. 

Not an I v drug user.,  never was...I smoke some pot here and there, and wtf, not going to miss out on a frosty ale every now and then either. I'm partial to Firestone Walker on a hot ass day. I'm tired of putting my life on hold for this ****. Damn and whatever. I'm about to file for divorce from my hub of 34 years. Talk about a doper. Think about the song DONE by the Band Perry. That's me.  And someday I'll be DONE with HCV too. Would be nice if it all happens in the same month :)

I'm obviously feeling a little punchy tonight. Iris



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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What? They want to wait until you are sicker? Man that it SO wrong. That, I must say, really upsets me to hear that. Hope it isn't the case.

Are you still waiting?



-- Edited by LamontCranston on Sunday 23rd of July 2017 04:44:11 PM

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Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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Hey Iris,

Over in rant and rave we were discussing this below (excerpted) ... I can't stop thinking how not correct it is that your have not been offered treatment as of yet, as in our past discussions on this problem of you waiting, I am of the mind that you need a dif. doctor firstmost, and secondly that you need dif insurance. Did you ever go for that fibro"scan" we spoke of previously, when was the last time you saw your doc? How have you (and your Mom) been getting along? C.

JimmyK wrote:

 I have a sister that was paid to drive to UCLA to be treated and is now HepC Free.


 Whaaaaaaat? Was she stage 4? I went to UCLA for over 2 years and they would not treat me unless I was stage 4,  she must have known someone? Or was it a trial...because they were not doing trials that I know of when I was there... Argh.

_________________________________________________________________________________________________________________



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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I don't know what criterion your healthcare insurance uses to determine who gets what, but if I were making the decision....

I would get you treated fully, until totally clear, since hospitalizations, and of course , liver transplants cost more. That would be me decision. 

I have almost normal AST / ALT numbers, but am early in the diagnosis process, and will see my gastro for the first time, about this anyway, on Friday.

Hoping he says what I hope yours says. "Pick up prescription at the pharmacy, and be free of this Hep C."

 



__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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Juliet,

That is very nice of you, whilst in your turmoil and wait, you spend time, thought and research to try to think of things to help Iris in her wait. Very kind of you. Truly an altruistic (selfless) act to think out loud creatively to solve a horrid problem that needs rectifying and resolution.

I like your food for thought Juliet. C



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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The way "Big Brother" keeps an eye on folks here in The US, a record of IVDU can follow you for a long time.

Food for thought only. wink

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I was so baffled by Medi-Cal's apparently automatic approval for IVDUs that I did a bit of sleuthing. Turns out Pablito is correct: they believe that IVDUs will spread the disease to others. Probably they're thinking, "IVDUs could give it to other Californians and we might have to pay for their treatment, too!"
Follow the money, you know.
I'm generally a quite honest person. But I have to admit that if I needed treatment and the system was screwing me, I might very well fudge a bit to get approval. If I found a loophole I could use where a doctor or insurance organization would have to take me at my word, I could see myself claiming that condition to get what I needed and deserved.
Of course, decisions like this are very personal, and you can only do what feels right for you.

__________________

HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.

Tig


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Cheddy wrote:

For anyone who gets robbed by their insurance goblins, keep pushing.  They are often crooks, in my opinion, but they are not stronger than we are.

We slay dragons, after all.

_________________________________________________________________
Slay Dragons you say? Why, yes, we certainly do! We're getting pretty successful at it too! Goblins be damned....
image.gif

 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Yes, fatigue counts.  Fatigue was ruining my life. It was my worst symptom, though not the only.  I was approved right away, without outrageous result on other test. My hematologist had warned that it could take repeated submission for her to push it through so we were all surprised.  Perhaps it has to do with individual insurance provider.  

For anyone who gets robbed by their insurance goblins, keep pushing.  They are often crooks, in my opinion, but they are not stronger than we are.

We slay dragons, after all.

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Juliet you make 2 good points there.

Firstly, in terms of qualifying for treatment fatigue is one of the symptoms that doctors cannot measure so if indeed Iris is feeling debilitating fatigue out of keeping with the state of her liver, well, then this extra-hepatic symptom should be communicated in full.

Secondly, re IVDU the argument is, I believe, that if you treat a drug user then you reduce the spread of HCV more so than treating an non-IVDU.  The policy has gone 360...back in the day (the unofficial) policy of my then treating hospital was not to treat ex-IVDUs...OK, I've over-egged the pudding there...I don't know this to be true...it's just what it felt like.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Be careful Juliet, it appears as though you have a bad case of good common sense! There should be zero delay in treating anyone requesting it. I had to take drug and alcohol tests before treatment. They wanted to be sure their money wasn't spent on an active user. That was back when treatment costs were high, but probably half of the new DAA's. Hard to know what the new guidelines are when they change something so often.

Our Sister, Iris, has been needing this for a long time. It's her turn and these delays are terribly unfair and unnecessary. Get er done people! Take care of our friend.

I hope you got some good news from your cardiologist, Iris!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Iris, first of all, I wanted to tell you how sorry I am to hear that you were denied. It's beyond ridiculous that your insurance offers no coverage until your liver is actually damaged. What if they denied treatment for cancer until it starts to spread to another organ? I guess I wouldn't even be all that surprised.

I'm a real newbie at this, but I just looked up the Hep C policy on the Medi-Cal site and noticed this in the listing of conditions that qualified people for treatment:

"Debilitating fatigue impacting quality of life (e.g., secondary to
extra-hepatic manifestations and/or liver disease)"

If you are bothered with fatigue, could your doctor push for treatment on this basis?

Now this is weird; another qualifying condition is:

"Active injection drug users"

I would think that would be a DISqualifying condition because of the fear that someone doing IV drugs could contract an additional infection. But that's what it says. Heck, if it's really true, I'd probably go in and say, "y'know Doc, I do have this certain bad habit..."

There may be other loopholes that could apply to you:
www.dhcs.ca.gov/Documents/Hepatitis%20C%20Policy.pdf

I'm the type of person who likes to sift through all the fine print. Sometimes you can find some really useful information that can help you get what you need.

__________________

HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.



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Thanks for explaining that Canuck, makes good sense. Seems as though I can feel it near the top, wonder if that would be a scarred area, I'll ask the Dr. about that test when I see him next.

Yes Jimmy...I absolutely count my blessings. I just get disappointed. ..I waited almost 45 years for a cure to be discovered, I guess I can wait a bit longer, eh?

Glad I have you guys to talk to, really grateful for this forum, oh and the pain in my shoulder blade has lessed quite a bit, called the cardiologist, they going to bump up my appointment.

Bye for now, Iris   smile



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hi Iris,

Good you are working at it.

I should repeat, that "Acri-test, Fibro-sure, Fibro-test, Apri-score" is NOT what I refer to when I say FIBRO-SCAN.

BTW - it's not "fudging".

I am a firm believer (hee hee, no pun intended) that fibro-SCAN(s) are an important tool/part of a good work-up.

It is my understanding that some parts of a person liver may well be more fibrotic (harder/denser/scarred) in certain areas, than in other areas. The FIBRO-SCAN, is usually a "representative" averaged calculation, often comprized of multiple points/readings, sometimes up to 12 sites chosen on your liver, of these sites tested you may well see some areas that have higher readings and some lower. But with fibro-SCAN's, the "averaged" compliation of the individual kPa readings end up equating into an end F-score, such as F 1, 2, 3, 4 and higher.

There are many threads on the site speaking about fibro-SCAN's, the good. bad and ugly's about them - the bottom line, in my world, is that they have a VERY important place, as do biopsies and other methods, and other forms of assessment. But in my case and (perhaps) yours, I am also looking at the value of fibro-SCANs in another light.

In my case, about 6 months prior to trial, during my very first (ever) fibro-SCAN, the technician performed a very careful, thorough (generally representative) fibro-SCAN assessment test - he chose 12 distinctly different areas of my liver to test. The end result  was arrived at by an "averaged" compilation calculation comprized of all of the 12 sites he measured/tested. My first fibro-SCAN score "averaged" 12 kPa, making the F score I received - F3.

My second fibro-SCAN, done closer to the trial (while waiting to know if I was going to end up indeed "qualifying" for the trial) was done on the same machine, but by a different trial nurse who knew how much I wished to be in the trial. Her technique happened to be a bit different than the first operator. She did not do as many different points, as in the first scan, instead she seemed to focus in more on one section. Why I do not know - but, I can suppose, she wished to investigate/record a particularly higher reading there? Only 5 or 6 point readings, mostly all in one (harder) area? My "averaged" kPa readings for this 2nd test was 12.6 kPa - F4. So, you can see why I gave this some thought - the differences between how the 2 fibro-SCAN's were performed by the technicians and perhaps thus the higher F4 score for the 2nd fibro-SCAN?

I soon got in the trial after the second F4 fibro-SCAN.

In all probability I would have qualified for the trial anyway, just being an F3, but higher F scores, in general, are indicators of the degree or severity of cirrhosis one may have, so these higher fibro-SCAN scores, may help people "qualify", and/or in your case, get "approved" sooner.

Fibro-SCAN's offer more than just being a valued part of a good hepatic work-up and assessment, but can help in other ways too. It certainly got me thinking about the "other" values a fibro-SCAN may be able to offer to people.

I believe the technicians can see/know/guess (especially if you have had a prior fibro-SCAN) at which points/areas of your liver there may be higher/lower readings.

Just sayin'!

I have heard of stories (for goodness sake's!) where desperate people wishing for higher firibroscan F scores had tried to literally stuff themselves to critical mass bulging to enhance/exert extra abdominal compaction/pressure thinking they could effect a heightened firmness in their liver!

Sorry for your delay to treatment Iris, I really am, when we are so willing! And for the added disappointment of that Harvoni call. Do keep taking good care of yourself, it is your number one job. Don't let anything slide, we want to be in as fine a form as possible for "day one". It WILL happen. No one should be denied treatment of their HCV,  no matter what their F score is. C.

 



-- Edited by Canuck on Wednesday 10th of August 2016 06:04:28 PM



-- Edited by Canuck on Wednesday 10th of August 2016 06:12:15 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Personally I would not attempt dehydration to hopefully achieve such.

Ask for them to do the FibroSure test. Blood draw and less expensive I might add. My understanding is a Blood Test, Fibro Sure tends to exasperate the findings some. However the F Level recorded is considered reliable data for the purpose of Insurance.

I specifically opted not to do a FibroScan because I felt the results would be less severe for the purpose of approval.

Now in perspective please remember. The fact is you are not at this time urgent and being denied. That would be a completely different scenario and perhaps worthy of the stress you are feeling.

Try to chill Sis. Look at the bright side of things. Consider the paragraph above this one. Make that your focal point. Pray for those in urgent need that are being denied and be thankful for your present status. You will get this thing when the time is perfect to do so, of that I am confident.

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Fibroscans are said to be accurate in determining at either end of the fibrosis scale (i.e. F0/1 and cirrhosis) but are less good at assessing F2/3 so you could make an argument around your score being potentially higher than the last one indicated.

Also, I've been told dehydration can make the score appear higher. I don't know this to be true but it kind of makes sense in that a poorly hydrated liver is less elastic. You might want to consider not drinking any fluid on the day of the next scan.

Very frustrating knowing the meds are in the pharmacy but you can't get them....know any Drug Store Cowboys? (only joking, of course)



-- Edited by Pablito on Wednesday 10th of August 2016 04:03:25 PM

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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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I appreciate everyone's input.

My return appt. is in mid Sept.  I guess we'll reevaluate then. The other fibro test he said was more accurate and could be a problem if we were tring to fudge the test?

Anyway, to twist the sword a bit, a pharmacy called to say they have my Rx for Harvoni but I can't have it. Why even call me??.??.....now I'm bummed all over again,  to top it off I've been doing a bunch of heart tests, that may get me first...wink today the pain is intense enough I'm considering a trip to the ER. but I really don't want to go.

Thanks for listening 

Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Oh Iris,

So sorry, (again)!

Like I said before ... you would be better served by having a fibroscan result of F3 (or more) to present to your insurers EVEN IF YOU DO NOT BELIEVE YOU ARE truly an F3 (quite yet)! Do you get me? 

I am so sorry for your wait, delays, frustrations. It is a long haul and exhausting (to say the least). It is maddening and disheartening, I know, to be thwarted by these cruel and seemingly never ending, impenetrable obstacles. All you want is to do the right thing, and they will not let you, and it is so important!! What is wrong with these people and this picture. It is soooo wrong!

But, you WILL find you have more fight in you than you think! Read my other old posts to you re: getting a fibroscan, think on this "concept" a bit. Re-group and see what you can do.

No one will ever take better care of you than you. You WILL find it in you, you WILL persevere and you WILL get the treatment you so rightly deserve.

Get your gumption back up, carefully approach how you can get the "higher" fibroscan results you need, even if that means you have to go through a different group of medical people. Did you discuss with your doc HOW helpful a "higher" F score would or "might" be, in your case, in relation to the insurer approving you? What did he say on the subject of what kind of fibroscan score you might need in order to "qualify" with your insurer "sooner" rather than later?

Do you have a copy of the denial letter - does it state the exact reason(s). If the denial letter does not spell it out, then your doc SHOULD, at least, be able to tell you whether he believes having a higher F fibroscan score would be the ticket to get you approved. If you doc cannot verify for you exactly what it is you need to qualify you for approval (now), then you can always inquire, directly, with your insurer for their "rule/guidelines" as to what would get you approval now, or what impedes approval (now).

Hang in there and keep fighting. Talk to your doc again about this fibroscan score question (if you have not already). If you have exhausted this subject (fully) with your doc and have no other avenues with him, for him to try on your behalf - then try another doc or medical facility who routinely has full easy access to their own in-house fibroscan machine and explain your "approval dilemma".

Find the place where thee fibroscan machine is, and make sure (before you have it done) that thee right sympathetic people are behind the machine, the one who does your scan must understand you are trying for/hoping for a high (enough) F score to qualify for approval.

That's my thinking anyway.

Keep trying. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Iris - I feel for you.  Nobody should be denied treatment for a killer illness.

 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Iris have you looked into the Clinical Trials in your area? I have a friend in So. Cal and she just completed one and is UND.

This one is only an example.

http://www.clinicalconnection.com/exp/EPVS.aspx?studyID=387065&slID=20280869

There are many more but I put this one here so you can get the idea. Your Doctor who wrote the script and wanted to give it a try should know of other trials that he or she could recommend.

As far as fight energy you have more than you realize. Just may not quite know your options.

Clinical Trials are funded and you do not need Insurance. You should give this avenue a shot while waiting for the December Fibro Tests. Zip to lose and quite a lot to gain.

 

Regards

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I'm feeling even more gray now... did the color here change?

So I just got a letter from the insurance company.

*Denied*

furiousI don't really have fight energy in me.cry



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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There have been multiple class action lawsuits filed and success has been made on many fronts. Medicaid, Medicare and several private insurers have changed their approval guidelines. Dave, posted yesterday, in another thread, an article about this. 

I wouldn't take no for an answer. Keep fighting and refer to decisions like this. Chances are, if this hasn't happened in your state yet, it will.

Insurance Changes



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Iris,

I think it more and more likely, in the very near future (and I do hope it is not much longer of a wait for you) that you will get approved. We are seeing younger folk, and folk with low(er) fibroSCAN scores now obtaining treatment. The tides ARE trying to turn regarding fair access to drugs.

I hope you get approved this time around. But if you do not, then have another discuss with the doc, he could help you with advice/strategy regarding appeal.

In the case of denial or appeal, I do think it could very well be helpful to your case to obtain a fibroSCAN ("the kind" that I hinted at before, my prior post below), a fibroSCAN score that succeeds in showing your F rating is actually higher than your "fibrotest/actitest" is. This would help.

Ask your doc about ordering a fibroScan for you maybe, and, whether a fibroSCAN (that obtains a higher F score than your "fibrotest/actitest" showed), a fibroSCAN F3 result for example, might help your case.

Of course, let your fibroscan operator person know: ...that this is one time you are really hoping for "bad news", that you actually hope your fibroSCAN test results are going higher than your previous assessments (the "fibrotest/actitest" rating), and that a F3 would be very nice please!! - as it might mean the dif between whether you qualify for treatment approval, or not... Just so as to make the operator aware of your hopes and plight.

But my fingers remain crossed, that you are a shoe-in, as is, and will not have wait much longer. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Loopy Lisa wrote:

I found the article I was referring too:

Medicaid Ruling

 

Lisa, I needed to modify the link.



-- Edited by Tig56 on Friday 1st of July 2016 11:27:04 AM


 No worries, it is all good. :D



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 

Tig


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It's not nationwide, but the  ruling in a Federal court may be enough to set a precedent. I'm sure it'll be a step forward, but until they decide to fund these programs and insurance companies fall in line, we'll be dealing with delays. But, progress, however slight, is progress.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Try this link Iris. I posted about this the other day. Delaware has also passed a ruling on this. The problem with Medicaid and the VA seems to be where the money will come from to implement it.

Medicaid Costs



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Thank you Everyone.

This thread just shrank so small I can't really see it well

Lisa, can't open the link without opening yet another app :( 

Is it anywhere else? Seems I remember hearing about it, but it wasn't for every state?

Bb, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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I found the article I was referring too:

Medicaid Ruling

 

Lisa, I needed to modify the link.



-- Edited by Tig56 on Friday 1st of July 2016 11:27:04 AM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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I do believe there was a recent court case in the US where a court judge demanded everyone be treated regardless of fibro score because of the epidemic status - the insurance had to accept all scripts. I will try to dig that up soon. I'm not sure which state it was but it will set a president Here also we had the same ruling apply. It took me 3 years to access DDA's after my first failure. I have no fibroses but on my last VL count I was highly infectious with a VL count over 15,00,000. That indicates I was possibly infectious in my saliva and other bodily fluids. Your VL, is a medium level, but we have had people with over 32,000,000 million a few years back that went on to cure. Since VL levels are not important anymore to cure rates, it is only about getting healthy and protecting others.

I think now since Hep C is declared epidemic, most countries are wanting to clean it up before it ends up costing them a lot more in new infections.

Good luck and let us know how it goes. :)



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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Hi Iris,

It has been my experience that since you are treatment naive and not sick enough (in their eyes) they balk. Sad really. Eight weeks is the norm for a 1a that has not failed previous treatment. I got 12 weeks as I had failed 2 treatments prior. Hoping and praying they get you on board soon.

wendy

 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Iris,

Sorry for your long wait. The waiting IS bad isn't it - hopefully this WILL go through, it SHOULD!, you ARE "sick enough"!! It should not be like this, that you have to WISH for a higher F score.

If it does not go through, yes, appeal - but, as well, maybe a fibroSCAN (not a fibro-test) could be a valuable ally and "tool" in convincing "insurance" that you are indeed sick "enough" (by numbers)! It is just horrendous thinking on the part of bean-counting insurers - it should NOT be this way, you ARE already sick enough, but, if that is what it takes .... then a "fibroSCAN" (when adeptly performed)CANlocateTHEE "hardest" parts of your liver (as well as the less hard areas).

A "well applied" fibroSCAN, by a person who also wishes to see you succeed in "qualifying"(as an F3), hopefully could find a higher reading in you. This would satisfy the box tickers.

Whether we are F0-1, or F4, we are all sick and needing treatment. They are sick(in their old school thinking) that we must be kept waiting until we are F2/3 to "qualify"!!

I hope it goes through for you, as is. As a GT1a,what specific drug choices have you been discussing with your doc?

Sorry for your troubles. Hang in there, maybe it WILL be sooner than you think - hope so, fingers crossed. smileC.



-- Edited by Canuck on Thursday 30th of June 2016 05:40:19 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Thanks you guys ,

yea...he did mention an 8 week course at around $60,000.oo dollars.  Eight weeks...after it being present in my body for about 40 years now ??...just doesn't seem long enough, ya know? 

That alpha 2 test then, may be to my advantage? Yes...Crossing toes now. biggrin

Since my insurance is still through medi-cal there's probably not much I can do but pray,... let's hope it goes across their desk for approval snag free.< that mark is a star :) but it's not showing up confuse

It's been a long time since I've been hanging around here, so nice to be around people who get it. Thanks for being there.

Bb, Iris 



__________________

in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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The Alpha 2 test is a good one to assist in supporting approval. Can be used for Diabetes and / or Cirrhosis as it is a protine produced in The Liver. The score came in a bit high. Not such a bad thing when considering the Fibro Score along side but will support the need to treat now better than later.

If the Insurance Company is smart they have a good Candidate for 8 weeks treatment Plan before them. A delay could only extend the inevitable need for a more costly approach.

The HCV RNA is high enough to treat now, successfully and before more costly damage occurs.

My 2 cents

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi Iris,   Based on your numbers it would seem that you are doing well, but you still have had the virus a long time.  I would think the insurance company would want to treat you based on today's knowledge and good drugs available.  The alpha 2 lab , I believe is  one of the fibrosis liver tests.  I pray your medical plan will approve you for treatment and you can be free from HCV.  If the insurance company sends out a denial I would definitely appeal there decision.   As far as improvement on liver fibro after treatment,  Defiinitely!! Mine did.   Best of Luck.  Chris



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F 63,  1b  1974, no cirrhosis, fibro scan 5.8 F0-F1,fibro test .37 ,V/L 702987, ALT 90, AST 75.  ABBVIE Topaz II on 10-30-14 Viekira Pak no RIBA , EOT 1-22-15 SVR, ALT 37, AST 29, 4-15-15 SVR12 - fibro test .22,  1-21-16 SVR 52 ,  1-21-17 SVR 104! 1-21-18 SVR 3 years.



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Hi folks!...had my return appt today after the many viles of blood drawn earlier this month to see if I qualified.

Here's  a couple results from tests that were high:

AST- 45

ALT- 53

AFP - 6.2 (which is lower than it has been)

HCV RNA quantitative real time PCR - 3,089,038 (log- 6. 49)

Fibrotest actitest - FIBROSIS SCORE - 0.43  FIBROSIS STAGE- F1-F2

Alpha 2 Macroglobulin -  384 (I am completely unfamiliar with this test, what are they looking for here???)

So this is what the Dr.  said...he didn't think my insurance would approve because my fibro test wasn't F-2 or more. He was still going to write the script and submit it with the hopes it will slip past. With any luck the Pharmy will call and tell me my Rx is ready.biggrin If not another fibro test in Dec.hmm

So here we are, waiting wondering. Crossing fingers.

What are the chances the fibro will repaire itself within the liver, once the drug is administered ?

Thanks for being there, Iris

 

 

 

 



__________________

in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

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