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Post Info TOPIC: Try try again
Tig


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SF & Gracie,

My wife is a Sonographer, we have a mobile U/S company that keeps her busy and me handling the phones. It really is dependent on the technologist and their skill and experience. They tend to develop habits and a good one is consistent. I'm lucky, I have the same tech each time and my only payment is cooking, cleaning and answering phones! What a deal cry

Sadly, we don't have the equipment to do Fibroscans. I do have 6 month abdominal ultrasounds and have all the measurements. So far so good. 

So important to stay on top of this stuff, especially those of us with high levels of fibrosis. The testing and treatments are improving rapidly. They continue to do research on drugs to reduce fibrosis too. It's such an improvement. One thing though, "They" need to help us find an obstacle free path to treatment. Too many regulations and barriers to care. With this disease, time matters... Tick-Tock



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Tig

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

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Gracie wrote:

Which brings me to the question... Can fibroscans be geared towards a higher score should that be the desired outcome? I'm asking as the test I had done was done by the drug company. They sent one around to all the small centres where they weren't available and it would be to their advantage to have the higher scores. Just curious if anybody has an information about this potentially being the case.


 

Gracie,

Firstly thank you for that link as there is actually a place listed there about 30 minute from me to get one. $100 is low compared to the $125-150 figure I have heard thrown around many times.

Secondly, My first Scan was of course paid for by the drug companies because it was in their benefit to foot that bill as a potential customer. Now that I am cured, I will have to pay myself and I have no problem with that.  With regards to if they fudge the numbers, who knows but I can say the first one I had that they funded was in the 47 KPA range but when I had the 2nd at the hospital that number went down to 33.5. Realistically, it matters not since it still has me very high, clearly but it does make you wonder if they have some input into the outcome or machines, technicians, spots can really be that much different.

 

Iris, good to hear you are moving forward. Keep going. There is a prize waiting

 

SF

 

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Hello Iris!

Yes I`m still around and checking in now and then, I`m just busy going through the process of trying to move house, as Tig rightly said.  It started off being quite exciting but that wore off quite quickly, and now it`s just stressful!  Lol. I`m optimistic that it will all work out fine in the end though!

I`ve just been getting up to speed on your situation and I really do sympathise, I know how long you`ve been battling to get onto treatment, it`s been several years now, and every time you think it`s about to happen something goes wrong.  It must be so hard for you to keep the momentum going when you`re tired and low in energy and  feeling demoralised by these constant setbacks and lack of adequate medical care, but I agree with Tig that you need to keep pushing forward in any way you can.  Extremely frustrating for you, and we all know it shouldn`t be like this, but sometimes you just have to make yourself heard.

Getting a Fibroscan test done would certainly be a very helpful step in getting things moving forward and I would get that arranged as soon as you can.  It`s not an exact science, as Pablo pointed out, and whether it can be skewed in your favour is possible but not certain, but at this point you need as many factors on your side as possible. 

Also, check out those advocacy links that Tig posted for you, these are organisations set up specifically for the purpose of helping people get access to treatment when they`re having difficulty with financial or insurance problems.  I think you need to make a plan of action on your own behalf at this stage otherwise you`re going to be overlooked again and again, I`m sorry to say. 

All the best of luck, and I hope all goes well with your mom`s angio next week, I know her health must be your main worry at the moment. 

You`ll get there in the end I`m sure, Iris, just try to stay strong and don`t give up!  II`ll be checking in again for your updates.  In the meantime, look after yourself well and prepare for the battle ahead! 

 

 

 



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Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 

Tig


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Hi Iris,

Yes, Jill is still here and is very busy trying to sell her flat and find a new place. I spoke with her a few days ago and she's working hard. She always checks in to catch up, so I'm sure she'll respond. Please drop her a PM, I'm sure she would love to hear from you!

I'm sorry you're having such a difficult time getting past all these clinical and financial obstacles. Don't quit, be assertive and let them know you've waited long enough for your ride on the SVR express. I also understand how exasperating it can get when you constantly get put on "Hold". Lets try to get this figured out, okay?

You probably haven't reviewed the list of payment and advocacy programs listed here. I want you to contact them and see if they can help you resolve this lack of attention and cattle car medicine. There are organizations that can help with copays, deductibles and access to care. It will take effort on your part to sit down and speak with them, but I think you're ready to do whatever is necessary. I keep the link in my signature line for future reference and I'll post it below. Let me know if I can do anything!

Payment/Advocacy Links



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Tig

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

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Ha, ...advocate for me...

like I had said in an earlier post, when I first tried to contact this doctor, they wouldn't even call me back. I think it was the fifth time,  I had all but given up. No one seems terribly concerned. Now that I am seeing this hepatologist its like a cattle call over there. They use no less than 5 rooms and move you from one to the next. First room is screening, where they have asked me the same questions each time (of my 3 visits now). To top things off my co-pay has doubled as of last visit, WTF.... no one informed me of such a change. I'm soonly not going to be able to afford Obama care. Thankfully I have someone who will pay for the test, which yeah, I was shocked was only  $75 dollars, maybe they left a zero off on the end :lol:

Anyway thanks, you guys are the best, and I'll be sure to check those links out Tig, thank you so much. By the way is Jill still around?

Blessings,  Iris 



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

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive 

Tig


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Iris,

I want to provide some advocacy resources in California, just in case you haven't seen or contacted them.  Leave no stone unturned. I will help you any way I can.



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Tig

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

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Being dehydrated apparently makes the liver less elastic and leads to a higher score.  But I wouldn't imagine that it's much of a difference.  However, the big thing that makes the difference is the person doing the scan.  If they are inexperienced it can lead to an inaccurate score.  And, finally, fibroscans are accurate at either end of the fibrosis scale, i.e. minimal fibrosis and cirrhosis. For F2-F3 they are less accurate but by how many points I can't say.  I have a friend who scores 12 on his fibroscan (i.e. F3) but he qualifies for the Skipton Fund (a UK body that awards compensation to people who acquired HCV through blood  products) extra payment for people with cirrhosis despite cirrhotics usually having an F-score of >14.



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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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Which brings me to the question... Can fibroscans be geared towards a higher score should that be the desired outcome? I'm asking as the test I had done was done by the drug company. They sent one around to all the small centres where they weren't available and it would be to their advantage to have the higher scores. Just curious if anybody has an information about this potentially being the case.



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Fibroscans are $100 in Canada and no need for a physican's referral, so this could be the cost. You do need an advocate. Is there somebody who could recommend one for you in your area? Stupid bunch of crap one has to go through just to get what they need. Hope it gets easier for you.

 

http://www.liverscan.ca/faq



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.

Tig


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Iris,

Your doctor's office should be advocating for you. They are the first to assist you with an appeal. Lets just say they should be.

If you need a fibrosis staging, then a $75 Fibroscan (Ultrasound) or a Fibrosure (blood test) is the way to go. I've never in my life heard of a Fibroscan for that price. That must be with insurance? It would seem so, but many insurance companies will cover the blood testing. So many rules, it's hard to keep up. If you get that done, perhaps the rest will come easier.

Diabetes should have a bearing on approval. Often people witness an improvement after SVR and your kidneys are forever grateful when that is better controlled. 



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Tig

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

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Thank you for everyones relpy It really means a lot to me biggrin

As far as I can figure it is the fibrosis score the insurance co is looking for. The dr. said if I had diabetes the score would be moot. WTF? I told him I have been having heart issues. ..does that count? Crap....I have to go for a angio in a few weeks. 

When the insurance denied me, they said I could apoeal. Like I said in an earlier post ...I don't think I have energy for that. After screwing with them for most of last year and even having a hearing over the whole matter,  I wasn't completely on line untill October, and I started the process in February. The situation messed up my taxes which I ....for the first time in my life, havent filed yet. (My extension is fastly running out) I'm  not good with appeals and loopholes, wish I had an advocate.

The test (fibroscan) which I presume is an imaging sort instead of a blood test is in his main office in Beverly Hills and will cost only $75.oo. Do not have an appointment for that yet.

Next week I must travel to my mothers house, she is having an angio procedure too, right now this is my main concern. She will be 88 next month, and I really need her around.

Again, thanks for your responses, blessings Iris



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

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive 



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I am sorry that you are having insurance problems. My Doc who I see at a local hospital had their pharmacy get a pre approval before they went any further. My doc thought that they would mot approve me, but they did. I had to go through a mail order pharmacy. They only called me when they were ready to ship. Not sure if all these medications have to go through mail order, but I think so. I did have a fibroscan and it was a F3. I had to be very pushy to keep the ball rolling. The squeaky wheel gets the grease!



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Tig


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Dearest Canuck (Chuck),

Would you like me to change your screen name The Canadian Computer? How about CC? You have a photographic memory or are quite busy researching each post. Whatever it is, your interest in our health and history is very impressive. We are all grateful for your thoroughness. I consider your messages to be a lesson that we can all learn from. All I can say is thank you! We are better for your friendship and presence. We have several thousand pretty great members here. I call that pretty cool...

Iris,

Demand some answers. It doesn't sound like they are all on the same page. If you can set up a peer to peer discussion between doctor and insurer, be it private or otherwise, they can hopefully figure this out. Nobody talks anymore, it's sad...



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Tig

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

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Sorry for your troubles Iris,

Some of your past tests you spoke of were as follows:

    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. If not another fibro test in Dec.


I am glad to see that you must have had that chat with your doc about a fibroSCAN. Was it your doc who agreed/ ordered/requisitioned/suggested you get the fibroSCAN done? - to see if you can get the magic (higher) Fscore your insurance company seems to be wanting - I am still not sure what it actually IS that the insurance company wants to see (what their stumbling block is). You said your old fibroscore (above) puts you at F1-F2. When you saw doc (this time) did he confirm for you, or did the insurance company actually say to you, that they want you to prove you are more than F2 (by "fibroscan") or else you will not qualify for treatment? - IS that the ONLY obstacle in your way?

It is not right , nor fair - but you must confirm for sure, what it IS that you need to do, to satisfy insurance and then make sure they get it. Whether it be a scan with an Fscore of more than F2, or, whatever their obstacles are. Did you try to speak to the insurance company yourself? (Others in the U.S. have done that I see). If insurance "insists" on a scan to "prove" you are "higher than" F2, one would think then the cost of the scan should be covered (another question for insurance).

If your doc cannot help you get further ahead on this, then you need to do everything you can, yourself, to sort it. Start with clarifying what ARE the stumbling blocks with your insurance, work from there, if indeed a higher score scan is the ONLY obstacle, and if insurance will NOT cover the scan, then you might "have to" bite the bullet and pay for your own to qualify faster. It seems ridiculous that insurance will not cover the scan if they are indeed needing this in order for you to qualify. In this scenario, if the "more than F2" scan is your only obstacle, then you risk the cost of the scan, and you risk not being measured at more than F2.

You need "firm" confirmation from insurance what IS preventing you from qualifying, if it is the scan then under what circumstances they would pay for a scan. How much does than scan cost, if I may ask?

Tig is correct, no one should be denied treatment based on F score, and as Jimmy suggested, inquire of your doc if a fibrosure might be higher or might be accepted by insurance over a scan. (Another question for insurance - would a higher fibrosure be acceptable to them over a fibroSCAN).

So sorry you are having so much trouble. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Actually Tig at this stage of the game, a FibroSure in my opinion would be preferable in that it tends to exaggerate levels upward. That makes for great validation and clinically acceptable justification for treatment.

Generally for the meds to have moved to a specific online pharmacy, such as say CareMark Specialty, That tends to infer that Insurance has made the move. But the need for the Prior Authorization, which includes time frame for care may be missing.

I can only theorize based on my own experience, but as I said back then, I am intent on helping others through that process.

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."

Tig


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Iris,

I'm curious about the Fibroscan. Is it simply a pre approval requirement? While I would more apt to trust the fibroscan for fibrosis staging, if the reason is just to get your medication in hand, can you have a FibroSure drawn instead? I'm not a fan of it but if they want numbers, it will give you numbers and is far less expensive. Then you can argue the Fibroscan authorization with pills in hand. They shouldn't be denying treatment for fibrosis stage anyway.



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Tig

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

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Gosh, that's frustrating.  It must be eating you up knowing the pills are just there in the pharmacy and yet you are being denied....Drugstore Cowboy time, methinks ;)



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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,

Frustrating!  It sounds like you're almost there. Yes, my came through the mail after approval.  For some lucky reason, it was quick.  

Have you had a fibroscan before?  Do you know why this isn't covered?

Sometimes I think insurance companies are a bunch of crooks.  Most often it just takes repetition to remind them of the deal you made.  I'm glad you are hanging in there.  Let us know when they step up.

 

 



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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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Hi Iris,

 

Did they by chance mention something like the need for a "Prior Authorization" ?

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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So I had my return appt. the other day.

This was because he suspected my insurance would deny my rx for Harvoni, and they did. However that hasn't stopped the pharmacy from calling me AGAIN to say they have my drugs but I can't have them. That was on Monday, my hepatologist is only there on Tuesdays. I don't know what they want from me...Firstly they call and want me to give them identifying info on the phone...I'm like ..,you called me, That doesn't bode well in my head. Is everyone else dealing with a pharmacy by mail? I just presumed I would be picking them up at my local brick and mortar pharmy. Anywhoo I really do not appreciate another call from them saying we have your pills but you can't have them. I told them to call the dr. Tthe next day. Don't know if they did. 

I will be getting the fibroscan test, but I have to pay for it out of pocket, insurance won't cover this particular one. So on we go......

Bb, Iris 



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

58 years on planet, Female, diagnosed 1976 as non a non b, VL 3mill+, Fibro f-1f-2, Genotype 1a, treatment naive 

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