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Post Info TOPIC: Furious!
jimbob


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Furious!
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Tig & Malcolm-

Well, I spoke with my insurance and specialty pharmacy. Pharmacy told me they'd like to know even tho it isn't specifically required, and insurance stated it was ok as long as it was coded 'in office' and was not exprimental. My concern was having it billed in such a way that I might be responsible for the cost. So, I called the gastro and basically said the SP wanted to know and my insurance said it was okay. They agreed to change the test. The gastro told me yesterday he would change it if I requested it, 'but this is a reason medical cost are skyrocketing'. I'm glad we weren't face to face when said that.

Treatment thus far has been okay, but I'm starting have some issues with concentration and apathy.

Thank you both for your suggestions and imput.

jimbob



-- Edited by jimbob on Wednesday 2nd of April 2014 05:29:44 PM



-- Edited by jimbob on Thursday 3rd of April 2014 03:45:52 PM

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
mallani


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Hi jimbob,

This is a good reminder for Members to run through the Rx protocol with their doctor before they start Rx. As Tig mentioned, most Insurance Companies require the 4 week VL results to know if they will continue to fund Rx. Here's one example:

 http://www.aetna.com/pharmacy-insurance/healthcare-professional/documents/hepc-medication-precert-request.pdf

Note that aetna requires the 4 week VL result.

This was discussed at the recent liver meeting here in Brisbane. There is a concern about resistant strains to Sovaldi arising.  In most patients, the VL will be Undetected by 2- 4 weeks, but there is a feeling that Rx should be discontinued if not.  It's not the same, but once Penicillin was the all-powerful antibiotic, and look at it now.  Sovaldi use needs to be carefully monitored, and failing to do a 4 week VL is sheer neglect. Good luck.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hey JB,

Something just crossed my mind that may make a difference. While on treatment, I received a call from my specialty pharmacy. They asked me for some updates prior to sending one of my months Rx. They wanted the dates of my last labs and recommended that I remind my doctor that they needed to have confirmatory reports that these drugs were doing what they were prescribed to do or my Rx might be delayed. When they contacted the insurance company, they were required to confirm the drugs were effective. The only way that's accomplished was getting these results from the doctor or lab. They took my word for it a couple times but I did tell my doctor that I was being questioned on the lab results. There is a treatment algorithm provided by the drug manufacturer that indicates the appropriate testing protocol. Every doctor, pharmacy and insurance company should have and follow this protocol. Remind them of this and see if that doesn't get you the results you're looking for. Good luck!

Tig

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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jimbob


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Hi Rob.

Yes, you definitely need to know what you're talking about as some will either give you wrong info, or they simply don't know and pretend they do. This board has been the best source I've found. You may go the treatment and never have a problem with your doc, many on here do. But what you find on here is good to know in case you do. Actually, everything has gone smoothly for me except for getting support from the gastros. Make sure you have a good PCP that you can lean on case your HCV doc turns out to be worthless like mine.

Good luck with your upcoming treatment and don't let what you read prevent you from going ahead. I'm very glad I started.

jimbob

 

 

 



__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
jimbob


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Hi Angie.

I considered asking my PCP if he could do it. He has saved me once before when the gastros were either incapable or unwilling to help with the headaches. Also, I'm having my PCP check with an infectious disease specialist in another community 75 miles away. I've lost all confidence in the group I'm seeing.

I hope your treatment is going well.

jimbob



__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Fireman Rob


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Ugh... The frustration of waiting for treatment and now this. Well, at least we are learning about the right questions to ask and which information is paramount from others here.

I'm sure glad I have access to you all as I'm waiting for treatment verification. 

Hang in there jimbob. Sounds like you're doing great!

-Rob

 



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
jimbob


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Thanks Grouper.

I'm in a PPO. And that's exactly what I explained to them - how do you know if it's working, and if not treatment would be discontinued, etc.  My understanding was the 2 week labs werefor that reason. I've caught this group in several slip-ups. They are gastrointestinal docs. There are no hepatologist in the town. I'd have to drive 120 miles one way to see a hepa doc.

jimbob



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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
AngieV123


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I'm coming up on week 5 of the same treatment and they did a 4 week VL along with a bunch of other stuff (don't have the results yet) and they will also check at end of treatment. The week 2 and 8 labs are the only thing in between for just CBCs. I would think that if you asked your regular primary care doc that he/she may be able to do your VL test? Worth a try.

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Type 1a. Had HCV my entire life via blood transfusion. Did peg & riba in 2000, relapsed. Did triple tx with sovaldi in early 2014 & I am now undetected 
HR


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Yeah, that's weird. It seems like the insurance company would insist on a VL at 4 weeks. I understand your anger. Hang in there.



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Groupergetter


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James, I can understand your frustration and anger.  While I can't speak for the doc, everyone I have heard of on Sovaldi has a vl test done at least by the 4th week.  Some insurance companies won't pay for the ongoing meds if it can't be justified. My doc requested 2 and 4 week labs including vl.  How else would you know it's working?  Is this a gastro or hepatologist you are seeing?  Are you in an HMO?  You'd think the doc would want to know if the meds are working???  Sorry you're having to deal with this. 

 

James, maybe you should call Sovaldi and see what their recommended lab intervals are??



-- Edited by Groupergetter on Tuesday 1st of April 2014 12:03:40 AM



-- Edited by Groupergetter on Tuesday 1st of April 2014 01:21:49 AM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
jimbob


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Tig--

They have ordered lab test every two weeks already. That's why I'm ticked. I expected the test were for VL counts, as well as the other levels, so you can imagine my anger with this news.  I discussed this with them in the beginning and thought it was understood. Prior to reading your reply, I just got off the phone with them and explained exactly what you said. Nurse said doc will call me back when he is free.

Damn, I was feeling prety good today too until this happened, even tho I took the shot last night.

Thanks Tig for your response.

jimbob



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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Tig


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JB,

Remind them that you're not on "just" Sovaldi. There are two additional drugs in your regimen (Int/Riba) and they do require blood testing to determine their efficiency and affect. How will that doctor know if you may or may not be experiencing the well known anemic affects of both those two drugs, unless he orders the appropriate tests to determine it? My doctor tested every two to four weeks during my entire 28 week course of treatment. My anemia required a rescue drug, Neupogen. Not saying you have anything to worry about, but that's the purpose of those tests, to be sure. If you weren't taking Interferon and Ribavirin, then the requirements may be different. Anytime you want a blood test, and can afford to pay for it, I see no reason whatsoever (especially considering the treatment you're taking) that he can deny you this request. If he/she refuses to order the test, I would ask them for a referral to a hematologist that will order the test for you. Considering the treatment protocol you're on, and knowing how many VL's I had drawn during treatment, I know this is something your insurance company expects to see and pay for. Aside from the VL, I would expect to see regular (2-4 wk) CBC and on a 12 week course of this treatment combo, LFT's every 4-6 weeks. That just seems appropriate to me. Don't take no for an answer. They don't typically get a demand for blood work from a patient, DEMAND IT, they work for you... Good luck!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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jimbob


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I knew I should have changed doctors before I started. I have been waiting patiently for my 2 weeks lab report only to be told they don't do VL until the end of 12 week treatment (?). I asked the nurse to speak with doc and get back to me on my 4 week coming up. Naturally, I had to call them back. Nurse stated the manufacturer (Sovaldi) suggested no VL's until end of treatment. I asked her how do they know it's working unless they check, that my VL might be higher or not reduced significantly. Her response was that is what doc said. I asked to talk to doc. She stated she would let him know. I think this group is borderline incompetent.

Have any of you heard such a thing?  

On 4th week of Sovaldi, Riba, and Pegasys.

 

jimbob



__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
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