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TOPIC: my insurance and doc are holding me hostage

my insurance and doc are holding me hostage 2 years 10 months ago #23626

  • xaverl70
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hi world,

i discovered this amazing site after scouring the internet looking for any and all kinds of information that might possibly help me.

i was diagnosed with hep c over a year ago and ever since my viral load has been too low for the labs to determine my genotype. my doc tells me: let's just wait another three months and see if you clear it. the last such recommendation he gave me (last week) sent me through the roof. as i am sure everyone here knows: hep c puts one's life on hold. in my case, i've had no clear indication when that'll ever end. i've looked up the statistics on spontaneous clearance of the virus. a caucasian man aged 46 over a year in with the virus, the chances for clearing it are not in my favor.

and so i'm at the point of going it alone with the epclusa generic.

what i haven't been able to tell from looking through this site as well as many others is:

are there folks who are doing this entirely on their own without any blood monitoring during the 8-12 week treatment period?

can anyone enlighten me?

many thanks,

richard
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my insurance and doc are holding me hostage 2 years 10 months ago #23627

  • splitdog
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Epclusa from Beacon; "Sofosvel". A great choice, I would think. (I am not a doctor....) Maybe you can find a lab that would be willing to do a blood test for viral load only without a prescription. Cash can speak loudly sometimes. ~$180 in the USA. You're just looking for viral load anyway. Quantatative. ;) Where do you live?
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
Last Edit: 2 years 10 months ago by splitdog.
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my insurance and doc are holding me hostage 2 years 10 months ago #23629

  • DrJames
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are there folks who are doing this entirely on their own without any blood monitoring during the 8-12 week treatment period?

Sadly, yes, there are. How doctors manage to rationalise not monitoring someone who has sourced there own treatment is beyond me.

Anyway fixhepc.com/getting-treated/how-to-do-it/doctors.html is an outline of what we would do in a perfect world, however it's worth noting that it's entirely possible to just take the drugs for 12 weeks and do a blood test to see if you're cure 12 weeks after you stop the medication.

With an unknown genotype Sofosbuvir + Daclatasvir or Sofosbuvir + Velpatasvir are the drug combinations of choice.
a caucasian man aged 46 over a year in with the virus, the chances for clearing it are not in my favor.

The fact that your viral load is too low to get a genotype is encouraging. Certainly you are hovering between spontaneous clearance and chronic Hep C. This article www.medscape.com/viewarticle/521187 brings together a lot of the research on spontaneous clearance. The rate is about 25% and it can take up to 3 years. 10-20 months is normal - see the graphs in this article

onlinelibrary.wiley.com/store/10.1002/he...25831384ee8b714e5a05

So there is still a fair chance you will clear, but 8 weeks of DAAs would be adequate to seal the deal if you want to be proactive. You almost certainly don't need a full 12 weeks, but 4 weeks (1 bottle) is not enough to be sure.
YMMV
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my insurance and doc are holding me hostage 2 years 10 months ago #23640

  • happi
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Either combination of the drugs that DR. Freeman noted would surely clear you. The Sof/Dac is slightly cheaper than the Sof/Vel, but for the difference, I'd go with the Sof/Vel. It treats all Genotypes and has been widely successful.
Get treated and get rid of this disease. Any Primary care Doctor can order your blood tests. You need at least one at end of TX and One at 12 weeks post TX to see if you are cured.
This is only advice, but good luck to you. Please keep us posted.
Happi
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my insurance and doc are holding me hostage 2 years 10 months ago #23645

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wow. this is the most encouraging, most helpful, most uplifting thing anyone has said to me about my resolve to take matters into my own hands.

my hepatologist has stopped communicating with me for the most part and leaves his nurse to deal with me. my family doctor, whom i should have never trusted with my resolve to procure generics, told me it was the most irrational thing he's ever heard in his life and that he wouldn't even think about giving me any advice or help. he then told me: if i seek out my own treatment, doctors will refuse to deal with me, especially if i end up poisoning myself on fake drugs. talk about a horror movie scenario.

at this point, i have a standing order to get my blood tested once a month for HCV RNA but any of the additional hepatic functions are not scheduled to be tested.

yes. my understanding is that my doctor wants me to wait however long it takes to spontaneously clear the virus. but not because he necessarily thinks waiting is the best solution, but rather because my state insurance (i live in the southeast of the us) requires a genotype and a satisfactory fibroscan score to legitimize payment for the medication. and so he practices his medicine at the same pace hep c does its handiwork.

the what-if of maybe not clearing the virus after a long wait is enough to make me take action now.

thanks to you who replied. i'm so grateful. i'll check in once i manage to get things started.=
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my insurance and doc are holding me hostage 2 years 10 months ago #23647

  • Greedfighter
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xaverl70m welcome to FixHepC

I recommend you contact Dr. Freeman through www.GP2U.com for guidance and treatment, You are in the right place to be cured
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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my insurance and doc are holding me hostage 2 years 9 months ago #23719

  • happi
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xaverl70,

The USA has new guidelines and rules concerning imports started January 1st, 2017. You can still get meds, but you have all paperwork just right. Fedex told me yesterday that any coming from Bangladesh would have to have a copy of Passport. I don't know if that is for sure or not.

P.M. me and I'll tell you about my recent experience.

Happi
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my insurance and doc are holding me hostage 2 years 9 months ago #23721

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:ohmy: :(

Any fence sitters are on notice. New guidelines? Get your treatment now folks! Previously you just needed an RX from a Doctor. Trump has talked of bringing manufacturing back to USA. So perhaps the next step is a slight reduction in domestic prices in exchange for a ban on generic imports. Say goodbye to $1600 imported generics and hello to $40,000 Harvoni or Epclusa that is not covered by insurance and you have to pay for out of pocket. The window is closing people.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
Last Edit: 2 years 9 months ago by Greedfighter.
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my insurance and doc are holding me hostage 2 years 9 months ago #23726

  • DrJames
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YMMV
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my insurance and doc are holding me hostage 2 years 9 months ago #23727

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i stopped fence sitting weeks ago.
i've been waiting now a week and am very anxious about the arrival of my precious shipment from beacon.
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my insurance and doc are holding me hostage 2 years 9 months ago #23758

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You should not have any problems if you ordered from Beacon. They are totally legit, your meds are on the way.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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my insurance and doc are holding me hostage 2 years 9 months ago #23762

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One of the things that seems rather unclear and cause for confusion (and stress) is EMS Courier. When negotiating with Beacon Pharmaceuticals how I wished to have Sofosvel delivered, it became clear to me that the option with DHL was ostensibly quick but required paperwork (prescription and - from what I've read on here - a passport). EMS Courier - a Chinese company - apparently is "more convenient" (in the words of my Beacon contact) and does not require additional paperwork. Can anyone with EMS experience perhaps share their experience with this courier?
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my insurance and doc are holding me hostage 2 years 9 months ago #23763

  • mgalbrai
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Sometimes change is not for the best.
Good luck,
m
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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my insurance and doc are holding me hostage 2 years 9 months ago #23765

  • DrJames
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DHL > FedEx > EMS

They all usually deliver with various degrees of delay and grief.
YMMV
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my insurance and doc are holding me hostage 2 years 9 months ago #23916

  • xaverl70
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the grief is over!
ordered from beacon on feb. 7,
sent on feb. 9,
arrived on march 7.

adventure begins shortly!
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