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Where are the hordes of Newbies? 6 years 5 months ago #15144

Greedfighter wrote: Hi Mike,

I totally agree, the doctors are the key.

It's going to come down to the patient in the end in the USA to make the purchase, but the doctor could make them aware of the opportunity,


GF...I went down this road four months ago in December with 4 doctors. At that time 2 of them knew very little of generics. The other 2 did know about generics. For legal, insurance, medical or personal reasons they did not or would not pursue the matter. It will eventually happen...e.
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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Where are the hordes of Newbies? 6 years 5 months ago #15145

Sorry 'bout the slow response ... Musta spaced the part of your post asking about where in the world I am. I live in Oregon, USA

In reply to Tina
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Last edit: by Matt-Kenney-google. Reason: Clarification

Where are the hordes of Newbies? 6 years 5 months ago #15146

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I swing back and forward between thinking, so much has been done in such a short time by so few and one in particular, it is really evolving incredibly fast compared with building a house or anything- it is rapid spread and progress. Then I think of people like me who only just heard about it in time, and I want more! and want to know where are the doctors, media, advocates, there should be more, now! Then I calm down again and say wow. Really going at it to get one doctor anywhere on board is excellent grass roots activity, requires no publicity or personal exposure but tenacity. Tina and I dragged the medical staff along here, albeit in private capacity, and they have written scripts for a couple dozen people now. They then take pride in that and others will follow. Pockets of change will link up a lot this year.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Where are the hordes of Newbies? 6 years 5 months ago #15195

ARGH! Just got this from MonkMed

Possible Delay in Shipping

Dear Mathew,

All brands of generic Sovaldi or Harvoni are going through price revisions in India and as a result the bottles are being remarked with new price.This can cause your package shipping to get delayed by 3-7 days.I will keep you informed and ship as soon as we get the bottles back in stock.

Then Tim from MonkMed called to inform me that since my shipment was already packaged, it will not be affected.
Still, I was somewhat disappointed when he went on to say shipment should arrive in about 3 weeks. Disappointed because recently I was told shipment would take 1 week. SURPRIZE!!! Maybe I just misunderstood. Happy to be getting it at all, really. thanks for the time and place to share fixHepC and forum mates. ;)
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Where are the hordes of Newbies? 6 years 5 months ago #15201

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Hi Matt,

India does have very strict rules around pricing of medications so it doesn't surprise me that a price change would cause delays even if not in your case.

I would think one week is probably a best case situation and Tim is either aware of some current delays to your location or is under promising rather than risking disappointing you. :)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Where are the hordes of Newbies? 6 years 5 months ago #15202

Thanks Gaj,
Yes, Tim was, as always, very helpful. I don't feel there was any intention to mislead one way or the other as to time it takes from shipment to arrival. As I say probably just me misunderstanding.
I posted this in case others, now or in the future have the same expectation.
It takes more than 1 week from shipment in India to receipt in USA. More like 3 weeks according to Tim.
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Where are the hordes of Newbies? 6 years 5 months ago #15203

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mgalbrai wrote: The doctors, or the APNs who handle most HCV cases in the U.S., need to be educated. Do they have an annual convention? A place where a few of us could go and get their attention.
Every profession has to "convene" once in a while.
The professional journals and publications could be another way to get the information where it needs to go. We have been carpet bombing. Maybe we need to snipe for a while.
The doctors are the keys.
m


Absolutely, the annual convention is the AASLD, its supposed to be a nonprofit entity, but this is the US and I'm sure Big Pharma has fingerprints all over any medical related ass they can find, especially since conventions bring dollars!!! In June, its in Chicago!!


www.aasld.org/

www.aasld.org/events-professional-development/calendar

www.aasld.org/events-professional-develo...aasld-midyear-course
G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
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Where are the hordes of Newbies? 6 years 5 months ago #15206

Matt-Kenney-google wrote: Thanks Gaj,

It takes more than 1 week from shipment in India to receipt in USA. More like 3 weeks according to Tim.


Gaj is quite correct shipping can be quite rapid some times it's only about 16 hrs flight time and if it sails through customs your will get it quickly. I have seen 3 days ex China to door in states. Waiting for meds to arrive is a pain but it will happen.
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Where are the hordes of Newbies? 6 years 5 months ago #15209

Hi Matt hang in there

Tim and the team at Monk Med will have you covered :cheer:
SVR 24
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Where are the hordes of Newbies? 6 years 5 months ago #15214

Thanks Paul, I don't doubt that what you say is true for those buying direct.
Perhaps I should've explained right off, that I'm part of Redemption3 e-trial and so my ordering from India was done for me and it was they that informed me of the delivery time of 3 weeks. So, in retrospect perhaps when Dr Freeman told me it'd take about a week, perhaps he was considering that I was ordering direct from India on my own.
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Where are the hordes of Newbies? 6 years 5 months ago #15215

Never a doubt Tina
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Where are the hordes of Newbies? 6 years 5 months ago #15216

I guess something unsaid is although we try to make it easy for patients there is a lot that goes on in the background to achieve delivery.

There is a quiet battle going on between us and many others who believe that access should be better, and others who would prefer it was not.

FedEx for example had a series of bomb threats and offloaded cargo. Perishables shipped first, but there is still a backlog, but like the pony express, we deliver.
YMMV
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Where are the hordes of Newbies? 6 years 5 months ago #15217

Here is link to the details on price reduction. Also lists names of all other drugs

timesofindia.indiatimes.com/india/Prices...1632873.cms?from=mdr

We have been assured not more than 4 days delay. So doesn't look too bad.
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Where are the hordes of Newbies? 6 years 5 months ago #15247

Just wanted to update you all (wow, sounds kinda "Deep South" there) :lol: anyway, got email from MonkMed yesterday YAY!
MonkMed/FixHepC - Your Medication Tracking link

Dear Matt,

Here is your USPS tracking link.

Please allow 3-4 days before updates show on USPS site. Until then package is handled by India post and has not entered the USPS system.
Unfortunately USPS does not provide frequent updates. You might see 'origin post is preparing shipment’ for almost a week but the package would be going through its normal route and progressing. There is no status between package leaving India and arriving in the US. Typical time is 7-10 days.Once package arrives in the US you will see ‘inbound to customs’ post which USPS will update status. The whole process is taking about 3 weeks now.
Yes ... I'm doin' the happy dance!!!
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Last edit: by Matt-Kenney-google. Reason: So there's no misunderstanding how I feel abou this ⯑

Where are the hordes of Newbies? 6 years 5 months ago #15266

Hi Matt bet you are excited!

On a side note do you have a Hep C support center in your area? the reason I ask is that it would be a good idea to pass on the details of the doctor who wrote the script for you - then they can pass on the info to others in your home town to get cured too :+1:
SVR 24
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