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TOPIC: Activism

Activism 3 years 4 months ago #18850

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Cheers
Today I woke with a very clear head and a bit more energy. I would like to share my thoughts as I have been in a deep brain fog the past 10-12 days and very fatigued but doing ok. I am an American expat living / working in China, SEA for many years and retired last October with my lovely wife and 12 y/o son here in Northern Thailand. Discovered I had the virus a few months ago from drug use in the late 60's early 70's. I do not have health insurance nor the cash that Gilead charges for the meds, so like many of you I turned to the net and found Gregg J who showed me the way. I signed up for redemption trials last month but was one of the very few that could not get the meds delivered to me through Thai customs. I was then planning a trip to India as I have travelled there on numerous occassions for business over the years but was not thrilled with the prospect. Meantime Gregg turned me on to a trusted vetted contact Mr G, in Bangkok. If you read Greggs Amazon book about his experience, this same Mr G is mentioned in the book and helped him while he was in India. Long story short I bought my meds in person in Bangkok from Mr G for THB 42k ($1200 USD). Sof/Led HEPCVIR by Cipla. Started my tx on June 7th. If you read my thread on telling my mom I have HCV you will know that I have always hidden my past drug use and was always deeply ashamed of it. This disease has made me confront those past demons and while never 100%, I have pretty much forgiven myself. So, I was planning to head back to the US (Boston) when this ordeal is over to spend time with my 90 y/o mom but had a thought. Why hang around here in Thailand when I could travel back to Boston, be with her, and do some good old fashioned activism. While not an Abby Hoffman type I was involved in the Vietnam antiwar protests on the Boston Common back in the late 60's and early 70's and am sure there is some file buried somewhere in the NSA/FBI with my name on it. Funny but that is also the same period that I was actively using drugs and likely caught the virus. It was a strange time going from a carefree 17 y/o growing up in a nice suburb of Boston to having to register for mandatory draft to Vietnam on the day you turned 18. You grew up quickly. I have several friends that never came back, may they rest in peace.

The Plan.
I just confirmed my flight to Boston for next week and am filled with outrage about what the system (big pharma) is doing. My thought other than telling my story to everone I meet is to simply plant myself on the steps of the golden domed statehouse at The Boston Common simply holding some kind of sign or placard.

SAFE
AFFORDABLE
LEGAL
GENERIC
HCV MEDS
SENT TO YOU
FIXHEPC.COM

I am so ready for this and have no issues with putting my face in public on the streets. What do you think ?
Feedback is welcome.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
Last Edit: 3 years 4 months ago by cheese. Reason: spelling error corrected
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Activism 3 years 4 months ago #18851

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I like it. :) Be sure to get in with touch some television stations and radio stations as well, and the papers, and let them know you'll be there, so when the police show up, and they will - they have some footage to show, along with the good news story!

Exciting stuff!

Hmmm... how about 'Cheese' in a sandwich board?
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 3 years 4 months ago by fitz.
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Activism 3 years 4 months ago #18853

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I can't tell you how effective it will be, but anything anyone can try is a step in the right direction. It would be good if you could find an activist type of writer to get some stories into the press, and also if you could get meetings with people in your legislature to explain what's going on.

But I've got another really simple idea you might try. Lots of people could try this.

How many clinics, hepatologists and/or gastroenterologists are there in your area? You can't openly advertise in their offices of course, but you might be able to get info into their waiting areas that might save some people.

Specifically, you could get some inexpensive folders (clear cover) and put printouts of two articles in them and leave copies of these in waiting rooms on top of the magazine piles. The two articles would be 1) Dr. Freeman's report to the International Liver Congress and 2) Dr. Freeman's article in "Debates in Hepatology." How could an office of any health care provider object to making published medical information available for reading? You would need to refrain from any additional hyping that could be interpreted as a sales pitch ... Just the articles.

You can find them here
1) fixhepc.com/forum/fixhepc-admin/950-easl...ed.html?limitstart=0
2) fixhepc.com/forum/media-news/1103-liver-...s-in-hepatology.html
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Activism 3 years 4 months ago #18859

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Kihilde
Great advice about offering Doc Freemans published information. Kinkos should be able to make a tidy professional looking package. Do not in any way want it to come off as a cheap sales pitch. I think the statehouse thing will have to be modified, but its still something I want to do in some fashion. The last and only other time I have had this kind of emotion and raw outrage to bring me out on the streets was during the Vietnam war protests. Have mentioned that my daughter is a 4th year med student at Tufts medical in Boston. We speak often and she can likely help pinpoint the best places to target the publications for reading. Thank you Thank you Thank you
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18860

Awesome grassroots stuff Cheese,(and smart too) the more people find out about generics they will tell people and so on #flower

May I suggest you let Greg know he posted a while back that he is happy to help anyone out with media stuff.
SVR 24
Last Edit: 3 years 4 months ago by Tina-Hill-facebook. Reason: GREG
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Activism 3 years 4 months ago #18865

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Thanks

Will do Tina.

Still touch base with Greg every now and again to say hello.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18866

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Hey Fitz

My days of dealing with law enforcement (especially) in the US are hopefully done. :whistle:

Cannot run as fast as I did in the day. :)

Thanks for your encouragement and support.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18872

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Haha! I wasn't suggesting you get arrested and hauled off to the slammer for the the cause. You and I are way beyond that phase in our lives. I sometimes wonder though (with all the posting I've been doing lately in various venues), whether my Internet Service Provider with whom Big Pharma spends big money, will simply flip the switch on my internet connection one day.

Having done business internationally, I'm quite confident you will come up with an effective marketing plan that will allow you to get the word out, and win hearts and minds without putting your physical freedom in jeopardy. :)

You have an extremely compelling story to tell. You will save lives. I'm sure of it.
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 3 years 4 months ago by fitz.
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Activism 3 years 4 months ago #18904

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I have a flight from Bangkok to Boston next week. I am thinking of declaring my generic DAA's at customs arrival.

I do not have a script since I was not able to get meds via redemtion because of Thai customs.

I bought the meds directly on the streets in Bangkok from a trusted, vetted, contact I got from Greg J.

I want to push the Activism envelope and see what customs says and does. Is this foolish ?

I figure worst case, they take the meds and I start redemption in the US where I will be staying for the next few months. I do not want to jeopardize my tx.but feel this issue needs light and exposure, even if only to customs agents as the new normal.

Feedback please.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18907

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Come back with the meds and say nothing. When you get here, do all the activism you want. Don't jeopardize your cure.

If you aren't cured, you have less credibility.
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: 3 years 4 months ago by Greedfighter.
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Activism 3 years 4 months ago #18909

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Hi GF
Your last sentence did srike a chord.
To be credible I need to be cured.
With that I will likely just pass through customs without declaration and if stopped or searched then will deal with it.
Thanks
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18910

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I agree, you shouldn't risk your cure to try to make a short term statement.

I don't know what the US customs requirements are on entry with prescription drugs. However, if it was me I don't think I would be trying to hide/smuggle them in, that will certainly cause problems if you are caught. If I couldn't get a script then my thoughts would be to carry them in personal luggage in their original opened packaging if still available (and a daily dosing box if you use one) just like they were Aspirin or similar. I would ensure that I had access to something that showed I was diagnosed with HCV or on treatment in amongst my personal papers or files or on my phone/computer that I could pull out if questioned.

If they refused to let them in then I would go into activist mode and create as much noise and publicity as possible about a citizen being denied life saving medications in my attempts to have them returned.
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:
Last Edit: 3 years 4 months ago by Gaj.
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Activism 3 years 4 months ago #18912

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Hey Dennis,
I'm glad you're rethinking the SDS style activism. :lol:
Some real wisdom has been provided to us here. Helps us from driving the the bus into the ditch. On second thought ... :lol:
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!
Last Edit: 3 years 4 months ago by Matt-Kenney-google.
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Activism 3 years 4 months ago #18922

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#flower #flower The Magic Bus #flower #flower

Brings back fond memories. #love #love

Good advice from all. Customs are just doing their job. No need to poke the tiger in the eye, yet. :evil:

I will technically be smuggling rx into the US by not declaring and not having a doctors presription but they are pretty lenient on an individuals meds, as long as the quanity is not too high. I have never had an issue carrying the odd strip of meds such as Xanax without a script. One thing they do not like is concealment, so will have my HCV meds in their original containers tucked in my travel kit with my xanax and other odd toiletries for the long haul flight :)

Gaj: good advise on having my documents with me. I printed all of my documents IE blood work, Fibroscan, and ultra sounds so very easy to explain my condition if they happen to stop me. #flower
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #18923

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Haha! "The Magic Bus" I knew you'd recognize it, Safe trip and happy landings brother :+1:
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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