Home Forums Main Forum Patient Stories Geopolitics Sorry, but Australia is going to have to be Geoblocked

Viewing 15 posts - 76 through 90 (of 132 total)
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  • #18033
    Avatar photosplitdog
    • Guardian Angel
    • ★★★★★
    @splitdog
    Hazel wrote:

    Precisely Paul. There is no discretion and there is good public reasons for that. The law can’t envisage all the situations it will be applied to. We know ourselves what an unusual situation this is, what an unusually good doctor James is, and what an unusual health peer support and advice forum this is. That the TGA regs captures that is unfortunate, not incompetent or sinister. Complainants are a different matter.
    The reason they have strict liability is to avoid any wrangling and to create a situation that is clear to everyone in it- no defence. Sounds terrible, but think in terms of workplace safety: too bad if the boss wasn’t there, if they told their worker not to do something- if something happens, it is still the bosses fault because something has happened so they must not have done enough. No argument, no buck passing.
    In other scenarios it is what we mostly want the law to achieve. No High Court Judge can get off drink driving any more by saying they were called to an emergency, because it is strict liability – alcohol in breath, driving- there is no more to the story no matter who you are.
    In fact, the TGA are exercising the only discretion they have, which is to give a warning/time period for compliance.

    I wholeheartedly disagree. Every case should be judged on its own merits. Governments are great at ‘one size fits all’ , but any engineer knows the fallacy in that way of thinking. In the US they now want to remove urinals in the mens room out of fear of ‘discrimination’ Puhleeese…..

    “….that the TGA regs captures that is unfortunate, not incompetent……..” So, knowing it’s wrong, but doing it anyways is ‘the best way’? Unacceptable in my book.


    splitdog@roadrunner.com

    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

    #18039
    Avatar photoGT2
    • Guardian Angel
    • ★★★★★
    @gt2

    It’s simply bureaucrats being ordered to flex their muscles by vested interest groups.

    Bureaucrats are the same the world over. They can make things happen over night, or frustrate things until the cows come home … hoping that attrition wears you out and you give up.

    They all act the same way, no matter where in the world their desk is or what language they speak…

    [video]http://https://www.youtube.com/watch?v=yKIE3IUkkp8[/video]


    1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
    22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
    10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
    09/05/16: ALT 34, VL: NOT Detected :cheer: 🙂 , FBG 11.9 :huh:
    17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
    🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂

    #18040
    Avatar photosplitdog
    • Guardian Angel
    • ★★★★★
    @splitdog

    Exactly. It’s actually the beginning of socialism. Same medical treatments, same car, same income, same opportunity, etc. After all, we’re all the same. Hogwash. That promotes mediocrity, at best. The individual is the smallest minority. “Individuals, unite!!!” Wait……… ;)


    splitdog@roadrunner.com

    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

    #18042
    Avatar photoCJ
    • Guardian Angel
    • ★★★★★
    @cj

    I haven’t been on line for a while, so just seen this.
    It honestly makes me SO sad.

    What’s wrong with people in power?
    Fixhepc has saved my boy, my only child, who I thought would get sicker & sicker.
    He is a different child now, happy & full of life AND HEP FREE.

    THANK you James, and thank you Fixhepc for always being there for me & my son.

    I’m ashamed of my country, I used to be proud, but the high & mighty have taken our freedom away.
    Sydney became a nanny state, now the whole of Australia seems to be.

    Really sad to think what the future may be like.
    Money seems to be the only thing that matters. :(

    Cindi x


    J the young dragon slayer is:
    HepC 1a since birth
    Male aged 15
    VL 2000000
    Started Twinvir/ 10-11-15-then Sof/led.
    NO sides so far !
    after one week VL : 37
    after 4 wks VL : UND !
    EOT 2/2/16 UND.!
    4 wks. post tx results….pending….
    7/3/16 VL result : 4 week post tx: SVR !
    12 weeks SVR !
    24 wks SVR yeeaa!!

    #18045
    Tricia
    • Topics: 1
    • Replies: 38
    • Total: 39
    • Treatment Warrior
    • ★★★
    @tricia

    CJ you just said it so well!

    I haven’t read here for awhile either and I’ve been sitting here reading and feeling just plain sad :(

    Such a wealth of information on this site. It has been a highlight in my life to have seen such integrity, selflessness and the strive to help and save lives that I’ve seen here. All I can say is ‘hear hear’ to what everyone has posted, and thank you Dr Freeman for being a man of integrity, courage and for all you have given!


    reg nurse and wife of:
    genotype 3 (probably since ’75), f4, cirrhosis, Tx naive
    Oct ’15 – Dx hcc
    Pre Tx — VL: 330,000……, AST 202, ALT 137, Bil 24, ALB 30
    04/11/15 -Sof & Dac
    30/11/15 -VL: 80……………., AST 28, ALT 18, Bil 12, ALB 32
    06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
    01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36

    .

    #18046
    Avatar photoCJ
    • Guardian Angel
    • ★★★★★
    @cj

    Hi Tricia, I agree. James is a man of integrity &courage.
    A very rare human being in this big greedy world.

    Also thanks to all the lovely people on this forum.
    Such a special place.

    xo


    J the young dragon slayer is:
    HepC 1a since birth
    Male aged 15
    VL 2000000
    Started Twinvir/ 10-11-15-then Sof/led.
    NO sides so far !
    after one week VL : 37
    after 4 wks VL : UND !
    EOT 2/2/16 UND.!
    4 wks. post tx results….pending….
    7/3/16 VL result : 4 week post tx: SVR !
    12 weeks SVR !
    24 wks SVR yeeaa!!

    #18048
    Thurl
    • Topics: 4
    • Replies: 20
    • Total: 24
    • Treatment Warrior
    • ★★★
    @thurl

    James-Freeman-Facebook wrote:

    Redirecting to an overseas forum seems sensible and suggestions are welcome as to which one (or ones) we should suggest to Australian users so they can find mutual support somewhere in cyberspace.

    I hesitate to suggest other sites in case in so doing I merely bring down on someone else’s head the legal difficulties that Dr Freeman and FixHepC have encountered. And one of the unique attractions of this forum has been that Dr Freeman, through his numerous posts, has generously given us the benefit of his unrivalled expertise on matters to do with hepatitis c and its treatment.

    But, nevertheless, in case anyone is unable to take advantage of the technical means to evade the post 15th June geoblocking (perhaps because, like me, they don’t know how to) there are some potential alternatives which may be worth exploring.

    There is mgalbrai’s site which I assume is based in the US:

    http://forums.delphiforums.com/generichcvtx/messages/1/fixhepc

    and also Alsdad’s site which I assume is based in the UK:

    http://killthedragon.freeforums.net/

    (I believe the original reason Alsdad set up this site was precisely for this contingency: to act as a potential refuge in case of FixHepC being closed down in whole or in part.)

    However, fleeing to another site may only prove to be a stopgap unless the underlying legal problem can be addressed. Alsdad’s site in particular could be vulnerable because the UK/EU regulations seem to be similar to the Australian ones.

    If the FixHepC forum can be geoblocked in Australia because of alleged infringement of Australian medical advertising laws could we also see it, sometime in the future, being blocked in some or all of the EU countries? This would be not because the forum is based in those countries but because it would otherwise be accessible there infringing their own respective national/ EU drug advertising laws.

    Greedfighter informs us that Harvoni is openly advertised on American TV. This prompted me to google the issue. It seems that amongst developed countries only the USA and, I think, New Zealand don’t ban DTC (direct-to-consumer) advertising of prescription only medicines. So on the basis of worst possible case thinking could we end up in a situation that this forum, or forums like it, are blocked in every developed nation apart from the USA and New Zealand?


    Male Geno 1a F3-4 Tx Naive
    Contracted early 1970s Diagnosed 2012
    Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
    Pre-treatment VL 1.8 million
    UND at 8 Dec 2015; UND at 12 Jan 2016
    Ended 12 wks TWINVIR on 6 Feb 2016
    9 Feb 2016 EOT VL test <15 PCR Negative
    UND at 3 May 2016 SVR12

    #18049
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi Thurl,

    It is more a case of FixHepC in Myanmar choosing to geoblock Australia (rather than the other way around) in order to allay the assertion from the Australian TGA that FixHepC is engaged in advertising in Australia.

    That way, FixHepC can carry on its mission until the day that the Myanmar government also decides that it doesn’t want to help cure the rest of the world of HCV.


    Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
    Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
    Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
    Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).

    #18051
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    Hello Tricia and CJ,

    Reading your posts made me think on the fact that greed is indeed a strong force against which one may not so easily oppose.
    Looking into the past history however, greed was challenged / opposed by spiritual leaders. They do have a kind of additional power that the normal people may not exercise with full efficiency.

    I would imagine a nice round table with living spiritual leaders, like Dalai Lama, Deepak Chopra, Pope Francis, Paulo Coehlo, Thich Nhat Hanh and why not Rhonda Byrne :) talking about Harvoni vs generic drugs from India. I wonder what would they sustain? The profit of pharmaceuticals companies or the lives of the 150 million patients with Hep C which cannot get the treatment because of the greed….

    Too bad that reaching such spiritual leaders is in fact a kind of mission impossible, I doubt one can simply write them an e-mail…..

    Cheers,
    RHF


    In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
    HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
    By sharing this Youtube video you might save someone’s life!
    My TX: HEPCVIR-L[generic Harvoni]-India
    SVR52 achieved

    #18052
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Thurl,

    Vororo is correct in that it will only be those with an Australian IP address who will be geoblocked, so mostly applicable to Aussies who would be the only ones seeing a redirection to an alternative forum that can provide them with support and answers to their questions. This has been brought about due to a combination of strict Australian prescription drug laws and Dr Freeman being an Australian resident doctor to whom those laws apply.

    So someone like yourself in the UK (or any other country) won’t be affected by this action and will still have full access to FixHepC without needing to either understand the technical means or google ‘how to avoid geoblocking’.


    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:

    #18060
    Avatar photoPrice
    • Guardian Angel
    • ★★★★★
    @price

    Gaj,
    We can copy things from this forum and post them on our sites right? There’s nothing that stops us from doing that. This forum is public.

    Whatever happens, I want to thank all of you, for your acceptance and willingness to help others. You’re an amazing bunch.

    P

    #18071
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    I caught up with this morning and have been reading through all of your responses since the first post by Dr James. Through you all I have had a quick ride through all of the emotions: shock, anger, sadness, observations, more anger, acceptance? (not likely!), options, technical talk, ways forward. I used to be a bureaucrat in a past life so tried to work through the logical reasons for the TGAs decision but realised that I don’t think so much like a bureaucrat anymore.

    I have had a lot of firsts since reading that first article about generic HepC treatment in the SMH last year. My first consultation with a doctor using Skype (in Tassie no less!) the first time I have ordered medication from overseas, my first Hep C treatment, my first post on this forum when I shared my status with people other than close family and friends, the first time I realised what an exceptional forum this is, my first blood test in years that had a Hep C undetected result and the first time I realised how much better I feel.

    The first time I realised that Dr James is not only an exceptional doctor but an exceptional human being. I’m still in awe of his bravery, compassion and capacity for what must be an enormous workload. Underpinning all of these posts is the absolute commitment to supporting and protecting Dr James and his team. It’s not often you can say that someone literally gave you your life back.

    I’m still reading through the reasons and legalities of the TGA decision and it may take me a while to work through the techo stuff but there are too many compassionate and driven people on this site for it not to continue.

    #18077
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    I don’t often write to politicians but I think I will over this. I’m guessing that the TGA is part of the Health Minister’s portfolio?


    Genotype 1a
    Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
    Harvoni treatment, started 19 March 2016
    4 week results Bilirubin 12 down from 14 pre treatment,
    Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
    VL <15 down from a lazy 6 million or so

    EOT Results
    Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

    12 Weeks post EOT
    Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
    Cured baby

    #18079
    Avatar photosonix
    • Guardian Angel
    • ★★★★★
    @sonix

    Yes TGA is under Department of Health. Read all about them – https://www.tga.gov.au/sites/default/files/tga-business-plan-2015-2016.pdf


    M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
    SVR4 at 7Apr16 ALT 22 AST 22
    SVR12 at 9Jun16 ALT 23 AST 25
    Melbourne, Australia

    #18080
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Page11 – “advertising complaints responded to in a timely manner using a risk-based approach and measures taken to support compliance by advertisers”…. So, who has complained?
    Heading get down to page 21 it seems Dr Freeman is mitigating a known risk (public access to therapeutic products is restricted or delayed) but still is being hounded


    Genotype 1a
    Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
    Harvoni treatment, started 19 March 2016
    4 week results Bilirubin 12 down from 14 pre treatment,
    Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
    VL <15 down from a lazy 6 million or so

    EOT Results
    Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

    12 Weeks post EOT
    Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
    Cured baby

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