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  • 20 June 2016 at 2:40 pm in reply to: Médecines du Monde Campaign & Petition #19547
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi Tina,

    Yeah, its quite possible that the someone whispered in someone’s ear before someone from the “Leep” complained to the ARRP.

    But according to this article, the efforts to suppress the Médicines du Monde campaign have largely back-fired, because the publicity around the censure caused a massive wave of interest, and MDM got 120,000 signatures in the first 48 hours.

    http://multinationales.org/Une-campagne-de-Medecins-du-monde-censuree-pour-ne-pas-facher-l-industrie

    From what I can see today, they are still getting about 600 signatures per hour (now at 193,593).

    Oops, now at 193,622, which another 29 in the time it took me to write this post :)

    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).

    19 June 2016 at 6:55 pm in reply to: Legally Importing Generics to France – Official Guidelines #19499
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    a recent post from http://hepatoweb.com (19/06/2016)

    Mai 2016 – Hépatite C: les génériques indiens des AAD aussi efficaces que les princeps

    Patients français, allez à l’étranger pour vous faire soigner !

    En France, les nouveaux AAD sont remboursés chez les adultes chroniquement infectés par le VHC à partir du stade “F2 sévère” et, quel que soit le stade de fibrose hépatique, chez les personnes co-infectées par le VIH , ainsi que celles présentant une cryoglobulinémie mixte ou un lymphome B associé au VHC.

    Interrogé par Medscape édition française, le secrétaire général de l’Association française pour l’étude du foie (AFEF), le Pr Victor de Lédinghen, s’est dit “ravi” des résultats présentés par le Dr Freeman. « Désormais, nous allons pouvoir dire à nos patients, n’ayant pas accès au traitement, qu’ils peuvent envisager un séjour thérapeutique à l’étranger ».

    Si la France ne permet pas d’importer des médicaments, elle autorise le transport de médicaments à usage personnel en provenance d’un pays étranger. Selon la douane française, « la quantité transportée correspond à la durée du traitement prescrit sur l’ordonnance ou, à défaut, à trois mois de traitement ».

    La loi étant en faveur du transport de médicament, « cela ouvre la porte au séjour thérapeutique », souligne le Pr De Lédinghen. « Il faudra toutefois veiller à bien choisir le pays de destination, en privilégiant les fabricants ayant pu obtenir la licence du princeps ».

    Read the full article (also in French): http://hepatoweb.com/espace_actualites.php

    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).

    19 June 2016 at 6:32 pm in reply to: Drinking Alcohol Post SVR #19498
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi folks,

    Here are the latest results from Oor Wullie, who drank alcohol (moderately) both during after his treatment. Here, “moderately” means 2 or 3 units per day, so Wullie is still in the good part of the curve according to Dr James’ post at the top of this thread.

    Well, as the Doc says, this is not advised for advanced liver disease (F3/F4), but Wullie was only F0/F1 so he stubbornly stuck with it for the sake of science. Now he is 16 weeks post treatment, and very happy to be continuing with the experiment ;)

    Date AST ALT GGT Lipase V-Load Comment
    10-nov-15 82 133 52 135 1.9M Started FixHepC Sof+Dac
    01-dec-15 47 63 46 74
    10-dec-15 47 58 44 < 15 Crivvens! Its wurkin!
    03-feb-16 30 26 30 105 UND EOT – Sléinte!!
    08-mar-16 32 28 24 116 UND EOT+4 – Feeling great!
    26-may-16 26 22 24 100 UND EOT+16 – Still improving!

    As you can see, despite the booze, Wullie’s enzyme levels are still trending downwards after EOT, and so it looks like his liver is still going through a process of recovery and re-building, now that he is finally free of that bastard virus. He probably just needs to cut out the French fries to work on those lipase levels.

    Anyway, all results posted here have been uploaded to GP2U in case it might help Dr James’ next presentation at EASL 2017 in Amsterdam. Let’s hope that next time, he will be reporting results not for hundreds, but for 10s of thousands…

    Cheers,

    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).

    16 June 2016 at 2:05 am in reply to: Patient Zero #19154
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Back in November 2015, when I visited Tasmania, Andrew told me that FixHepC had treated about 350 people.

    Since the web site now shows some 1761 members, it would be interesting to know just how many people have now been fixed by FixHepC?

    Patient 351.

    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).

    15 June 2016 at 1:23 am in reply to: Legally Importing Generics to France – Official Guidelines #19062
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo
    rohcvfighter wrote:

    Do I understand correctly that France and Fixhepc just became brothers? :)

    As long as France wants to renegotiate HCV drug prices, what France just did is a great strategic move. :+1:

    Yeah, this should add a lot to the negotiations ;)

    More generally, it certainly looks like a big step forward from the previous situation in France:

    http://fixhepc.com/forum/questions-and-answers/322-france-medication-import-regulations.html#2926

    Still, for anyone importing to France by mail or courier service it might be a good idea to ask the doctor/supplier to include a print-out of the ANSM advice along with the prescription, if only to keep Fedex and DHL, etc., on the straight and narrow.

    Here it is again:

    http://ansm.sante.fr/var/ansm_site/storage/original/application/2f4596b7d00e7d8f56a18d619d8c839b.pdf

    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).

    13 June 2016 at 12:02 am in reply to: BBC Newsnight – mostly talk about media representation & greed #18946
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    For those people who are new to FixHepC, there is an old thread on this that was started by LG back in February.

    https://fixhepc.com/forum/media-news/720-tonights-newsnight-uk-feature-meds-access-generics.html?limitstart=0

    To my (British) ears, Virginia Acha sounds like a Brit who has spent many years in the USA (her CV is available on LinkedIn).

    Either way, Brit or American, she is speaking as Executive Director of the Association of British Pharmaceutical Industry, and to my (British) ears she talks like she is representing Big Pharma:

    Ewan Davis: “We know that drug companies have to be recompensed for the billions they spend on research and development. Do you think there should be any limit on the price they should be allowed to charge?”

    Virginia Acha: “I think we are focusing a lot on price and what I didn’t hear at all was the value that we’re getting through the way these medicines are being introduced in healthcare, and when NICE gives an approval, that’s not just a tick because we think its just a curative treatment, that’s because they’ve looked at does it make sense to spend the British [tax] payers pound on this medicine as opposed to any other intervention that we could do to really care for them…”

    Dead right Virginia. I didn’t hear anything about that either. Just in case you didn’t understand it Virginia, the story was about how Sean Reading had to go to FixHepC because the treatment was too expensive for the Irish health service to be able to treat him. So he got himself treated with perfectly effective generics instead. I hope you will take this into account, Virginia, the next time you talk about “negotiating value” with the NHS.

    Brit or American, corporate BS is always the same (grrrr)…

    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).

    12 June 2016 at 10:52 pm in reply to: Geoblocking of FixHepC: Use a proxy site – you don’t need a VPN #18940
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo
    A.L. wrote:

    You can also log in and post even if the proxy site does not support SSL encryption, because if you haven’t noticed, this site is not secure. That is, if you look at the address bar when you are logged in, there is no padlock symbol and all of our writing is free to anyone who cares to snoop (not that this should be a concern as no-one is doing anything illegal here, but you should be aware of it.)

    For anyone who is worried about password snooping, it is possible to connect to FixHepC using SSH encryption:

    https://fixhepc.com/ (probably not visible to the eye, but the link actually goes to https:// fixhep.com … without the space of course)

    This means the encryption/decryption takes place between your PC/laptop and the FixHepC server, before reaching a third party proxy or VPN server.

    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).

    10 June 2016 at 1:32 am in reply to: Why I recommend fixhepc/Redemption Trial #18775
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Very well said, Hazel!!

    And very timely. In just a few months, thanks to the FixHepC web site, Dr James has shown the world that generics are safe, and that they can be made accessible to all.

    (plus or minus just a few crazy customs regulations for the moment)

    And all that, I am sure, is despite much opposition and threats behind the scenes that he only partially shares with us all on-line.

    I want to propose everyone takes one minute of silence just to think again about the amazing thing Dr James has done here.

    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).

    5 June 2016 at 1:55 am in reply to: Darvoni story #18406
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo
    Hazel wrote:

    Excuse cross postings of these, but this was news to me, and a great story. Further evidence if you need it of the impact Dr J is having on the world: https://www.hepmag.com/blog/italian-job-good-news

    And just for completeness, Beacon have made an absolutely superb web site specifically for Darvoni:

    http://www.darvoni.com

    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).

    1 June 2016 at 4:07 am in reply to: Daily Mail UK #18166
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Thanks, Hazel. Great to see the message is starting to seep through. And thanks also for your own great efforts.

    But I must say, the Gilead response was a bit thin.

    “A spokeswoman for Gilead said the company would negotiate on price if asked. ‘We remain ready and willing to continue discussions with the government and NHS England in the public interest and in a constructive manner,’ she told Good Health.”

    Still, this is a big step forward from the usual “not available for comment”, and it almost seems like Gilead is accepting that the ball is now in the NHS court.

    Dear NHS, what are you waiting for? Don’t you read the news in France?

    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).

    31 May 2016 at 9:56 pm in reply to: Managing Patients After DAA Treatment Failure #18147
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Thanks, I stand corrected. Sofosbuvir is a polymerase inhibitor, and NS5B is the polymerase in HCV.

    https://en.wikipedia.org/wiki/NS5B

    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).

    31 May 2016 at 7:22 pm in reply to: Managing Patients After DAA Treatment Failure #18144
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    The above re-treatment combo is not written very clearly. I would read

    (ombitasvir/paritaprevir/ritonavir plus dasabuvir) plus sofosbuvir and ribavirin

    to mean

    (ombitasvir (NS5A) OR paritprevir (NS3/NS4A) OR ritonavir (HIV protease))
    PLUS
    dasabuvir (NS5B)
    PLUS
    sofosbuvir (NS5B)
    PLUS
    ribavarin

    This makes two NS5B inhibitors.

    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).

    30 May 2016 at 3:04 pm in reply to: Sorry, but Australia is going to have to be Geoblocked #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).

    27 May 2016 at 10:33 pm in reply to: Sorry, but Australia is going to have to be Geoblocked #17924
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo
    ”James-Freeman-facebook” wrote:

    If you go here: http://fixhepc.com/tga

    You will find a copy of a shit-o-gram from the TGA in Australia about this website and it’s content.

    While I would argue that this site is informational, rather than advertising, it’s highly probable that argument would fail in court with a catastrophic personal impact.

    Hi James, very sorry to hear this development.

    But to say that FixHepC is engaged in advertising….? … Laugh? … I NEARLY DID!

    FixHepC provides more USEFUL INFORMATION and HONEST ADVICE on LEGAL TREATMENT OPTIONS than on all the other Hepatitis C forums put together.

    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).

    27 May 2016 at 10:17 pm in reply to: France Medication Import Regulations #17922
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Here is an report from FranceTVpluzz:

    http://www.allodocteurs.fr/maladies/foie-pancreas/hepatites/hepatite-c-acheter-son-traitement-moins-cher-a-l-etranger_19366.html

    According to this report, volunteers from the French site SOS Hépatite (http://www.soshepatites.org/) imported generic sofosbuvir from India to France without any problem from French customs.

    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).

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