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  • 2 December 2015 at 4:51 am #5015
    Avatar photoJoy
    • Guardian Angel
    • ★★★★★
    @joy

    Crazy8 wrote:

    It took them 18 months of investigation to conclude that Gileads motives are driven by greed?

    Yes, miserable isn’t it, and they didn’t even make suggestions as to the solution. How many more will die waiting for treatment before legislation is passed against such obscene greed?

    Meanwhile let’s inform as many as possible that safe, affordable generics are available NOW.

    3 December 2015 at 12:48 am #5096
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    Ok, some of you may recall that Ive mentioned a forum in the US run by a moderator who screams “CHINESE POISON DOG FOOD” at the mention of generics, and in fact she banned me because I mentioned it, and she usually quickly wipes off any mention. Well some person has managed to get a post on there that has lasted 2 days so far, but a series of replies following it is all misinformation, with other posters saying, well no one in the US has used generics, we can’t get generics in the US, and the medicine you are taking must be one of those Gilead licensed generics from India. I tried to correct the misinformation, but am still banned. Any of you who might want to have a go at it could try, the post is titled “API Generics”. It mentiones FIXHEPC. the forum site is this: http://forums.delphiforums.com/hepatitiscen/messages

    the post is as follows:General Discussion – API Generics (143 views
    From: bludyianos 12:13 AM
    To: All (1 of 9)
    47533.1
    “It’s been a while since I last visited this site. I had given up all hope of a cure after having failed peg/ Ribavarin treatment. Living and working in the UAE I am unable to get insurance to foot the bill for Harvoni so have opted for Chinese generics of sufosbuvir and ledipsavir through FixhepC in Australia. Have been taking the meds for 4 weeks now and had my first blood test two days ago. As I wait for results I cannot help but think should I also be taking riba? Should I be on 24 weeks treatment? I cannot rely on the advice of the docs here as I seem to know more about the medication and the options available than every Hematologist or Gastroenterologists I have visited here. Not being arrogant, it’s just they don’t seem to know. It’s astounding really. I am gen type 1a with 14,000 000 viral load. I wait for results anxiously. Great to hear so many heppers have stayed the dragon on this site. Peace to all”

    The other posters on the site continue to promote the myth that only gilead produced drugs are ok and that people in the USA absolutely cannot access them, the moderator tells them all in big bold inch high letters,” IT IS ILLEGAL!! ” this site has been there for the 20+ years I’ve been reading up on hepc, so I think its misinforming a fair number of folks. Last night the moderator did a blurb on gilead’s price scandal and tried to defend them saying, “Of course they are trying to make Gilead look like the bad guy”. The active misinformation and censorship of real info by the moderator bothers me, she has misled a lot of people with that bs, the OLD RATBAG!!

    have a go at her if you want, mates, maybe someone on there needs accurate information to obtain generics and help.

    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    3 December 2015 at 3:44 am #5105
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Cheers, 2b…I’ve registered and given it a shot. Let’s see how it goes…and in case it gets moderated out of existence before seeing the light of day lol

    Hi to gary and to all here.

    Just by way of further explanation about FixHepC and the aussie Buyer’s club, see the site for more detailed info https://fixhepc.com

    And yes, not only Australians but those who have been refused insurance cover in the US have obtained meds with the club’s assistance, as well as UK patients ineligible under their NHS-triaged system. Anyone is free to visit the site and find out what they can do to access their treatment legally.

    Talking locally, since the new DAA’s have not been approved for use in Australia, the only way for hep C sufferers to access them here is via importation of generics – and these are most definitely not under any kind of agreement with Gilead. Our Govt has been in financial wrangling with the company for many months now, and there is still nothing on the horizon..unless you can pay over $A100,000. Hence the mutual club set up by a most compassionate Tasmanian GP Dr James Freeman, who has been helping hundreds of people to get well. The rationale is “treat everyone, everywhere”…why should people’s lives hang in the balance, with their survival decided by a hugely wealthy pharmaceutical company, is the question to be asked.

    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    3 December 2015 at 4:57 am #5109
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    She didn’t waste much time at all (13 minutes) editing out half your post that said US patients could access generics and also anything else she deemed uncomplimentary to Gilead, definitely some kind of unsavory relationship going on there, or just blind ignorance.at best.

    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    3 December 2015 at 5:23 am #5111
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Ha, very selective lol

    Well I guess that says much! All the more specifically pertinent information for overseas sufferers then heh

    But she did leave the site url standing, so people who are curious can have a look…that’s a positive anyway :)

    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    3 December 2015 at 9:50 am #5151
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    Aaaaaaa, you spoke too soon Mate, looks like she came back around and took another run at you with her scissors and snipped you all up some more, took out the url and some other good stuff too it looks like, I didn’t think she could tolerate that good info staying up for long, maybe she got a call from corporate Gilead HQ.

    Pretty soon you’ll be down to just your knickers left on there.

    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    3 December 2015 at 10:29 am #5156
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    LOL :lol:

    Damn! You’re right 2b :pinch:

    Oh well it was worth a try! Maybe 3 people got a look at it before the machete-job :whistle:

    And this site really needs a /facepalm emoticon lol

    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    4 December 2015 at 9:47 am #5225
    Avatar photoJoy
    • Guardian Angel
    • ★★★★★
    @joy

    More news from the US:

    Blue Cross is being blasted in a new class action lawsuit filed in California for not covering Harvoni treatment for the “sickest” hepatitis C patients, said lead attorney Robert Gianelli with Gianelli & Morris, who represents the plaintiff.

    “Instead of covering people at all stages [of Hepatitis C], they drew a line so their bottom line would not be affected,” Gianelli said. According to the complaint, Blue Cross denied Harvoni for hepatitis C patients who have fibrosis scores below F3.

    http://formularyjournal.modernmedicine.com/formulary-journal/news/hepatitis-c-drugs-come-under-fire-again

    Class action against Gilead to follow?

    4 December 2015 at 11:24 am #5226
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    THAT’s what i’m talkin’ about!
    yea, bout time…i figured these insurance companies have been ripe for that, as I said before, not much comfort for those who have lost loved ones but it might deter some of this crapola in the future…shouldn’t have to be done this way though, shouldn’t have happened like this in the first place.

    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    5 December 2015 at 1:54 am #5259
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Yeah, let’s hope for a Class Action. Or many. It seems to be the only way to straighten out the big corporations…

    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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