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  • in reply to: worser and worser…should be a scandal #5258
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Thanks Mike,

    Yeah, its a crazy world. Take a holiday and get cured into the bargain. Probably not good for global warming if everyone has to fly to Australia or Bangladesh, or take a bus to Canada to get treated… But that’s better than filling the pockets of Big Pharma,


    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).

    in reply to: worser and worser…should be a scandal #5256
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi Alsdad,

    Yeah, sure, based on static figures. I was really just trying to work out for myself what percentage of people who are currently identified with the disease are actually getting treated now, or who actually have any hope of getting treated in the next few years, taking into account current prices.

    Obviously, there are still new infections every year, and people are dying every year, so the reality is probably worse than my quick estimates. So you’re right, despite the best efforts of national health services, we are going nowhere fast.

    Despite the fact that a perfectly good treatment now exists.


    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).

    in reply to: worser and worser…should be a scandal #5254
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Oops, I made a mistake. I forgot that the percentage treatment rates are for 21 months of sales. So in fact, for the USA the rate of treatment is more like 2.6% per year, and for the rest of the world it is more like 1.4% per year.

    Sorry for the mistake.

    So… setting the absolutely criminal price aside for a brief moment, with the right math this time we can say that at the present rate it will take about 38 years to treat all 5.3 Million Americans with the disease, and about 71 years to treat the rest of the “developed” world.

    As before, Gilead’s patents could be good for from between about 17 to up to 20 years. And of course, the price will fall rapidly once the patents expire and generics will flood the market. But assuming my math is right this time, we are still looking at only about 17*1.4 = 24 % of americans and getting treated if Gilead continue to have things their way, with the rest having to wait until Gilead’s patents expire.

    And the calculation looks even worse for the rest of the “developed” world.


    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).

    in reply to: worser and worser…should be a scandal #5252
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Thanks Zhuk.

    But I stopped just a bit too soon. Setting the absolutely criminal price aside for a brief moment, with just a bit more math we can say that at the present rate it will take about 22 years to treat all 5.3 Million Americans with the disease, and about 40 years to treat the rest of the “developed” world.

    When will Gilead’s patents run out? They’re normally good for about 17 years, or maybe 20 with some creative thinking?

    Not good news, for what is supposed to be a break-through treatment.


    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).

    in reply to: worser and worser…should be a scandal #5248
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi,

    There is an article by D. Lavanchy (Feb 2011, Journal of Clinical Microbiology and Infection, 17:107-115) which gives a breakdown by country of the numbers of people infected by Hep-C (Table 1). The total comes to 158 910 617. Or roughly 160 Million people. The figure for Australia is 227 331, or roughly 230 Million, which agrees with the figure often quoted elsewhere.

    http://www.sciencedirect.com/science/article/pii/S1198743X14616487

    For the impatient, this shows USA: 5 367 834; UK: 659 032; France: 814 281; Germany 620 168; Spain: 906 340; Italy: 1 923 136, Russia: 5 796 498; Japan: 3 058 008, for example)

    Someone at hepcoalition.org used these figures to calculate, by country, the total numbers of people excluded by the Gilead “Voluntary Licence”:

    http://www.hepcoalition.org/IMG/pdf/countries_excluded_gilead_s_vl.pdf

    The total comes to 73 087 095, or roughly 73 Million. If we set aside China (29 791 212, or roughly 30 Million), which has not accepted Gilead’s patents and can therefore manufacture as much sofosbuvir as it likes, this leaves roughly 43 Million infected people who live in countries that are at the mercy of Gilead’s pricing monopoly.

    If we then take Gilead’s price of $84 000 per treatment, we get a grand total of 84 000 x 43 000 000 = $ 3 612 000 000 000, or roughly $ 3.6 TRILLION as the cost to treat everyone in the “developed” world with Hep-C.

    If we take a price of $ 1 000 as the baseline cost of a treatment under Gilead’s voluntary licence, then the cost to treat everyone else outside of China (160 – 30 – 43 Million = 87 Million) comes to $ 87 000 000 000, or $87 BILLION.

    According the recent analysis by US senators Wyden and Grassley (see full report, page 2, http://fixhepc.com/blog.html), Gilead have sold $26.6 Billion worth of sofosbuvir in the 21 months up to October 2015. Given that they paid “only” $ 11 Billion to Pharmasset to acquire the rights to the molecule, they have already recouped their costs and made an enormous return on their investment.

    Also according to Wyden and Grassley, of the $ 26.6 Billion sales, $20.6 Billion was to US customers. Now, 20 600 000 000 / 84 000 = 245 000 treatments. And 245 000 / 5 367 834 = 0.045. In other words, only 4.5 % of Americans with the disease have been treated.

    Of course these calculations are only estimates.

    But let’s carry on and do the same kind of estimate for outside of the US with the remaining $ 6 Billion. We know that the europeans pay less because its harder to screw a foreign government than an american insurance company. So let’s guess a an average price for europe and the rest of the world of $ 60 000. This gives 6 000 000 000 / 60 000 = 1 000 000 or 1 Million people. Now 1 000 000 / 43 000 000 = 0.023. In other words, to date, only about 2.5% of people in the “developed” world have been treated.

    So with all the big numbers out of they way, we can now see that Gilead are making a shit-load of money (which we all knew already by now), while still leaving the vast majority of people untreated.

    Yours,

    Absolutely speechless.


    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).

    in reply to: Glossary? #5216
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Patient = human being in need of treatment, who often has to wait for a long time. See “warehouse”.


    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).

    in reply to: HCV New Drugs Blogspot #5214
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo
    emilio wrote:

    Hi Everyone

    I’m starting to see fixhepc among most of my ‘hepatitis c’ searches on google. Haven’t tested on the .com only .com.au but would be interested to see how this goes.

    Hi,

    I just tried searching for “hepatitis C” on Google USA with no country-re-direct (https://www.google.com/ncr) and sadly FixHepC did not appear in the first 37 pages offered. However, Pamela Anderson got two hits (hmm, crude joke brewing there?).

    On the other hand, in the UK, the report by senators Wysley and Grassley on Gilead’s greed came up on the first page of results:

    http://fortune.com/2015/12/02/senate-gilead-medicaid/

    and Pamela Anderson got another hit (it’s true!), but sadly still no fixHepC in the top 37 pages.

    Maybe fixHepC should consider investing in a sponsored link on Google on the basis of “if you can’t beat ’em join ’em”?

    I have no idea about the cost, but I’d be happy to contribute to that personally!


    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).

    in reply to: HCV New Drugs Blogspot #4993
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    WOW!

    It is so good to hear American senators Wyden and Grassley really taking this thing seriously.

    All credit to Mike for posting this SEISMIC story. I just want to add the following link so it is officially on the fixHepC site:

    https://www.youtube.com/watch?v=rxd_PTFoouo


    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).

    in reply to: Emilio’s Place #4924
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Right hepatitis C was only discovered in 1989, and there was no way for the “youth” of our generation even to know about it. If I had known, I would have inhaled instead ;)

    More seriously, while we in the west associate HVC with drug use and blood transfusions, there seems to be good evidence the the virus has been around from between 500 and 2000 years:

    evolve.zoo.ox.ac.uk/Evolve/Oliver_Pybus_files/InvestigatingEndemicHCV.pdf

    … which long before hypodermic needles were invented.

    Even though most doctors would probably laugh at the idea that HVC can be transmitted by insect bites, how else could it have spread around the world if it really has existed for so long? I would guess that most of the estimated 150 000 000 people with the virus today have never been near a hypodermic needle?

    We know that HVC is a flavivirus (https://en.wikipedia.org/wiki/Flaviviridae), many of which are transmitted by athropods. So why not HVC also?

    OK, there is good evidence that HVC does not replicate in the stomach of a mosquito like in malaria (which is actually caused by the plasmodium parasite).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88344/

    But if HVC has only existed in man for a few hundred years, it is natural to suppose that the transmission mechanism would not be very efficient… According to a recent review (2013), HVC could have jumped species from (wait for it) … man’s best friend, the dog!?

    http://www.roslin.ed.ac.uk/assets/profile-pages/peter-simmonds/the-origin-of-hcv.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).

    in reply to: Emilio’s Place #4918
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi Emilio,

    I can understand many of us with HCV feel stigmatised. Me, I injected drugs once (about 36 years ago) but like the famous Bill Clinton, I swear didn’t inhale. Does that make me a junkie? Is that how I got the virus? Or did it come from my sadistic dentist who liked drilling big holes in little childrens’ teeth? … Shoot, I should do a Google search on this… :dry:

    Anyway, you’re right. The more it is talked about the better! I have told everyone I know – family, friends, work-colleagues – that I have HCV, and the universal response has been really amazing – “yeah, I have heard about that – its a horrible disease, etc”. Absolutely the least important question was “how did you get it”?

    Even better, everyone was really interested to learn that there’s an amazing group of people in Australia who against all the odds are actually doing something about it… Bloody brilliant! We Brits are proud of you!

    I can’t propose any famous champions of the disease. There is a good list here:

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

    but many of them are dead because it.

    Vororo.


    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).

    in reply to: Once upon a time… #4719
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Yeah, I also really liked that clip when I first saw it…

    …And it really made me appreciate that the fixHepC crew were going out on a limb and maybe even risking their own necks to help people like us.

    …And they were even doing their best to make their web site a friendly place where no-one is scared and nothing is sacred.

    So I’m not really suggesting to get rid of it. Maybe just move it to the BLOG or push it further down the page a bit with some more direct info first?

    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).

    in reply to: Reorganising the discussion forum #4718
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Hi 2b,

    Thanks for this: I can see a lot of benefits with a “HepCure” charity:

    * It could be a kind of agile Medicines Sans Frontiers, focused on Hepatitis C action NOW

    * As a pure fund-raiser, it could operate anywhere and everywhere

    * It would be independent of medical decision-making (while fixHepC needs Dr prescription)

    * It would be at arms-length from all patent / licence / importation issues

    * It could fund free treatments in poor / developing countries (absolutely nobody left behind)

    * As a registered charity, people could get tax breaks by making donations (bigger bang-per-buck)

    * … ?

    Well, these are just a few quick thoughts. I am sure there must be many more possibilities…

    Vororo.


    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).

    in reply to: Once upon a time… #4713
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Dear James, Dear Moderators,

    There is a vast amount of information / advice on the fixHepC web site. But a lot of this is hidden in the various threads.

    May I humbly suggest putting your RTFM plea on the Front Page?

    Also (and please forgive me for saying it), the message carried by the “Ant and the Grasshopper” clip seems rather negative.

    May I also suggest instead to promote more your aim of “Everyone, everywhere, with noone left behind.”

    Best Regards,

    Vororo.


    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).

    in reply to: strange translation of fixhepc on my computer #4657
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Ouai, c’est pas mal!


    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).

    in reply to: strange translation of fixhepc on my computer #4656
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    Bloody hell!

    Erm, please excuse my French!

    I mean to say, I just realised (duuh!) that this thread exists because the fixHepC team have putAUTOMATIC LANGUAGE TRANSLATION on the WHOLE WEB SITE.

    … CHAPEAU!!!

    (translate that, if you can :) )


    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).

Viewing 15 posts - 271 through 285 (of 307 total)