Home Forums Main Forum Media & News Hep C sufferers’ ire at activist-website ban

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  • #19281
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Continuing my thoughts linking the data:

    So of an estimated 6% of Australia’s HCV diagnosed population treated with DAAs, (0.8 via FHC 5.2 via PBS) approx 13.5% of those in tx or now treated are from a single Doctors integrity and leadership globally.

    Again, this should be reflected in global data. If ONLY but how? Raise the volume. Write it on social media. Shame the greed and genocidal maniac that is big Pharma
    Okay back to work sorry morning tea #rant

    Bottoms up heads down
    Ariel

    http://static1.squarespace.com/static/50ff0804e4b007d5a9abe0a5/t/575f2d259f7266ebae8ec5f8/1465855281347/Kirby_HepC_Newsletter_Issue2.pdf

    #19339
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    If each of the 25,000+ GPs who bill Medicare each quarter had started 1 patient a week on treatment then EVERY SINGLE PATIENT in the country would either be on treatment, or already finished.

    If this was breast cancer, which has a 22% 15 year mortality rate (not a lot different from Hep C’s 20% mortality rate), does anyone believe we would be seeing the same inertia?

    13,000 is a good start but nothing like what could be achieved with a little bit more of a push. If treatment costs are capped, as they are said to be, it is rampant fiscal irresponsibility not to hit that cap.


    YMMV

    #19340
    Avatar photoTina-Hill-facebook
    • Guardian Angel
    • ★★★★★
    @tina-hill-facebook

    Talk about perspective Doc :ohmy:

    If each of the 25,000+ GPs who bill Medicare each quarter had started 1 patient a week on treatment then EVERY SINGLE PATIENT in the country would either be on treatment, or already finished.


    SVR 24

    #19341
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    For the very reason a tiny lump behind the nipple easily removed no other treatment needed, no scar or change to breast, resulted in get well cards, humungous bouquets, time off work, worried looks of empathy……and HepC cost me my siblings etc. blah blah

    stigma

    Oh and it also helps if a politician or their family are affected just saying.
    A <img style=ick:' />

    #19348
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    It makes me sad. Like Ariel said it’s the stigma. Do our public SERVANTS aka government think we are a bunch of sleazy low-lifes who deserve to get sick and die?
    Listening to Michaelia Cash bang on about the great deal her department got for the DAAs makes me laugh. And vomit. No performance management obviously. Tell a public servant there’s a $30K bonus in it for them if they can get 50% off the greediad price and it’d be done. Unless greediad slipped them a better incentive of course.
    Grrrrrr :angry:


    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

    #19393
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    Gilead (and the other HepC manufacturers. None of these meds are cheap) are playing chicken with insurers and health systems.

    They keep the price high; it guarantees a steady stream of new ill patients. They make big money.

    So far, it is cheaper for the payor to wait until advanced illness onset. Yes, it seems in Australia and everywhere except a few countries, that the money is more important than people. Although in Australia, you have access to generics. But the government is censoring the advertising of these meds. I don’t get this, Australia seems to have a confused government.

    In Australia, can the pharma companies make donations to political candidates? If so, there is your answer. And of course, most Hep C sufferers (me included) got this through reckless behaviors. Politically, we don’t matter

    In first world countries, we are dogshit to the politicians. Drug addicts; wastes of life. Why should society help us?

    Third world people get this disease from unsanitary conditions. That’s why there is more sympathy for them.

    Take the bone they are throwing you! They are allowing you to buy your own treatment!

    Or wait until you qualify for treatment :ohmy: <img style=ick:' /> :-1: :(

    #19401
    Vikki
    • Topics: 0
    • Replies: 1
    • Total: 1
    • Novice
    @vikki

    Greedfighter I believe the big Pharmaceutical companies can donate to the political parties. This is the most up to date list I could find Electoral Commission list of Donors

    However whether they donate directly or not, they put funding into organisations like this one which in turn make donations
    Medicines Australia

    #19410
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Third world people get this disease from unsanitary conditions.

    No, many “third world people” originally got this disease through medical procedures carried out in ignorance of its existence. Much like I was in ignorance of its existence back in the mid seventies when I acquired it.

    And these days the appalling stigma attached to it prevents people all over the world from holding an honest conversation about it which means many still don’t fully understand the risks from medical procedures, recreational drug use or other means.

    That’s why there is more sympathy for them.

    No sorry, not a lot of sympathy that I can see. The prices of generics over there may look cheap to you and I but consider that “India’s per capita income (nominal) was $1,497 in 2013” and for the Bihar region it was $682 in 2015.

    https://en.m.wikipedia.org/wiki/Income_in_India

    So it’s all relative and the reality is that these generic medications are probably little more affordable to the average Indian (or other “third world country”;) than the Branded product is to you.

    It’s a worldwide problem but as you point out the Pharmcos throw money wherever they need to protect their interests. That includes marketing, government and even hepatitis organisations.


    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:

    #19411
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    Gaj, that is really what I meant. Unsanitary surgical procedures is included in my comment. It is a disease acquired though intimate encounters. How else can such a large third world population be explained. Sorry for not being more specific.

    Overall, what I meant is in the first world, MOST people acquired this disease through drug use. I believe most third world patients acquired this thought unsanitary medical procedures or sex.

    #19412
    Avatar photoCJ
    • Guardian Angel
    • ★★★★★
    @cj

    Is it really spread by sex? I always thought this wasn’t so?
    & what about mozzies?
    I know a lot say it isn’t, but I’ve always wondered?! as the mozzies seem to spread so many diseases. :(
    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!!

    #19415
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    And my point is that the actual means of transmission is unimportant, most people acquire it through ignorance.

    Emphasising just one means is catering to the popular prejudice that is whipped up by the media and helps to reinforce the public stigma and justify the lack of political willpower to deal with the issue.


    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:

    #19418
    Avatar photofitz
    • Guardian Angel
    • ★★★★★
    @fitz
    CJ wrote:

    Is it really spread by sex? I always thought this wasn’t so?
    & what about mozzies?
    I know a lot say it isn’t, but I’ve always wondered?! as the mozzies seem to spread so many diseases. :(
    x

    Dr. Freeman can correct me if I’m wrong. It can be transmitted through sex, but for some reason in the majority of people HCV is not transmitted in semen or vaginal fluids.

    Mosquitoes? That’s a good question. Zika certainly travels that way.

    #19419
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj
    CJ wrote:

    Is it really spread by sex? I always thought this wasn’t so?
    & what about mozzies?
    I know a lot say it isn’t, but I’ve always wondered?! as the mozzies seem to spread so many diseases. :(
    x

    Sex is very low risk in monogamous couples. The risk increases with rough sex, promiscuity and gay penetrative sex.

    Mosquitoes don’t spread HCV. Mosquitoes only suck blood, they can’t re-inject it but they do inject saliva. Any virus being spread by mosquitoes needs to be able to infect the mosquito and then replicate in it so that it can make the journey from swallowed blood to injected saliva. As mosquitoes don’t have livers HCV is unable to replicate even if it didn’t get destroyed by the mosquito’s digestive system so it can’t make that transfer.

    Edit: Zika does infect mosquitoes which is why they transmit it via a mosquito-human-mosquito cycle.


    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:

    #19421
    Avatar photosonix
    • Guardian Angel
    • ★★★★★
    @sonix

    I think there is a significant percentage who acquired Hep C from medical procedures, dodgy dentists and anesthetists for starters –
    https://startpage.com/do/search?q=melbourne+dentist+convicted+hepatitis+c&lui=english
    And of course blood transfusions from before Hep C was screened in donations.

    And I looked into the mosquito vector a while back, it seems unlikely.


    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

    #19430
    Avatar photomgalbrai
    • Guardian Angel
    • ★★★★★
    @mgalbrai

    Until HIV came along, my dentists didn’t wear gloves, eye protection or masks. I virtually certain I got my dose of HCV during an exploratory surgerical procedure back in the mid 70s. A simple stricture in my ureter was causing constant bladder infections. In the era before MRIs. and other advanced scans, they had to go in and poke around to find out what was wrong. They cut me open from my belly button to my backbone. They also gave me a unit of blood.
    My PCP said it would be an outpatient procedure today with a one inch incision.
    Times have changed.
    m


    Curehcvnow@gmail.com
    http://forums.delphiforums.com/generichcvtx

    G 1a F-1
    Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
    11/17/15 4 wk lab ALT 17 AST 16 <15
    11/18/15 Started Harvoni
    12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
    1/14/16 Fin. Tx
    7/07/16 UND SVR 24

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