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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #17968

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According to the information available from the Australian Govt there are/were (latest update to site made in 2014) 747 Public and 612 Private Hospitals nationwide.
A wiki list of Australia's Hospitals is here en.m.wikipedia.org/wiki/List_of_hospitals_in_Australia
Of those, Gastroenterological services are offered in the larger facilities and either Day Clinic Outpatient Services; or a Private Gastroenterologist running a private clinic within a Private Hospital is likely to be available for any HCV sufferer. There are also chains of Gastroenterological and Endo Specialist Clinics in Australia. Many are available to the HCV patient.

"It is estimated that 130-150 million people worldwide are chronically infected with hepatitis C. (WHO Hepatitis C Fact Sheet)
In Australia, it is estimated that 230,470 are living with chronic hepatitis C. (Kirby Institute, Annual Surveillance Report (ASR) 2015 - p12)" source: www.hepatitisaustralia.com/hepatitis-c-facts/about-hep-c

David Pieper states in response to the article

"Hep C sufferers’ ire at activist-website ban"

that: "there are over 13,000 of them who are delighted to have commenced treatment since March with drugs have been made available..." (On PBS)

FixHepC has assisted perhaps just under 2000 Australians I am supposing. That's since last year, with the data really coming in to the point where it's heard at EASL favourably. As a percentage of the diagnosed HCV patients in Australia just say at a rounded off guesstimate of 2000 treated via Fixhc I get roughly 0.8% of HCV in Oz treated, 95 ish % successfully and if retreating then aim for 100%

That's out of one Doctors personal practice. And without a magic political carpet ride.

So since the PBS in March, the percentage treated by the vast resources I outlined above in the hospitals paragraph, I get 5.2%

I say count the patients on PBS in any liver clinic on one hand, okay so maybe a thumb print short but close enough and I feel that from patients anecdotal observations.

Imagine if the generic argument became a non argument; based on this glaringly obvious data FixHepC actually convinced the World that generic DAAs are the only way to eradicate the virus in the firing line of big pharma and corporate greed and the political handshakes.

Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Last edit: by Ariel.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #17977

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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


static1.squarespace.com/static/50ff0804e...ewsletter_Issue2.pdf
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Last edit: by Ariel.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18032

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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
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18033

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
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Last edit: by Tina-Hill-facebook.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18034

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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 :sick:
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18041

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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
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18085

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: :sick: :-1: :(
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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Last edit: by Greedfighter.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18092

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
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18101

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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.

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
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Last edit: by Gaj.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18102

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.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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Last edit: by Greedfighter.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18103

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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
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Started Twinvir/ 10-11-15-then Sof/led.
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after one week VL : 37
after 4 wks VL : UND !
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7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18106

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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
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18109

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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.
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
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Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18110

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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
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Last edit: by Gaj.

Hep C sufferers’ ire at activist-website ban 6 years 5 months ago #18112

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I think there is a significant percentage who acquired Hep C from medical procedures, dodgy dentists and anesthetists for starters -
startpage.com/do/search?q=melbourne+dent...atitis+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
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