Background info on Sussan Ley's announcement

This topic has 80 replies, 21 voices, and was last updated 8 years, 9 months ago by Gaj.

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22 December 2015 at 3:06 am #7019
zhuk
- Topics: 5
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- Total: 548
- Guardian Angel
@zhuk
mgalbrai wrote:

Now it will interesting to see what the PBMs in the U.S. can negotiate. With our murky importation laws and no Dr. Freeman to pressure Gilead, the 3 plus million may have to continue to innovate or, as many promote, wait.
And get sicker…
And die…
Mike

Hear you, Mike. No matter what has happened in Aust, the fact that Gilead makes 50% of its total profit from Sovaldi alone and the US being by far its most lucratove market, shows how vital the continued supply of generics are. You guys need that pipeline to stay operational now more than ever.

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
22 December 2015 at 3:14 am #7020
Chester
- Topics: 7
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- Total: 206
- Guardian Angel
@chester
Sorry I shouldn’t have called people seriously deluded above. That was a bit harsh. I still suffer from PTSD as a result of what ACT Labor and some federal Labor MPs did to me and it bubbles to the surface fairly readily.

My apologies if I offended anybody.
22 December 2015 at 3:16 am #7021
Seymour
- Topics: 2
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- Total: 21
- Treatment Warrior
@seymour
flyingfox66 wrote:

I’ll be very interested to see if Fibroscans are a requirement. If you want one here in Brisbane its either pay up or 6 months wait (and that was before this announcement).
I am also a little concerned as to whether 8 weeks is enough for those without Fibrosis. I certainly have some Fibrosis but not much. There has to be some way of calculating who gets 8 weeks and who gets 12 I guess. And they better not try and make me take Riba or I’ll rage at them

All that said I’ve made the decision to wait and see. Very grateful indeed to James Freeman for making the refund a possibility for those of us who just ordered. Thanks for being such an honourable and courageous man.
It’s going to be a much merrier Christmas in my household.

It’s very hard to trust these bastards thats for sure, but I don’t see how they can back out of this deal now.

National treatment guidelines are being developed now and they will make it clear how many weeks treatment you need depending on level of fibrosis, treatment history, co-morbidity etc. Some regimens will include ribavirin, and it is a bitch, but at least it is only a bitch for 3 months.

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 3:27 am #7022
Seymour
- Topics: 2
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- Total: 21
- Treatment Warrior
@seymour
poodle wrote:

I understand your point but Iam talking about since fixhepc was started, and encouraging people to help themselves.

Many people do not actively engage in their health care. Helping themselves is not a concept they understand. People like this will need to have their hand held every step of the way and that will be an important role for all of us once we have been cured.

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 3:31 am #7023
flyingfox66
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- Guardian Angel
@flyingfox66
Thanks Seymour. If they use the EASL guidelines then I should be okay. Genotype 1a doesn’t seem to need Riba.
Feeling increasingly positive about all this.
We are all cynical and jaded and it takes some convincing to get us on board.
Maybe this is a watershed moment, and things will start to get easier for everyone everywhere.
I really hope so.
Merry Christmas to you all!

F49HepC25ysGT1a
mild”
22 December 2015 at 3:37 am #7025
Seymour
- Topics: 2
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- Treatment Warrior
@seymour
Gaj wrote:

I share your concerns Paul, so we need to ensure that people are aware that not everyone caught it that way and that those of us who did have been typical Australian workers, taxpayers, parents, grandparents and valuable contributors to society in the often many decades since then.

G

Everyone is equally deserving of treatment, even people who used to, or currently inject drugs. There are no undeserving patients and we must be careful not to stigmatise people whose experience is different from ours. We all suffer the stigma of hep C because of its association with injecting drug use so let’s not add to the stigma by using discriminatory language or suggesting that some people are more deserving than others because their experience is different.

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 3:38 am #7026
zhuk
- Topics: 5
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- Total: 548
- Guardian Angel
@zhuk
With you on that fox. It does seem positive beyond what I could personally invisage, as a born cynic.

Here’s hoping its a game-changer all round.

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
22 December 2015 at 3:49 am #7028
Seymour
- Topics: 2
- Replies: 19
- Total: 21
- Treatment Warrior
@seymour
Vororo wrote:

… No doubt there are many people (mostly F0-F2) who do not know they have Hep-C.

Has anyone seen any figures on this?

Australia has one of the highest diagnosis rates in the world – around 80% are diagnosed. The 230,000 affected in Australia is an estimate but there is a high degree of confidence in the estimate. On these figures, there are only 46,000 undiagnosed. Some of these would be Aboriginal people in remote communities and people from non-English speaking backgrounds.

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 4:02 am #7030
Seymour
- Topics: 2
- Replies: 19
- Total: 21
- Treatment Warrior
@seymour
The+Economic+Impact+of+Hepatitis+C+in+Australia_FINAL.pdf

Chester wrote:

Ok I’ve just read the rest of the doc’s blogpost and I see there is some suggestion the hep c treatments are being funded by the cuts.

But I’m not convinced that’s entirely fair. Maybe it’s the AMA who are using us as political pawns here. For starters, there is the money to fund this that would have previously been spent on interferon treatments. Secondly, if they’re smart they won’t be bothering with a whole lot of tests on hep c patients that are really no longer necessary. For most people, except the borderline cirrhotics, a fibrosure score should suffice to determine treatment length. Saves a bucketload on expensive fibroscans. As we all know, eot PCRs aren’t really necessary. Then there’s all the savings from not having to treat people with end stage liver disease. If you added up all the costs of those things alone, I’m sure it would go a long way to covering the cost of this programme.

The costs are difficult to compare. While the Fibroscan machine is very expensive to purchase, the test is very cheap. PCR is essential because some people will clear hep C naturally, although they remain antibody positive (like we all will). The cost of treating end stage liver disease or a liver transplant is enormous but only a small proportion will get to that stage, even without treatment. A 2012 report on the economic impact of hepatitis C showed that every one $1 invested in hep c treatment now saves $4 down the track, but the costs keep changing.

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 4:02 am #7031
zhuk
- Topics: 5
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- Total: 548
- Guardian Angel
@zhuk
Interesting, Seymour.

In what you might consider a comparable country (NZ) its only 40%. DAA’s are definitely not publicly available there as yet.

https://www.3news.co.nz/nznews/hopes-for-kiwi-access-to-hep-c-treatments-2015122118

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
22 December 2015 at 4:04 am #7034
Joy
- Topics: 12
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- Guardian Angel
@joy
Seymour wrote:

Many people do not actively engage in their health care. Helping themselves is not a concept they understand. People like this will need to have their hand held every step of the way and that will be an important role for all of us once we have been cured.

So true Seymour. Some are on disability pensions because of Hep C – curing would mean losing that, along with an identity that may have been decades in the making. Shifting from not having a future to having one does require some hand-holding.

I am ecstatic about the announcement and sincerely hope it doesn’t become a political bun fight.

Agree with you GAJ – some educational publicity on our collective usefulness and diversity would be beneficial. Some have ‘come out’ already, kudos to them, may there be many more. “Once a junkie, always a junkie”… who said that anyway?? Have to dispel that one. How about “Once a junkie – now a teacher, lawyer, writer, garbo, nurse, actor, artist, grandparent, philanthropist, politician…
22 December 2015 at 4:14 am #7035
sonix
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- Guardian Angel
@sonix
I’m interested in how it is possible to estimate the number of undiagnosed? I guess you could use a decent size random sample of people and then test them all and extrapolate. But that would cause an analog of Heisenburg’s Uncertainty Principle ie. just doing the test would change the results.

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
22 December 2015 at 4:38 am #7039
Seymour
- Topics: 2
- Replies: 19
- Total: 21
- Treatment Warrior
@seymour
sonix wrote:

I’m interested in how it is possible to estimate the number of undiagnosed? I guess you could use a decent size random sample of people and then test them all and extrapolate. But that would cause an analog of Heisenburg’s Uncertainty Principle ie. just doing the test would change the results.

I don’t know exactly, but it is done using mathematical modelling by estimating the prevalence within particular populations and extrapolating that to the size of population. Thankfully we have the Kirby Institute to guide us on this and many other measures of how Australia is responding to hep C

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
22 December 2015 at 8:49 am #7047
klhilde
- Topics: 30
- Replies: 223
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- Guardian Angel
@klhilde
Okay, let me get this straight … (Mike has already touched on this, but I’ve gotta push this hard!)

$1,000,000,000 / 62,500 patients = $16,000 / patient …. and free beyond the initial 62,500

AU$16,000 / 1.38 = US$11,594.20

This is about 1/5 of what the French are paying … with no cap for the French. It’s also about 1/5 the best deals a few of the insurance companies in the US have been able to negotiate (if I understand correctly.) Sorry to say this to my Aussie mates but …. this cannot be attributed to any higher negotiating skills of Australian politicians or bureaucrats.

First, while Gilead clearly has no soul and a distinct business logic tunnel vision, it doesn’t mean their statisticians are incompetent. I suspect that they’ve run the numbers and have good reason to believe that 62,500 is nearly all that will be seeking treatment in the next five years.

Even so, I see only two factors pushing Gilead to make this pricing decision.
1) Very clear, unambiguous legality of drug self-importation in Australia.
2) Dr. Freeman, Greg Jefferys and everybody here at FixHepC.com, (along with the news coverage) that is making treatment with generics start to hit the mainstream.

Gilead is terrified that the word will get out to other parts of the world.
Gilead is attempting to buy your silence.

We’ve seen it before. Gilead tried to sell the notion that the licensing of generics in India was about compassion; we all know it wasn’t. Gilead had a very clear idea that their patent would be rejected in India and was trying to preempt a flood of generics by contractually restricting sale to the poorest countries … no generosity or goodwill about it.

Same with Egypt, Brazil and elsewhere, the prices were offered to protect their most lucrative territories.

FixHepC.com has become the global center of generic treatment information. While there are several Brits and a few Americans and a spattering of others here, most of the current 646 registered forum members and of the maybe about 50 people actually talking a lot on this forum are Australians. Gilead hopes that with this price concession that this web site will die.

We have to make sure that does not happen.
22 December 2015 at 9:57 am #7049
Chapel
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- Guardian Angel
@chapel
Yes Buyers Club probably influenced the deal one way or another and it certainly deserves a big role in getting generic meds where they are still needed.
The Australian deal has surprised most of us and we are yet to see how well it rolls out, but Gilead has slashed its very obscene price and agreed to cover the over-cap patients, if any. I can’t downrate them morally from what I know of this deal.

M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
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