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TOPIC: Australian PBS Listing - Almost Heaven

Australian PBS Listing - Almost Heaven 3 years 7 months ago #8191

  • Gaj
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Well, that is my estimate of what it will cost PBS if everybody was treated. Apparently there is a cap on what/how many the PBS scheme pays each year with the pharma companies paying for any patients that want treatment and exceed that cap. That is why my proviso that we would need to treat approx. 46,000 per year (actually a ramping qty over time) and we still pay the same if we don't meet that target. The figures are a bit rubbery as always when dealing with these sort of things but I suspect the Pharma's are betting on not having to treat anywhere near that number. James put together some figures based on the best knowledge available just after the initial announcement per below blog.

fixhepc.com/blog/item/32-pbs-listing-hea...-in-the-details.html

The other point is that proposed guidelines seem to indicate state of the art Tx for G1 & G3 but only Sof/Riba for G2 and an evil Sof/Riba/Interferon brew for G4,5,6.
My (really Jimmy's) generics suggestion costing uses Sof/Dac or Sof/Led for all genotypes. And still much cheaper!
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:
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8205

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I expect now that the PBS (and then Gilead) pays, it is up to everyone to make the effort to look after themselves and take on treatment.

Using generics would be justice for Gilead's greed, but now that they have supposedly agreed to limit their greed.........?

I expect that people getting help for treatment with DAA's is more likely to happen if their liver clinic/specialist simply writes a PBS script rather than frets over generics? And with people being told that treatment that is paid under the PBS is now available.

The Medicare and PBS setup here in Australia is for everyone who is sick whatever the cause.......

Just some things I was thinking about.......

Whatever happens, now I am UND and have experienced some weeks of a fuller life rather than the half life/fatigue crap one I have lived in the later part of my 25 years of having HepC. I wish others can get a bit of the same as well.

While I cannot ever say that things are now 'all good', some people in Tassie and other cyberspace type places, made a game changer. Again thanks for that. There appears now to be two ways of getting the meds where before for me at least there was none.


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8212

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sabrecat wrote:
I expect now that the PBS (and then Gilead) pays, it is up to everyone to make the effort to look after themselves and take on treatment. Yes and for those whom the queue it too long there is the option of generics if they self pay

Using generics would be justice for Gilead's greed, but now that they have supposedly agreed to limit their greed.........? A devil's advocate would ask what was an acceptable level to limit greed to? I'm not certain I know the answer to that?

I expect that people getting help for treatment with DAA's is more likely to happen if their liver clinic/specialist simply writes a PBS script rather than frets over generics? And with people being told that treatment that is paid under the PBS is now available. Well, yes.....unless you happen to be one of the 10% who are G2,4,5 or 6 who wants something more than second class citizenship.

The Medicare and PBS setup here in Australia is for everyone who is sick whatever the cause....... yes, but again see my answer to the previous question.

Just some things I was thinking about.......

Whatever happens, now I am UND and have experienced some weeks of a fuller life rather than the half life/fatigue crap one I have lived in the later part of my 25 years of having HepC. I wish others can get a bit of the same as well. Definitely, both fellow Australians and the international community deserve it.

While I cannot ever say that things are now 'all good', some people in Tassie and other cyberspace type places, made a game changer. Again thanks for that. There appears now to be two ways of getting the meds where before for me at least there was none. Yes, many thanks!


J.

Sabrecat,

I largely agree your sentiments when translated to the realities of politics and commerce but the idealist/perfectionist in me says we could do better and cheaper both for Australians and as models for the international community. Something to dream of and work towards. :)
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:
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8216

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Sabrecat we started treatment within two days of each other we both have
very similar VL results same when we hit UD!
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8217

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sabrecat wrote:
I expect now that the PBS (and then Gilead) pays, it is up to everyone to make the effort to look after themselves and take on treatment.

Using generics would be justice for Gilead's greed, but now that they have supposedly agreed to limit their greed.........?

...

Whatever happens, now I am UND and have experienced some weeks of a fuller life rather than the half life/fatigue crap one I have lived in the later part of my 25 years of having HepC. I wish others can get a bit of the same as well.

It's getting a little old using Gilead as a whipping boy seeing as they produce the drug that is improving people's health. As you say, "I am UND and have experienced some weeks of a fuller life rather than the half life/fatigue crap one I have lived in the later part of my 25 years of having HepC". Well, that suggests that Gilead have provided something very precious to you.

If you really need someone to crucify for greed and mendacity, send some hate in the direction of the vitamin companies. Unlike Gilead, they mislead with the advertised benefits of their products and benefit hugely. Gilead provide a demonstrated cure, while the vitamin companies lie through their teeth to profit from people's ignorance.

Yes, I admit that a couple of vitamins and supplements have demonstrated effectiveness in particular cases, but on the whole, it's the companies on that particular side of Big Pharma are the real parasites on our society. The various developers of DAAs are paragons of virtue by comparison. Hell, even without comparison.
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8221

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Well,Gilead bought the company that devolved the drug,they have all ready made billions I think
we all have issues with the excessive pricing they have choose they could charge 10k per
and make billions not the 70k and more most countries pay.

You know, we all pay the cost some how by taxation, higher health insurance the only winners are
Gilead and its shareholders.

I think the poster has not being saved by Gilead he bought Generics!

Lastly, I've only met one other person who defended Gilead,funny enough he had failed
with Havroni and was being treated with a new drug both supplied for free.

He had said he would pay the 70 k it costs in Ireland he also thought as he was being cured
( Treatment is now working) Gilead could charge what the want.

He failed to see him being treated at 70 K per 84 days meant the likes of me would not
be treated as the budget only allows F4 and worse like him to be treated.

I think his view is abhorrent it only takes him into consideration I have never met anyone
patient or other wise share same.

Lest we forget many people will die and have died due to their pricing!
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
Last Edit: 3 years 7 months ago by Sirchinenge.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8316

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I will Hate, Hate, Hate Gilead for ever A.L. If they weren't so greedy, people would have a good fighting chance of being alive today. I lost my cousin the other day to a Hep C related illness. You obviously haven't been around many Hep related deaths. I will hate Gilead forever. Furthermore I offered Gilead $30,000. Bastards knocked me back. Greedy, Greedy, Greedy. Gilead are PIGS. To defend Gilead is criminal.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8348

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Wow A.L. You must be either filthy rich or have not been bedridden for years and riddled with secondary issues and lost your income after years of professional career which you loved and had to raise a family and and and and gosh! I don't get into confrontation usually but I won't accept that this billion buck beast has or is doing the right thing.
Yes I too have lost way way too many people thankyou I share your empathy berrinice yes same back at you hugs x
#rant
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
Last Edit: 3 years 7 months ago by Ariel. Reason: Tried to use rant icon
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8353

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Wow A.L....what you just said is just uninformed nonsense.

First of all, Gilead bought the company Pharmasset, who actually invented the drug. Pharmasset executives have stated they were going to charge $35,000 for 12 week treatment, and are dismayed to find Gilead charging basically 3 times the price. Insurance companies would have probably given it to anyone infected for 35K. I'm very disappointed, but not really mad at insurance companies, because they would be bankrupted by this treatment at 96K, or even the discounted 56K. It is Gilead who is the real villain here. Ever hear of Martin Shkreli, scumbag CEO of Turing pharmaceuticals? Most hated man in America? This is basically what Gilead did, buy a drug patent in order to make a huge profit by taking advantage of sick patients.

Gilead is more a hedgefund than pharmaceutical company. They just want to make money. I am poor. I contacted their "support path" for assistance. I qualify for $73,000 in grants. They still wanted me to take a loan for $23,000 for Harvoni. I told them I will just get it from overseas, thanks for nothing. I rewrote this reply after reading all your posts. I think you just don't know that Gilead is not a good company, concerned for people. But God bless Incepta and the Australian compounders (Kingswood, Lindfield) for providing affordable access.

As far as vitamins are concerned, you are totally wrong.. Vitamin supplements have been proven over and over to be beneficial. There are so many studies supporting supplements. Too much of certain vitamins could be harmful, but like anything else you have to educate yourself.
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
Last Edit: 3 years 7 months ago by Greedfighter.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8363

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On the subject of vitamins, I would note that most people are unlikely to develop serious, debilitating illness or die if the vitamin manufacturers price their product at levels that exclude all except the wealthiest individuals. Therefore the choice to purchase their products or not ultimately comes down to personal choice and belief systems.

Thanks Greedfighter - you know why B)
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:
Last Edit: 3 years 7 months ago by Gaj.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8455

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Hello A.L.

maybe it is time we did move on - at least for us in AUS that now have the PBS issue settled. But, there are those in other countries part of me cannot ignore, and hence the sideswipe at Gilead....

But now there is to be affordable treatment here in AUS, we seem to be sharing more and more about improvements in LFT's, VL=UND!!, life in general and sharing experiences about life, before and now, and what the 'new future' may hold.

I would've bought from Gilead, but chose generics on price considerations. My choice and all good!

I think having HCV for many years can leave people, me at least, a bit opinionated, but most of the time I look at my signature below on this forum, again ALL GOOD.

I hope you can share yours here too.

Yours

J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Australian PBS Listing - Almost Heaven 3 years 7 months ago #8458

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sabrecat wrote:
.... at least for us in AUS that now have the PBS issue settled.

Maybe.....I've stated previously that I will wait and see. If nothing else, this virus has taught me how to wait and in my lifetime I have seen many a slip twixt politician's press statement and outcome. And don't forget the stated "within a generation".

sabrecat wrote:
But, there are those in other countries part of me cannot ignore.......

True, and while this site was started by a Tasmanian doctor, it isn't just for Australians and is reaching more and more people around the world everyday.

I do understand and accept the wish of people after treatment, to put this disease behind them and move on with the rest of their life. That is a natural inclination and necessary for many. I may well find myself feeling the same in 4 or 10 months time, another case of wait and see.

But for now if I can contribute to helping others seeking treatment for HCV then I am glad to do so. And that includes pointing out the excessive greed of Gilead and better ways that our government, and others, could work to extinguish this virus much as former generations did with polio, smallpox and many other diseases.

#rant over.
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:
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Australian PBS Listing - Almost Heaven 3 years 6 months ago #9263

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sabrecat wrote:
Hello A.L.

maybe it is time we did move on - at least for us in AUS that now have the PBS issue settled. But, there are those in other countries part of me cannot ignore, and hence the sideswipe at Gilead....

But now there is to be affordable treatment here in AUS, we seem to be sharing more and more about improvements in LFT's, VL=UND!!, life in general and sharing experiences about life, before and now, and what the 'new future' may hold.

I would've bought from Gilead, but chose generics on price considerations. My choice and all good!

I think having HCV for many years can leave people, me at least, a bit opinionated, but most of the time I look at my signature below on this forum, again ALL GOOD.

I hope you can share yours here too.

Yours

J.

Thanks, J. Yes, I also hope I can post a success story, also being a benefactor of the low prices that FixHepC has organised. I've said most of what I intended and don't need to add much more (for now ;) )

But if I can add one tiny parting point, the generics are also produced under licence from Gilead, just in countries whose governments knew how to argue and apply pressure effectively. The big question is why are the Hep C sufferers being given such lousy choices in the USA in particular? It's obscene, but all legal.

Who is more guilty here, the greedy company, or the national political culture that allows them completely uninhibited expression of that greed? (In another post I note that plenty of other companies are exhibiting the same kind of behaviour.)

(It's like having a fat dog. Some kinds of dog will just eat and eat if you let them, and so become very fat. Who is to blame – the dog, or its owner and leader?)

Looking to a better future,

A.L.
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)
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