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TOPIC: PBS Pricing - Take a deep breath...

PBS Pricing - Take a deep breath... 5 years 7 months ago #13223

  • Ariel
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Hi all
Yes I agree it's strange
My huge hospital isn't giving out meds yet
I am confounded by the couple of success stories here on PBS meds but at Monash they're not filling out tons of scripts
I'm ready to just buy meds if I relapse
I have an extra 12 weeks of sofled here anyway due to a glitch in what Monash were prepared to even see me with in terms of suppliers
It's a very quiet roll out at my hospital
Well patients were being pushed back until September when I was there on Friday
Wondering if other States are more active?
X
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13224

  • zhuk
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Its an interesting question, Ariel. I intend to find out how the situation stands at my clinic when I go in for my Marcg 24 EOT test results, week after next...being one of Sydney's major hospitals should be a good indicator, if they're not prescribing yet.
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
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13230

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If you know your genotype and cirrhosis level it really is just a matter of finding a GP who is a decent human being. Greg Jefferies has been compiling lists of them in each state from what I have heard.
You can't really blame the Public Hospitals for being slow and useless when you consider how poorly they are funded these days.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13236

  • Greedfighter
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It seems strange Australia has compounding pharmacies selling generics. Why doesn't the government use them?
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
Last Edit: 5 years 7 months ago by Greedfighter.
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13238

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I'm just making an observation about the major hospitals.
Not emotionally blaming or emotional anything
I'm not wired that way
Zhuk I got my script from Sydney I have flown up a few times to see a guy who then was kind enough om receipt of my phone call after the Dec 1 knockback to post a script down to me here.
Re my two friends they're in Adelaide
It's their reasons privately that they choose to wait. I'm hoping like many people around the country that the roll out gets rolling just for these type of patients who maybe aren't as empowered or actually physically able and are psychologically hurt to get the DAAs through their clinics
I don't have anything else to offer this debate
I lobbied incessantly for the past almost three years and said to the pollies and drug companies.
Let me know what the Sydney vibe is Zhuk just out of interest
Ty
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13242

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"It seems strange Australia has compounding pharmacies selling generics. Why doesn't the government use them?"

Because like all Western countries our government are corporate shills elected by a dumbed down and self defeating population. The amount of money they have given to big pharma for these meds is a drop in the ocean compared to what they have given the US Military Industrial complex.

I know you are not making judgment calls Ariel. You are righteously angry about many issues and I fully support you in that.
I guess the painful truth is that life demands survival skills that not everyone is gifted with.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13243

  • flyingfox66
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By the way if you want to see people being given meds by liver clinics you just have to look on the Facebook page...there are quite a lot of them there...though it would be true to say many of them are Queenslanders. I guess we just don't have the population pressures you have down south.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13244

  • Ariel
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flyingfox66 wrote:
"

I know you are not making judgment calls Ariel. You are righteously angry about many issues and I fully support you in that.
I guess the painful truth is that life demands survival skills that not everyone is gifted with.

Good morning FF
No not "righteously angry" either
I'm an activist to help others after what I experienced and I go in love x anger is not helpful only love
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13245

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I embrace a full spectrum of emotions, dark and light. Never hide from the shadow side.
Anger is the energy that changes the status quo.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13246

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While we hear a lot about there being no triaging of these meds on the PBS, I think we need to consider the situation in public clinics. There are a lot of patients at these with varying levels of illness, some have mild fibrosis, some compensated cirrhosis and some are clinging to the edge of the cliff of liver failure. The doctors and nurses at each hospital can treat everyone by an alphabetical list, length of time as a patient or some such or they can triage, not the medications but their own and the clinics care, prescribing, instructing and monitoring time. As a compensated F4 with HCC history and rapidly declining health, I was told last October that if and when approval came through I would be treated asap but there were others who were a much higher priority than me. I came here. :+1: :+1: :+1:

I would urge anyone who didn't have at least compensated cirrhosis or other need for specialist and/or ongoing monitoring to consider finding a sympathetic GP. Once you are treating and being monitored by them you can then weigh up whether to totally cancel your clinic appointments or request a quick post treatment checkup to alleviate any concerns or need for further monitoring (the latter is really important if you are F4). After all this is the model that the new system is based on. :)
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: 5 years 7 months ago by Gaj.
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PBS Pricing - Take a deep breath... 5 years 7 months ago #13252

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I can tell you what happened with me.

First of, I received my Harvoni yesterday and popped the first pill pretty much immediately :woohoo:
However, if I hadn't gone to RPA in October, informed them I'd decided to buy generics and asked them for a script or at least to tell me what they WOULD be prescribing me if the drugs were available here, it wouldn't have happened as quickly.

My Dr told me the main reason the hospitals aren't stocking the drugs is funding, followed by red tape.

My pharmacist told me how much it was costing her to get me Harvoni. She will get the bulk of it back from the PBS but still.....

The govt is paying around $74 a tablet. Do you think that's a good deal?

The other question is where is that money coming from? Unfortunately funding for Harvoni etc is being taken away from other treatments to fund ours.

I am fully aware that my treatment comes at the expense of people with other conditions, and they also need treatment. I'm doing exactly what the doctors and nurses at RPA tell me. To the letter
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13253

  • Sirchinenge
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That's a pretty good explanation Gaj as to why some liver clinics might be slow rolling out treatment
you're absolutely right most liver clinics can only treat so many patients at a time its kind of a
given they will treat the sickest first.

I would think GPS that can write scripts will treat whomever comes through their doors so to speak...

Shocking to think you're an F4 and could not access treatment........
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13255

  • beaches
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My GP is into integrative medicine. He 'inherited' me as a patient from another GP who is awesome but went bush to do locum work. He knows very little about liver issues which is why I took myself to RPA. I doubt very much that he would have given me a script for Harvoni.
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13261

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Sirchinenge wrote:
Shocking to think you're an F4 and could not access treatment........

Hi Sir,

I should clarify, that was last Oct when no one in Aust was getting any Sof/Dac/Led treatment unless you managed to get on a trial or were (un)lucky enough to get compassionate access. I was trying for both but when I heard what Dr Freeman and Greg were doing I figured that was going to be a lot quicker!

It was also prior to the gov't decision to treat everyone, which I suspect would have sped up my priority. But it doesn't matter for me now, while realising that some can't afford to purchase even at generic prices, what I paid for my generics was nothing to the quality of life and reduced risk that early treatment has given me. :cheer: :cheer: :cheer:
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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PBS Pricing - Take a deep breath... 5 years 7 months ago #13311

  • zhuk
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Ariel wrote:
I'm just making an observation about the major hospitals.
Not emotionally blaming or emotional anything
I'm not wired that way
Zhuk I got my script from Sydney I have flown up a few times to see a guy who then was kind enough om receipt of my phone call after the Dec 1 knockback to post a script down to me here.
Re my two friends they're in Adelaide
It's their reasons privately that they choose to wait. I'm hoping like many people around the country that the roll out gets rolling just for these type of patients who maybe aren't as empowered or actually physically able and are psychologically hurt to get the DAAs through their clinics
I don't have anything else to offer this debate
I lobbied incessantly for the past almost three years and said to the pollies and drug companies.
Let me know what the Sydney vibe is Zhuk just out of interest
Ty
Ariel


No probs Ariel, will do :)

I know that RPA had had reasonably (as far as public hospitals go) extensive experience with patients presenting with their own generics and also clinical trial management, so I'd like to think that they might be proactive with getting the PBS meds out there. Stay tuned.

EOT bloods on Thursday, then a week to wait...its going to be long week too I think lol
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
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