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TOPIC: Buyers Club Scheduled To Meet Key Decision Makers

Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2521

  • Johnboy
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What happened at the meeting in Canberra?
G1 58yo F1 54,000 viral load Relapser 2003/4 Sof/Dac started 21/9/2015
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2553

  • DrJames
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It was a long day's travel. Neither the minister or her Chief of Staff attended. The people we met were nice but new to their jobs. The PBS guy had a total of 4 days under his belt.

In short hurry up and wait. We did get confirmation that this year is out and it won't be any sooner than 6 months. The PBS guy wanted all 5 listed. I suggested how about just one or two and play the players off against each other for price with a "we only need one solution, give us your best price and maybe we will give you our money" - this is what the Kiwis do and they have 8 x better medication pricing than we do.
YMMV
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2576

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James
sounds frustrating but typical. At lease you got to give some useful ideas to the PBS person. From my experience the Dept of Health need all the expertise they can get!

From your description it sounds like they were pretty deadpan and unhelpful.

Did they show
- a genuine interest or understanding of the effects of the disease? or
- just focus on the financial impact - from their point of view?

I was going to suggest targeting the minister for social services to raise the productivity implications of not treating, but I see it is that conservative Christian Porter bloke from WA.....
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2577

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Thanks for trying Dr. They don't care. Its a bonus if the old timers die cause it reduces budget expenditure on welfare and health. Face up to it, its an IV users virus. Who really gives a shite? The Greens support treatment for all but I don't hear their voice pitching for treatment NOW.
The only way forward is to get welfare groups actively involved. Persuade micro finance charities to provide interest free loans so cash strapped people can access generics. Let us own and provide "treatment for all" stance. Admittedly at a small price.This would be a very good starting point. I am convinced that positive momentum will follow. kindly
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2579

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"Let us own and provide "treatment for all" stance."
I agree Berrinice.I am not super wealthy,but I would not object to a small surcharge on each hep med purchase to help
someone who genuinely cannot afford it,and needs it.If I reach SVR I will certainly be willing to make a gratitude donation to a charity that supports this.
It doesnt matter how you got Hep C,not everyone got it from drug use,there is no heirachy of shame in this.The most costly, dangerous,socially traumatic and PBS money consuming drug in Australia is legal,and the second most treatment costly is also legal.
At least their stance in Canberra from Dr F's account does not appear to be anti generic.In fact if they are not rubbing their hands in glee
at the growing numbers paying for their own treatment they must be really stupid.
Thanks ,Dr F for giving up your time to wallow in the cesspit of beaurocracy.It must have been a frustrating experience.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2583

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Hi miko3 nobody has to make a donation to micro finance charities. They are set up specifically to give small interest free loans to low income earners. They also give low interest loans to low income earners. Currently interest free loans are for the purchase of predominately white goods, car repairs etc. A persuasive individual should be able to get them to fund generics. My thinking is -so you will provide a hepper with a new frig, air conditioner, washing machine etc. better still how about $1,500 or so to save their lives etc etc. The hep organisations could have run with the dr and greg, if they weren't so conservative this pathway to treatment could have been a real fireball by now. About the rest, predjudice is rife, the rest are just unfortunate collateral mishaps. The only people interested in a cure is those involved in someway, the is no collective outrage. I tried a petition via facebook in Nov 14 and I was shocked by the response from "lefties" from all sectors of society. Yep a junkies disease- no sympathy at all. kindly
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2584

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"A persuasive individual should be able to get them to fund generics."

Good luck with that one Berrinice.Will be delighted to hear that someone actually succeeds.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
Last Edit: 3 years 9 months ago by miko3. Reason: Grammatical errors
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2586

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I am hoping the good dr joe tosanco might be interested. he is anti corporation influences. just waiting for him to email me if he is interested. kindly
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Buyers Club Scheduled To Meet Key Decision Makers 3 years 9 months ago #2602

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Adding my thanks here for your tireless efforts Dr James, and 'kicking against the pricks' as the saying goes.

Seems like all the motions are being gone through at official levels, minus any meaningful conviction to effect change or trying to make a real difference. Your suggestion of following the Kiwi model to get some few meds successfully beaten down in price and approved so at least to get the ball rolling....well the fact that this fell on deaf ears when there are so many in urgent need is a bit of a damning indictment on the system as it exists at the moment. Thanks for going in to bat for common sense and the benefit of a socially maligned population. As you point out berrinice, we are all too easily written off in both the public and politicians minds.
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
Last Edit: 3 years 9 months ago by zhuk.
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