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TOPIC: Radio National

Radio National 6 years 1 month ago #1571

  • Archer
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Was just speaking with Radio National Michael McKenzie about some of the "hidden" issues around Hep C. As most of you probably know He interviewed Helen Tyrrel and John Freeman about the Buyers Club and Hep C situation today. I rang to ask whether it would be available for those who may still wish to hear it. Apparently daily features are preserved - The link is being put up now on Radio Nationals RN website under Todays programs...it will remain there for listeners to access .......... Archer
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
Last Edit: 6 years 1 month ago by Archer. Reason: correction
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Radio National 6 years 1 month ago #1573

Gen 3a Started Sof Dac 16/10/15
V/L 20 Mill +
Hep C pos approx. 27 yrs

Non responder 2011 BMS (dac) Peg Rib
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Radio National 6 years 1 month ago #1600

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Same old, same old. The government will introduce treatment gradually. They can't sit back any longer. I think Greg and the Dr have generated the necessary impetus for something to happen soon. Thanks guy's. kindly
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Radio National 6 years 1 month ago #1603

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Almost exactly the same situation as in the UK - although NICE have recently approved the treatments for some patients, not all. Unfortunately, while the headlines look good, the reality is, they have 3 months to implement it and there are severe waiting lists and as the current Gvt are conveniently devolving health authorities to their own devices, there are many hospitals that just don't have the funds to provide the treatments. In other words, just because they are 'approved' - it doesn't mean patients will get access to them and it will be a post-code lottery.

Excellent interview with Mr Freeman senior, maybe someone in England could listen and learn.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Radio National 6 years 1 month ago #1604

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LondonGirl wrote:
Almost exactly the same situation as in the UK - although NICE have recently approved the treatments for some patients, not all. Unfortunately, while the headlines look good, the reality is, they have 3 months to implement it and there are severe waiting lists and as the current Gvt are conveniently devolving health authorities to their own devices, there are many hospitals that just don't have the funds to provide the treatments. In other words, just because they are 'approved' - it doesn't mean patients will get access to them and it will be a post-code lottery.

Excellent interview with Mr Freeman senior, maybe someone in England could listen and learn.

Hi & thanks for the radio interview, totally agree there with you LG, almost an exact situation here in the UK. :angry:
I believe NICE aims to have the final tx recommendation next week (?), but if the prices are not cheaper it will not work.
Even if they only treated the HCV & ignore all other diseases in the UK, still there won't be enough money to pay for everyone's HCV treatment at the insane prices such as they are :angry: so it's not going to happen.
My own hospital which is one of the largest teaching hospital in the country has bankrupted 2 months ago, 2 top directors have resigned & there is no money left. :( The hospital is now borrowing in an excess of £2 millions pounds per day to survive!
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 6 years 1 month ago by Jolie.
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Radio National 6 years 1 month ago #1612

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Just listened to the podcast Thx Archer and Sir Paul. Score Dr John Freeman 10 -Helen Tyrrell nil.What hypocritical rubbish she came out with.The" wait-wait we will provide" has been going forever.In my own case I spoke to my GP a year ago about accessing tx from India.My fibroscan reading was 5."Wait" he said.I was actually going to Sri Lanka where sof was available at the time,and could have easily accessed it.2 mths ago I saw my GP again."Wait" he said.By this time my fibroscan reading was 14,By lucky chance i had discovered the Greg Jeffreys blogsite,and insisted he write out some scripts..Within 3 wks I had the sof from India and the Dac from Mesochem.I am now 3wks into tx and have never felt better,What would the result have been if I had continued to wait?.Helen Tyrrell should be grateful that I have saved the PBS a heap of money as have all the others who have done the same.Why could she not have just come out and said "If you can afford $2000 then I endorse your effort" .In fact, an unlikely, but sensible solution would be for the PBS to subsidise people who cant't afford the $2000 odd dollars while the Govt arm wrestles with Big Pharma over the price.
A concern is. that if the Govt makes a deal with Big Pharma ,it will only be a partial solution and it will include a caveat that all efforts must be made to close down groups such as the Fx buyers club.
If you haven't already,get your meds now,even it means using your credit card.Its a tiny price compared with your life.
Don't trust the Govt bureaucracy and the likes of HelenTyrell.
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: 6 years 1 month ago by miko3. Reason: Grammatical errors
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Radio National 6 years 1 month ago #1613

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Or your doctor miko3. I had a doctor who thought my fiibroscan of 18 was nothing. I changed doctors.
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Radio National 6 years 1 month ago #1622

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Oh man, Helen Tyrell lives in a richly embellished fantasy world.

Wish Mackenzie had asked her if Hepatitis Australia receives any sponsorship from Gilead or other Big Pharma.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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Radio National 6 years 1 month ago #1626

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Yes, also like UK with HepC Trust.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Radio National 6 years 1 month ago #2073

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Just catching up a bit late on some of the forum threads; this was a great interview by Dr Freeman, a breath of fresh air compared to the seemingly wilful mass self-delusion perpetuated by those in the Hep C 'industry' like Helen Tyrell. When I started yelling at the computer is when I realised this is why I've stopped watching the news on TV :pinch:

She really refused to address the fact that its simply not affordable to treat everyone...or even a fraction of everyone. The same illogical mantra being peddlled to keep those afflicted thinking there is some publicly-funded hope..do they think there would be rioting in the streets if we were told the truth? I wonder. She is indeed living in a fantasy world if she thinks Gilead will drop their pricing so catastrophically...not with a $5 bil profit over the last quarter 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
Last Edit: 6 years 1 month ago by zhuk.
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Radio National 6 years 1 month ago #2088

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Yeah, AHCS support forum supported her delicate and diplomatic handling of the Docs attack. So I went on a rampage for a couple of days until Hep Queensland did they big turn around. Hopefully the other states will follow, and stuff old Helen's stupid stance.
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Radio National 6 years 1 month ago #2092

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Hepatitis Australia definitely do receive money from Pharma.

In the Hepatitis Australia Annual Report 2013/14

static1.squarespace.com/static/50ff0804e...ort_2013-2014sml.pdf

If you scroll down to page 42 to the "2 Revenue and other income" you will see in 2014

Government Grants: 884,687
Sponsorship 203,046

And on page 48 it looks like Helen got paid $153,248 in the 2014 year.

And page 53 rather seals the case where the sponsors are listed as being:

  • Abbvie
  • BMS
  • Gilead
  • Janssen
  • MSD
  • Roche
YMMV
Last Edit: 6 years 1 month ago by DrJames.
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Radio National 6 years 1 month ago #2098

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^ *crickets*

Who is really surprised?

Thank you unearthing that info, Dr Freeman.
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: 6 years 1 month ago by zhuk.
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Radio National 6 years 1 month ago #2107

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It is so so obvious without knowledge of their financials, that something smelt with old Helen's stand. This information confirms it.
The Dog.
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Radio National 6 years 1 month ago #2116

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Does anyone know if Helen Tyrell has the most essential qualification above all others for her job:
Actual personal experience of contracting and undergoing tx for hep C?
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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