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TOPIC: Otago Daily times New Zealand

Otago Daily times New Zealand 5 years 10 months ago #6225

From todays ODT ..NB when you click on the link use the magnifying glass icon to read. Story about a treatment buddy spreading the good word about generics. Comment also from the Minister of Health Jonathan Coleman and Head of Pharmac,Steffan Crauasaz. Great to see the mention of Fix Hep C, James Freeman and Greg Jefferys. Hazel is an amazing woman from my home town and I'm so blessed to share this journey with her.

digital.odt.co.nz/Repository/getimage.dl.../16/Img/Pg016_57.png
SVR 24
Last Edit: 5 years 10 months ago by Tina-Hill-facebook.
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Otago Daily times New Zealand 5 years 10 months ago #6227

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Hi Tina,

Great to see generics, fixhepc, Dr. James Freeman and Greg Jefferys getting publicity in New Zealand media.
Kudos to Hazel for going public with her story.
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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Otago Daily times New Zealand 5 years 10 months ago #6229

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Great story, hope it encourages and gives heart to our Kiwi hep cousins to seek help :) Definite kudos to Hazel for having the courage to get it out there.

When there was a suggestion put on the forum that Harvoni would become available in NZ from Feb at the cost of "about $125 per week", I wrote to the NZ Ministry of Health, who put me onto PHARMAC. Just received their reply:


Dear XXXX



Thank you for your email about funding for ledipasvir with sofosbuvir (Harvoni).



PHARMAC received a funding application for ledipasvir with sofosbuvir (Harvoni) in February 2015. The first step in assessing the funding of a new medicine is for the application to be reviewed by the Pharmacology and Therapeutics Advisory Committee (PTAC), our clinical advisory committee. PTAC also has multiple Subcommittees, including one that provides specialist advice on Anti-Infective treatments. These committees provide us with expert, objective advice on medicine funding opportunities.



Harvoni was discussed by PTAC at their meeting in May. The minutes from this meeting can be found here: www.pharmac.health.nz/assets/ptac-minutes-2015-05.pdf



It is important to note that PTAC does not make funding decisions. PTAC provides clinical advice to PHARMAC. Additionally, a positive recommendation from PTAC and/or its Subcommittee does not guarantee the medicine will be funded. It is just the first step in the process. PHARMAC must then assess a number of other factors. This will include economic and commercial considerations as well as the clinical advice we received from PTAC and the Subcommittee. Further details on the process that PHARMAC uses to make funding decisions can be found on our website here: www.pharmac.health.nz/assets/factsheet-0...unding-decisions.pdf.



You can follow the progress of this funding application using our online Application Tracker:

www.pharmac.govt.nz/patients/ApplicationTracker?ProposalId=1344

www.pharmac.govt.nz/patients/ApplicationTracker?ProposalId=1340



You will see on the Application Tracker, that these funding applications have been ‘ranked’. This means they have been ranked against all other funding applications currently under consideration. We regularly reassess the relative ranking of medicine funding applications which means the ranking can change over time.



Unfortunately, we are unable to provide a definitive timeframe for if or when a funding decision will be made for these medicines. This is because there are a number of factors that can affect the relative ranking and funding timeframe for a medicine. These include the success of commercial negotiations with the supplier (including changes in price of the medication), new clinical data and/or the other funding applications being considered at the same time. Further information on how PHARMAC works can be found on our website here: www.pharmac.health.nz/about/your-guide-to-pharmac/



We are unable to advise how much Harvoni would cost to purchase privately as it may vary between pharmacies. We recommend comparing prices between several pharmacies if possible.



I hope this information is helpful. Please feel free to contact us again if you have any further questions.



Kind regards

Lauren Grierson

PHARMAC
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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Otago Daily times New Zealand 5 years 10 months ago #6232

Hazel got a call from Pharmac when I was at her house, she was told that as a F3 for 17 years & cirrhotic that she is not a priority for treatment at this stage. I especially like the dodge from our Minister of Health dodging the question and passing it back to Pharmac. From these responses one is left to assume that New Zealand is a long way off from introducing DAA's for 50000 kiwis living with HCV. All the more reason why this story of Hazel is awesome as it tells of the generic alternatives and how to go about getting them. As for the Hepatitis foundation of New Zealand I liken it to a ship without a sail, a voiceless entity that goes on about these miracle cures BUT they are out of reach, much like dangling a carrot in front of a donkey. I hope that heaps of Kiwis read Hazels story and take matters into their own hands.
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Otago Daily times New Zealand 5 years 10 months ago #6233

Yep kudos to Hazel alright!

And rest assured there is more to come, we're only just getting warmed up :evil:
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Otago Daily times New Zealand 5 years 10 months ago #6234

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"Not a priority for treatment"

Hell, how much further can you go? She was obviously a candidate for the transplant list :pinch:


The more Kiwis who learn about generic alternatives, the better.
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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Otago Daily times New Zealand 5 years 10 months ago #6236

Yes, she is not far off from needing a liver tx, that's until she found Greg & James! Hazel after 4 weeks of treatment is just off undetected
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Otago Daily times New Zealand 5 years 10 months ago #6240

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What a result...she's been given her life back. Don't think miracle is too strong a word heh.
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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Otago Daily times New Zealand 5 years 10 months ago #6241

Yes a miracle indeed Zhuk.
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Otago Daily times New Zealand 5 years 10 months ago #6250

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Great story about Hazel and good on her for letting the newspaper tell it. Reporter gets full marks for accuracy too, as far as I can see. All those kiwi fence sitters need to learn from Hazel's example.
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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Otago Daily times New Zealand 5 years 10 months ago #6251

I sure hope lots of Kiwi's read this thread and or see Hazels story
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Otago Daily times New Zealand 5 years 9 months ago #6373

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My respects to Hazel; what a fine person. I wish her SVR, recovery of her health and ongoing success with her studies. Such responsible & compassionate citizenship is needed in the profession to which she aspires. regards 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.
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Otago Daily times New Zealand 5 years 9 months ago #7579

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Update to this, I wrote a letter to the editor just after the article to try get more publicity- unfortunately I was crook at the time, and they have edited out bits I wanted in like fix hepc website and Greg, but left my ribavirin rambling in without the ending. never mind, hepatitis headline might attract someones attn- and after Tina Hill's powerful interview today with the NZ Hepatitis Foundation, the interviewer has posted the link to my story on their page. This is nebulous Govt support. Have attached my letter from today's paper- hope it is readable
Attachments:
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Otago Daily times New Zealand 5 years 9 months ago #7587

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Hi Hazel, good to have you on the forum.

I applaud your courage in 'coming out' and your expertise with the pen - you make a good case for both compassion and generics in your letter to the ed.

Thanks for (hopefully) waking up NZ. May it lead to lots of hepsters healing.

And may the NZ government negotiate an even better deal with Gilead than the Australian government did. SOON!
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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Otago Daily times New Zealand 5 years 9 months ago #7589

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Thanks Joy, I'm really hoping NZ do no deal at all with Gilead, and get generics. They deserve not one more cent. NZ has the ability, at the moment, to bargain for generics and often does- many of our medicines, for example generic thyroxine, is up to 10x cheaper for us than in Australia and US. We are all being fleeced all the time by these inhuman practices of big pharma.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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