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TOPIC: Prof Ed Gane on Nine to Noon NZ

Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9839

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Here are some comments by Prof Ed Gane broadcast on National Radio today. After publicly congratulating Dr Freeman for the way he set up Fix Hep C/Buyers Club, including consulting experts, he said the following:

``There’s a lot of concern about drugs that are coming out of Bangladesh at the moment and out of China because these are not produced under any licensing agreement, they are pure generic drugs and therefore there is no guarantee that these drugs will be authentic.
They could be fake, they could be diluted so not as effective, they could be contaminated or they could be the right chemical, and I guess this is an issue with one of the drugs being used to treat Hep C at the moment. The common combination to treat Hep C is what we call a nuke (Sof) in combination with another drug (NS5A inhibitor).
Now the nukes are very easy to make and are very robust, then if we test the nuke and its there then it is very likely to be active.
The NS5A, certainly some of them, are very difficult to make, so you might have the right chemical, and it might test as the right chemical, but to actually make that chemical into an active, crystalline form, which will be active against the virus in the body, you do need to have very sophisticated factories to make those, that certainly pertains to one of the NS5A’s, Ledipasvir.
The proof of the pudding is in what James is doing, he is following up patients he is treating. I think we need to see not only what happens in treatment, because if you are on 2 drugs, only 1 of which is authentic, the patients will still become clear of the virus during treatment, but the problem is once the treatment has finished, because the second drug wasn’t authentic, then those patients will relapse, which means that the virus although you can’t find it in the blood at the end of treatment, it bounces back and becomes positive after treatment has finished. So I think following up the patients who have been treated, it’s early days yet….
Most of the patients who have been treated with the combination of the NS5A and the nuke, through the FixHepC Buyers Club are not that far out after treatment, so James is getting those results. I think that is going to be very helpful to tell us whether the combination was authentic or not.

(Prof Gane speaks near the end of the sound file at www.radionz.co.nz/national/programmes/ni...tis-c-buyers%27-club )
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9844

Thanks for reporting the interview.
I listened to it and was intending to. Now I don't have to.
The NZ Hepatitis Foundation has posted similar stuff on it's website recently:
www.hepatitisfoundation.org.nz/index.php...ndation-new-zealand/
I am curious about the concern raised about non-licensed Harvoni equivalents which many of us are taking.
Is this Gilead friendly fear-mongering or is there any real evidence?
In an email to me from Monkmed a possibly related concern was raised:
"Twinvir is not licensed and lot of people reporting side effects. We only ship GILEAD licensed products like HepcVir L and Hepcinat LP"
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal range
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9845

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I thought this interview was a much stronger endorsement of Redemption/ Buyers Club meds as being absolutely reliable than the position statement. Prof Gane said that he congratulated Dr Freeman on the system and testing/ follow up. Both he and Dr Freeman made it clear as medical professionals their main concern was supply chain integrity, and that is what was being highlighted as well as efficacy.
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9846

That's worrying.......will make the next 12 weeks' wait (post treatment) a bit more stressful :(
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9848

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I kind of feel the same Lynne.
:unsure:
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9852

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I really wouldn't worry at all about Prof Gane's comments if you went through Buyers Club. He was making a strong case for people not shopping themselves on the internet and the sort of dangers that could come up. It is just a responsible warning. In the context of everything else he said, it was showing the difference between that kind of online medication purchase and the secure supply through Redemption and Buyers Club. The first part of the interview was Dr James and he addressed the same issues. SVR12 here is as secure as a govt purchased trial or treatment.
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9855

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Well I am not a chemist but I hear Prof Gane's comments as scepticism of the `authenticity' of Buyers Club Ledipasvir, in particular, which is known to be harder to make than Daclatasvir.
i like that he has been so direct about it, so that once the cures are sustained he might need to correct himself. On the other hand, the Chinese Ledipasvir I consumed was not 100 per cent identical to Gilead Ledipasvir, Dr Freeman told me.
We will see,and with so many choices now, I would not see a relapse as a particularly big deal.
Actually, I wish someone would just shoot down Prof Gane's science.
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9856

Chinese Ledipasvir is part of my treatment.....I really don't know what to make of all of this....wish I hadn't of read it to be honest. To relapse would be devastating. :(
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9857

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Hi Lynne, from what I can make out, he is not stating this as fact, but something they are interested in seeing the results for.
I personally suspect the licenced meds could maybe be a little less harsh on the side effects but it may well be the very small % of filler rather than the active ingredients.

Please do not get anxious, remember Dr F did have these meds tested for active ingredients and getting anxious will not help your health (hard I know) -Just look after yourself the very best you can by way of diet, rest and gentle exercise.
#love
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9858

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Hi Chapel,

Chapel wrote:
On the other hand, the Chinese Ledipasvir I consumed was not 100 per cent identical to Gilead Ledipasvir, Dr Freeman told me.

I can't find the relevant post (maybe you can?) but from memory Dr Freeman noted that Gilead had in fact used a slightly different form of Ledipasvir (#NOTE: my error, the differing DAA was Sofosbuvir per Chapel's post below) in their production Harvoni to what they had trialled and the Mesochem product was the same as was used during their approval trials.

But really, the quote from Ed is a few sentences of caution in a 10 min or so chat and is mostly directed at "They could be fake, they could be diluted so not as effective, they could be contaminated......." so talking about sourcing outside of reliable supply chain. He also comments on the non licensed generics but very generally (without pointing fingers other than at countries that didn't accept the patents) as I would expect someone who works in the field of clinical trials researcher with a number of patent holding pharma companies to do. There is nothing untoward in this nor any implications against him in my mentioning it. It is simply a fact of research/commercial reality if we want wonderful new drugs like these DAAs developed and trialled. I find his caution in that regard entirely understandable, he can be confident in the efficacy of patent drugs for his patients.
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 8 months ago by Gaj.
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9871

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Lynne-Francis-facebook wrote:
Chinese Ledipasvir is part of my treatment.....I really don't know what to make of all of this....wish I hadn't of read it to be honest. To relapse would be devastating. :(

I do know what you mean Lynne. Every time somebody talks like this it gives me a stab of panic too. Irrational I know, but there it is. I then spend the next several minutes rationalising my way out of it. I know that any doubts about the authenticity of the meds do have to be expressed and people do have to understand the implications. Doesn't stop me wanting to wring the necks of those doing it.

The one comfort I truly have is that how we feel about the meds is no indication of whether they will work or not. When I did a trial some years ago It was my first go-round of tx and I was naively convinced that the meds would work. I couldn't have been more shocked to learn that I had had a viral breakthrough after only 2 weeks. It completely upset my whole view of the universe. So even if we do worry and panic about all the theorizing of possibilities and unfounded aspersions cast, once we have got on the bus none of that will make any difference to the final destination.

dt
Last Edit: 5 years 8 months ago by dointime.
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9918

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Hi Gaj, no it was Sofosbuvir which had the approval anomaly:

fixhepc.com/forum/end-of-treatment-eot/3...r.html?start=12#2775
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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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #9922

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Chapel wrote:
Hi Gaj, no it was Sofosbuvir which had the approval anomaly:

fixhepc.com/forum/end-of-treatment-eot/3...r.html?start=12#2775

Thanks Chapel, I have modified my post to reflect that.
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 8 months ago by Gaj.
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #10008

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Look,its natural we all faced anxiety when we started as we finish we also face the
same anxieties when we read someone in the business ,we think. Hmm.

I am 100% confident, everyone who has reached UD will go ahead and be UD at SVR therefore
cured I include myself in that.

I actually think this particular DR if he had such great concern run should have Run a Trial of generics instead
of making a bunch of folk worry!

Oh,hang on there is a Dr doing a Trial its James Freeman ,I think the stats will speak for themselves along
with all of us becoming cured from generics.

Ps. I don't think the sob would sustain so many people to be UD unless the Led was also
working the research suggests Sob on its own has it down to the 60/70 % for G 1 I would
think quite a few showed 12 at best then failed outright after treatment.

Lynn, I am confident you're on track and will be fine.
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: 5 years 8 months ago by Sirchinenge.
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Prof Ed Gane on Nine to Noon NZ 5 years 8 months ago #10011

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Company Man spouting the Company Line. He is betting on both teams. No matter who wins, he doesn't lose.
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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