Forum Replies Created
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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.
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
I agree that the more information we can find out about how the PBS scheme is rolling out the better. Both from public clinic patients and those who went through their GPs. Also how easy it is to get the meds from suburban pharmacies. Here’s a link to the PBS thread.
http://fixhepc.com/forum/australian-pbs-listing/753-pbs-pricing-take-a-deep-breath.html
All this will help both to provide confidence that the system is working as intended/publicised. Also if members provide the general locality such as “S.E. Melb suburbs” in their comments about where they gained access it may allow others to enquire about more detailed info on which GPs and pharmacies to approach (maybe via PM as people could be uncomfortable with sharing that publicly?).
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
Hi Tom,
Is your script for Hepcvir or Hepcvir-L? Hepcvir on its own isn’t enough as it only contains Sofosbuvir. You require both Sofosbuvir (400mg) and Ledipasvir (90mg).
Now, I’m not a doctor (or a marketer as you will see
) but: Both Hepcvir-L and also Twinvir contain Sofosbuvir and Ledipasvir as the active ingredients in the same quantities so it shouldn’t make any difference from a treatment perspective. Things may have changed slightly but as far as I was aware the Redemption trials supply multiple brands as the aim of the trials is to prove a range of generics. I would assume that Monkmed as the coordinators of the trial would supply randomly by patient. However, they may take into consideration things like anticipated customs reaction to particular brands or country of origin depending on where the patient is located, so political reasons rather than medical.
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
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.
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
Hi Tom,
Please see below. Raised Bilirubin is common with HCV and usually drops with treatment. You appear be within the ‘normal’ range, if a bit high, pretreatment so not “really bad”.
It is normal to have some bilirubin in the blood. A normal level is:
Direct (also called conjugated) bilirubin: 0 to 0.3 mg/dL
Total bilirubin: 0.3 to 1.9 mg/dLhttps://www.nlm.nih.gov/medlineplus/ency/article/003479.htm
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
Tina, that’s fabulous news!!!
After three weeks of worry that deserves one of these.
Here’s to all your future SVRs being Undetected.
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
Vororo wrote:Hi Gaj,
My statement about a general perception that chinese products might be fake wasn’t aimed at anything you said (that’s why I put it in brackets). I remember when I was growing up, anything with a “Made in China” label was thought to be cheap and inferior. So that was a side thought aimed at myself just as much as anyone else.
I get where you are coming from now…..and Japan used to make those tiny transistor radios and miniature cameras that were clever but just toys huh?
Still, it does seem to me that a lot of people come on this forum with big doubts about whether generics are “the real deal” or whether they work as well as the branded product….
I think that also applies to most other generic medications. When pharmacists offer a choice, many people choose the more expensive brand name item because “the one the doctor prescribed must be better”.
So the point I was trying to make was that it seems fair to suppose that the people who work in those Chinese companies are trained and experienced chemists. And most probably they take pride in their skills, just like any other professional. Why would they be making anything other than the real deal?
Yes, hands up anyone who owns an iDevice or any one of thousands of ‘quality’ consumer items which are manufactured there to take advantage of both comparative costs and a skilled and well trained labour force.
Me, I have a degree in chemistry and I spent many hours in the lab mixing reagents and purifying the product… I hated it. But the idea that a professional chemist can make 99.9% pure product once he knows the target formula doesn’t surprise me at all. And once an NMR spectrum is available for a reference molecule, its pretty easy for a professional chemist to verify that he has made the real deal. So yeah, I stand by my original statement – until there is evidence to the contrary, its reasonable to suppose that the chinese products are the genuine article.
I will grant you that in most cases. My point being that with such a high demand for these medications and the difficulties in getting a clear view across the border of ‘who is who’ in the Chinese arena, it is advisable to exercise caution until verification can occur. In much the same way as 3,6-diacetyl morphine is largely harmless to the human body when correctly manufactured, you probably don’t want some knocked up by someone with a fail in first year chemistry in their back shed
Cheers,
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
Dr Freeman will need to answer your question about SVR4 but…..
Type # woohoo! but without the space and don’t forget the !
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
So unless there is evidence to the contrary, I would suppose that the chinese products are the genuine article (minus the Gilead brand name, of course).
I would suggest that is a big supposition to be making, lack of evidence to the contrary does not prove the fact.
[Why is it that people in the west have the idea that china produces fake products? Is this just more subtle brain-washing from Big Pharma?]
I can’t see where that fits in relation to my comments. I didn’t make any statements or allusions to fake products. I did note that having too many competitors can sometimes have detrimental impacts. That is applicable in any manufacturing field, in any country, under any economic system.
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
Hi Debs,
Testing only at 12 weeks after EOT seems to be becoming the defacto standard these days unless you as an individual will get peace of mind by checking at 4 weeks after as well and can convince your consultant/nurse to support that or get it done privately.
But I think you are on the Redemption trials? If so then you should check with FixHepC/Monkmed as they may want extra data above the bare necessities.
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
Hello jay kim and welcome,
I see from reading that there are mostly 1b & 2a genotypes in Korea? I look forward to hearing of your community and treatment process over there.
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
Hi beaches,
I suspect that very few if any pharmacies will carry these in stock given the label pricing. They will likely order in on presentation of a script. You may need to check around your area to see which chemists are prepared to do that. Likewise those who are wanting to fill repeat scripts should probably present them to the pharmacy a few days to a week prior to running out of the previous one to ensure continuity of treatment.
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
Congratulations Debs! Definitely worth a celebratory dinner.
Is your planned 16 week test for SVR4 or are you treating for longer than 12 weeks?
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
As you say, free trade and markets will drive this. Particularly with something like these new DAAs for which there is massive demand and a very profitable manufacture to sale ratio.
The questions are;
– Can the manufacturer accurately recreate an analogue of the original chemical?
– Can they do so for all production batches?
– How robust is their supply chain?In the case of Mesochem that you mention, answers to all of the above have been proven over the last 12 months or so. They are a tried and tested supplier.
It appears there is now some more competition which is good for HCV sufferers worldwide as long as it doesn’t drive market prices down to the stage where quality of product and integrity of supply are compromised.
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
Hi Vororo,
I’ve moved this post to the Media and News area for now. It is certainly news but I’m a little worried that some new members and guests could misinterpret the links as ‘reliable’ generics if left where it was.
Gaj
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
