Forum Replies Created
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Hi klhilde,
Agree with you regarding the need to discuss how we define or at least discuss “fake” drugs and the impacts of that for both this site and others seeking sources of supply for treatment.
In the case of the Mesochem branded product you refer to, I would call it as fake regardless of whether it contains Daclatasvir or not.
My point here being that whether the perpetrators have the best intentions in the world or not, by copying the manufacture’s labelling/logos they are misrepresenting or misleading their customers and doing it intentionally. And there are far better ways to assure customers of supply chain integrity such as those modelled by the Fixhepc buyers club.
Why does it matter?
Well, I would assume Rachel will be following this up with other groups that her company has supplied. Hopefully she puts a satisfactory stop to it. Failure to succeed at this and/or ongoing incidents would have the potential to impact who her company is prepared to supply as they will wish to protect their name as a trusted supplier to the large players in the field. And this could mean additional middle men, higher costs and probably considerably reduced access to everyone.
Rachel’s request that Dr James not post pictures of the offending item is also correct in my view as it starves the net of opportunities for confusion of customers or outright fraud by scammers.
Which brings me to how we handle the issue of supply chain integrity and “fake” drugs on this site which I will do in more general terms below:
While in some ways the site could be seen as a support vehicle for the buyers club and its members, the reality is that as a site for hepers with uncensored input, links and a language translator we have a vast and growing international audience who can and will use us to access treatment either via the club if they meet the legal requirements or via links and contacts that we can and do provide. Some of this access and sourcing may come via unorthodox means as you say so we need to be mindful of the following:
Not all of these members/guests will have strong English language skills and some could easily be misled by posts, pictures or links on here that they may believe to be genuine just because of being on this site. For this reason I suggest that we all need to be very clear in our posts that the information we are posting/commenting on/linking to/etc. is not approved and verified by the site as having supply chain integrity unless we are absolutely certain that this is the case. So yes, as you say, it is all about supply chain integrity and I think we need to keep restating this for the benefit of new participants rather than assuming they will “get it” immediately.
Perhaps to assist with this process the mods and founders may like to have a discussion re setting up a locked “verified & approved” section placed prominently in the index section of the forum with appropriate warnings that anything outside this area needs to be viewed as “unsupported”?
Regardless of this and even if the above is implemented, please everyone, give your posts some thought as to whether they could be mistaken for an endorsement of something whether by a newcomer or someone who’s first language isn’t English. (Yes, I know we have a language translator, and like all of them……..it’s rubbish for real meaning!)
Hope this helps and look forward to hearing others thoughts.
G
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
notGT3 I would like to say “Thank you Sabrecat, for expressing so well what I am sure many here have felt about waiting.”(Turns out I was gt3, just deaf when my specialist told 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
Hi Chejai,
Yes, my experience is the same as Mike’s, only once a night now.
And at the risk of adding too much information, my pee has been quite dark for a long time no matter how much water I drank but I noticed last Sunday after 4 days treatment that it was much lighter and it has remained so all this week.
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
……”…………………
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 klhilde,
Thanks for adding the additional information.
You are correct, it is important to understand why Gilead went down this licensing path to maintain some control when they realised that their patents wouldn’t be granted in India and that inclusion of a country in the list doesn’t necessarily mean that country has access.
It is also interesting to note the comment in one of the articles about the inclusion of tiny micro-nations to make the list look bigger than it really is in terms of coverage.G
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 2b,
I suspect the list you are looking at covers a couple of different things:
First is a list of about a dozen (Indian) companies that are licensed to manufacture Sofosbuvir containing products by Gilead. Then there will be a list of about 100 countries where these dozen or so manufacturers are allowed to sell their products. There are also “in country” licences issued to manufacturers in Egypt and Pakistan which as I understand only allow those companies to manufacture and sell in their own country.
So Vietnam, Cuba, etc don’t have licenses to manufacture. They are just the countries where the license holders can sell their products.
Hope this helps.
G
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 Chejai,
If you haven’t already, can I suggest you contact your GPs surgery today and give them the Specialists private practice contact details in case it hasn’t been passed on. Preferably phone then tell them you will email through as well. (That way it doesn’t end up on a post-it note on their fridge door) then take a printout of the email with you on Monday in case they haven’t transferred it to your file in time.
And the correct name is GP2U. It will cost you a bit more than a normal GP but not anything like specialist costs.
G
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 Cindi,
As the others said, the refusal to provide advice seems to be standard practice. My hepatologist wouldn’t either but was prepared to tell me what treatment he would prescribe if/when it was available on PBS and what my prognosis was in the meantime. He was happy to write me a script and monitor based on my informed decision……sigh, and so we dance the dance!
It must be so difficult to explain these sort of subtleties to someone like your friend. Perhaps Dr James has the right type of paper and glue to help per his comments above?
G
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 Cindi,
Would that be Minomycin (for acne, etc)? Oops, zhuk beat me to it.
Also may be listed on pack as Minocycline Hydrochloride.
G
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 Bloot,
See below link. Post three where Dr James seems to be saying that you need a minimum of 60 days with Riba for full effect.
http://fixhepc.com/forum/questions-and-answers/300-to-riba-or-not-to-riba.html
I know my specialist wants me on it for as long as possible because my liver is definitely work hardened.
inch: G
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 Browny,
8th day of Sof/Dac. I actually seem to feel a bit more focused that before and I seem to have a spring in my step for the first time in years. No real sides that I can determine at the moment. I’m sleeping 6-7 hours with one or two wakes through the night but easily drifting off again and waking refreshed in the morning.
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
One thing that may help people searching the net for data about Gilead, or pretty much anything else is a “Site” search in case you are not aware how to use them.
Not very sophisticated but is useful where you know a site name and suspect there may be useful info that you want to find. Especially useful for forums where the search engine is rubbish, as many are
or the site only allows members to search
So open your favourite search engine and type in:
Hope that helps.
G
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
Thank you Vororo, your posts here have been very well put.
I suspect that multinational companies such as Gilead are outside the control or influence of any individual or national government, however I do know that they are adverse to bad publicity especially when it is ongoing and from multiple directions. Probably not because of any moral embarrassment but because it tends to undermine investor confidence.
There is a lot of injustice in the world but this site is about helping people with Hep C. There are at least 150 million world wide with this virus of whom at least half a million per year die from its effects. There is currently one drug that (when used with others) offers promise to all those people and this drug is Sofosbuvir. This drug and its pricing is largely under the control of Gilead who have chosen to take the low road of maximum profit (obscenely so) ahead of the health, wellbeing and lifespan of those with the virus.So, yeah, I’m happy to contribute to anything that can embarrass Gilead into reviewing their policy on pricing of Sofosbuvir. Change has to start somewhere and initial focus in one area is a proven method to success.
G
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 Joan,
Thank you for sharing a little of how you are currently feeling.
As you say, we are all different and I’m sure that applies to emotional as well as physical side effects of treatment. Many of us here have lived with this virus for decades and I believe that over time our bodies and minds have reached an accomodation with it. Certainly not a beneficial one for us but a necessary one to allow us to survive and function at whatever level we are capable.
Now that we have these drugs and they are stripping the virus from our bodies, it is not unreasonable to expect that our bodies will need some time to adjust to no longer having to defend themselves 24/7 and switch to the process of healing all the physical damage done over the years. In the same way, our minds will take time to adjust but the mind is complex and while we may be consciously happy and glad of a cure, at a subconscious level there may be doubts and maybe even some feelings of “loss” that we will come to terms with as our treatment progresses. This is natural and to be expected and part of the healing process and we will all experience it in our own ways but sharing it here can assist the process and also help others.
G
PS I also avoided a social contact on the weekend that I knew would require (well meaning) detailed discussions about my treatment that I just didn’t feel capable of participating in right now. But that time will come.
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
Great news to hear Jill. A wonderful set of figures.
G
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
