Forum Replies Created
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Congratulations to Kim and David on a great article.
And good to see there are also consultants in the UK prepared to go public about monitoring 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
#rant =
Enjoy
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 pat1, fantastic news! So glad to hear this.
It’s time to let the sun shine on you
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
Wow, the mermaid with the impossible ALT now has SVR8 as well!!!
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
Welcome shinel,
A bit of extra information such as which country you reside in and your liver fibrosis level would assist us when responding to any questions.
Your main symptoms are not all that unusual for people receiving ribavirin during treatment. As riba can cause anaemia in some patients your haemoglobin levels should be monitored at least for the first few weeks to ensure that is not occurring. I don’t know about the yellow stools but if you can’t get into the liver clinic you should consider checking with your normal doctor and also get your haemoglobin checked if it hasn’t been already.
We all seem to respond to treatment a little differently but there are many caring people here sharing their experiences so please don’t feel you’re alone.
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
To put that price in some perspective, Brazil is estimated to have 2 million people with HCV. Which means that treating all of them would cost $12.8 billion against an annual primary health care budget of $3.5 billion.
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 Thurl,
Vororo is correct in that it will only be those with an Australian IP address who will be geoblocked, so mostly applicable to Aussies who would be the only ones seeing a redirection to an alternative forum that can provide them with support and answers to their questions. This has been brought about due to a combination of strict Australian prescription drug laws and Dr Freeman being an Australian resident doctor to whom those laws apply.
So someone like yourself in the UK (or any other country) won’t be affected by this action and will still have full access to FixHepC without needing to either understand the technical means or google ‘how to avoid geoblocking’.
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,
Regarding Mexico and bus trips, please see comments in this thread about the availability of Harvoni there.
Mexicobound also states that it is unavailable there and that he had his medication shipped via Alaska to Texas and then onforwarded to Mexico from there. Note that he purchased the raw materials used in Harvoni and is putting them in capsules himself. I’m not sure how he got the FDA to release it but it sounds like there is some sort of fairly standard procedure involved so hopefully he or someone else will see this and let you know how to do that.
http://fixhepc.com/forum/daa-access/471-mesochem-apis-of-sof-dac-led.html#16408
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
Hmmm, the Soul of Healing name came up around here recently as you can see from this link. Investigation of their website did raise a few concerns. http://fixhepc.com/forum/distributor-s-market/525-so-who-are-the-reliable-indian-suppliers.html?start=15#15777
There is a lot to take in and you need to be confident before making any decisions so I would recommend you have a look around this site and read as much as possible while waiting for the results of the appeal. For FixHepC’s thoughts on selecting reliable suppliers of generic medications the following link about Supply Chain Integrity is probably a good place to start.
http://fixhepc.com/getting-treated/supply-chain-integrity.html
The following includes a list of sources we have reason to trust although there are probably others that are reliable and members here may be able to comment on those if asked.
http://fixhepc.com/forum/daa-access/457-warning-to-online-buyers.html
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
Paul-Jarman-facebook wrote:On a more serious note Dr Freeman has created a wonderful resource to assist with treating Hep C and to aid in the procurement of safe and reliable meds to treat this virus for people worldwide. Given that Aussies now have access to PBS meds it’s only logical that Fixhepc has become more relevant to overseas sufferers. The ball is in and has for some time been in the court of our overseas members I guess when it comes to furthering the cause that the Doc has started.
Cheers
Paul, thank you for an excellent summary of the situation.
EVERYBODY, as Dr James’ link in the opening post of this thread points out:
Fixhepc.com itself has been transferred to Myanmar
So for those outside of Australia, effectively nothing changes as long as you keep supporting, developing and expanding it. FixHepC will continue its important role of providing information and support to HCV patients and their supporters worldwide.
It is true that from 15th June 2016 Australians won’t be able to access it from Australian IP addresses. This is not an ideal situation but necessary to retain the information already available while ensuring that the original founders of the site are not open to legal liability.
Yes, we should and will protest but please don’t doubt that we will continue the main purpose of the site which is the support of HCV patients and spread of information regarding affordable HCV treatments worldwide.
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 Ms Joe,
With 9 weeks available you have plenty of time and these days shouldn’t need an overseas trip to access medication. Currently Indian manufactured Harvoni is still available (as Paul points out, other verified variants can also be used with confidence) and the Australian situation won’t effect the international FixhepC website which you are already accessing.
If I was in your position, first I would see how the appeal goes next week as that is your easiest option. If that was unsuccessful I would write an email to help@fixhepc.com explaining Mr Joe’s situation and enquiring about whether the Redemption-3 eTrial http://fixhepc.com/home/redemption-etrials.html was suitable and if not then what other options could be suggested.
Obviously if your Hepatologist was prepared to write a script that would be the easiest approach but I think you will be able to get a second opinion in the US or elsewhere if necessary.
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 GF,
I’m not an expert but reading the TGA letter, they seem to be discussing the provision of information (which they apparently deem advertising) on the website rather than a direct doctor/patient relationship and any advice and prescribing that may occur during a consultation. So I wouldn’t think that doctor/patient relationships would change.
As you say the site can and will be hosted on a server anywhere other than Australia, which is already happening. What will change on 15th June is that anyone using an Australian based Internet server will need to be blocked from access to avoid any potential legal liability.
My understanding is that all our international members/guests and anyone else not using an Australian IP address to access the site will notice no change and everything will continue as usual.
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 Chongandco,
Thank you for letting us know of your SVR24. You were one of the pioneers.
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 Lee,
Errr, you probably don’t want to put your email address up on a public forum as that is likely to attract spam and strange offers.
I have removed the identifiers. Your best approach is a direct email to Parvez or a Private Message through the site.
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
Fantastic news Jimmy!
Congratulations to a quiet achiever…..just this once the spotlights.
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
