Forum Replies Created
-
AuthorPosts
-
Greedfighter wrote:
If it is necessary for this site to begin operations overseas, I would like to make the suggestion that it is based (server location) in a country that does not honor Gilead’s patent. If this site were based in USA, I think there would also be big problems. If it was registered in Bangladesh (under someone else than Dr. Freeman) and located on a server in China, then I think the governmental frustration level will be clearly off the charts. Gilead would be just besides themselves in grief.
Says it all. In Australia for me to maintain my right to information and the freedom to express myself about a condition I have, and a condition that entities like the TGA have not cared a damn about in regard to me, we have to look at going ‘off shore’.
I get your point about not using the USA – it is in the grip of big companies and too much of a risk. We need to try other options a bit more open to free communication; I put forward the case for North Korea.
Where is the Minister in all this. The “LAW”!. Baloney!
Where I work here in NSW, there is an example in respect to Financial Management Orders during Mental Health Review Tribunal Hearings. One Act says they have to be made, virtually by stint of someone being mentally unwell, while another says distress to the patient and other supports have to be considered. The onus is then on the MHRT to exercise its discretion for the best interests of the patient.
The tone of the letter is that ‘I can do this to you because you are a private person and not a government entity, and you cannot do anything about it’.
Unfortunately, I agree with another poster that the recipient(s) of this threat are in the gun and it would be best if they don’t risk themselves. Appears we are back to being a convict settlement.
Yours
Jeff
Hi Sonix,
“This appears to be unprecedented action against medication that is approved for use in Australia”.
Certainly is, I think.
I got into the generics after reading a Sydney Morning Herald article last year – the joining this site is coincidental to that. Maybe they should prosecute the SMH too?
The real shame is the I suppose, unintended consequences of this threat – people like me who use this site to dip in and out of a support system that costs the government nothing will now miss out. Of course unintended consequences come when things are not thought through.
Compare me to somene using the PBS:
Me – paid for my DAA’s and use a forum to get support.
Person on the PBS – government pays mega $thousands and I suppose they will need a Medicare funded Mental Health Plan to get ongoing support if they want someone to talk to? Or maybe fund themselves a trip overseas so they are not breaking the law when they log on to FixHepC??
The Red Cross left me for dead when they infected me with Hep C; can’t remember the TGA being about offering any support anytime after that.
These people have nothing I want and nothing to offer me. Well pleased if they just went away.
Jeff.
Taken from the TGA website:
https://www.tga.gov.au/court-action
a list of prosecutions from 2013 through to 2015:
2015
• Conviction for criminal charges for dealing with unapproved therapeutic goods. On 3 December 2015, a Melbourne man appeared in the Ringwood Magistrates Court, Victoria on 8 criminal charges relating to dealing with unapproved therapeutic goods:
◦ 6 counts of importing therapeutic goods not included in the Australian Register of Therapeutic Goods (ARTG) contrary to section 19B(4) of the Therapeutic Goods Act 1989 (Cth) (the Act)
◦ 1 count of supplying therapeutic goods not included in the ARTG contrary to section 19B(4) of the Act
◦ 1 count of supplying counterfeit therapeutic goods contrary to section 42E of the Act.
• The Magistrate ordered that in relation to the import charges and supply charges under section 19B, a single penalty be imposed – the man was convicted and fined $1,500. In relation to the charge of supplying counterfeit therapeutic goods, the man was convicted and fined $500. The man who now resides overseas voluntarily returned to finalise these matters. He had no previous convictions and entered a guilty plea. The man was ordered to pay $117 in court costs and he was allowed 3 months to pay. The Magistrate also ordered that all of the imported goods seized by TGA investigators were forfeited.
• On 22 May 2015 the Adelaide Magistrates Court sentenced a 69 year old Adelaide man in relation to the importation of counterfeit erectile dysfunction medicines. The man pleaded guilty to one criminal charge under section 42E (1)(a)(iii) of the Therapeutic Goods Act 1989. The man was convicted and fined $4,000. The goods seized as evidential material were forfeited to the Commonwealth under section 54 of the Therapeutic Goods Act 1989.
• On 13 February 2015 the Southport Magistrates Court sentenced a man in relation to 24 criminal charges surrounding the manufacture, export and supply of unapproved therapeutic goods under section 19B(4) of the Therapeutic Goods Act 1989. The product, known as Black Salve, is not approved for marketing in Australia and has been the subject of TGA alerts (See Black and red salves in treating cancer and Black salve, red salve and cansema). The man was convicted under the provisions of section 20(1) of the Crimes Act 1914 and released on security of $5,000 and by recognizance that he be of good behaviour for two years. The court ordered the man not to be in possession of restricted chemicals, not to manufacture, promote, advertise or supply Black Salve and that the goods seized as evidential material be forfeited to the Commonwealth under section 54 of the Therapeutic Goods Act 1989.
2014
• 13 June 2014: Following an appeal by the Commonwealth Director of Public Prosecutions, two men were convicted the County Court of Victoria in Melbourne on 13 June 2014. Both respondents had been charged with eight criminal charges relating to their dealing with unapproved, and counterfeit medicines contrary the Therapeutic Goods Act 1989 (Cth) namely;
◦ 2 charges contrary to section 19B (1)(a)(i) (import of unapproved therapeutic goods); and
◦ 2 charges contrary to section 19B (1)(a)(iv) (supply of unapproved therapeutic goods); and
◦ 1 charge contrary to section 35 (1) (carrying out step in manufacture of therapeutic goods while not licensed to do so); and
◦ 1 charge contrary to section 42E (1)(a)(ii) (supply of counterfeit therapeutic goods); and
◦ 1 charge contrary to section 42E (1)(a)(i) (manufacture of counterfeit therapeutic goods); and
◦ 1 charge contrary to section 42E (1)(a)(iii) (import of counterfeit therapeutic goods).
• Both men were released conditionally under paragraph 20 (1)(a) of the Crimes Act 1914 (Cth), that each respondent give security by recognisance of $ 750 and to be of good behaviour for two years.
2013
Outcome of criminal prosecutions, from 1 August 2013
• 13 November 2013 – a company pleaded guilty in the Melbourne Magistrate’s Court to the importation and supply of unapproved therapeutic goods contrary to subsection 19B(4) of the Act following an investigation by the Therapeutic Goods Administration. The company entered into an order and recognisance under Subsection 19B(1) of the Crimes Act 1914 with a recognisance of $25,000 on condition the company is to be of good behaviour for 12 months and to pay costs of the prosecution for the offences of $25,000 stayed until 11 February 2014.
• 7 November 2013 – a man was sentenced at the Downing Centre Local Court (Sydney) in relation to supplying counterfeit medicines contrary to section 42E of the Act following an investigation by the Therapeutic Goods Administration. The man was convicted and ordered to perform 350 hours of community service.
• 27 August 2013 – a man pleaded guilty at the Downing Centre Local Court (Sydney) to one count of importing unapproved weight loss medicines contrary to section 19B of the Act following an investigation by the Therapeutic Goods Administration. The man was ordered to pay a fine of $2,000 and to be of good behaviour for 2 years. The medicines seized by the TGA as evidence in the case were forfeited to the Commonwealth for destruction.What manner of logic allows the TGA to categorise FixHep C as something they should go after and waste my tax payments along the way?
J.
I wonder who complained?
Reading the TGA letter it appears they have at least managed to drag out the whole affair until after the PBS came in anyway – closing the gate after the horse has bolted (in Australia at least).
I also wonder if an Australian edition of the site could morph into topics that have increasingly become more popular given that many of us are EOT and approaching what we hope is SVR. My own observations of this site seem to reflect this change.
Not sure how this can be done and whether anyone posting about their reaching 12 weeks SVR then saying how good Dr Freeman was helping with generics on the way through would be? And the plain logistics of it all. Anyway, the ongoing support for us in Aus is important methinks regardless of what the TGA says.
The example of being naughty they gave was basically a call for participants in the Redemption trials – is research now to be censored for f..k sake?
All very retarded if you ask my opinion and if this echoes the likely outcome of the new trade agreements, then God help us.
Otherwise, whoever the f..kers are who cooked this complaint up – too f..king late my friend; I have finished my treatment and on my way hopefully to being rid of Hep C. As an aside, did you have to look up Wikipedia to check Tasmania is part of Australia, you dimwitted f..ks.
Again, thanks to Dr Freeman – if this means a well earned rest, you have earned it (pardon the pun).
Yours
Jeff
Hi Rowan:
Since completing treatment I have noticed that the side effects are abating, I fart less (go figure!) sleep very well and am swimming 3x a week and regaining some muscle mass.
I am 6 weeks past EOT and I hope I am still UND (originally since Jan while on sof/dac). Find out if SVR in July.
Since taking the meds the gym has been my friend to the extent that I appear to have stretched something under the skin (according to the doctor) where I have an abdominal scar, and after asking at the gym what exercises not to do, started something else and now have a very sore wrist.
These meds should come with a warning about not injuring oneself after talking them!
Yours
Jeff
P.S. congrats about the SVR.
I personally am enjoying my “rampant poverty and debauched HCV splashing weirdo foreign” life, particularly now there is a chance I am rid of HepC.
We’re doing fine in the lucky country goes the song.
Hi tweakmax,
I am 5 + weeks EOT and have some indistinct feelings as well.
The first is some tiredness and the second is a sometimes pain in my right side where I would expect the bottom part of my liver resides.
Due to see my G.P. about follow up anyway and will ask about the pain.
Since treatment there is more energy and hence more heroic gym stuff – the tiredness at times seems to be a ‘good tiredness’ rather than just not wanting to get out of bed.
The pain is around and in a dirty great big scar from surgery which appears to have reddened and got angry looking after all the gym heroics. I think I have strained something?
I suppose the point I am trying to make, is that for me this virus will sometimes do your head in. And now hopefully it is dead and buried, it’s ghosts will attempt to do the same.
Yours
Jeff
Had my AFP test and result okay.
Result appears to be in the category of ‘not bad news’ out of the three categories one can expect with HepC:
a) bad news
b) not bad news
c) good newsAppears though, that result c. is not available in this situation. Fair enough, I have long learnt to take what I can get and be happy.
Seeing the G.P. Tuesday about scans etc …..
Also booked in for 1st July for a colonoscopy. I am not that big on anatomy, but It’s not anatomically possible they could have a look at the old liver while the camera is up there, is it ?????
Jeff
Me being among the people that need to be careful about a HCC recurrence, I had my first monthly AFP test done yesterday. Probably would have been due last Friday but seeing the date then was the 13th, I decided to let superstition rule the day and feel rather pleased with myself showing I could even out wait ‘the wait’ by 24 hours.
My G.P. says that if there is an indication of a HCC recurrence, the AFP levels will rise markedly. In my case, AFP levels have always been up prior to treatment as well due the the HCV activity.
I am not due for a Viral Load check until July, near post 12 weeks EOT – the only other one I wanted was in January and I figure I can wait until the large lady sings for the next one.
BUT:
a) if the AFP is up again? I seem to remember being there (HCC vs active HCV) before anyway. More probable HCC will be the worry.
b) if the AFP is normal, then is this a ‘poor man’s’ (like Doc Freeman said in regard to LFT’s) version of UND?I really wanted to here the news from the fat lady. Does your head in this virus.
Jeff
rohcvfighter wrote:@Dr. Freeman:
there is in Romania something similar that includes
– 6 days trip to India at a 5* hotel, various trips to visiting places/museums, blood tests & medical examination and the medication for Hep. C, flight tickets, shopping sessions etc. The price is ~1/5 by compare with original Harvoni.My view: it is still highly expensive, but ….. if people get the chance to visit India …. no comment
P.S. a short extract from the Wikipedia page about Harvoni:
In the United States, the average cost of treatment with Harvoni is over $90,000.[5] An increasing number of US patients are using drug tourism to countries like India to buy it for as little as 1% of the US cost.[6][7]I got my first lot of meds via a Telehealth consultation and then a 100km odd drive to Sydney (I was down there on that day anyway) to pick up the meds at a pharmacy. The second 12 weeks by Telehealth consult and meds were posted to me.Worked out all under $3000.00.
Maybe I do live in the lucky country – it’s quite close to Tasmania..
J.
Hi Gaj and best wishes during the next wait.
Couldn’t think of much to say, though I did notice Tricia’s comments.
You have 865 posts onboard – 99.9% of which are calm and wise and supporting everybody else here.
Many thanks for being here.
Yours
Jeff
My conversation with my daughter Tuesday day after her first day back in Kindergarten.
J. What did you do in school today?
D. We learnt a new word.
J. And what word is that??
D. I can’t remember.Walked into that one, didn’t I.
The reversing fibrosis article almost reads like the affects of DAA’s may be generalised across all the body’s bits ….
“Recent clinical trials have shown that curing hepatitis C with antiviral medications often results in a dramatic resolution of the dense fibrosis that accompanies cirrhosis — far more than previously thought. This shows that fibrosis can be reversed.
In the laboratory, research has created a much better understanding of the biological intricacies of fibrosis.
Going back to the home analogy: We now know that healthy tissues constantly renovate their walls and other support structures. A specific type of cell called a myofibroblast appears to be at the center of this activity.
Realistic strategies for deactivating myofibroblasts have opened up the theoretical possibility that medications or other therapies might halt and even reverse fibrosis — at least in the test tube. Other biochemical pathways that regulate the process of remodeling also seem to be open to therapeutic alteration in the laboratory.”
I didn’t get a sense of how this all worked, but it sounds possible DAA’s may have other unintended uses…? Does it breakdown the fibrosis or just give the liver a fair go at doing this?
I read somewhere about good old interferon possible being effective in reversing Peyronie’s disease in as much as it broke down scar tissue??
It is something with treatment I was hanging my hat on; and it’s good to see an article holding out some hope that getting rid of the bug may help with scaring as well.
Yours
Jeff
Hi Phoenix,
my EOT was 12th April and I felt good at that time and for a while after.
Have been feeling a bit down last few days and part of this is having less energy (?), OR the will to use what I have got.
The ‘recurrence of a HCC after DAA’ stuff did have a jarring note with me. More so in that when I reached EOT, I had little inclination to have another blood test until about 12 weeks later. It would be then I would find out whether the DAA’s worked. Proviso I did not start feeling really crook in the meantime.
But you can’ bugger around with a HCC so I am told (and having a great big upside down letter J shaped scar on my belly attests to this line of thought), so I am off to see the G.P. for referrals to have AFP checked this Friday.
And of course, before DAA’s my AFP went up with my Hep C anyway, so to validate any AFP finding, maybe get the LFTs checked as well…… Out goes the ‘don’t be bothered by it until July’ plan…
Enough to make me feel a bit depressed ….. Maybe in terms of ‘reactive depression’ as going through DAA treatment brings up all the feelings associated with living with this bug for many years.
Many of our posts here have been in terms of fighting a ‘good fight’ and holding onto a new hope for a HCV free future. That’s perfectly valid.
I find some of the posts recently expressing doubts and reservations about recurrence both confronting, BUT uplifting in a way as well. Uplifting in that they remind me to know my enemy – some of these new feelings and doubts are simply duplicates of the old feelings and doubts I have lived with for many years.
Hep C has f..cked with my liver, and there is always a chance it will continue to do so, but having lived with it for 20 odd years, I know when it is trying to f…k round with my head. Maybe, just maybe, these feelings I got are more in the head then the liver.
It is good to have this forum as a way people can confront the psychological warfare the bug can also indulge in.
Yours
Jeff
25 April 2016 at 5:34 am in reply to: Just got contacted by an anonymous ‘guest’ flogging generic meds #16140Ariel wrote:I can’t say I was ever offered meds or handbags but I was offered by a Guest a potential relationship bahaaaaahahaaaa
Where do you live?
How old are you?
Have you got Hep?
Etc
Can’t say I use the chat thingy much since.
Have you got Hep?
I suppose some people associated with a forum going by the handle FixHepC may have – failed the IQ test.
Made me start thinking though, about what having ‘got’ something really is. I know that even with ‘gotting’ rid of it, HepC’s past presence will still show up if anyone who wants a blood test cares to look. For a lot of people it may be tell tale signs in the liver…..
Did you ask this bod whether they had some dormant bug laying around their system? Maybe toe nail fungus, and you could have referred him on to the poster Mike talked about?
Funny how people can start to define each other given half a moment of dumb stupidity.
Yours
Jeff – person of at least some merit regardless whether I have ‘got’ anything in particular.
-
AuthorPosts