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Hi,
my posting was somewhat of a knee jerk reaction after watching the television.
I expect there are no easy answers with planning to protect populations from pandemics and the like. I suppose my angst was more in line with agencies that are there to protect me, wasting my tax money on restricting my right to access information from the internet.
Rant finished, my daughter wants me to pay ‘crocky boys’ (don’t ask), so wheres the banana?
Jeff
Hi,
http://www.abc.net.au/catalyst/stories/4190452.htm will get you there.
It’s a re-run and part f it says:
“NARRATION
Funding for the TGA comes exclusively from industry. This raises concerns that the TGA could be pressured into putting the needs of industry before public safety. The TGA strongly denies this and says it usually seeks the advice of an independent expert advisory committee before making a decision to approve or reject a new product. So will the government continue to stockpile antivirals in the face of such uncertainty? A statement from the Department of Health said – (Reads) Based on all available data, including the most recent Cochrane report (about these drugs), the Australian Government will continue to maintain its stockpile of the antiviral drugs.”I just love it. All these entities that think they are in ivory towers and really are in houses made of glass. The program really proves nothing, and in the don’t sue me jargon, just “raises serious questions”.
My message to the TGA – ‘f off’ and leave me alone.
J.
P.S.
Google: “Tamiflu Gilead” – are they related in anyway? Nothing really, but “raises serious questions”?
fitz wrote:Sorry Jeff. Still not quite fully understanding your intended message I’m afraid. I value directness, so just come right out and hit me over the head with it if you have to. I promise I won’t run away.
I’ve noticed you Aussies (and Kiwis as well) sometimes tend to speak in exceedingly polite and indirect terms (especially when you are disagreeing with something,) rather than coming right out and saying what you are thinking. This is certainly a matter of cultural style, but for we Americans who tend to be right up front with things, it can be a bit daunting attempting to unravel your pleasant code to get to the heart of things.
Hi Fitz,
I am starting to see your point. Maybe Aussies are a bit too subtle when we talk about stuff.
There is an exception to prove this rule though – when we discuss the the well thought out, dumb as shit actions of Australia’s very own fuck-wit academy, the TGA (I refer to the geo blocking thread).
Yours
Jeff
Just watching an ABC (Australian Broadcasting Commission) program Q&A – can be found under www ABC catalyst or the like.
Appears Tamiflu may be not all that it is made up to be: issues of studies being presented having commercial in confidence clauses that can keep ad side effects undisclosed; and Australian TGA being funded by industry – a pay for service set up where if you start knocking back too many drugs, you cut your own source of income off as well.
All very interesting and I am sure there are many sides to the issue I am just too stupid to understand and the ABC will soon be geoblocked as well. But I do wonder if the TGA should think more about what it is supposed to do before it interferes with my right to find information.
J.
Hi all,
this recent part of the thread just reminds me of how powerful language can be. My career with HCV has been reasonably okay in regard to the manner I have been shown by health professionals. This is aside from the “Jeff couldn’t cope [with interferon plus the other stuff]” many years back. Ever since, things generally okay as I said. RPA wise – distinction grade.
Many years ago I had an unrelated conversation with a solicitor about compensation and damages (read Court pity and willingness to acknowledge someone has been hurt), and he said a big problem with many conditions is that people appear healthy, and I guess you look that way with HCV until the old boot starts to give out. Sometimes I think we walk a thin edge sympathy wise. Not just straight out assumptions about the manner in which we have become HCV positive, but expectations that we can be warehoused until medications become more affordable.
The people I see generally have me checking their weeks record so that I am on the same page as them, even if the request to see me is just to get some advice about their Centrelink or even a local bus timetable. I am lucky though as the people I see are such that they often can misinterpret things that are said, so I have be be conscious of this automatically.
Not sure if I am getting the message across, but just saying language is all important to me, I feel bad enough having HCV to begin with.
Yours
Jeff
fitz wrote:July 18, 2016 – Last Friday’s meeting with my Gastroenterologist was a mixed bag. She bopped into the exam room first thing Friday morning with
an iced Starbucks coffee in her hand,some humility in her heart and mind, smiling and looking sharp and ready for the day.Hi Fitz,
I hope you don’t mind changing what you wrote – I think it would have changed what followed. Like HCV, forgetting we are people is a modern day epidemic too, I think.
Hope the virons fall into line quickly for you.
Jeff
”James-Freeman-facebook” wrote:Any SVR rate <100% means a small number of people will not attain SVR. Don't panic we are currently running 95.1% SVR but that still means for every 100 people on generic treatment 5 will not SVR.
I came across an excellent article from Dr Jordan Feld here:
Consider Waiting to Retreat
Although retreatment strategies are becoming more clearly defined, it is also important to consider that, for most patients, retreatment is not an emergency. For all patients except those with life-threatening cryoglobulinemic vasculitis, retreatment can almost certainly wait. Even for patients with advanced cirrhosis, waiting is not always a bad decision; SVR does not reverse liver failure in many patients, so those who cannot wait may actually be better served by being listed for a transplant.
There are at least 2 advantages to exercising a bit of patience. First, unfit RAVs, such as those to sofosbuvir, often disappear with time. Of more importance, research in HCV management continues to move at breakneck speed. The next meeting in this field may well offer the data we need to guide our decisions so we avoid failing a second time.
I seemed to have developed a sudden interest in this thread and was wondering in regard to the bold bit above – does this mean if left alone, there is some chance the RAV in-breads may be that inbred, they simply cark it and die out. Can’t find any articles along this line though.
J.
Price wrote:Reducing 10 lbs is one of the strategies we used with the old interferon treatment because it reduced insulin resistance and that increased SVR…sometimes.
P.
The meds helped me further lose weight as I had more energy/will to exercise more and then eat less when the weight started dropping (ever so slowly).
Jeff
Hi Hit The Road Jack
”Hit wrote:Gaj, I’ve been off line for a bit..recently logged in…and was really surprised, albeit very saddened to read the wretched Detected word is back for you & Splitdog…
As you can see I’m also G3. I’m almost too scared to have follow up bloods done..I’ve read a little bit and can see G3 is a tough one to shift…I’m wondering if all G3s fail Sof/Dac treatment..
I’m really sorry if I’m sounding self indulgent or sound in any way insensitive or selfish regarding your confirmed status…
Quoting Gaj: “The main problems with us G3s seem to be related to cirrhosis, previous Tx, VL and length of Tx. I score very poorly on the first three so went into 24 week Tx knowing I only had a 80% likelihood of success based on previous studies. While I didn’t achieve SVR my overall health has improved in leaps and bounds putting me in a good position to do so next time”.
I didn’t make it over the line in the get rid of hep C race either, but then again, read the underlined bit above. I do not fully know whether the old lethargy has returned (maybe a bit of reactive depression, though I have caught a cold going around work as well), but the time on meds has seen me join the human race again and establish the habits of getting my money’s worth from the gym subscriptions. Dogs and daughter appreciate my new found involvement in life too.
Yours
Jeff
Hi Gaj,
so sorry to hear this and I too will be watching what to do.
Otherwise, “The good news from my visit was that my CT scan and AFP tests both look fine so that was a relief. Also, since mid Nov 2015 when access to generics allowed me to commence treatment my overall health and quality of life has improved in so many ways. I’m extremely grateful to Dr Freeman and the rest of the FixHepC team for providing me with that opportunity.” says a lot for me too.
Had my life back for a good while and would do the same again six ways to Sunday and twice o the Sabbath. Had two glasses of Red at a mates 67th on Sunday, and half a packet of Coles brand chocolate buttons Saturday night as well. Tantrums accomplished; back on the wagon for me.
The interlude of being well saw me lose another five kilos as well. Hoping for more interludes for both (for that matter ALL) of us.
Yours
Jeff
9 July 2016 at 11:15 am in reply to: Article – Do doctors understand what helps HCV patients…. #20743Found this link when looking at this:
U.S. Study Looks at Long-Term Durability of Hepatitis C Cure, Risk of Relapse and Liver Cancer
By Sean R. Hosein
From Canadian AIDS Treatment Information ExchangeMay/June 2016
table for audio link /table for audio link
Researchers in several countries — including France, New Zealand, the U.K. and the U.S. — reviewed the records of several thousand people who had been cured of HCV using direct-acting antivirals (DAAs) and found very high rates of cure that were sustained up to three years after cessation of therapy. That is, once cured, the vast majority of participants stayed cured. Rates of relapse, reinfection and liver cancer were very low after cure was achieved.yours
J
splitdog wrote:Thanks. It IS frustrating.
Hi Splitdog,
the above says it all about this virus. We appear to share the same genotype and now 12 week post treatment outcome.
I am ever hopeful and optimistic and I guess lucky that accessing medications has been available to me in Aust. where people in the US may have problems doing so.
Although this try has not ended up SVR, I expect your options here are pretty good.
Yours
Jeff
Thanks all and Hi Splitdog,
my unwanted friend is 3a and it seems its desire to keep me company did not diminish after 24 weeks of treatment.
I think my next moves will need a lot of consideration given that my liver has needed to have another unwanted guest (a HCC) evicted some years back.
The good news is that there are ‘next moves’ to consider I suppose, but I have to admit that this virus gives me the shits at times.
Yours
Jeff
Got my own private Shit-O-Gram today when my G.P. called with the results of my VL test done 4th July: Unfortunately detected. So off to my specialist to plan what to do next.
Just as I noticed the increase in energy after commencement of and during treatment, something (feelings similar to those of old) was telling me about three weeks ago that I may get this result. 4th July is bang on 12 weeks (minus 1 day) as well so I expect it is a full on treatment failure.
I have spent some time thinking back about vague feelings of not being well and as of two weeks ago getting a cold that I can’t seem to shake. This did not confirm to me that it would not work, but last week my daughter asked me why I sleep a lot. I told her it was the cold. Appears it was my old friend, bastard that he is.
Camera up my bum on 1st July went okay, VL test on 4th not good, still monitoring the liver – the same old place my wife did here Diagnostic Radiography student placement in (and got a Distinction which is not surprising given her experience overseas).
A good aspect is that I have experienced feeling normal for some months and my daughter appreciates that very much.
Yours with thanks to all and it looks like I have to migrate myself to re-treatment corner.
Yours
Jeff
“Former chief executive John Hornell, who left the foundation last year after 17 years, said he could not discuss anything. He said he had signed a confidentiality agreement which prevented him talking about his time with the organisation or why he resigned.”
Not particularly commenting on the right or wrong of any allegations of impropriety, but – amazing, use of public money being questioned, and so we sign a ‘confidentiality agreement’ and plead the fifth (so to speak).
Hope this type of “don’t ask, I wont tell” stuff finds its way across the ditch.
J.
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