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Viewing 15 posts - 31 through 45 (of 61 total)
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  • in reply to: Hackers, Testers and Statisticians Wanted #7411
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    I don’t think the aim is to provide all permutations in the tool GAJ (ie some permutations may have same outcome) – so much as we be sure that the critical DAA components in each permutation which would produce or require a reframing / diversion in the decision trees are accounted for – Unless in the end, to achieve this, it does require all permutations hope Im making sense archer.

    in reply to: Fibrosis/Cirrhosis info corner #7408
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    At this point I will be happy if I clear & survive – and the lesions in my liver don’t jettison me into a whole new nightmare.

    However the goal posts might hopefully shift – and I agree – it would be good to start developing some evidence based or even compelling alternative data on how the HCV damaged liver, portal hypertension, varices and ascites might be modified and the prospect of HCC inhibited – however, marginally – once they are no longer being fuelled by HCV generated inflammation. good one. archer.

    in reply to: Video of Hepatitis C Virus Life Cycle #7407
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    It shows how NS5B, an RNA-dependent RNA polymerase, has been identified as the core of the replication complex – which possibly explains why sofosbuvir is a constant DAA throughout the treatments – working in tandem with various other inhibitors possibly selected through trial results on the basis of genotype. Of course not being educated in this field – my hypothesis could be total horse s—t. The video is superbly designed and medical training has moved to a whole new level with current technology.

    in reply to: Merry Christmas!!!! #7077
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    Wow! Merry Christmas & Congratulations to Irma & Neilo

    in reply to: Background info on Sussan Ley’s announcement #7075
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    Throughout my involvement with FixHep I have received extraordinary care by Dr James, Greg Jeffereys and the FixHep team. I have witnessed selfless effort to address the toll of HCV.

    Many of us are of an age where we can painfully recall the cruel treatment meted out to HIV sufferers, the focus then being on the gay community. Individuals also waited for meds, and better meds, maintained themselves as best they could at huge personal cost and a horrifying toll. Finally, in the face of such inhumanity the collective mobilised themselves. An inspiring testament to our capacity as human beings – to look after each other.

    Though HCV sufferers are greater in number we appear to have been less effective advocates of our cause – perhaps because due to our isolation in diversity and lacking a critical mass within a mutually supportive network, an active and existing subculture. It seems when individuals have “stumbled” upon an HCV forum – they have bonded in sharing their challenges with physical treatment and psychological alienation. However, the HCV experience being the primary basis of this bond – after successful treatment many individuals do just move on, some remain for a number of years and others longer. I imagine that this may be determined by the ongoing value of the shared experience and/or a desire to assist others.

    Klhinde, my feeling is that individuals’ motivation to remain on this or any site is more likely to be based on the intrinsic satisfaction experienced around these issues rather than the sourcing of generics through Government agency. In fact the only occasion when I have seen a forum diminish has been as a result of interpersonal conflict or over controlling moderators. Though admittedly at no time have we been without the bonding dynamic of painful or absent treatment – so perhaps time will tell a different story.

    I see a number of individuals here who feel strongly about the HCV cause and many of us know there is a long way to go before others throughout this global village have no need of treatment or some sanctuary. But if by some remote likelihood in the future; such support becomes sustained only by those remaining inflicted and this forum eventually winds up – no amount of wanting or anger against the greed which we experienced; will change how members lives’ demand or their spirit leads them.

    Perhaps on a more pragmatic note; it seems it may be some time before everyone receives treatment; during which many mayl not wish to wait and there may always be some who wish to manage their health independently. Additionally, and more sadly numbers will re-generate whilst this disease is not managed globally; as is required for its ultimate containment.

    in reply to: AT LAST THE XMAS PRESENT WE ALL WANTED PBS LISTING #6800
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    In view of Gileads track record – I wonder whether there are conditions other than price that have been agreed to in sealing the “deal”. I think our rights to access generics needs to be safeguarded. As an exercise in fiscal responsibility and the dollars earned hard on the backs of working Australians – I wonder if there was any serious consideration given to sources other than Gilead.

    in reply to: Australian PBS listing in March! #6759
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    Its wonderful news … a historic event.

    I’m certain this would not have occurred without the global focus on a hardworking, humanitarian and courageous group of people in Tasmania. The Government’s initial 2014 decision to purchase only simeprevir (to be paired with interferon) in favour of sofosbuvir – shamefully understated the fact that many Australian HCV sufferers were effectively being discarded as cost saving collateral – left to die – the authorities knew that many sufferers whose condition was more advanced, could not access this treatment because of the high risk of liver failure.

    I never could reconcile how this “glaring” fact somehow escaped being sufficiently publicised by the media or understood by the general public – it should have been. However, the global spotlight on Australian treatment which has so recently occurred through the Tasmanian endeavour may have eventually made this dirty little secret apparent – a shame which no Government in a “developed” nation like Australia would be eager to see focused.

    But let us see how the HCV saga really unfolds – meanwhile as “all” Australians receive the drugs – generics for many may still remain the better option; there is also valuable, additional support offered by this forum and many people in the “village” still seeking assistance. There are still “many miles to go”.

    in reply to: Is this “Human Pegvirus” HepC’s little brother? #6673
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    Ironically, I found the article below very interesting – likely caught my attention because it is more immediately relevant to my condition. Talks about intervention for pathological vascular developments which occur with cirrhosis and which frequently comprise a serious medical complication. I guess for others, like myself, its findings are too late – however I am pleased to see the possibility of this research bringing relief to others. Advanced with HCV I experience the possibility of a variceal bleed or sepsis as prospects causing most apprehension.

    in reply to: Young J the dragon slayer #6444
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    Cindi; you already know how I feel about J finally clearing the HCV – but I want to add to the celebration here – J is indeed, fortunate to have such a loving mother and compassionate doctor – one day he may more fully understand. For now it is his time to just enjoy being fifteen and embrace life, without the invisible cloud of an illness.

    I am delighted for you that J has achieved this freedom you have so long desired..All the best, Girl. Here comes the sun

    Archer xx

    in reply to: Charitable Donations #6435
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    I rang TasCAHRD,on 03 6234 1242 – explained my error – assured them that in future I wouldn’t waste their time – now knew how to direct further contributions independently – but asked whether on this occasion they could ensure the funds went to FixHepC Buyers Club. I felt a bit mean doing it because the funds wherever they go Im sure would be toward a worthy cause.

    However, had a brief conversation with Ellen, the Head of Finance & Administration, TasCAHRD. Tasmanian Council on AIDS, Hepatitis and Related Diseases – a very gracious person who immediately understood, directed the funds and sent me a confirmatory email.

    Yes if I had read Dr James post I would have known what to do, but I had not engaged the thread from the beginning.

    in reply to: Swollen Feet #5608
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    Thanks Gaj – I had to go deal with something else before – but was concerned about Panamajo. Just freed up & was also going back to check her earlier posts – to see if she might be cirrhotic. Not knowing one’s history ( bloods, ascites etc) is inhibiting – dont wish to alarm someone at F1-F2 but at F4 I believe those symptoms particularly after 8 weeks tx – deserve attention as a precaution against further complications.
    The oedema might also be related to the riba (if still taking it) but the sudden weight gain ?? Panamajo; your altitude may have other implications. We forum members arent qualified to do more than share anecdotally – can’t presume to diagnose or recommend. Please consult a doctor. kind regards. Archer

    in reply to: Thank you to our newest moderator #5591
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    Thank you Paul

    in reply to: Swollen Feet #5589
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    Difficult to suggest without more info. I would seek gp2u consultation. If you are cirrhotic it could be caused by either your kidneys or liver. Apart from the oedema in feet/legs where is the weight most evident..is your belly swollen? Has the weight increase been sudden. Seek medical advice,

    in reply to: Young J the dragon slayer #5480
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    Hey CJ,

    Can’t believe so much time has already passed since J started tx – buddy sure is doing well. Im delighted. For you as well as J. Your next ordeal as the mother of an adolescent will be when he wants to ride a bike (as in motor) or jump out of a plane. But don’t worry you’ve got at least 2-3 years respite now. Now is the time to enjoy your drawing – and not cook brussel sprouts. Archer xx

    in reply to: Charitable Donations #5478
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    Im with you Paul – lets make this Christmas generous in heart and honour the spirit of FixhepC – a movement which affirming human value – not through status, colour, theosophy or orientation – but according to need – has sought ways to kindly and safely preserve the welfare of many.

    We have received two precious gifts –

    1 Access to life saving medicines and compassionate medical support – through its affordability, convenience and safety

    2 An opportunity to do something that is truly meaningful, that matters.. We can help lift another human life by contributing toward the welfare of those for whom this access is less affordable.

    http://www.givenow.com.au/tascahrd

    UT1ii6RKuE4[video]http://www.youtube.com/watch?v=UT1ii6RKuE4[/video]

Viewing 15 posts - 31 through 45 (of 61 total)