For the present time, I want my donations to be applied as per my post (below) in a previous thread –

In 2014 when the Govt approved simeprevir and declined sofosbuvir on “cost effectiveness” grounds – they immorally failed to overtly disclose that this decision effectively warehoused the most high risk patients who could not medically tolerate the simeprevir/IFN treatment – and were literally being left to die. For all the vanity this country projects about its benign social orientation – I still remain appalled that this fact is so overlooked and under-reported. Despite the public victim blaming – most informed citizens would not see this as the “australian” way.
I would be happy to contribute to a fighting fund to provide insufficiently resourced individuals who comprise this high risk group with treatment – I would like to know that on our watch we have tried to care for those in most need. There are clever people on this team whom can surely find a way to structure this without compromising our “existing” services. Doc James and his excellent team have created a compassionate and well executed social endeavour – I would like to see members honour its purpose in this way. Many of us aren’t personally well resourced but having found the funds to treat ourselves perhaps we can each dig a little deeper. Christmas might be a good time to juggle some priorities and seed the fund. It need not be ambitious but to have a little help on hand for those who can’t afford treatment seems a good caring of each other. ”

But I found the “give now”, Shaw Foundation,TasCard and Aids/Hep overlays confusing – so I am not clear whether the funds I donate will go toward making generics available to HepC sufferers or not. I will assume they do – and just accept that I have again fallen victim to my usual intolerance for completion of forms of any kind.

So advanced with HepC my probability of success may be more compromised than general statistics suggest – but at least I was able to choose whether I throw the dice. I will never forget the horror, so recently, of having a life threatening disease with no hope of treatment due to big Pharma greed – it appals me how many people out there are experiencing such powerlessness.

DAMN. I have just read Doc James post – earlier I was just looking for anything titled “charity” or “donation” so I could post. Apologies for wasting your time – I failed to put FixhepC in “other”, and don’t know how to amend it. Will see if I can “contact” them tomorrow.

Congratulations Alsdad. Here’s wishing you a sustained SVR, sweet freedom and a richer future. As with all our fellow travellers it is a privilege to have shared your journey. All the best. Archer

Cindi;

Last time I went to the RPA seeking intervention ( as you know I had been listed with them for suitable trials, and gone down to Sydney for routine appointments accordingly) – I was told that their cut off for DAA provision (at the time I thik it was sofosbuvir) on compassionate grounds was Meld 15. Because my Meld score was calculated by them at the time at 12 – they could not give it to me. This may due to Pharma’s stipulations or simply where they have had to draw the line on the basis of the quantity made available. Otherwise, I found the RPA Prof. & staff very kind considering that I wasn’t technically one of their patients – they even checked the lesions on my MRI scans for a while – until I was referred here to a Brisbane surgeon now checking 12 weekly.
Your friend sounds quite unwell and from all you have said on forum and told me by phone – I imagine your friend may be eligible for the DAA’s ( if he again transplant listed it would seem unlikely that his Meld score wouldnt be sufficiently or reasonably high. Take his bloods, fibroscan, meds list, dot pointed recent history of symptoms & events etc – the usual. Oops sorry have to rush to work. …will get back if I think of anything more useful to say ..

Dear Cindi, After all our years as fellow travellers, it is great to see that J is finally receiving treatment. You endured painful years of IVF & four cruel HCV treatments – I always admired your courage & spirit. Nevertheless; across two previous forums you always treated people so kindly. Any harrassment from the previous forum appears conflicted & self serving. Don’t credit it with any further thought. Life is too precious.

J was just a munchkin when we sometimes talked on the phone & laughed ourselves silly when he shared with me how he had hidden your computer because it had turned to spaghetti – and he couldn’t fix it. Cherished memory. Now he is a bigger lad and finally receiving HCV treatment. Hopefully, you will soon be finally free of this burden so long carried – though you were innocent and deserved no reproach. Let us hope for sweet freedom and a richer future.

Tell J to keep his big boy pants on (joke) – cause he’s shown a new maturity in how seriously he has taken his tx decision. Archer xx

Price thanks for info. If you can still locate your references for the non q10 , particularly melatonin, interventions…I would be very pleased to access them. I have two work mates, one in particular, who suffer quite severely with this condition if I can suggest help to him in anyway I would do so. Thanks. Archer

great news Chester. Im so glad for YOU. waiting to cheer at the finish line. Sweet Freedom ahead. Best Wishes always

As an interesting aside to this – I read an article abstract recently where contrary to “response driven” management of treatment in the past – the author was raising the question whether – future treatment might become guided by assessing “resistance”.