Your writing touched me too Archer I am sorry for your loss and relate to some of your feelings.
I must admit I was scared of any tx after my last experience too. Thankyou for saying it out loud. Yes Pat1 I agree it’s good to take a break sometimes to just chill this is overwhelming I think for us all at times.
Given this feeling, I have deactivated my Facebook for the duration of this tx and golly gosh what a release thats been l was sick to death of people liking pictures of waves and surf and even me with stuck on hair (I lost 2/3rds of my hair to peg/inf) and really just needed to chill away from the mad world of social media.
I like this forum. It’s real. Aren’t we fortunate to be able to share not just the quantitative and qualitative stuff but also some of our feelings in good company

Ariel

How are you doing Archer?

Yours is a gracious response and I am really glad that you did take the time to reply. I admire your determination and spirit. It was pleasing to read that your symptoms had abated somewhat. You asked the question ‘.But how well informed are the public…’ This is still a hidden disease and when I told my sisters recently that I had hepc they were completely unaware of the ramifications. Despite being told to wait for new medications over the years and with the announcement of the recent PBS listing I even now would not change my game plan. The Buyers Club has transformed mine and many lives.

Recently a friend suggested we might have judged the PBAC too harshly for initially denying approval of sofosbuvir – that we may have underestimated the negotiations needed to broker a deal sufficiently cost effective to treat so many HCV sufferers. Greatly respecting my friend – I gave this due consideration.

After all, I have been banging on about the immorality of a bureaucracy which approved the less costly simeprevir – but appeared silent on the warehousing of patients intolerant of IFN/simeprevir – seeming to leave them to die. I deplored a seeming failure to establish contingencies for those most at risk – succumbing to HCC, life-threatening complications & end stage disease.

Two weeks ago a very dear friend lost his battle with cirrhosis. After nearly four years of hospital visits, TACEs, and suffering – the wake celebrating his too short life was held only six days ago. During this time I received an interstate call about a friend whose symptoms were also becoming worse. Hospital admission & days of countless tests to determine why more than two months following his TACE, he was becoming so rapidly ill – They found more HCC and he too passed within days.

Two of several friends – who should have much earlier received the DAAs. I can find no rationale for such loss whilst treatment negotiations were being conducted. Maybe the prejudice with which we are “stigmatised” has generated some disregard for our welfare. There are cancer sufferers being given treatment matching Gilead’s costs simply to buy them more time – yet we were denied equal resourcing for a cure.

Surely the costs should not have been prohibitive. If the Buyer’s Club could get affordable pharmaceuticals from alternative sources – then why could the Government not have sourced, tested and provided safe treatment for this group of patients. Should Free Trade provisions bind a Government, when an avaricious Corporation is holding its citizens’ very lives to ransom.

For what seems as long as I can remember – this is the twilight endured by sufferers for whom IFN was ill advised. Now there is rejoicing – and rightly so; because the DAAs are approved. Thankfully humanity and sanity amongst all parties has finally prevailed.

But the casualties amongst those who were denied treatment when most at risk – are still mounting. They have not yet magically disappeared with the advent of DAAs. The “silent” legacy of the current health ministry.

Ironically, in the midst of such a tragic week – I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope – that if I am very lucky – I might possibly survive. But however this crap shoot turns out – to be given a last throw of the dice – would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

Ironically, in the midst of such a tragic week – I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope – that if I am very lucky – I might possibly survive. But however this crap shoot turns out – to be given a last throw of the dice – would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

Hey Archer, so pleased to read your good news and I also feel your grief for those who did not access the medicines before too much irreversible damage was done , more than you can know.

Archer, I agree with your every word and feel the sadness of knowing that others have not survived the ramifications of this insidious virus and even now are still struggling. It was wonderful to read that you are now UND. For me, It was a strange feeling to learn of a similar result for myself and I am still to absorb the implications fully. Surely now is a time of hope for all.

Hi Archer,

Hope you see this, I know you get so busy with work, but how are you going?
I’m sure many here also wonder too?

Hope you’re doing better.

Love Cindi x