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Just got off the phone to a nurse at the liver clinic at my local hospital (large city in Queensland). She told me that there is a meeting to discuss PBS approval in late November, and that it was the unanimous opinion of the doctors at the liver clinic that the new drugs would probably be approved in November, but definitely no later than the next meeting in April, due the enormous pressure of the situation. She said the way it is being proposed to manage the impact on the public purse is that the numbers of patients the govt will pay for per year will be “capped”, with the drug companies paying for numbers over the cap.
This leaves me quite confused. If this is nearly a done deal, then why is the HepC Council of NSW, amongst others, still campaigning so hard, and why is there such a complete lack of confidence in the govt process that people are taking action like fixhepc.com?
I’m glad fixhepc.com exists, if only to put more very practical pressure on pharma. But as far as my personal decision goes on whether to buy drugs now or wait, I just don’t know right now. My last fibroscan a few months ago was “0-1” so maybe I can afford to wait, but waiting just doesn’t feel good! I want to have more energy now, but I’d also prefer to do this through a hospital. Hmmm…
If I allow myself to inhabit the part of me that doesn’t want to wait… I feel stronger. I feel in charge of my destiny. Not a victim of the villainy of pharma and a government that values patent over patient. I am actively claiming a new life now.
I have low fibrosis – after probably 38 years with this disease my liver is apparently almost normal. But am I “well”? Hard to say. What is “well”, as I’ve never had an adult life free of this disease. I’ve had years on a disability pension due to overwhelming fatigue. I overcame most of that with diet, meditation and Cathay Herbal’s CH100, and I’ve been working again continuously since 2006. But I’ve had to drop back to part time the last few years. After 3 days work I’m knackered. For decades I’ve needed to go to bed by 9.30pm or I’m tired the next day. My diet and stress levels have to be absolutely right or I crash. I’ve had a very stressful work situation for the last 2 years and I’ve been doing a lot of crashing. It hasn’t felt like “well” for a long time.
Forgive me, I know I’m talking to myself here just to hear how it sounds, and feel how it feels, but it’s helping.
I want to have energy. I don’t want to wait another year. The precious, potentially active months and years of my late middle age are ticking away as the interminable negotiations drag on.
Yes, maybe PBS approval will come by April. But who’s to say it won’t be triaged, with the supposedly “well” like me left out to prioritise the heavily fibrotic and cirrhotic? Which exact medications will be approved? Will I have the choice of say, Daclatasvir, or will only the better researched drugs get approval?
And when, eventually, it is approved, it will almost certainly not be completely free. I paid over $400 for the PBS approved Interferon + Ribavirin + Boceprevir a couple of years ago (70 something dollars per script, once per month for 6 months). Will the newer drugs have a larger gap even when PBS approved? Perhaps the financial difference with the buyers club isn’t as great as might be assumed.
Anyway, all of this is from the part of me that doesn’t want to wait. There are other parts…
My advice is don’t wait if there are other feasible options
Get rid of it while you are in relatively good health and can minimise your doseDemand will exceed supply for a long time at best
Screening for eligibility will be extensive and ongoing
You can pretty much sell yourself to the Department of Health for one year minimum
I’m cynical about government run programmes as I’ve done it before and it put me off for life pretty much
i would only do it if imminent death was the other option
To hold down a job and do it – I can’t imagine how it would work.I can relate to not knowing what normal is
i was shocked when i received my liver biopsy results about 10 years ago
it explained my occasional completely out of the ordinary near death hangoversBut looking at other 51 year old blokes around, I think I’m doing OK
i get tired, sometimes bone tired, but i don’t know – doesn’t everyone?In a way, Hep c has ‘helped’ me maintain a healthier lifestyle than I would have otherwise
I need to know my boundaries or I will pay an immediate as well as a long term priceJust as I am currently paying the price for disrespecting my body about 30 years ago
i have given little thought to treatment or doctors for 10 years
But I know the time will come to pay the piper, so i am dreaming of one day being rid of this virus which i understand is slowly killing meI’ve been pretty verbal for the 2 days I’ve been here
It’s good to try and get one’s thoughts in order, especially as I haven’t expressed a thought regarding this virus in about 10 yearsI think this site and initiative really deserves applause
it says a lot about the ‘profit at all cost’ state of this world that it is in danger of being taken downBloot rant over
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