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While we hear a lot about there being no triaging of these meds on the PBS, I think we need to consider the situation in public clinics. There are a lot of patients at these with varying levels of illness, some have mild fibrosis, some compensated cirrhosis and some are clinging to the edge of the cliff of liver failure. The doctors and nurses at each hospital can treat everyone by an alphabetical list, length of time as a patient or some such or they can triage, not the medications but their own and the clinics care, prescribing, instructing and monitoring time. As a compensated F4 with HCC history and rapidly declining health, I was told last October that if and when approval came through I would be treated asap but there were others who were a much higher priority than me. I came here.
I would urge anyone who didn’t have at least compensated cirrhosis or other need for specialist and/or ongoing monitoring to consider finding a sympathetic GP. Once you are treating and being monitored by them you can then weigh up whether to totally cancel your clinic appointments or request a quick post treatment checkup to alleviate any concerns or need for further monitoring (the latter is really important if you are F4). After all this is the model that the new system is based on.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
I can tell you what happened with me.
First of, I received my Harvoni yesterday and popped the first pill pretty much immediately
However, if I hadn’t gone to RPA in October, informed them I’d decided to buy generics and asked them for a script or at least to tell me what they WOULD be prescribing me if the drugs were available here, it wouldn’t have happened as quickly.My Dr told me the main reason the hospitals aren’t stocking the drugs is funding, followed by red tape.
My pharmacist told me how much it was costing her to get me Harvoni. She will get the bulk of it back from the PBS but still…..
The govt is paying around $74 a tablet. Do you think that’s a good deal?
The other question is where is that money coming from? Unfortunately funding for Harvoni etc is being taken away from other treatments to fund ours.
I am fully aware that my treatment comes at the expense of people with other conditions, and they also need treatment. I’m doing exactly what the doctors and nurses at RPA tell me. To the letter
Sirchinenge wrote:Shocking to think you’re an F4 and could not access treatment……..
Hi Sir,
I should clarify, that was last Oct when no one in Aust was getting any Sof/Dac/Led treatment unless you managed to get on a trial or were (un)lucky enough to get compassionate access. I was trying for both but when I heard what Dr Freeman and Greg were doing I figured that was going to be a lot quicker!
It was also prior to the gov’t decision to treat everyone, which I suspect would have sped up my priority. But it doesn’t matter for me now, while realising that some can’t afford to purchase even at generic prices, what I paid for my generics was nothing to the quality of life and reduced risk that early treatment has given me.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Ariel wrote:I’m just making an observation about the major hospitals.
Not emotionally blaming or emotional anything
I’m not wired that way
Zhuk I got my script from Sydney I have flown up a few times to see a guy who then was kind enough om receipt of my phone call after the Dec 1 knockback to post a script down to me here.
Re my two friends they’re in Adelaide
It’s their reasons privately that they choose to wait. I’m hoping like many people around the country that the roll out gets rolling just for these type of patients who maybe aren’t as empowered or actually physically able and are psychologically hurt to get the DAAs through their clinics
I don’t have anything else to offer this debate
I lobbied incessantly for the past almost three years and said to the pollies and drug companies.
Let me know what the Sydney vibe is Zhuk just out of interest
Ty
ArielNo probs Ariel, will do
I know that RPA had had reasonably (as far as public hospitals go) extensive experience with patients presenting with their own generics and also clinical trial management, so I’d like to think that they might be proactive with getting the PBS meds out there. Stay tuned.
EOT bloods on Thursday, then a week to wait…its going to be long week too I think lol
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