Forum Replies Created
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dointime wrote:
……..One minute we can’t get our hands on the drugs for love nor money, next minute we have an oversupply from every corner, including our ‘legitimate’ sources who have been nothing but a source of uncertainty up until the point where we give up and order the generics. Does that action somehow open the floodgates on some mystical plane to make our docs and insurance cos. suddenly bend over backwards to cough up the drugs that have hitherto been harder to extract from them than blood from a stone?
dtI won’t suggest what each of you should do as that is a decision you must make for yourselves. However as food for thought on the above quote:
Imagine you are on the board of a large insurance or medical corporation. Your job as a board member is not just to make a profit for the shareholders, it is to grow that profit each and every year. There are a few ways to do this including cutting/minimising costs as you have successfully been doing (especially with all those publicity shy hepers) but the real growth is in an expanded customer base which you have been instrumental in achieving and for which you have been well rewarded.
But today you are staring out the boardroom window at the dark clouds gathering……..you can see the storm of bad publicity that is coming when cured and no longer shy ex-hepers start telling the press that they cured themselves after your business(XYZ Corp), who they had been with for 30-40 years, repeatedly denied them treatment until it would have been too late. Now, you didn’t get where you are by being stupid……so you are pondering how many “not too late” customers you need to treat to convince potential new customers that you will look after them better than your competitors……thus growing your business faster so the shareholders will continue to reward you.
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
Thanks for that link Miko3, a different trial to previously mentioned but interesting initial results especially considering decompensated liver disease and what look to be relatively mild sides (Adverse Events). Do you know if SVR12 or 24 results have been published yet?
Ah, just saw Dr James comment on sim availability and hopefully that will change soon but think I’ll keep going with current plan.
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
Just a caution that the sof/dac/sim arm of this trial (reported in AASLD LB #23) comprised 6 people from the easiest group to treat and they were further selected as being in the 66.7% with the highest RVR during the initial 48 hrs of the trial. So, promising for the future!
And I do believe that we will hear a lot more about triple DAA treatments and hopefully they become the “silver bullet” for this horrible disease. The idea of fast, sides free treatment is fantastic!
OTOH as of now, extended treatment +/- Riba has been shown to improve the odds in difficult to treat cases such as those who have relapsed and particularly those with high fibrosis/cirrhosis.
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
Q
”James-Freeman-facebook” wrote:The side effects people got on PEG/Riba may have been more PEG and less Riba than we thought. I have a good dozen patients who are relapses telling me it’s much easier than they expected and their numbers look good.
Then again I just took one patient off Riba because after 18 weeks he was getting sick both on the numbers and in spirit. He’s feeling much better now and we are getting some blood cells back.
These two comments are much in line with the discussion I had with my hepatologist about suitable treatment for myself.
For the first one, I always thought the sides seemed to cycle around the weekly injection, not all directly afterwards but still cyclic rather than constant as you would expect with daily Riba.
And as I have cirrhosis and will be retreating the recommendation was that 24 weeks looked the best option, hitting it hard from the start with the view to going full term but the possibility that Riba be cut short if I can’t tolerate for numbers (or I guess spirit). I agreed this as my best option for guaranteeing success.
But I’m not sure how this translates to SShady43 without cirrhosis as I felt my specialist seemed to think Riba’s effect was at least partly based on it’s ability to better impact the virus in scar tissue, etc. (I hope I’m am paraphrasing him correctly here.)
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
Hi Miko3,
I feel your frustrations and anger, but believe they are misdirected here. This isn’t about nationalities or even political systems and calling it for that can only be devisive. From what I’m aware both our American and Chinese hepc+ friends (some of whom are members here) are often actually in a worst situation than we Aussies and Kiwis are with regard to support and treatment.
The real issue is the greed being shown by big pharma which in some instances, yes, may have it’s corporate HQ in U.S……….. or Europe …………or wherever they can get the best tax deal.
Rather than your suggestion, I would like to see citizens all over the world working together to put pressure on their respective governments to tell big pharma & it’s shareholders……ENOUGH!!!!
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
Some sites now remove dot type stuff also as they see it as circumventing their no links rules.
Perhaps a warm congratulations to Pam (or whoever), a comment about how expensive the drugs are and how that places them outside the average joe’s reach and then just a further comment about some people in australia setting up a buyers club to purchase hep c drugs at better prices. So no direct or indirect links at all but provides enough information for people to google for themselves. Sow the seeds and some will grow.
Edit: italics just to show the key words to include for a successful search, don’t use in your comment.
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
Thanks berrinice, hadn’t thought of that but something I also need to know for when my meds arrive.
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
