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25 September 2016 at 8:35 am in reply to: EASL Recommendations on Treatment of Hepatitis C 2016 #23266
Just some questions while pondering my future retreatment:
a. This video seems to be saying that retreating with Sofosbuvir and Ribavirin may not get someone with my profile too far?
b. Appears to need Velpatasvir aboard as well?
c. the caution part in one slide 34 mins into presentation for difficult to retreat patients – what ‘close monitoring’ is required??
Hi splitdog,
I will pm you the details.
Jeff
beaches wrote:May force be with you m8
I always feel a bit insensitive when celebrating on the forum, knowing that I could easily be in your shoes.
Genotype 3 is a bugger to treat but thankfully the research is moving along quickly.
Hopefully you have got it this timeThe good outcome posts keep my hopes up, and while it is not particularly ‘I’ that is winning the battle right now, it is ‘we’, and that makes me feel good too.
Jeff
21 September 2016 at 6:13 am in reply to: How Big Pharma Pressures States to Pay for Pricey Pills #23171Gaj wrote:Interesting question J,
Overall though, that works out to less than A$16k per treatment assuming we get the full numbers treated and as low as A$4.5k if we manage to treat every one of the estimated 230,000 with HCV in this country. The latter being an unlikely but worthy goal.
(* I believe that the improved access/pricing situation in Australia, while no doubt due to some hard headed negotiations by our government, was enabled because of some very effective grass roots advocacy for generics by a couple of Tasmanians and some NSW pharmacies that definitely were not funded by big pharma )
Hi Gaj,
A part of me (near my back pocket) thinks that if the government spent my hard earn’t tax money more wisely, they could even reduce this bill further, say to $1600.00 per head, by buying generics.
Could not agree more about the Tasmanians and New South Welshmen.
Pity Gilead does not have the patent on nuclear weapons and the like.
Yours
J.
Saw the specialist this week and back in the race again popping pills from Monday next week.
I have been following many posts about SVR 12 and 24, and UND at EOT, but quietly in doing so. Must be a symptom for me to go all quiet after finding HepC is detected again.
Often thought I should be making congratulation type comments but have left doing this to the usual suspects on this forum. It is interesting for me the difference it made seeing others pull through though, like even though my little part of the world had turned to shit, there was still something good happening.
Fitz said: “We’re all here in your corner!” and I have always felt that even having Hep C has it’s redeeming points – meeting lots of people willing to support each other.
yours
Jeff
21 September 2016 at 1:25 am in reply to: How Big Pharma Pressures States to Pay for Pricey Pills #23160mgalbrai wrote:This doesn’t surprise me a bit. People (like me) in the US are howling about their insurers not covering these outlandishly expensive drugs when they should be complaining about the manufacturer charging these ridiculous prices.
If insurers (both private & government) are forced to pay Gilead’s ransom, the cost will be passed right to their clients the next fiscal year in the form of premiums & taxes.
In the end, it only seems logical that the government pay Gilead the big bucks since the same government paid to research and develop its flagship product, sofosbuvir.
What a mess.
Thank God and James Freeman for generics.
mInteresting situation now for us in Australia where the meds are PBS listed.
Moral question:
“Do I pay the PBS price, that is not very much if you are working, and let me and my fellow citizens fork out the rest through taxes, or do I pay significantly, but not extravagantly more, for generics?”
The answer in all commonsense and justice is use the PBS, but it’s still something difficult for reasonable people to get their head around I should think.
I wonder if the high paid ‘executives’ of big companies burden themselves with these types of questions?
J.
20 September 2016 at 11:25 am in reply to: How Big Pharma Pressures States to Pay for Pricey Pills #23149didn’t happen to donate the pills as well, did they?
J.
Hi Mike,
I read the Hepatitis C Drugs: Is Next Generation the Last Generation article and felt good.
I read the Letter to Gilead Sciences on attempts to remove generic sofosbuvir from Ukraine and felt pissed off.
I read the Effective Antiviral Treatment Reduces Fatigue in People with Hepatitis C and felt validated now that my old friend fatigue is back with a vengeance following treatment failure.
I can cope with 3. and feel good in regard to 1., but still don’t understand (referring to 2.) why some people in this world do not get to a point where they have had enough to eat from the riches of the world, and put their knife and fork down, and leave the table.
Yours
Jeff
“Individual relapses are heartbreaking, and to be frank I admire the stamina and fortitude of those doctors who had to treat using PEG/Riba given the much lower SVR rates, but to my eyes the rebels have been well served by generics.”
I did imagine an ever so slight look resignation and despair with medicos that had treated me with this stuff – the look of someone chasing their losses on a poker machine and not catching up.
That said though, relapses on generics have proven to be a bit of a lousy time for me, but there was not the ‘thank God that’s [interferon/riba] over; I can get back to actually doing my work again” aspect about it.
Appears from Dr Freeman’s post I am a 14 percenter?
Jeff
Hi Sven,
I was happy to feel good for 24 weeks and grateful for that. The relapse is not good news, but the 24 weeks were.
Definition of ‘feel good’: Not feel like a lethargic blob that mainly got out of bed in the morning to have breakfast with the intention of returning to bed ASAP.
Jeff
I can’t remember with the funding for treatment in Australia, whether when the costs of medications reached a certain point, there was no further cost to the AUS taxpayer (me being one)??
Sorry if this is a dumb question and has been well covered before, but I think following relapse I am in brain fog territory again – not necessarily a bad thing with the way things are going at work at the moment.
J.
Hi JM,
happened to me too and I found it a bit of a low point.
But also, I was and am thankful for the experience of some 24 months of feeling well and determined to be this way again soon.
All the best with your journey,
Jeff
rohcvfighter wrote:Hi Peach,
That’s a very good question.
The “traces of HCV” after SVR made someone working in the medical system tell me that I will never get rid of HCV, no matter what treatment I will take (with interferon or without it)…I am interested as well in finding out the answers to your question.
Cheers
RHFSounds really positive; did they explain how they arrived at this conclusion? Did they means the antibodies?
Jeff
Hi all and anyone,
saw my specialist last Monday this week and will see him in a few weeks to discuss re-treatment.
Seems DAA’s are very much on the agenda now. Had to chase up the ultrasound which was not copied to him.
The ultrasound is fortunately ‘not remarkable’ so another wait until seeing the specialist again.
Seem to have that old feeling again – lethargy in the main, as well as feeling down in the dumps.
BUT, then again there is re-treatment.
Yours
Jeff
P.S. thanks to Dr F. for the private email following me up.
Serg wrote:tweakmax wrote:just read the updated aasld guidelines 7 july 2016. Sof+vel+riba for 24 weeks is good for retreatment, regardless of ravs, according to studies by prof gane.
Please be careful there – this study supports 24 weeks of sof/vel/rib after failed 4-12 weeks of NS5A (vel) containing regimen – http://www.natap.org/2016/EASL/EASL_11.htm .
We need data from studies about retreatment with sof/vel after failure of 24 weeks course of sof/dac or sof/led. If such data will be good, then sof/vel generics may become “second line” therapy for relapsers after 24 weeks course.[/quote]
Hope so too.
Sorry for what happened Coral and all the best for a second go.
You notice any change in well-being during the later stages post EOT??
Yours
Jeff
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