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zhuk wrote:
I thought the PBAC recommendations were that the DAA’s wouldn’t come under the s100 scheme? Did something change?
Sorry, its a naming issue. The recommendation is for s85 but we’ve always referred to the doctors as “s100 prescribers”. We might have to say “hep C prescribers” instead. But you raise a good point, this needs some clarification.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!flyingfox66 wrote:So does that mean we are going to have to wait for our GPs to do this course before they can prescribe our DAAs?
This could drag things out considerably!Go to the liver clinic
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!klhilde wrote:More than anyone else, it’s the accountants that are pushing for the shorter treatments. With the price of generics that is much less necessary.
Read the trial results for yourself, or read what Dr. Freeman himself has said on the subject in this forum. There are quite a number of incredibly well informed people here … we’ve been reading for ourselves rather than cowering before authority.
I can tell you this for a fact: Four and three months ago respectively, neither my GI doctor in the US nor my GI doctor in Thailand were aware of the differences in treatment recommendations between the US establishment and the EU establishment. I told my specialists what was going on, not the other way around.
Things are different in Australia. Our Government pays per cure regardless of the length of treatment so what the accountants say makes little difference. I don’t know how the US or Thailand develop their treatment guidelines, but in Australia, they are comprehensive, evidence based and published for every doctor to use.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!zhuk wrote:Who would you call a ‘suitably qualified doctor’ though? Apart from the public clinics who have had some experience already with those taking generics as well as overseeing pharma-sponsored clinical trials, and Dr J who would be arguably the most experienced GP in the country re the new meds, most GPs would have little to no experience supervising tx (mine certainly wasn’t prepared to, but I was fortunate my public liver clinic specialist agreed)
GPs are not suitably qualified to manage treatment unless they have undertaken the ASHM s100 hep C prescribing course. Several hundred GPs across Australia have completed the course over the past few years and there is a course running in Sydney in March. It is exactly the same with HIV treatment. Only specialist GPs are qualified to manage issues like drug/drug interactions.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!klhilde wrote:Actually to the best of my knowledge the Buyers Club has never shipped outside of Australia.
It’s my (possibly mistaken) understanding that Dr. Freeman negotiated with MonkMed.com specifically to handle international shipment of the REDEMPTION eTrials meds.I’m more concerned about the website/forum going silent with nobody here to help the new people showing up, and no activity to keep currently active members engaged.
And actually, yes there is still potential need for generics in Australia … we’ll see when the details come out. But I bet many people would pay for their own second 12 weeks of Darvoni to avoid using Riba. And also if the standard treatment calls for 8 weeks people would be fools to not buy another 4 weeks out of their own pocket. We’ll see.
Suggesting that people could /should make their own decisions on what drug combination they need and how long their treatment should last is extremely dangerous practice and is the prime concern in the medical community regarding the buyers club. Treatment guidelines provide indisputable evidence based recommendations on which medication is suitable for patients depending on genotype, fibrosis, treatment history, comorbidity, etc. Nobody should undertake hep C treatment without the supervision of a suitably qualified doctor.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!You are probably right Klhilde, but I think some credit is due to the tough negotiators within Government. Australia has a reputation for tough negotiation and we have seen it before. If the access is available for everyone, as has been described, you have to wonder why anyone in Australia would want to import their own medication after 1st March 2016. Can Australia maintain a buyers club serving the international market?
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!sonix wrote:I’m interested in how it is possible to estimate the number of undiagnosed? I guess you could use a decent size random sample of people and then test them all and extrapolate. But that would cause an analog of Heisenburg’s Uncertainty Principle ie. just doing the test would change the results.
I don’t know exactly, but it is done using mathematical modelling by estimating the prevalence within particular populations and extrapolating that to the size of population. Thankfully we have the Kirby Institute to guide us on this and many other measures of how Australia is responding to hep C
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!The+Economic+Impact+of+Hepatitis+C+in+Australia_FINAL.pdf
Chester wrote:Ok I’ve just read the rest of the doc’s blogpost and I see there is some suggestion the hep c treatments are being funded by the cuts.
But I’m not convinced that’s entirely fair. Maybe it’s the AMA who are using us as political pawns here. For starters, there is the money to fund this that would have previously been spent on interferon treatments. Secondly, if they’re smart they won’t be bothering with a whole lot of tests on hep c patients that are really no longer necessary. For most people, except the borderline cirrhotics, a fibrosure score should suffice to determine treatment length. Saves a bucketload on expensive fibroscans. As we all know, eot PCRs aren’t really necessary. Then there’s all the savings from not having to treat people with end stage liver disease. If you added up all the costs of those things alone, I’m sure it would go a long way to covering the cost of this programme.
The costs are difficult to compare. While the Fibroscan machine is very expensive to purchase, the test is very cheap. PCR is essential because some people will clear hep C naturally, although they remain antibody positive (like we all will). The cost of treating end stage liver disease or a liver transplant is enormous but only a small proportion will get to that stage, even without treatment. A 2012 report on the economic impact of hepatitis C showed that every one $1 invested in hep c treatment now saves $4 down the track, but the costs keep changing.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!Vororo wrote:… No doubt there are many people (mostly F0-F2) who do not know they have Hep-C.
Has anyone seen any figures on this?
Australia has one of the highest diagnosis rates in the world – around 80% are diagnosed. The 230,000 affected in Australia is an estimate but there is a high degree of confidence in the estimate. On these figures, there are only 46,000 undiagnosed. Some of these would be Aboriginal people in remote communities and people from non-English speaking backgrounds.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!Gaj wrote:I share your concerns Paul, so we need to ensure that people are aware that not everyone caught it that way and that those of us who did have been typical Australian workers, taxpayers, parents, grandparents and valuable contributors to society in the often many decades since then.
G
Everyone is equally deserving of treatment, even people who used to, or currently inject drugs. There are no undeserving patients and we must be careful not to stigmatise people whose experience is different from ours. We all suffer the stigma of hep C because of its association with injecting drug use so let’s not add to the stigma by using discriminatory language or suggesting that some people are more deserving than others because their experience is different.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!poodle wrote:I understand your point but Iam talking about since fixhepc was started, and encouraging people to help themselves.
Many people do not actively engage in their health care. Helping themselves is not a concept they understand. People like this will need to have their hand held every step of the way and that will be an important role for all of us once we have been cured.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!flyingfox66 wrote:I’ll be very interested to see if Fibroscans are a requirement. If you want one here in Brisbane its either pay up or 6 months wait (and that was before this announcement).
I am also a little concerned as to whether 8 weeks is enough for those without Fibrosis. I certainly have some Fibrosis but not much. There has to be some way of calculating who gets 8 weeks and who gets 12 I guess. And they better not try and make me take Riba or I’ll rage at themAll that said I’ve made the decision to wait and see. Very grateful indeed to James Freeman for making the refund a possibility for those of us who just ordered. Thanks for being such an honourable and courageous man.
It’s going to be a much merrier Christmas in my household.It’s very hard to trust these bastards thats for sure, but I don’t see how they can back out of this deal now.
National treatment guidelines are being developed now and they will make it clear how many weeks treatment you need depending on level of fibrosis, treatment history, co-morbidity etc. Some regimens will include ribavirin, and it is a bitch, but at least it is only a bitch for 3 months.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!flyingfox66 wrote:I really don’t buy the idea that many people won’t want treatment. Of course they will!
They’ll be coming out of the woodwork in droves.
You’d have to basically be suicidal not to give it a go, especially now the community has formed so people can compare symptoms.
I’m not keen on being fobbed off with 8 weeks either.People on this site are not typical of people with hep C. Many people have complex lives in which hep C is just one of a number of problems. Others are still using (or in prison and using) and realise they might be reinfected, or their lives are too chaotic to manage the treatment. Similar treatment for HIV has been available for 20 years and treatment rates are still below 50% in some jurisdictions (even though HIV is fatal for everyone without treatment). The challenge will be to encourage everyone with hep C to be treated, but I believe it will take at least 20 years, a major effort to tackle stigma and discrimination and a huge expansion in models of care.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!If this is correct, they’ve agreed to fund all patients who fall past the $1bn/62,500 threshold…up to the total 230,000+?
Impressive…a world-first negotation re Gilead?
Theoretically, but many of them will not seek treatment right away, or ever, for a variety of health and lifestyle reasons. So they probably wont be spending too much on this. In five years time competition will have forced the price down and it will be a whole different ball game.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR!That’s interesting James, and I don”t doubt you are right, but some drugs are more effective with different genotypes eg Viekira Pak with 1b. Wouldn’t it be better if Government negotiated the best price for a cure for each genotype.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 – awaiting SVR
Currently releasing my inner activist. GRRRRRRR! -
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