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Searched for: treatment
06 Nov 2015 17:45
"Hang-gliding without a parachute" Haha I like that!

Thanks Paul and emilio. Honestly yeah I think that is a pretty sound approach, I'm not expecting much if any real issues but if the hospital can do the necessary tests etc it saves me having to doctor-hunt for someone who is willing to take up the bat. I've also got a secondary condition which has suddenly appeared, which I've gotta find out if it would preclude starting treatment - and my current doc doesn't seem to have nearly enough urgency on that IMO lol
Category: Q & A
06 Nov 2015 15:43
Zhuk,Your GP is a cowardly whimp.As for saying she doesn't know enough about the medications,thats crap,and she shouldn't be practicing medicine.It's got nothing to do with her insurance.
Doctors have a computer on their desk with instant access to all the latest "How to treat"Information.And they are all very aware of the generic scenario that is happening.
One suggestion I might make, is to find out which doctors members of the Gay community who have HIV are going to.They have a knack of finding out who is genuinely on their side.
Generally such doctors are likely to be more compassionate,better informed,and are less likely to be adverse to generics.
Many go to conferences on HIV which often include HCV as treatment mechanisms have a lot in common.
Just look for a new GP Zhuk.Sit down and explain what you intend to do,and if there is one iota of hesitation on their part,
get up and walk out.You will find the right one sooner of latter and be very grateful when you do
Good luck.
Category: Q & A
06 Nov 2015 13:20
Yep, I think so too :) I'm very lucky to be reasonably minimally affected after having had the virus 27 years now, and the likelihood of public treatment being extended to those in my position is pretty low, no matter what magical rabbit the clinics assure us is going to be pulled out of the Ministerial hat any moment now heh

As it happens, I had to ring up the clinic today for my VL results (which no one has ever bothered mentioning before) and I thought I may as well put the hard word on the doc regarding if they would agree to monitor me if I sought treatment - remarkably she said yes! although they warned me to be very careful and couldn't condone such a decision...hey I understand that. But it wasn't a knockback by any means.

But yeah - I call that a win for sure! Looking at how other Govt centres people have mentioned here have reacted, definitely. Its gotta be a tough field to work in (bit like the chronic pain docs - they know they can't cure you, just help you live with it)

However here is the one rare chance in medicine to potentially cure people, which is pretty bloody amazing.
Category: Q & A
05 Nov 2015 23:23
Hi everyone

Just like to get some feedback on the question of monitoring from those who are currently in or have completed treatment..

Understanding the the new antivirals are far better tolerated than the old regimens, have people found that it is more a matter of just self-dosing and turning up for the stipulated blood tests? Or is a bit more intensive monitoring/support needed?


Wondering after my GP visit today (first chance to talk about treatment) where the doc told me she doesn't feel comfortable about any "support" role past just basic blood testing as she doesn't know enough about the meds...and that looking over a copy of the required testing list she wasn't sure she would be able to organise some of them anyway.

She suggested I should go back to the hospital clinic, - where last week they told me to forget all about generics and wait for the new meds next year lol - but they possibly might have a different opinion if I explain that the drug procurement process has kicked off now and they are on the way. I'd rather get all this cleared up asap so there is no uncertainty when they do arrive...if the hospital declines I'm not sure where to find a compliant GP prepared to take on the unknown.

.
Category: Q & A
05 Nov 2015 15:57
Hi Felix, Thank you for the encouragement. Are you from the USA too? Are you getting treatment?
05 Nov 2015 15:20
I'm 5'6" , 79kg , fit for a 66 yr old.
15 days of Sof, Led & Riba 600mg BD
Only side effects would me just a little insomnia .
But I seem to have less body aches after starting treatment .
Category: Patient Stories
05 Nov 2015 13:52
I am being treated with generics and monitored by a doctor in a government hospital

my data will be recorded in the government system.
05 Nov 2015 12:25
www.facebook.com/groups/HCV.Treatment/?fref=ts

look for a member call Amrish Mishra. he says he is activist from nepal

the activist who brought me twinvir is shiba phurai
Category: Patient Stories
05 Nov 2015 08:54
Good for you lizziechan. Agree with you, why wait until you continue to feel worse, and end up with a less favourable prognosis for treatment? After lying pretty dormant for so long, my symptoms seem to have ramped up a bit in the last 2-3 years. The only other option if they eventually get onto the PBS is wait for your disease progression to worsen sufficiently to the point of being eligible for treatment. I can't see how anyone could believe this was tenable when there is an alternative.

Definitely onward and upward...all the best with your treatment lizzie.
Category: Q & A
04 Nov 2015 20:19
About Big Pharma Pricing

Dear Australian Decision-Makers,

Ancient chinese proverb: Know Your Enemy.

Here is recent analysis by Reuters (25 March, 2015):

"CEOs at large U.S. companies collectively realized at least $6 billion more in compensation than initially estimated in annual disclosures in the five years after the financial crisis first hit...

...An example is John Martin, the CEO of drug maker Gilead Sciences Inc, who has become the best compensated executive of a major U.S. company since the crisis, when factoring in stock and options.

He realized $400.6 million in total compensation from 2009 to 2013, according to the Reuters analysis of the nearly 300 CEOs tracked by Equilar. That is poised to top $600 million by this summer, mostly because of additional exercises of stock options...

...Gilead had estimated Martin's compensation totaled only $75 million over the five years from 2009 to 2013. But Gilead's shares have climbed nearly 300 percent since the end of 2008 while net income almost quadrupled to $12.1 billion in 2014, fueled by sales of its hepatitis C drug Sovaldi. The company declined to comment for this story."

(www.reuters.com/article/2015/03/25/compa...#MHKmYx5dbvOTAcar.97)

Here is a link to the Equilar data:

people.equilar.com/bio/john-martin-gilea...ry/6819#.VjnGZpe37z8


Here is an excerpt from FiercePharma (25 March 2015):

"Of course, investors aren't likely to complain about Martin's payoff, because they've seen big payoffs, too. And with the company's hepatitis C franchise jet-fueling revenue past $20 billion in 2014, the gains continued. Gilead hasn't filed its proxy yet this year, so we don't yet know how his pay package fared in that record-breaking year."

(www.fiercepharma.com/story/600-million-m...-estimate/2015-03-25)


Here is a perspective from Al Jazeerai (21 November 2014):

"Gilead’s price gouging has generated international outrage. In response, the company signed an agreement in September with seven Indian pharmaceutical producers, allowing them to sell generic versions of sofosbuvir and ledipasvir in 91 countries. It is hoped that competition among the Indian companies will result in downward pressure on price so that more people can access the medicines.

While many health advocates, patient groups, media outlets and academics have championed the agreement, it may actually do more harm than good. Gilead portrays itself as a leader in medical innovation, but its real advance is in developing a creative business strategy of managing the competition — and gaining a public-relations boost while doing so. Specifically, Gilead’s agreement quietly undermines India’s patent laws and controls the country’s generic producers. This in turn threatens to reduce competition needed to keep medicine prices low and could ultimately shrink the global supply of affordable medicines."

(america.aljazeera.com/opinions/2014/11/p...cals-gileadhepc.html)

Here is some analysis and recommendations from Medecins Sans Frontiers" (19 March 2015)

"Medecins Sans Frontieres urged the generic companies to reject a highly-controversial programme that could compromise people’s treatment and confidentiality. The programme – which places multiple restrictions and demands on people receiving treatment – is designed solely to protect Gilead’s commercial interests, and is unprecedented as far as MSF is aware...

...We’ve never seen anything like Gilead’s anti-diversion programme before, where a company can potentially violate patient confidentiality and compromise treatment outcomes in order to protect its profits...

...MSF today also released a technical analysis of Gilead’s voluntary licence agreement with Indian manufacturers, which excludes 50 middle-income countries, where 49 million people with hepatitis C live, including Thailand, Brazil, China and Morocco...

...Gilead is putting in place a ‘tiered pricing’ strategy for the middle-income countries excluded from its licence, which will likely result in high prices for these developing countries that could range from $2,000 to $15,000 or more per three-month treatment course. Research from Liverpool University shows that sofosbuvir could be produced for roughly $1 per pill, or $101 per treatment course.

“We’re seeing Gilead trying everything it can to squeeze every last drop of profit out of some middle-income and high-burden countries, and millions of people with hepatitis C will have to pay the price”, said Malpani. “We are urging Gilead to make urgent changes to its company policies and its licensing agreements so that millions of people with hepatitis C are not left behind.”"

(www.msf.org/article/indian-generic-compa...i-diversion%E2%80%99)


Modern business advice: Caveat Emptor!
04 Nov 2015 19:47
Hi I to am in New Zealand as long as you have a script for your drugs there's no problem getting them courier over,there will be just a little duty to pay .i got sofosbuvir from India and daclatasvir from mesochem in China it was $147 in duty.im 16 weeks into treatment undetectable in4 weeks 1a non responder in 2010
Category: Q & A
04 Nov 2015 18:58
Unfortunately Sabrecat I do have cirrhosis early f4 around 23 fibroscan. I will know in a couple of weeks the outcome of the ct scan due on friday.
What the.... was for those poncy decision makers.
I am not happy with the PBAC either cause they refused to list treatment recommendation in July 2014 trying to play hardball with Gilead. That got them/us nowhere. In April 2015 they recommended it for listing, and there was no change in circumstances with Gilead - price still high. PBAC achieved nothing from 2014. The real problem is nobody with tight connections to the Liberal Party establishment had the hard to treat virus. Unlike Ron Walker did with stage 4 melanoma. This melanoma was listed without trials done in Australia, it was straight from the USA. Half their luck.
04 Nov 2015 18:13
Hi Berinice,

we sound a bit similar in being Genotype 3, and me being a non responder on mono therapy in 1998, and I suppose in my case, a "non-coper" with combination therapy in 2000. Following that, the sit back and wait started until an ultrasound found a HCC in 2012. Got that under control with a liver resection, and then, more sit back and wait.

I can see the problem with having drugs approved for the PBS but do not see any sense in waiting around for my Government to bother with Gilead (were not they involved with some scandal associated with Donald Rumsfeld and flu vaccinations?). I suspect this waiting will only see my liver move from scarring to cirrhosis making the length of, and therefore the cost of treatment, MORE.

I found the treatment for my HCC somewhat 'major league', but I am still around and hopeful that getting virus free will give the old liver rest for a while. Maybe someone who knows more may correct me, but I understand there is LESS chance of getting a HCC if you don't have a scarred or cirrhotic liver, don't have a fatty liver, and don't have the HCV virus chewing away at it.

What the fuck would I do? With respect to the HCV virus the same as you did!

Best wishes.
04 Nov 2015 16:24
Hi I am a patient at the St Vincent's clinic and have found them great. However my Gp told me they need to be extremely careful about how they approach this whole buyersclub thing. Due to hospital protocols. GPS have no such restrictions. That would explain why they aren't prescribing.

That said I am sure they would no refuse treatment if you were to organise you own medication - but probably wouldn't organise to do so in advance (IMO).

My Gp was impressed by the amt info available on the easl site and on this one for doctors, if that is any help......
Category: Q & A
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