TOPIC:

Hi Alsdad,

Alsdad wrote: 'market driven' should never ever be the main factor in curing diseases.

It appears our philosophies aren't too different in this regard, assuming the emphasis is on the word "main".

.

Alsdad wrote: PLCs in the pharmaceutical industry should be heavily regulated, by definition.

Okay, this is where we differ. I have yet to see a heavily regulated industry anywhere that is innovative and looks to the future. Heavy regulation and presumably price control in the pharmaceuticals field would see the venture capitalists funding "exciting new opportunities in the hand held personal computing devices field" or similar. Schinazi wouldn't have the funding to be setting up research companies like Pharmasett. The R&D would all be occurring in shoestring budget labs at Gilead, etc. Whose own research was going nowhere and driving their share price and thus funding abilities ever downward until they lucked onto Pharmasett.

My argument is that we live in a modern market driven economy which while not ideal, particularly from a health perpective, is the reality and probably more conducive to advances in medical research than a heavily government regulated economy. Allowing this, the market driven economy responds to $ first, second and mostly third. To control it's excesses it is necessary to find a means to stem the flow of money to those exhibiting or contemplating the excesses. Competition and bad publicity are the two most effective means of achieving that end.

G

Nope. Don't agree with you at all G. Some industries have to be heavily regulated by necessity. The arms industry is one, for it's own reasons. The pharmaceutical industry is under-regulated (but heavily protected), and we see major debacles like Sovaldi and clowns like Skreli.

Heavy regulation never stopped companies from making vanloads of money. They just have to do it the correct way.

Hi Alsdad,

Let's agree to disagree on the means to ultimately control the excesses of the pharmaceutical industry.

But I believe we can both agree on the need to get information and support regarding access to affordable treatment to as many people with Hep C as possible and can work together to spread information about the various means currently available such as FixHepC, Greg Jefferys, Killthedragon and other reliable, trustworthy self import sources as and when they develop?

Best wishes

G

Bottom line: not one single person in the world should die because they can't afford the medicine that will save them.

Medicine is like food, water and, in the words of Salk, the sun-without them you die.

I wonder how many people have died of starvation while this was being written? Or, from lack of safe potable water. Those deaths should not be happening, but the world is a messed up place.
Selling life for a price many people can't afford to pay.
Sounds like a movie plot: "The Medicine Games".
Mike

mgalbrai wrote: Bottom line: not one single person in the world should die because they can't afford the medicine that will save them.

Medicine is like food, water and, in the words of Salk, the sun-without them you die.

I wonder how many people have died of starvation while this was being written? Or, from lack of safe potable water. Those deaths should not be happening, but the world is a messed up place.
Selling life for a price many people can't afford to pay.
Sounds like a movie plot: "The Medicine Games".
Mike

The reality contained in your words are quite frightening, thinking about it makes me mad or want to cry.... both even.

Here is some number-crunching for the UK, but it is not intended is a criticism of the UK's NHS. As before, this kind of calculation is only necessary because of Gilead's price-gouging.

And I'd just like to add it's nothing personal. I am sure that John C Martin and the rest of his team are really nice folks if you know them personally. But for the first time in my life I find there is a bunch of people in this world who I wish will rot in hell.

So anyway, here goes...

...I am still trying to get my head around the number of people with Hep-C who are actually getting treated with the new DAAs from Gilead, or who have any chance of getting treated soon through their national health services. We all now know that Gilead are guilty of price-gouging on a global scale. But what is the scale of the problem in human terms?

I have already posted some number-crunching on this, but I suspect I am still over-estimating the percentages Hep-C victims who are actually getting treated. Since I'm from the UK, let's start again from there.

In June 2015, NHS England announced a special budget of £190 Million for antivirals for Hep-C

www.england.nhs.uk/2015/06/10/patients-hep-c/

At around £50 000 per treatment, this will pay for about 3800 treatments. The web site announces "Thousands more patients to be cured of hepatitis C", which is very positive...

In Scotland, the Scottish NHS are paying Gilead £22 Million for Harvoni.

www.publiccontractsscotland.gov.uk/searc...w.aspx?ID=JUL214258#

This is estimated to treat about 501 people (costing about £44 000 per head):

www.heraldscotland.com/news/13205038.Hun...the_NHS_in_Scotland/

and the headline is "hundreds will benefit as Hepatitis C 'cure' is approved for use on the NHS in Scotland". Since population of Scotland is about 5 Million, and in England it is about 53 Million, this is in fact a one-nil win on spending for the Scottish Team (but only after extra time to do the math). Again, quite positive...

So lets put the two numbers together: 3800 + 500 = 4300 UK citizens likely to get treated in the next year. From the numbers from hepcoalition.org (see my previous post fixhepc.com/forum/media-news/396-worser-...scandal.html?start=6), the UK has 659 032 infected people. So the actual rate of treatment in the UK is more like 4300 / 659 032 = 0.65 % of people in the UK with the virus (which is half of my previous estimate for the non-USA "developed" world).

Now it is hard to say exactly how many people in the UK are seriously ill or dying as a result of end-stage liver disease caused by Hep-C. Still, according to some figures from the British Liver Trust, 16 000 people in the UK died from liver disease, of which only about 4 500 (in 2007) were alcohol-related. OK, not all of the rest were due to Hep-C. But the further down the page: "The number of people with HCV-related cirrhosis is expected to more than double to 8,280 by 2015".

www.britishlivertrust.org.uk/about-us/me...about-liver-disease/

So the point this post is to highlight the fact that the UK is currently treating about 4 000 Hep-C patients with life-threatening cirrhosis, while the number of new patients arriving at this level of severity is over 8 000 per year... Do the remaining math for yourself!

Conclusion #1. Despite best efforts, the UK is going no-where fast on fixing Hepatitis C.

Conclusion #2. In the UK, only people who are almost dying of Hep-C are getting treatment.


Conclusion #3. In terms of people: 659 032 - 4 300 = 655 000 (approx). The real UK headline should be: over half a Million people in the UK are NOT getting treated for hepatitis C thanks to Gilead price gouging.

Conclusion #5. If you are F0, F1, or F2, and your doctor tells you to wait, forget it. At current prices and current treatment rates, the queue in front of you is getting longer. As far as getting treatment through the NHS is concerned, you are "F-ed".


Conclusion #6. If you have Hepatitis C, and if you can afford it, don't wait! Get onto fixhepc.com now and get yourself treated now!

Those figures are quite sobering indeed and they only reinforce my view that widespread treatment of this disease won't happen any time soon. Anyone who thinks otherwise needs a reality check.

cheers

You said it Paul. Yet the clinics are still hanging onto the fiction of universal treatment, against any even vaguely logical measurement of facts

Conclusion #5 was the kicker for me. Once I realised through the years of continually instructed waiting that even when/if approved, I'd be at the bottom of a 200,000+ strong queue...and one which is growing all the time.

Conclusion #5. If you are F0, F1, or F2, and your doctor tells you to wait, forget it. At current prices and current treatment rates, the queue in front of you is getting longer. As far as getting treatment through the NHS is concerned, you are "F-ed".

My chances for treatment would have been pretty much nil, had I not been given the chance

Whatever methods are used to curb Extreme Capitalism, whether they be market driven and/or government regulated, those methods will still be subverted by Corruption, which has no political preference. Corruption and Greed, including Corporate Greed, are what is rotting the system from the inside out. I applaud anybody who has the courage not just to snipe at the easy hate target (Gilead) but to turn their focus to the much harder (and more scary) targets such as the politicians, the lobbyists, and the so called democratic institutions (eg. the NHS) which exist to champion the Public Interest but instead have their noses firmly in the same trough as Gilead.

That trough would be the one filled by the citizens of all the countries which are currently being gouged by Gilead. You could say that it is like a permanent bailout fund for all the spineless governments who have capitulated to the ridiculous patent laws which Gilead is still allowed to hide behind despite its flagrant breach of the spirit and intention of those laws. Those patent laws are not working. They must be revised.

By the way, I don't know a lot about the Australian PBS but I'll just say good for them that they have held out against Gilead's pricing. OK, so not good for them that they are two faced about it and lie to their citizens about getting the drugs while telling them to wait some more. But hey, they at least stood up and said NO to Gilead. The corrupting fingers of Big Pharma didn't reach so far into Australia yet that they rolled over, took the bribes and added their noses to the trough. If every country had done that, just told Gilead to take hike, then we wouldn't be where we are now and we'd still have the generics.

But hang on. That permanent bailout fund is not actually permanent. Wait till the cures for Cancer, Dementia, all the most feared diseases are found. Wait till Pain can be erased without drugs. Wait for more very desirable developments that are coming out of the biotech revolution in the not too distant future - at a price. The people currently gorging themselves in the trough don't have all the time in the world. There is coming a tipping point when the Civil Unrest caused by the rationing and deprivation of these life-enhancing medical developments will become such that the whole house will be brought down and the trough with it. That event will be good for nobody. Gilead's MO is not sustainable. Either the corruption and greed is curbed by the participants, (and that includes the vote-hungry politicians), or it will be curbed for them.

dt

True, DT. The PBS has held out against Gilead's (at least initial) pricing, otherwise a deal would have been struck by now. So I've heard they are attempting to negotiate one along the lines of what was brokered by France ($50-60K, instead of approx $100K) but if you believe the official spin that treatment with be universal, then whether it turns out to be $20 bil or 11 bil pricetag makes little difference - neither are in the slightest bit affordable, or thus likely to happen.

Interferon treatment costs roughly the same per patient, but the nasty sx profile and relatively low cure rate means the percentage of people treated has been minimal here, around 1-2%. Extrapolate that to the new DAA's where people would be caught in the stampede to be first on the line lol...and there is no doubt it will be triaged here, as has been done in every other first world country.

Just a terrible position that due to all the financial wrangling & the PBAC's insistence that tx be afforded to everyone, those who are sickest have had no help, and 2 aussies continue to die every day.

Great discussion right here and thanks. So if we take this upstream a bit and examine what you both have articulated throughout 'regulation'. It is my opinion from truckloads of evidence that the regulatory body is broken and corrupted. Now how can we expect the corrupt souls with the FDA create real wealth if we over regulate. Under regulation serves these folk well.

And if there is agreement on those observations? Then the FDA sits alongside the CIA, ASIO and MI5 as beyond reproach. There is more than one level beyond government has this license. Banking, pharma, oil, heroin and as you stated arms/weapons etc. Em

From my 12/7/15 HepMag post where their motto is "Wait":

You are right Westy.
He is a true St. James in my book. Just pure, simple compassion coupled with desire, and ability. I honestly think he and his vision will deal the death blow to the absurd prices being charged for HCV treatment.

On absurd pricing, since we are going to see much more of this as diseases are treated at the genetic level: the government (FDA) needs to work with the company on a reasonable pricing policy before granting approval. Simply put, if its a breakthrough drug, there must be a great need for it. Where there is need, you will find greed lurking nearby. We need to learn from the Greediad experience. Once the horse is out the barn door, its hard to stop. You need to put a halter on that beast before you open the door.
Coach Mike

Those moderators over there make Neville Chamberlain look like a warmonger.

Mike

mgalbrai wrote: From my 12/7/15 HepMag post where their motto is "Wait":

You are right Westy.
He is a true St. James in my book. Just pure, simple compassion coupled with desire, and ability. I honestly think he and his vision will deal the death blow to the absurd prices being charged for HCV treatment.

Coach Mike

Those moderators over there make Neville Chamberlain look like a warmonger.

Mike

Westy is me Coach Mike

Absolutely right Mike. It's time to get to the details of where checks and balances could be brought to bear, and the FDA is one of those places.

Another place would be the revision of the patent laws. There needs to be a section which clearly describes what is fair application of the patent laws and what is a violation. Companies using the patent laws to protect their price gouging while putting lives at risk need to have their patent privileges revoked and there should be a procedure in law to make this happen. Some countries are already trying to charge Gilead with violation of patent but they don't seem to be getting anywhere fast with that, so I surmise that it needs to be easier.

Emilio, spot on. There are many layers to this cake. The most powerful hands at the wheel are nameless and faceless. There are organisations that I would be too scared to mention if I even knew anything about them. For some, greed for money is not their ultimate goal, it is greed for power. For some, it might suit their purposes to have a running epidemic of hepC as a means of population control. Who knows what goes on in these circles. Nevertheless we must keep on demanding transparency from within the places that we can see, where the levers of power could be used to redress the balance between Corporate Greed and the Public Interest. I think that identifying these places here is helpful and appropriate to the cause of preventing unnecessary deaths and new infections of hepC.

dt

P J!!!!!!!!
My Man!!!!!
We can script a lively, informative narrative over there.

Thank you.
Mike