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.

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

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

https://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.

http://www.publiccontractsscotland.gov.uk/search/show/search_view.aspx?ID=JUL214258#

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

http://www.heraldscotland.com/news/13205038.Hundreds_to_benefit_as_Hepatitis_C__cure__approved_for_use_on_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 http://fixhepc.com/forum/media-news/396-worser-and-worser-should-be-a-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”.

http://www.britishlivertrust.org.uk/about-us/media-centre/facts-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 http://fixhepc.com now and get yourself treated now!

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

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.

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

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