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Abi / enzo - bureaucracy over lives...???

User
Posted 04 Feb 2019 at 06:59

 https://www.telegraph.co.uk/men/active/mens-health/11157638/Prostate-cancer-sufferer-Its-either-buy-the-drugs-or-die.html

 

Bit out of date but wonder if the blanket  refusal is still in place as it looks like a very cruel money over lives decision bearing in mind 20% of men may get a response and a few months to test it would not cost a lot.

User
Posted 04 Feb 2019 at 10:49
This article is 4 years out of date and a bit misleading / emotive.

It is still the case that if Abi fails you cannot get enzo (and vice versa) but that is because trials (most notably Stampede) have shown that once one fails the other will as well. At an average cost of £25,000 per patient it is understandable that enza is prioritised to patients for whom it might work rather than patients for whom it is going to be money wasted.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 10:54
Ah thanks so it is the rationing and allocation priorities that drives this rather than stubborn beauracracy. Nothing is easy is it!
User
Posted 04 Feb 2019 at 12:17
I don’t know anything about rationing and allocation priorities. But we had a number of members involved in the abi v enza research arm and all the data showed that if one fails, there is no benefit gained from the other even though they work in completely different ways.

Sadly, I don’t think any of the members that were involved are still with us.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2019 at 20:06

I can’t say I have felt that there is a problem here. John got Enza just fine, the only criteria were whether he was well enough to tolerate it. We have been told it tends to be better tolerated than Abi and requires less monitoring, abi being more likely to cause liver issues. Make no mistake, these drugs do come with side effects and do not work for everyone. 

Perhaps we are lucky? Most likely doctors are simply following prescribing guidance,  

Devonmaid

User
Posted 04 Feb 2019 at 21:42

@Lynn

The NHS runs on rationing and priorities in general - it has to. It is just not something they freely admit. I understand what you are saying about current research guiding where the resources go - that makes perfect sense in a resource poor environment.

Going off at a tangent...

There are bigger problems in this area e.g. 1) per patient costs of drugs in general, 2) where a drug has proven benefits beyond the range permitted by NICE and they refuse to extend its availability because of "muh costs" and 3) Patent abuse.

The problem is that I do not think they push hard enough on big pharma regarding prices and access to generics etc. Increasing the demand should allow the NHS to demand price breaks but they do not seem to have much luck. Big pharma always claims "muh research costs" but based on research I have done I think that is a little bit misleading. Some interesting stats from some research I have been doing recently (buyer beware):

Pharma companies spend 17% on research (not that much in the scale of things) and costs are exponentially plummeting over the decades which they can tax offset
They can spend up to twice that on marketing - again tax deductible
Over 50% of the revenue for the biggies come from the US and Canada
Average profit margins are 20% to 50%
Average stock return over the last 10 years - 88%

I admit the pipeline for research has an incredibly low success rate (<12%) but the profits they rake in on that are insanely high, even more than Google.

The only reason they do not reduce costs is that they do not want / care / need to and governments may not have the necessary commercial skills and leverage to play hardball at the "corporation as a state" level.

@Devonemaid

I'm glad John got Enza and it had less side effects. You are right about the luck of the draw though, sadly.

Edited by member 04 Feb 2019 at 21:44  | Reason: Not specified

User
Posted 05 Feb 2019 at 16:46
I must admit to finding these leftist rants about "big pharma" tiresome. The pricing reflects supply and demand, based on life cycle costs. As to governments (actually they are not involved) being unable to negotiate good prices, what on earth do you think NICE does? Whilst they negotiate (and it can take months) patients do not get the drugs they need. They are on a hiding to nothing, criticised for delaying access to new, inevitably expensive treatment or yielding to ensure quick availability with necessarily higher pricing. If you look in detail at the NICE methodology, it is very difficult to fault. It is just that to build a case for pricing that suits both the supplier and the buyer takes research, negotiating time and much care.

This is the point at which some clot says "nationalise them" as if there were an efficient nationalised industry anywhere in the world....

AC

User
Posted 05 Feb 2019 at 19:02

Weird but here in France, you can have one or both in any order as the medics see fit.

i just dont understand NICE logic

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 05 Feb 2019 at 19:14

AC

I am rolling on the floor laughing as I am neither left or right wing (I hate a lot of what the extremes there stand for). It would make my mate who is a real lefty's day to hear me be accused of that :)

I have decades in business working in state organisations and ones that operate on that model with a focus on how businesses operate and how (cost) effectively (or not) they run so I am not talking out of the top of my hat.

I am not criticising NICE for how they manage the operational clinical approvals process (I may not be here without it) but I know very well government or government related organisations are on an uphill struggle when dealing with big corporations. I've seen how business run rings around the state on IT projects (particularly tenders) and how many major infrastructure projects go over budget / fail, all for similar reasons. Consider another viewpoint - If a B2B Procument Director allowed its sole supplier to make the profit margins that these guys do, he'd be out on his ear.

I am certainly not suggesting that they stop the operational aspects of procuring new drugs just to save money. What I am saying is that they are in many cases dealing with an effective monopoly so supply and demand power sites with the supplier not the buyer. I've seen little evidence of anything other than a status quo over prices. You can work on better deals and better deal frameworks through legislation and other means in parallel with actually stopping doing the day job.

I certainly don't want anything nationalised - there are far better ways of making improvements.

I'll just go off and sing "The Internationale" now :)

Seriously, you make some valid points and I thank you for them but we disgree that more cannot be done.

Cheers

P

EDIT: I may be a little ranty but it is keeping my mind of Tuesday

Edited by member 05 Feb 2019 at 20:07  | Reason: Not specified

User
Posted 06 Feb 2019 at 20:10
Pete, I do wish you luck for next week anyway! "Big Pharma" is just one of those giveaway phrases for certain political types but if I misjudged you, I am glad to apologise!

AC

User
Posted 06 Feb 2019 at 20:15
AC

Thanks for the good wishes. It is silly but I am really nervous because my life has a habit of flipping between real curve balls and lucky escapes. I don;t know what I am due this time.

Don't worry about the pharma debate. We both discussed it like adults, unlike the BBC, CNN and Fox News :) A lot to understand and no simple answers!

 
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