to think 90000 is a small price to pay to increase people with cancer lifes

[suziepra]

I can't believe the NHS know a drug is effective but refuse to pay it! I don't care how much it costs, print the money and let people live for as long as possible!

I strongly suspect that this has come from the Roche PR machine. Look at how they handled Herceptin. They priced it high, threw out "death sentence" stories and then dangled the carrot to Ministers that they could be the hero of the day by demanding it was used. I think it was Virginia Bottomly (other health ministers are available) who rang the Chief Exec of a Trust at home on a Sunday and said his career was over if he didn't sign off Herceptin. Absolutely appalling behaviour, all so she could be the saviour.

Roche's attitude isn't the standard more ethical way that the rest of the industry works - they've got balls of steel and hearts of ice.

What about dentistry?

A vast majority of dental problems are caused by not cleaning properly- people make a choice not to clean their teeth. I appreciate we already pay but patients on NHS dentistry pay for 50% of treatment charge and NHS pays the rest. Should it maybe be means tested?

And NHS admin, why don't they text me details for consultant appointments? There should be an opt out of getting letters and replace with emails and texts. It's far cheaper and any would prefer it!

Charging for inappropriate A&E attendance?

Doctors definitely shouldn't prescribe over the counter. My GP said he would give me something for my acid reflux, when I unpacked my pharmacy bag at home it was gaviscon!!! A whole bottle and I already had loads of it. I tried to take it back, unopened and they said they'd chuck it in the bin!!!!

Nomama I was so sickened by the sheer ineptitude of the hospitals I dealt with that sometimes I'd blow the whistle on the buyers I saw. I saw one utter dickhead (Hammersmith) who said she "didn't have time" to talk discounts. She didn't get that her fucking arrogance in being "too important to see a mere Rep" actually cost local patients thousands. I grassed the silly bitch up.

And another hospital that just hadn't signed the paperwork for the discount. I signed it myself, in their name.

And another where the accounts department was so fucked it took 6 weeks min to raise a payment for anything, and their account was so behind we started to supply their chemo Cash on Delivery. No idea where they raised the cash.

I did hear the Roche PR rep (she may not have called herself that) on R4 this morning, refusing to acknowledge any points about the high cost of the drug, just saying there were other countries willing to pay for it (and presumably cut down on something else).

I'm sure from Roche's POV, £90k for each patient must be a nice little earner.

When the generics turn it out in India, or the patent expires, it'll probably have a cost of about 10p per tablet, so I suppose they feel the need to make as much money as they can, as fast as they can.

I can't help feeling that we could do with some publicly funded research, perhaps on a Euro basis, where the results could be freely available rather than sold at a thousand pounds for a day's treatment.

notkate, dentistry is means tested. You don't pay if you are in receipt of certain means tested benefits. I have never understood why teeth are treated differently to any other organ of your body though, especially as dental problems can cause heart disease and a dental check-up can spot non-dental health problems like oral cancer. I think dental care should be free at the point of delivery like any other NHS treatment. I realise this will never happen. Same for optician services.

There is a case for prescribing OTC medicines in some cases. If someone is entitled to free prescriptions but needs a drug that is available OTC I don't think they should have to pay. Similarly if someone is likely to need an OTC medication long term and it costs more than the prescription charge I think a GP would be justified in prescribing. Anybody who has had to deal with recurrent thrush while living on benefits will know what I'm talking about!

Pharmagrass your posts are most enlightening!

The simple fact of the matter is that the NHS budget is finite. It cannot be all things to all people and so has to have some sort of way of deciding what it will and will not provide. You might not agree with QALY's- but what would you suggest in it's place? How would you balance the books.

The NHS cannot simply "print money". Nor can the country.

Everyone will think the condition they/their family or close friend(s) suffers from should get more funding to provide any and all drugs/ treatments that may help.

So often cancer gets such massive priority (understandably)- but heart disease, renal disease and respiratory disease can also be terminal or limit quality of life. Giving a disproportionate amount of the NHS budget to cancer services would badly effect the services people suffering from these diseases. Is that fair and equitable?

That's not to say that people aren't right to point out ways that the NHS could save money (better use of resources, less waste and better negotiation over drug prices for example)- of course this would help to some degree, but the problem is far more complex.

To those saying "charge for self-inflicted disease"- well, how would you decide who falls into what category?

There's a large cross over in many diseases- i.e. environmental and lifestyle factors play a part in the development many illnesses- some cancers included (I am NOT saying people cause their own cancer, or any other disease, but it is true that for some cancers lifestyle factors do seem to have a role). Do sport's injuries count?

And what if they can't pay- do you sue them, make them homeless, take them to court for non-payment? Or do you simply refuse treatment?

Notkate you are completely wrong about the split between what the NHS pay and what the patient pays when it comes to dental charges. It never has been a 50% split and since Tony Blair messed around with it cocked it up it has become even more complicated.

Oral cancer is a dental matter. We don't just deal with the teeth - that's why we do cancer checks cos doctors don't spend all their time looking in people's mouths so don't know what is normal and what is not.

Oldfarticus the end result of untreated cataracts is blindness. Not sure what the end result of ingroing nails and piles is/are but I'm not sure these conditions are commensurate. Also not sure that the costs which would result from a lack of treatment can be compared.

Diabetes plus ingrown toenail can get pretty nasty.

My mother was a keen sports player. She had a serious sports injury that has required a lot of ongoing treatment so she can walk. That is self inflicted. Do you think she should pay for her treatment?

I'm slightly horrified that I'm about to have surgery on the NHS at a private hospital which would have cist me £9k. It's because the NHS waiting list is too long. Whilst I'm glad I'm getting this sorted so soon, I do feel a bit guilty about it. Is it the best use of NHS funds?

Robin- really? My DH used to be an NHS dentist and cited 50% ( probably to hush me what he was watching TV) however he went private years ago when they brought out UDAs and ridiculous targets.

A lot of dental treatments are preventable though but I guess you cod say that a lot of conditions- type 2 diabetes, conditions caused by smoking, obesity etc.

I don't like the use of up front costs of treatments being used as the deciding factor about them.

The true cost is the value for money of the treatment - eg, if you do nothing what is that cost going to be?

"Just print the money" right, ok. Cause that won't fuck up the economy

Just print money ??. Jesus. I missed that line!

I've not seen as many instances on the thread as I thought I might, but I knew I would see at least one 'children priority'.

I'm not sure why this would be the case for serious illness. At what age does a child become a priority? Will you shove your granny to one side for a tiny baby who has limited prospects?

NHS isn't supposed to discriminate purely on age, but look at the individual. I think this is a good thing and I already think it's being ignored. My own mother was getting advice to give up line dancing and aqua-aerobics in her mid-50s due to a frozen shoulder Even I asked for sports specific advice in early 30s (due to a work injury, ironically) and was advised that I 'was not 18 any more'.

I think a 2 tier system for cancer is unavoidable. What is a travesty is if we're not providing the same standard of care as other EU countries. As to the rest, with my family history, I'm trying to ensure I build capital. May or may not work, may or may not be needed, but the concern is there.

I'm from the States. I have excellent health insurance through my employer. I pay $15- to see my primary care doctor, $30- to see a specialist, $ 50- for an out of hours urgicentre, and $100- to visit a hospital emergency room. I don't think charges of this sort are unreasonable, and would really help the NHS stay viable.
In any system, the needs of the many should out rule the needs of the very few. £90,000 for another six months is unreasonable.
I also wonder whether saving very small and early premature children(before26 weeks or so) is worthwhile. These children need lots of care. Many of these children have permanent and persistent disabilities that can be heartbreaking for parents.

A lot of the "solutions" on here involve removing the universal aspect of the nhs and/or making it not free at the point of access.

I think that universal healthcare which is accessible by all is a fundamental of a civilised society and has great advantages for society and of course as individuals even the little things go a huge way towards improving quality of life.

I would not wish to see these fundamentals of our health care system changed.

PigletJohn said Roche PR rep (she may not have called herself that) on R4 this morning, refusing to acknowledge any points about the high cost of the drug, just saying there were other countries willing to pay for it

Probably other countries aren't paying for it, probably the health insurance policies that some people have are paying for it. So not coming out of the public purse.

Also the population of Sweden etc vs UK must make a difference.

Brilliant posts from Pharmagrass and others towards the end of this thread.

This is NOT about saving in one area of the NHS in order to fund another. It's about being held to ransom by the pharma companies.

Yes it costs big money to research these drugs but Roche is milking the profits massively. Just go and Google Roche's recent half year shares announcement - they talk about how they had a "good first half" thanks in part to Kadcyla (the £90k drug).

The system isfucked. Drug research should be nationalised, not a money making business operation.

Unfortunately these companies are driven by profits rather than improving lives. I would be VERY surprised if they wouldn't still make a profit at the 60% discount NICE wanted.

Personally I'd be happy to pay over a far bigger chunk of my wages in NI to let this happen but apparently I am in a minority because none of the big political parties are proposing this... we have one of the cheapest healthcare systems in the developed world, as I understand it.
What I don't get is that, given the NHS would be happy to pay 50 grand for a drug that does the same thing (that's what they said on the news last night anyway), why is there no mechanism within the NHS to let people take charge of that 50 grand budget themselves (and contribute the extra 40 if they want this drug)? People will say "oh but then you're denying the drug to people who don't have the 40 grand, that's a two tier system" - well, just now it's being denied to all but those who have the 90 grand.
When stuff like this comes up I think the problem is that the NHS needs to stop trying to be all things to all people. I had complicated and expensive IVF following lots of recurrent miscarriage testing on the NHS and as a result of this I've heard a lot of what the NHS thinks about private healthcare and the attitude seems to be "if the NHS won't pay for it for you, you don't need it and it doesn't work." Which is clearly not true in some cases. The NHS is in a fantastic position to provide impartial advice on private treatments, rather than doing this teeth-sucky "if it's good enough for everyone else it's good enough for you" attitude.

But toomuch, that would be playing into the hands of companies like Roche. Nice is actually envied internationally and many countries would like to be able to implement a similar system. As for funding the NHS, the choice is simple - pay more tax or provide less. If less is provided, then hard decisions have to be made. As for some of the suggestions made on here about what people could be charged for - firstly, hospital food. A few yeas ago both my DH and dd were in separate hospitals at the same time ( cancer for one, serious surgery for the other) . Visiting them both meant a 100 mile round trip for me, plus paying for parking on one site. As well as petrol and parking, I spent money on food for both of them, buying little treats like a magazine or newspaper and because of all the time I spent visiting and travelling, I often had to spend extra on my own food eg buying a sandwich. So yes, I saved a huge amount of money because they weren't living at home-bloody NOT and in addition I was exhausted with worry and putting on a cheerful face. Secondly, DH has type 1 diabetes and has regular GP visits - he carefully monitors his diabetes and his GP visits are part of this. If he didn't, he would cost the NHS much more - oh but then it would be his own fault wouldn't it and he should then pay for any treatment he needed- amputation anyone?

www.bloomberg.com/news/2014-01-30/roche-sees-2014-profit-sales-rising-on-new-cancer-drugs.html

Pugsboo- x post - brilliant post- says it all

Nalia - some cancer can be cured. This whole "in remission" BS just helps to justify the views of some people on this thread that once you have cancer you are basically fucked and might as well get on with dying.

Cancer is actually many hundreds of different diseases. The prognosis for someone with (say) Hodgkin's lymphoma is vastly different to someone with pancreatic cancer. It's daft to treat it as one disease.

I have been CURED of cancer and my OH is an oncologist. A good friend of mine is alive now because her family paid for her to have a drug that the NHS refused to fund because it "only gave 6 months" etc. The NHS offered her a district nurse to come and give her palliative morphine until her death. The drug reduced her liver mets to the point where she could have surgery and now she has no evidence of disease (although high risk of recurrence) and is looking forward to seeing her daughter start school this year. I am much less comfortable than others on this thread about putting a price on that.

There is no point looking at pharma profits without also looking at turnover. It is turnover that is huge and I gather the margins are actually pretty small. They have a window of 10 to 20 years to recoup ALL their R and D costs, not just for that drug but for every other one they trial that does not get marketed.

Whether we like it or not, the NHS will not survive in its current form and one way or another we will all end up paying more for healthcare. Surely it is better to have an open debate about that now (including means testing for elective surgery) otherwise the gap between expectations and reality will just continue to get wider.