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Cancer patients 'expect too much from the NHS'

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Published Date: 05 October 2008
SERIOUSLY ill Scots pin too much hope on new drug treatments and pharmaceutical firms are partly to blame because they over-hype their products, the head of Scotland's drug rationing body warned last night.
Dr Ken Paterson said hospital patients with cancer and other life-threatening conditions could not expect the NHS to fund new drugs costing tens of thousands of pounds that only prolong life by a few weeks or months.

The chairman of the Scottish Medicines Consortium (SMC) said there was a tendency among patients to believe what they read on the internet about new 'wonder drugs' and to underestimate the side-effects of many treatments.

Paterson suggested some pharmaceutical firms were deliberately over-emphasising the benefits of their drugs by using internet sites and placing positive stories in the media.

Last night, some cancer patients and their families reacted angrily to Paterson's suggestion that extending their lives was not worth the price of new treatments.

But the British Medical Association (BMA), which represents UK doctors, agreed there is too little money available to meet every demand.

Paterson spoke out as the debate rages about the cost of new, life-prolonging cancer treatments and whether the Government should change its policy preventing NHS patients from 'topping up' their care with private prescriptions.

The SMC approves new drugs for the NHS based on clinical and cost-effectiveness and if it rejects a drug, boards are entitled to refuse patients funding for it. A typical new cancer drug might cost £10,000 for an extra two to four months' survival.

This has meant some patients have paid thousands of pounds for private prescriptions for drugs that offer a few extra months of life, but are not judged cost-effective by the NHS.

The SMC has sparked controversy previously by rejecting cancer drugs Cetuximab and Avastin, which prolong survival in some patients but are relatively expensive compared with standard chemotherapy.

Paterson told Scotland on Sunday: "I think I would have some concerns with cancer drugs in particular, that patients are not fully aware of the actual benefits and the side-effects.

"Very often, the benefits are very modest and associated with toxicity. I read of patients selling their houses to fund treatment and I wonder do they really know what they are getting?

"Of course you would be entitled to take it, but you are not entitled to expect the NHS will be willing to put an unlimited amount of money into you having those two months."

He added: "Some people say that when you've had your three score years and 10 that's fine. Other people would be willing to do anything to prolong their life.

"What's not a practical option is that they should expect the rest of society to spend unlimited amounts of money on delaying their death by a short time."

Turning to drugs firms, he said: "Pharmaceutical companies perhaps over-emphasise the benefits of some treatments in some of their publicity materials.

"Their material will be factually correct, but it may emphasise the positives and minimise the negatives."

Paterson added that information about some new drugs from the internet and media stories were "not erroneous, but not the full picture; raising false hopes in people".

He said: "People do need to wonder that if the NHS is not willing to spend its money what are you, as a patient, going to get for the expenditure of your own money?"

Paterson called for a change to the pricing system for new drugs that would allow the NHS, not private companies, to set the charges, a move he believes would bring prices down.

He added: "If we were to move to a system where the drugs were priced at a level that justified what they did, then the whole co-payment issue would disappear."

His comments were last night partly backed by doctors' leaders. Dr Dean Marshall, chairman of the BMA's Scottish GP committee, said: "Doctors do get patients who have seen something on the internet or read something. But a doctor's job is to interpret the evidence and make decisions. Pharmaceutical firms have huge marketing machines, but they are also funding trials and unless the Government funds trials, the pharmaceutical firms are going to go on doing so and promoting their products.

"I also accept that if you spend money on one thing in the NHS you can't spend it on something else and we have to make judgments about how far the NHS is going to go in preserving one patient's life when it could be using the money to improve the lives of others."

Jan Rutter, of the internet forum Cancer Buddies Network said: "Some things are hyped up but so long as you have the recommendation coming from your own doctor, you should have the drug. We do understand that the NHS can't fund every single drug and disease."

But the comments have sparked anger among patients and drug companies. Tina McGeever, whose late husband Michael Gray paid for the cancer drug Cetuximab to prolong his life by six months and petitioned the Scottish Parliament on the issue of equity of treatment, said Paterson's remarks were "unhelpful".

She added: "Michael only stopped work three weeks before he died. He was seeing friends and going out. I would say that makes the drug damn cost-effective."

Andy Powrie-Smith, director of the Association of the British Pharmaceutical Industry in Scotland, rejected Paterson's accusations. He said: "I have not seen any examples of this. Our focus is on giving our best quality submissions to the SMC."

A Scottish Government spokesman said: "We have a robust process for evaluating the effectiveness of drugs in Scotland and the NHS aims to provide those drugs which are proven to be effective."

Opinion: Buying time - Should NHS patients be allowed to pay for life-prolonging 'wonderdrugs'?

Page 1 of 1

  • Last Updated: 04 October 2008 11:10 PM
  • Source: Scotland On Sunday
  • Location: Scotland
 
1

Charles Linskaill,

Edinburgh 05/10/2008 00:33:58



I am miffed about this one, it appears as quite made-up, in some respects,

For one, that really angers me is this quote,....

...."Scots pin too much hope on new drug treatments"

Excuse ME!!! Why pick on the Scots,?

Or is this connotations of Political Correctness, from the,........'Alex Salmond' Camp!?

Most of us DONT Pin our Hopes on 'Wonder-Cures' with Cancer, we all know, there is none.

What we do expect, is the best the NHS can offer, at the time of our illness, which we do get.

Having Cancer is a dreadful condition to find yourselves, and it is one of,..'Dread', some may seek,...

....Soo called 'Wonder Cures' but I doubt the worry of the condition, would put one in a state of shock and depressions, you would most likely not have the,....
..'Mental Strength' to go looking up the Internet for,..
...........'Wonder Cures'.

As for the "Drug Companies", they are a strictly controlled industry only to themselves, most likely with Political muscle and controls over Government.

It IS for our "Government" to Control them, and NOT to give us the,..

....'Crocodile Tears' given in this report, to they all Know, only too well, most of it is 'non-truths' in which they are trying to put the blame on,....

...Cancer Patients!


2

Jock Tamson,

Scotland, Caledonia, Alba 05/10/2008 01:11:55
Charles, you should be on the McConnell thread about the cancer in Labour.

Meanwhile I shall think of a friend of mine who has just been told he has cancer of the colon.

People have a right to cling onto, or give up life. It's their life and their decision. As long as they have the dosh, apparently.
3

Charles Linskaill,

Edinburgh 05/10/2008 02:03:39

re: re-wording of #1

*but I doubt the worry of the condition*

Correction = *but I fear the worry of the condition*
4

selah,

gala 05/10/2008 03:01:52
The New World Order & ‘Codex Alimentarius’

The Future of Natural Health and the Organic Movement

Few people appear to be aware that on 15th May 2007, just six weeks before being appointed Prime Minister, Gordon Brown joined ranks with George Bush Snr by publicly stating his commitment to the political philosophy of globalisation and the establishment of a New World Order.

Greens especially should be aware of what the New World Order plans for the Natural Health and the Organic Movement. A part of the NWO agenda is to restrict and ultimately prohibit the sale of all natural health products. According to John Hammell, a legislative advocate and the founder of International Advocates for Health Freedom (IAHF), here is what we have to look forward to:

“If Codex Alimentarius has its way, then herbs, vitamins, minerals, homeopathic remedies, amino acids and other natural remedies you have taken for granted most of your life will be gone. The name of the game for Codex is to shift all remedies into the prescription category so they can be controlled exclusively by the medical monopoly and its bosses, the major pharmaceutical firms.”

However, this is just the tip of the iceberg; behind the Codex Alimentarius Commission are the United Nations and the World Health Organization, working in conjunction with the multinational pharmaceutical cartel and international banks. It is now a criminal offence in parts of Europe to sell herbs as foods. An agreement called EEC6565 equates selling herbs as foods to selling other illegal drugs. Action is being taken to accelerate bringing other European countries into ‘harmonisation’.

So you see, the Alternative Health Community is under pernicious threat, yet the vast majority of alternative health practitioners or their clients have little or no awareness of the impact that Codex Alimentarius will have on the profession. It also means that the Green Light will be given to firms like Monsanto to pursue unfettered their pr
5

Guga II,

Rockall 05/10/2008 05:20:12
People's expectations are, perhaps, raised by continual stories in the media, and in newspapers in particular, of new "breakthroughs" in cancer treatment, and new "wonder" drugs for cancer. None of these so-called breakthroughs or so-called wonder drugs ever seem to eventuate.

The fault, therefore, seems to lie with the newspapers for propogating these fairy stories; and the Hootsmon is at fault in this regard,too.
6

seattlebarbie,

here not there 05/10/2008 06:21:47
at least you don't have to pay for the costly development of the drugs which is passed along on our medicine prices in the US.
7

Ninian Reid,

Edinburgh 05/10/2008 06:29:54
I think we're in danger of doing the pharmaceutical firms a grave disservice here.They don't hype their products. They deliver reams of academic research for careful analysis and expert evaluation. It's often the media who employ the colourful, must-have language of clinical persuasion.I am not an apologist for the drugs industry.Very far from it.But I do have some sympathy for them. They allocate thousands of man hours sweating over microscopes in order to come up with radically new treatments. And what long-term rewards do they reap? Seven years and, hey presto, the exclusive rights to their products are handed over wi??y-nilly to the Czechs and the Hungarians.There's gratitude for you !
8

Ninian Reid,

Edinburgh 05/10/2008 06:35:07
Message to self: Do not employ the term "wi??y-nilly" again. It won't get past the electronic censorship scissors at the Scotsman. How ridiculous is that? What happens if we were to refer to W??ly Brandt? Now there's something to ponder over this Sunday morning.
9

Ninian Reid,

Edinburgh 05/10/2008 06:39:42
SOS.Oops, I meant to attribute that to Scotland on Sunday. Same difference,I suppose. What a silly wi??y I am !
10

fife runner,

05/10/2008 08:23:41
the majority of cancers are caused by lifestyle. Change the way most live and reduce cancer patients and hey, les to treat and then perhaps those needing treatment could get it. Instead we get some saying the nanny state should not tell them how to live. The resut of this attitude is the treatments are spread around too thinly.


I am not only taking about smokers but alcohol abuse, bad diets lack of excercise etc etc. Even smokers who say they altruistically fund the NHS with their taxes are to blame as well. Money cannot buy more health professionals.
11

fife runner,

05/10/2008 08:25:23
also, just sitting popping pills in front of the telly will not help.
12

JT,

05/10/2008 08:31:59
Maybe if the NHS hadnt wasted millions on a useless computer system, or cut the levels of useless management in hospitals then there would be more money in the pot for treatment. I agree that you cant fund everything all the time, however I think the NHS needs to get its priorities, stop treating the drunks who bang their head on a sat night for free and charge them after all thats a lifestle. Getting cancer is not just though lifestle, I know someone who had breast cancer, didnt smoke or drink but still died in her late 40's of it was that still her fault?!!
13

FTH22inarow,

05/10/2008 08:55:43
Imagine relying on the NHS when you're ill, what a cheek
14

Ken S.,

Reading 05/10/2008 09:11:25
#1 Charles Linskaill,
"....'Scots pin too much hope on new drug treatments'

Excuse ME!!! Why pick on the Scots,?"

I would imagine because this is a Scottish newspaper reporting on a view by the Scottish Medicines Consortium, partly backed by the BMA's Scottish GP committee,(though contested by Association of the British Pharmaceutical Industry in Scotland) regarding funding of drugs in the Scottish National Health Service.

15

Upbeat,

05/10/2008 09:28:38
No one ever seems to want the " party "of living to end today. Why should it be that some people feel they desrve special drug treatmants simply to delay the inevitable.Fine if the type of Cancer contracted is responsive to treatments that can send the patient into remission...but for all the other drugs it becomes a cynical postcode lottery, where the rich can "buy" more tickets.Personally I feel that teh NHS should concentrate on the " do-able" (- the cureable -) rather than squander huge sums on responding to the hopeless demands of those who cannot accept the inevitability of their own demise.

Part of the discussion should focus on the godless society that has developed in the UK in recent decades. With so many people today unsure what happens at point of death there is a natural reluctance to " go there". Speak to any nurse who has experience of caring for the terminally ill to point of death.The transition is invariably peaceful.
16

joppa jock,

Huntingdon 05/10/2008 10:52:45
There is only one certainty about life and that is that nobody gets out of it alive! However, that does not prevent us from wanting to cling on for as long as possible, so any possibility of an extension through a 'wonder drug' will always offer hope to the seriously ill.
17

Scotish Exile,

05/10/2008 11:04:43
What an effing cheek, is it too much to ask that we get the best possible health care and don't end up worse than when we went in I.e. pick up MRSA etc because the NHS staff don't even do the basics!!!
18

TimW1234,

Ottawa, Canada 05/10/2008 11:37:42
Charles Linskaill

Good, good morning to you and your DYW.

Charles, you must not get into such dithering rages over subjects of which you have no control.

In this particular case, such rage and indignation can only weaken your immune system and possibly allow opportunistic cancers to enter your body.

It would be sad and a loss if we were denied your singular postings because of a terminal illness.

Please, PLEASE chill out, dear Charles.
19

Charles Linskaill,

Edinburgh 05/10/2008 11:43:43

Tim ~18,

Goodmorning to you also, DYW is non to well at the moment but thankyou for your usual kind regards.

re: subject matter, I will ponder on what you say. :)
20

Red Tower,

Dunoon 05/10/2008 11:50:03
#6

But we do pay for the development of these drugs.

We pay for their development through voluntary donations to Cancer Research UK. This body "invents" many of the new wonder drugs. The problem is though this body does not have the wherewithal to market them. The drug companies step in at this stage . They sound out the market. They assess the likely demand for the product, the cost of manufacture etc and arrive at a price. Which is usually high. At this stage our government's healthcare rationing body, NICE, starts talking about "cost-effectiveness" and on the basis of this analysis often denies patients the treatment. Many drugs so denied often become widely available in other countries including America.

If you want proof of all this then I suggest you research the drug known as Temodal here and Temador in the States.

I know only too well about this problem. My wife had a brain tumour. She was denied Temodal, purely on so-called "cost-effectiveness" grounds. If she had been given this drug it might have lengthened her life and definitely WOULD have made her passing less harrowing.

As it was she was given a clapped out drug called Lomustine whose main claim to fame is that it attacks the walls of the lungs. And as a result I had to watch my dear wife virtually drown in lung fluid for the latter days of her life.

Both your country and mine could find the money if it gave up fighting illegal wars and upgrading status-symbol weapons such as Trident.

If you want to

21

Weejockmcmad68,

05/10/2008 12:46:41
#10 - If you delve into cancer research a bit more then you'd find that "the majority of cancer cases" are not all caused by "lifestyle". A healthy diet and excercise isn't the answer to everything. Everyone has some form of cancer in them, it just takes something to trigger it off. This information was given to me whilst I was undergoing treatment for cancer (and I've never smoked in my life so that wasn't the cause of mine). What about, for example, people (men and women) with breast cancer, people with cancerous moles, toddlers and kiddies with various forms of cancer. Some of these kids haven't been around long enough to establish a "lifestyle" as you put it.

Everyone want's the best treatment for themselves, and their loved ones. Nobody really wants to die from this dreaded disease.

Spend more money helping cancer patients instead of trying to find cures for those who are self-inflicted with aids and stop giving the junkies free methodone. Give cancer patients free prescriptions instead!
22

Dr Finlay,

Tannochbrae 05/10/2008 13:42:15
The point of this article is a very fair one: it isn't saying that the public can't expect excellent care from the NHS but rather that there is too much faith put in the new "wonder drugs".

Of course everyone would wish themselves or their loved ones to get any and every chance of a miracle cure but the point is that we, as a society have chosen to limit the resources available to the NHS.

Assuming that this resource will always be less than the total possible spend, it is obvious that someone, somewhere will have to decide what we treat (and therefore, what we don't treat). The only moral way to do it is to look at the benefit versus the cost and that means making a subjective judgement about other peoples quality of life.

If you think that is an easy or comfortable thing to do, then I suggest that you put yourselves forward for a place on a Health Board and be the one to actually do it! Every decision means that someone will lose out - if not the person asking for the expensive treatment, then the faceless others who would have been treated instead.

Science will always come up with a better, more expensive cure - are we prepared to always come up with the money (and please stop the nonsense about cutting management - even if you took out every single manager in the NHS the savings would only pay for a tiny fraction of the drugs costs!)

Don't blame the people trying to make these decisions -ask youselves if you are willing make the necessary sacrifices in your life style to fund everything.
23

Red Tower,

Dunoon 05/10/2008 14:17:56
#22

This is an argument for leaving it to the professionals. Personally I found the most eminent professional to be involved in my late wife's case to be entirely wanting.(See #20)

He was the one who claimed that Temodal was a greatly "overhyped" drug and of limited efficacy. That was 7 years ago now the self-same oncologist is claiming TEMODAL to be the best possible drug for my late wife's complaint. AND HE WAS THE MAN WHO GAVE MY HER, LOMUSTINE, A DRUG WITH HORRENDOUS SIDE EFFECTS!!!
24

Dr Finlay,

Tannochbrae 05/10/2008 15:22:19
No22

I am, in fact, arguing for exactly the opposite! I think that the personal involvement of the treating doctor makes it even more difficult to take a dispassionate view.

The SMC, NICE etc systems, although not perfect by any means, are an honest attempt to get an objective overview on behalf of us all about what is or is not best advice. Of course, there should be professional advice available to these organisations but they should be unencumbered by personal knowledge of individual patients.

This system, if it can ever be perfected, would avoid situations as you describe because the clinical decision would be restricted to an approved list of drugs.

By the way, seven years is a very long time in the history of a drug, during which evidence and experience can change dramatically. I assume that you would expect doctors to change their practice in the light of experience? I know nothing about it, but perhaps your wife's doctor was conscientiously applying the latest evidence at both points in her care. Medicine will never be an exact science.
25

Red Tower,

Dunoon 05/10/2008 15:56:48
#24

The efficacy of Temodal was well known throughout the medical world 7 years ago. Professor Gordon McVie, the then head of Cancer Research UK, was pleading with Nice way back then to adopt a different attitude towards its availability. By that time the FDA in the States , one of the most rigorous bodies in the world with regards to the licensing of drugs , had given it after rigorous trials, a carte blanche. The oncologist in question must have known that it was the best drug available for my wife's complaint and he must also have known of the dangerous side effects inherent in prescribing Lomustine.
What happened here was that the prescribing oncologist meekly toed the NICE line. And the NICE line was to save, save and save money. (At that time too NICE did not have a single cancer specialist in its organisation!.)

The fact that this oncologist now has had a Pauline conversion does not mean that after extensive research on his part he has seen the error of his ways. It is simply down to the fact that if he were to continue to hold his previous views he would be ridiculed by his peers.
26

Roy Forrester,

Bloomsburg 05/10/2008 18:14:49
I wonder, what percentage of their budget does the NHS put into research!!! It seems to me that more can be done to enable early diagnoses of the various cancers. We all know that the earlier a cancer is diagnosed the better the prognoses and the less likely that the most expensive drugs will be required. This also applies to most other serious illnesses. The bottom line (pardon the pun) is that health treatment for all would be much less expensive no matter where one lives.
27

discman,

06/10/2008 00:11:33
couple of points,for every 1£/$ spent on research drug companies spend 2on marketing and media,Glaxo spent $10million on lobbying in us alone,and to suggest that drug companies dont hype their product is nieve,also FDA many things rigorous not one of them, drug companies can pay them to fast-track their product,its perfectly legal but many people are concerned that the effect of this compromises the efficacy of the drug,why to you think drug companies pushed for this to happen? To enable the drug to get on to the market to save lives and benefit people? Or to steal a march on a competitor and make more money?
28

St Monance,

Toronto 06/10/2008 01:38:25
Every last tax dollar could be spent on health care until the entire nation is bankrupt and still not meet all the demands that people make on it.
At some point we have to make compromises: how much on policing to keep streets safe; how much on education so that future generations will remain inventive; how much on industry and agriculture and manufacturing, and so on so that people will have jobs. We need to return to another generation when people accepted that we all die and prepared for it and welcomed it when all hope was gone. Now, we pretend that if only the latest medicine keeps us alive, intubation breathes for us, the pumps move the blood through our system, and dialysis clears out our system, etc. we will live forever. Accompanied by the drugs to keep us so sedated that we will not note the stench of the rot as our body succumbs to the inevitable.
Do we really want to mortgage our grandchildren's education, safety and health to keeping us wheezing through a few more months of agony?
Come on folks. Let's grow up and move on to the next great adventure and bid a fond adieu to this world when the inevitable comes. If there is one thing that is guaranteed: you can't cheat death. It comes for us all.
29

Angela White,

Canada 06/10/2008 05:16:13
I have always been opposed to capital punishment. Yet, as a cancer patient, I wonder about the logic of allowing the sick to die for want of treatment, and murderers to live out of respect for life.

I suppose that if I had the money to buy myself some more time, I would not think the expenditure a waste of money, anymore than I think my breathing, a waste of air.

Some of you who are so ready to place a monetary value on other people's lives, may indeed find yourselves thinking back to the logic of your musings on mortality from quite a different perspective, when the grim reaper touches your shoulder.
30

Kitti Kat,

06/10/2008 19:28:19
Should any one of you or a loved one have cancer, I can't imagine that you wouldn't want to do everything that you cold if it would save your life. I feel for Angela (abvove) and I agree that a life is more important than the money. We would have done anything to keep my brother alive when he was dying of cancer. I say that those who are opposed to new drugs, etc. should walk a mile in a cancer patient's shoes. My best to Angela and prayers that she live for a long time. h the help of any drugs, experimental or otherwise. I have no love for a NHS scheme and hope to God that we don't have it shoved down our throats in the US>

 

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