Cancer patients 'expect too much from the NHS'

Published on Saturday 4 October 2008 20:01

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'?