Are drug companies charging too much for new, potentially life-extending cancer drugs?

Health Editor Barry Nelson looks at the evidence.

FOR years Nice, the body charged with approving new drugs for use on the NHS, has come in for criticism from patients and doctors.

Again and again the National Institute for Health and Clinical Excellence has been accused of preventing proven new drugs being used in the Health Service. The shrillest criticism has been when Nice has decided not to approve new cancer drugs.

What angers patients, cancer specialists and cancer charities is that Nice appears to place greater importance on the cost of new cancer drugs rather than their ability to extend patients’ lives.

The difficulty in obtaining the very latest cancer drugs on the NHS, if Nice has not given its approval, has been documented by The Northern Echo as part of its End NHS Injustice campaign.

A number of North-East cancer patients won their battles to get funding for new drugs – such as the late Kathleen Devonport from Chilton, County Durham, but others failed to convince their local primary care trust to pay for their treatment. People like the late Barbara Selby, from Richmond, North Yorkshire, who died aged 65.

While Nice says it has now changed – and decisions on new drugs now give greater weight to whether they can extend a patient’s life by at least three months – the issue of the affordability of new cancer drugs touched a raw nerve with Nice’s chairman, Sir Michael Rawlins, when the group held a public board meeting in Newcastle last week.

EVEN before I got the chance to ask Nice why many terminally ill cancer patients still struggled to get the latest drugs they needed to keep them alive, Sir Michael launched a broadside against the pharmaceutical industry.

“We don’t set the price of the drug.

The price is set by the manufacturer,”

he said. “We don’t have powers of negotiation.

Sometimes the manufacturers are being greedy. Sometimes they charge far too much. They are not just getting their money back, they sometimes make profits beyond belief. We just have to accept the price that is set.”

Earlier this year he said that overpricing kept share prices up, and ensured that drug company executives received healthy bonuses.

But is he right?

The Association of the British Pharmaceutical Industry estimates that it takes more than ten years and costs an average of £550m to develop a new medicine. Spokesman Richard Ley says the profits of the UK pharmaceutical industry are controlled through a regulatory scheme, which effectively caps profits. This acts as a restraint on drug prices – even though some new drugs, such as the liver cancer drug Sutent, can cost £25,000 a year per patient.

He also points out that drug companies are responsible for 28 per cent of all industrial research and development in the UK.

One frustration for drug companies is the difficulty of getting new, fully-licensed drugs accepted by Nice, even though they are safe and have been proven to work. Many cancer drugs which fail to get approval from Nice are widely available in western European countries.

There is also the issue of the amount the NHS spends on cancer drugs. Per head of population, the UK spends significantly less on cancer drugs than health systems in countries such as France and Germany.

Ray Devonport, 68, knows only too well how expensive new cancer drugs can be. After his wife, Kathleen, was refused NHS funding to pay for the liver cancer drug Sutent, the couple paid £2,500 for a month’s worth of drugs. After their plight was highlighted in The Northern Echo a mystery benefactor stepped in and donated £10,000 to pay for the next three months supply of Sutent. By then, Kathleen was doing so well on Sutent that another attempt to get NHS funding from their local primary care trust was successful.

Sadly, Kathleen died in July, aged 66, but being on Sutent significantly extended her life.

Ray takes the view that the NHS should follow the lead of comparable European countries and simply pay the going rate for cancer drugs. “People have paid into the NHS all their working lives and they should get the drugs they need when they need them.” He is angry that affordability does not seem to be a problem in western Europe, just here in the UK.

Michael Summers, vice-chairman of the Patients’ Association, an independent charity which acts as an advocate for patients, says Prof Rawlins’ view on alleged drug company profiteering was harsh and didn’t acknowledge the vast sums invested by the industry, often in products which did not fulfil their potential.

He says Nice has to live in the real world and urges the Department of Health to do more to encourage costsharing schemes where drug companies agree to fund the first few weeks of treatment for cancer patients and the NHS agrees to fund further treatment if the patient does well.

Mr Summers also says the Department of Health could probably be more active in negotiating the price of new drugs with manufacturers. He says patients in the UK find it unacceptable that access to many new drugs, including cancer drugs, is restricted compared with Western Europe.

John Bowis, from Seaton Sluice, Northumberland, whose 53-year-old wife Mary recently won a battle with her local primary care trust to get the new bowel cancer drug Erbitux, used the Nice meeting in Newcastle to voice concerns that patients turned down for funding had no choice but to appeal back to the same PCT’s “exceptional circumstances”

drug funding panel.

He believes that where cancer patients are concerned an independent body should be set up to provide a fast-track appeal service.

The Department of Health says funding drugs not approved by Nice is a matter for the local PCT to decide, but if a patient was still unhappy, they could contact the Health Service Ombudsman.

John, who had to borrow £16,000 to fund his wife’s treatment until the PCT agreed to pick up the bill, says this is not acceptable because such an appeal would almost certainly be lengthy and could only ask the same PCT panel to look at the evidence again.

He adds: “It doesn’t seem right that the only avenues you can take to appeal is to go back to the same body or take legal action.”

■ A spokesman for the Department of Health says the 2009 Pharmaceutical Price Regulation Scheme agreed by the Government and the drugs industry “is a balanced package to recognise the importance of delivering reasonable prices for the NHS with a fair return to industry to enable them to research, develop and market new and improved medicines.”