Are patient protests being manipulated?

http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/analysis-are-patient-protests-being-manipulated-947317.html
Independent.co.uk
Analysis: Are patient protests being manipulated?
By Jeremy Laurance
Wednesday, 1 October 2008

It was the charge of barbarism that finally made Sir Michael Rawlins crack. The phlegmatic chairman of the National Institute for Clinical Excellence (Nice) is used to fielding brickbats over unpopular decisions to restrict access to cancer treatments and other drugs on the NHS.

But the jibe from the UK National Kidney Federation (NKF), which described Nice's decision to turn down four kidney cancer drugs as "barbaric, damaging and unacceptable," was too much. Sir Michael decided to strike back.

The resulting broadside, on the front page of The Observer, was headlined "Health chief attacks drug giants over huge profits: Watchdog slams high medicine prices". It was a stinging rebuke of the drug industry which Sir Michael accused of overpricing medicines to boost its profits. "We are told we are being mean but what nobody mentions is why the drugs are so expensive," he said.

It was an attempt to redress the balance of a debate too often cast as the people versus Nice. But Nice is merely a mechanism for sharing out a limited budget. The real argument should be between the people (who want the drugs), the pharmaceutical companies (who set the prices) and the Government (who fixes the NHS budget).

What escaped scrutiny was the role of the patient groups such as the NKF, who have lobbied vigorously against Nice decisions and the part played by the drug industry in their affairs.

The NKF, an umbrella organisation of kidney patients' associations, receives half of its £300,000 a year budget from the pharmaceutical and renal industries, according to its chief executive, Timothy Statham. In its press release issued on 19 August, it announced it was "incensed" by the draft Nice decision to turn down four drugs and would campaign to have it reversed. But it made no mention of the high cost of the drugs – £3,363 for a 30-capsule pack of sunitinib, one of the four – or criticism of the drug companies that make them. Professor Rawlins said the drugs could be made for a tenth of the cost.

Challenged about the omission, Mr Statham said it was an "important question" and he had requested meetings with the four companies. But he defended the NKF's reliance on industry funding.

"We receive sponsorship from as many of the renal industries as we can possibly sign up. We take the view that by having all the pharma and machine-maker companies on board, we cannot be subjected to overbearing influence by any one of them," he said.

That leaves unanswered the question of whether accepting funding from any company compromises a group's ability to question the behaviour of the industry as a whole. The way in which Nice is pilloried by patient groups, while the drug companies are ignored, suggests a reluctance to bite the hand that feeds them.

Nice is a rationing body, established in 1999 to ensure the cash-limited NHS gets best value for money from the profit-driven pharmaceutical industry. It aims to establish not only whether a drug is effective, but whether it is more effective than existing drugs and, if so, whether it is worth the extra price (£1,000 spent on a cancer drug means £1,000 less for nursing care for cancer patients).

The uneven nature of the debate is exposed each time Nice makes an unpopular decision. The smaller charities often make the biggest waves but the extent of their reliance on pharmaceutical company funding is bound to raise doubts about the independence of their judgement.

The Association of the British Pharmaceutical Industry, which speaks on behalf of drug companies, rejected the accusation that patient groups were being manipulated. Under its 2006 code, all funding of patient groups must be transparent and covered by a written agreement. A spokesman said: "If you ask the groups they will tell you they are only interested in representing the interest of their members."