This week the Independent newspaper called into question the credibility of several charities responsible for lobbying the NHS for expensive drugs and treatments. The investigation revealed that many of them received funding from pharmaceutical companies.
The investigation, published on Wednesday 1 October, criticises many charities, including the National Kidney Federation, the Arthritis and Musculoskeletal Alliance, the Royal National Institute for the Blind and the Alzheimer's Society, for accepting up to six figure sums in undisclosed donations during 2007.
The NKF—an exemplar that typifies the problems faced by charities funded by drug companies—received half of their funding from drug companies last year – in excess of £300,000. Through their own research and dialogue with pharmaceutical agencies they decide which medicines to support.
The drama surrounding NHS funding of drugs and treatments, and the National Institute for Clinical Excellence’s (NICE) decisions on which medicines to fund, is long and protracted. It has included stark allegations, numerous court cases and feverish protests.
Hilary Whittaker, chief executive of Beating Bowel Cancer, sought to combat the controversial accusations, refuting any allegations of misconduct. In a statement given to the pharmaceutical marketing website PMlive.com she said: “No attempt is made on the part of donating companies to influence our policy, direction or action either explicitly or implicitly, and we are proud of our independent position in this regard. As a patient centered organisation, we have a responsibility to build positive working relationships with pharmaceutical companies. However, we remain entirely independent as a charity.
“The vast majority of our income does not come from the pharmaceutical industry. The charity has an excellent working relationship with the Department of Health, and we actively encourage dialogue between government and industry on drug pricing.”
NICE has a notoriously bad relationship with these charities and courted controversy earlier this year by refusing NHS funding for kidney medication. This in turn spurred the National Kidney Federation to accuse NICE of making a “barbaric, damaging and unacceptable” decision. NICE, in return, pointed out that one of the refused medications, Sunitinib costs £3,363 for a 30-capsule pack.
The chairman of NICE, Sir Michael Rawlins, in response to the myriad accusations, vehemently defended the working practices of his organisation. Seeking to change the focus of the criticisms, he said: ”We are told we are being mean but what nobody mentions is why the drugs are so expensive.”
NICE operates within stringent guidelines in order to arrive at their decisions. To decide on the cost effectiveness of a treatment they measure health gain against quality and length of life using a system called the quality adjusted life year. Because they work within the strict confines of a budget determined by the NHS they must be highly judicious in their decisions.
NICE received further criticism for spending £4.5 million on "communications" last year, as opposed to the £3.4 million they spent assessing new medicines.