However, I would dispute the claim that the origins of patient power can be traced back to Herceptin. The 2002 NICE appraisal for Glivec, a groundbreaking treatment for chronic myeloid leukaemia, created a media and patient storm. The first draft recommendations from NICE said Glivec should not be made available to patients, despite compelling evidence and the fact there was no satisfactory existing treatment. Patient groups fought an exceptional campaign, securing support from doctors and highlighting the terrible consequences of being denied Glivec.
The result was a NICE U-turn and victory for the patients. The Health Service Journal at the time described a wall of patient anger that made denying Glivec to patients an almost impossible decision for the Government. This was probably the first high-profile example of patients co-ordinating an effective campaign against NICE.
Glivec has transformed the lives of thousands of patients in the UK, many of whom would not be alive today if NICE had stuck to its original recommendations.
Pat Pearson, head of ethical healthcare, The Red Consultancy.