The Charity Commission's survey of public trust and confidence in charities reminds me of the responsibility we have in using the disproportionate influence of the voluntary sector. For example, individual health charities are able to talk directly to the public and government about access to new and controversial drugs, while the industry that produces them has had difficulty in getting a hearing for some years.
If you followed the Herceptin story, you'll know that women with early as well as advanced breast cancer should now get this drug and have a better chance of survival. Of course we want people with cancer to have the best possible chance. But I remain uneasy about the drama that led up to it, the role of the voluntary bodies and the emotive media coverage.
The story is complex, but here goes. The drug has been shown to benefit women with recurrent breast cancer, and US clinical trials indicate a benefit to those with early cancer too. The first stage in the licensing process is a series of complex trials, which show if a drug works and is safe; only then can a licence be issued and the drug be prescribed in the UK. The licensing system protects the public and has been in place since the Thalidomide disaster of the 1960s. As a Medicines Commissioner, I learned that it's good but not perfect.
Then the National Institute for Clinical Excellence judges whether they work well enough to justify funding by the NHS. Although I fell out with NICE over its criteria for neurology drugs, we must have some public means of deciding what should be funded from taxation.
Fast forward to the new Secretary of State for Health facing increasing media, charity and public pressure. She soon announced that the drug should be made available. It is very costly, and prescribing for tens of thousands of women could bankrupt health trusts already in difficulty; it will bar other new drugs and services from consideration. The genetic testing isn't in place and it isn't cheap.
Herceptin hasn't been compared with other drugs by NICE; many other candidates are waiting to be evaluated. It has not yet even been licensed for early breast cancer. The NHS has yet to catch up with the consequences of this decision, which looks like an ill-considered response to special pleading.
In pushing a senior politician to rush to this decision, did the voluntary bodies do the right thing? And at what cost to other patients?