The National Institute for Health and Clinical Excellence (NICE) has rejected five appeals against their decision not to authorise the NHS supply of Alzheimer's Drugs to patients in both the early and the late stages of the disease.
This is not a "Nice" decision. It is a decidedly nasty one! It is not based upon "clinical excellence" but upon cost. Although NICE agrees that the available drugs provide clinical benefits at all stages of the disease they say that the NHS, which of course wastes millions of pounds every year, cannot afford the £2.50 per day per patient that would give relief to the sufferer and to their carers - those who daily have to endure the condition with them.
I know that may of my constituents suffer from, or are caring for a loved relative that suffers from, this awful and debilitating disease that effects not only the individual but whole families. As one of my constituents - and no doubt there will be very many others - has already written to me:
"This decision is clear evidence of the continued and totally unacceptable discrimination against people suffering from one of the worst illnesses in the world".
Of course it is easy to special plead hardship cases for those suffering from a number of dreadful conditions and equally clearly there has to be a body responsible for ensuring that medicines do delver real value for money. In the case of the Alzheimer's drugs, however, it has been clearly demonstrated that the prevention or suppression of symptoms of aggression and other benefits has enabled husbands, wives and other carers to maintain families in the home without recourse to still more expensive residential care. It has also prevented the alternative prescription of sedatives that may cost as much or more as the drugs that NICE refuses to recommend.
NICE has not included, in its narrow assessment, the impact that treatment has upon cares and has not accurately represented the cost of long-term care in their economic model. As the Shadow Secretary of State for Health, Andrew Lansley, said in the Commons debate on the NHS workforce and Service last week:
"Because of the nature of the regulations prescribed by the Government the benefits that NICE can take into account apply only to the National Health Service and to publicly funded social care. The benefit to carers and their families beyond that point cannot be taken into account".
Alzheimer's drugs do not offer a cure for dementia and they are not effective in all cases. But they have transformed the lives of thousands of people with dementia and the lives of their carers and I think that those of my constituents who daily face these problems need and deserve the best drugs that are available.
The Government is embarking upon yet another re-organisation of the structure of the Health service that will cost millions of pounds in redundancy payments, administrative costs, re-locations of Trust headquarters, new letterheads and the like. I believe that those that I represent feel that we have been through more than enough organisational turmoil in recent years and that much of this money would be better spent providing sharp-end healthcare in the form of the best available drugs for those who so desperately need them.