Health: Degenerative Brain Diseases

Lord Walton of Detchant Excerpts

Wednesday 5th June 2013 Lords Chamber

[Earl Howe]

I endorse entirely the noble Lord’s ambition in this area. It is an extremely important area of tissue donation and contributes enormously to our understanding, particularly of neurodegenerative diseases. The network of brain banks I referred to has already begun work on its donation strategy, encouraging new donors to sign up for brain donation. Its plan is to target well characterised individuals, for example those in clinical cohorts, as, once donated, the tissue has lots of associated clinical information from life, which is highly useful to researchers. I know that a lot of the major charities are involved in promoting brain donation.

[Lord Walton of Detchant]

My Lords, does the Minister recognise that, partly as a result of such donations but also as a result of major developments in genomic medicine, the individual genes responsible for a substantial number of degenerative brain diseases have now been identified; the missing or abnormal gene product has been found and, as a result, new treatments are coming on stream? Does he therefore agree that the rare disease advisory group now established under NHS England should be in a position to recommend, in collaboration with NICE, the prescription under the NHS of these so-called orphan or ultra-orphan drugs which are proving to be so effective in some of these conditions and which are now coming on stream in an increasing number?

[Earl Howe]

My Lords, we are clear that there needs to be a mechanism to assess the clinical and cost-effectiveness of new drugs, particularly those designed to treat rare and very rare conditions. NICE will indeed be the body charged with doing that. It is devising a process by which it can do so that is quite distinct from its normal technology assessment methodology. As the noble Lord will appreciate, the drugs concerned here are of a different kind and order of cost from those which NICE normally assesses. The noble Lord is quite right that that is the broad process which will be adopted.