My Lords, as a nation we are deeply indebted to the many individuals who donate brain tissue. This donation enables vital research leading to new treatments for neurodegenerative diseases. The Medical Research Council, the National Institute for Health Research and research charities are all supporting work to encourage brain donation. The MRC network of brain banks is developing a strategy to encourage new donors and plans to hold a workshop in September this year.
I am grateful for that Answer. I remind the Minister that when we talked originally of heart donation many people found that quite emotionally difficult, but now it is much more common. There is something very similar with brain donation yet it is profoundly important, not only for general research but particularly for degenerative brain disease. The research bodies are very concerned to get people to donate where they do not have a family history of brain degeneration because they need comparative samples. Can the Minister do all he can to promote this? I donated my brain some time ago and so far it has not been returned marked “not fit for purpose”. [Laughter.] In all seriousness, this is a very important issue. It can bring great improvement to people’s lives and to scientific knowledge generally and I ask the Minister and his department to do all they can to promote it.
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.
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?
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.
My Lords, my husband did not have some rare disease but, following two strokes, he became involved with a research project called OPTIMA. He was then monitored. It gave my family—and me particularly—great satisfaction to know that he left his brain for research, which they found extremely useful.
My Lords, I am glad to know that. It provides a telling and important example of how this can be done in a sensitive way, and in a way that best meets the requirements of researchers. If there is a possibility of planning in advance the donation of a brain—or, indeed, any organ—it is much easier for the family and gives the patients themselves much satisfaction.
Is my noble friend aware that a great deal of work is being done through the EMEA and, through that organisation, by a number of countries in Europe? As one who has raised the issue of orphan drugs before, can we, on this occasion, make sure that NICE co-operates with these other bodies and we do not start duplicating work across the whole of Europe?
My Lords, I am aware that NICE co-operates with its counterpart bodies not only in Europe but in other parts of the world; its work has an international dimension. As the same time, I say to my noble friend that NICE is seen as a world leader in its field. Many other countries look to NICE for the methodology that it adopts.
I am sure that the noble Earl is aware that Alzheimer’s disease is increasing in frequency as we all age, and is becoming a severe health problem. The Alzheimer’s disease association is certainly anxious for brains to be put into its bank, because it seems that there is the potential for a cure for this disease in a few years’ time. I suspect that the noble Earl is aware that the research that is done on these brains will be extremely helpful in that respect.
My Lords, I absolutely agree with the noble Lord, Lord Turnberg. Dementia is of course a particular focus for research using brain tissue. Also, there are many other neurodegenerative diseases, such as Parkinson’s, which could potentially benefit from this kind of research.