Blood Safety (Variant Creutzfeldt-Jakob Disease)

Frank Dobson Excerpts

Thursday 29th January 2015 Westminster Hall

[Frank Dobson (Holborn and St Pancras) (Lab)]

I start by declaring two peculiar interests. When I was Secretary of State for Health, I introduced the leucodepletion of the blood supply, which led to the establishment of the prion unit that now operates at the University college London institute of neurology in my constituency. I have therefore had a constituency interest, as well as a continuing interest, in the brilliant work of the large team run by Professor John Collinge.

The first time I saw the suggestion that variant CJD might be transmitted through blood or blood products was when I was reading a document produced by the Department that had been sent to me in a red box to keep me occupied during the Labour party conference in Brighton. The theme of the document was that Pasteur Merieux, the French pharmaceutical company, was being difficult by refusing to accept any blood or blood products from Britain because of the possibility of contamination by variant CJD. The document then stated that, as a result, we could of course no longer guarantee that variant CJD was not transmitted through blood or blood products. At that point, my eyes popped out and I telephoned the office in London to say, “Get the experts into my room. I am coming back from Brighton this instant.” The meeting included Sir John Pattison, the then head of the Spongiform Encephalopathy Advisory Committee and of the medical school at University college London, and Professor John Collinge, who was at that time at Imperial college. I was there as the representative of the ignorant layperson—I was adequately equipped for both words—but I was glad I was present.

The experts said that it was not certain that CJD could be transmitted through blood or blood products, but that it was a possibility. Some of the people at the meeting, and some of those involved in advising me afterwards, were strongly of the opinion that that was not possible. As the Committee’s excellent report states, however, it was a “prescient” decision to introduce leucodepletion

“at a time when the prevailing scientific view was that blood transfusion would not prove to be a source of prion transmission.”

The balance of opinion at the time was therefore against doing anything. Nevertheless, the next thing I wanted to know, even if nothing was certain, was whether and how CJD was being transmitted. The experts said, “If it is being transmitted, it is probably being transmitted in the white corpuscles, but not necessarily.” I asked, “What can we do about it?” They said that in some cases we already leucodeplete—take the white corpuscles out of the blood—and that we could do that for the whole of the blood stock. I asked how much that would cost—not at that meeting, admittedly, but a week or two later—to which the answer was, “Probably somewhere approaching £100 million.” Having looked at the conflicting evidence, I said, “Right, do it.” I then went over to talk to the Prime Minister about several things. At the end of our little get together, I said, “By the way, I have just authorised spending £100 million on a project in the hope that it’s a waste of money.” I will not report his response to hon. Members because the language was more vulgar than even I use.

I freely admit that I acted as I did because I had observed the BSE crisis, when officialdom had kept punting things to all sorts of special advisory committees and God knows what, with the various Departments involved being what might be described as a decision-free zone. Nothing had been done and disaster had resulted. One of the questions that arose was, “If the disease is being spread in this way, how many people are likely to be affected?” Things that were ludicrously described as computer projections were produced, and figures ranged from about 200 people to some 2.5 million to 3 million, if I remember rightly. Again, officialdom and the expert bodies did not know much more than I did, frankly.

I nevertheless gave the go-ahead, and that has proved to be useful, according to the people who are now giving scientific evidence to the Committee and Ministers. However, the process has been very costly, and one of my few criticisms of the report is that it gives the impression that protecting the blood supply from vCJD costs between £4 million and £4.5 million a year. Leucodepletion costs about £4 million to £4.5 million a year, but a year or two ago, which was the last time I asked a parliamentary question about this, the total cost incurred in protecting the blood supply from vCJD—I think that this was for 2011-12—was £540 million. That is because, for example, we now import plasma, whereas we used to export it. There is a substantial loss of income from our not being able to export plasma and other blood products because of people’s fear of vCJD. These days, fending off vCJD certainly costs more than £600 million, in addition to, as the hon. Member for Mole Valley (Sir Paul Beresford) said, about £200 million a year on synthetic clotting factor for haemophiliacs. The interest in sorting out this matter is therefore not just clinical, not just about public decency, not just ethical and not just patient-centred, because there is a huge financial interest in sorting it out. That money could otherwise be spent on other areas of the national health service, so we need clarification and an end to the uncertainty.

The prion unit at the institute of neurology, led by Professor Collinge, has proved to be invaluable. The people there have done magnificent work. They are the people who came up with the blood test, although that test has been denied the opportunity of full-scale retesting here to try to match and outdo the testing that was arranged in the United States. If we are spending millions of pounds, quite rightly, on that first-class fundamental research at the institute of neurology, why are we indulging in that famous British lunacy of then not getting on with applying that research? That has happened in the case of the blood test.

As the hon. Member for Mole Valley said, there is also the question of the contamination of instruments. Again, it was the people in the institute of neurology—Professor Collinge’s team—who came up with the initial ideas to make use of the fact that the prions cleave to metal. That was then taken further by DuPont, but it was not taken further by the national health service. If there is a threat—it is still an “if”—that would be one way of countering it, and it would not be wildly expensive.

The blood test and the instruments were, in a way, sideshows. They were about trying to do something practical and effective to help as people got on with the fundamental work of trying to come up with a treatment for vCJD, which they have now done. I have a great deal of time for the current chief medical officer, as I have had for all her predecessors—they were all people of great distinction—but she sort of said, “Well, you know, they’ve been given a lot of money, particularly Professor Collinge,” as though he stuffed it in his back pocket and went boozing of an evening. The money has been spent. The unit invested that money—more than £90 million—in fundamental research. It has now come up with what it thinks is a treatment, but it needs £2 million, £3 million or £4 million to proceed with the pre-clinical trials. Having invested that £90 million, however, the researchers are being told, “We can’t come up with the £2 million, £3 million or £4 million to see whether it works.” That seems to be yet another example of British scientific lunacy: doing the fundamental research, but not getting on with applying it.

We therefore have the situation that the institute of neurology has come up with a blood test, instrument cleaning and treatment, none of which has been properly and effectively pursued. I am not vilifying the Minister or any of her predecessors, but quite frankly—the Committee’s report says this—if I had fallen for people saying, “Oh, we have to get 43 different scientific advisory committees to look into leucodepletion,” leucodepletion would not have been introduced, and we would all now be in a much worse situation.

We need some boldness from Ministers. If the Treasury says that we cannot find the money, I suggest that the people at the Department of Health and those with responsibility for science pick a couple of lunatic things that the Treasury is spending money on—it always has some lunatic projects of its own—and say, “We think we deserve a bit more, so you could stop doing x, y and z.” At the moment, we are in danger of, to use the old phrase, spoiling the ship for a ha’p’orth of tar. I cannot think of any rational organisation that would invest in deploying immense expertise over a long period of time, spending £90 million, but then say, “We can’t find £3 million or £4 million to test out the effectiveness of what has been produced.” I hope that Ministers will accept that they are looking stupid, and the worst thing that anybody can do is look stupid. I am an advocate of non-stupidity, if we can possibly have it.

--- Later in debate ---

[Jane Ellison]

Marvellous. My mistake. In that case, I have plenty of time.

In case there is anything I cannot cover in my remarks, I should point out that we have already committed to write to the Committee with a further update before the end of the Session. There are issues where we will have more to report, and I will focus on a couple of specifics today.

Let me start by thanking the Committee for the opportunity to look at the issue again. May I also apologise for the fact that I am holding my notes so far away from me? I have left my glasses at home.

[Frank Dobson]

Would you like to try mine?

[Jane Ellison]

Let’s see how I get on, although I thank the right hon. Gentleman for that kind offer.

First, let me reiterate—I said this in the evidence sessions, but perhaps we did not stress it enough in responding to the Committee—that there is no hint of complacency over the issue on the part of the Government, the Department of Health, me, the chief medical officer or anyone else, although I understand why that question mark is in the title. I would hate for my optimism about our perhaps being in a better place than we were to be characterised in any sense as complacency or as not wanting to keep this area under careful review.

In that respect, I want, like other contributors to the debate, to mention the number of cases. We have had one UK case of vCJD since 2010. The UK’s annual mortality rate per million for all forms of CJD from 1993 to 2012 was 1.1, which, I am pleased to say, is lower than that in France, Spain, Germany and Italy. On secondary transmissions, there is no evidence of any person-to-person transmissions via blood since 1999, as was said in the debate. There is also no evidence of any person-to-person transmissions via surgery or dentistry. However, I accept that the fact that there is no evidence does not mean there is no challenge.

On Government funding, the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), referred to the ring-fenced budget. The Department of Health has provided more than £95 million for CJD studies since 2001. It is funding 18 CJD-related research projects with total investment of about £45.5 million. In 2011, it was estimated that about £500 million had been spent on prion-related research.

Professor Collinge has been mentioned. His advocates are here in the form of hon. and right hon. Members who are familiar with the work done by him and his unit. The Department of Health has provided more than £16 million of research funding to the National Prion Clinic, led by Professor Collinge, since 1996. The Medical Research Council continues to provide £6 million annually to fund the MRC prion unit, which is led, again, by Professor Collinge. Members have said that that has been said before, but it is important to stress that it is the context in which the Committee’s report was written.

There was perhaps a slight lack of generosity in the way some contributions to the debate characterised the attitude of the Department and the Government, and I want, therefore, to make two general points about science. I rather disagree with the point made by the right hon. Member for Holborn and St Pancras (Frank Dobson) that if we have spent an awful lot on theoretical research, it follows that we must always seek to apply it. It would be slightly dangerous always to adopt that principle, because that would make the funders of research far more risk-averse. If there was an obligation to put into practice every piece of research one had backed, there would be an inclination to back away from the more risky pieces of research and to back only the winners. That is just a comment on the principle; it does not necessarily relate to this issue.

The second point I hope colleagues would concede is that there is surely a difference between having one set of scientists look at something and then another set of scientists look at it and reach different conclusions and recommendations, and being in any sense complacent. A lot of different people with great scientific knowledge have advised Ministers over the years and have sometimes come to different conclusions or made different recommendations. It is important to stress that in all the ways in which we have responded to the report we have been guided by some very senior scientists. I want to put that on the record.

[Frank Dobson]

Will the Minister confirm that none of the scientific advisers has advised her or any other Minister that the John Collinge treatment proposals would not work or ought not to be tested?

[Jane Ellison]

I will say a few words about some aspects of the Collinge work later, but I want to focus on giving an update on some of the work on the assays.