European Union (Withdrawal) Bill

Baroness Thornton Excerpts

Committee: 6th sitting (Hansard): House of Lords
Monday 12th March 2018 Lords Chamber

[Lord Spicer (Con)]

My Lords, I have a tentative question. If it is true that we do not trust our own legal environment with medical research in which, as has been said, we have great expertise, why should we trust ourselves with anything else? Across the whole of the Bill, responsibility is being transferred to this country. Why should we not be able to do that for medical research as much as for anything else?

[Baroness Thornton (Lab)]

This benefits all patient populations, and is particularly important for paediatric and rare cancers—diseases which, precisely because they are uncommon, are among the hardest to research and treat. You therefore need a larger pool than the 66 million people who live in this country: Europe has a combined population of 510 million to draw on. That is nothing to do with trust; it is to do with how clinical trials need to be carried out. You need a larger pool of patients to test these drugs.

I was pleased to add my name to the amendment in the name of the noble Lord, Lord Patel. I raised this issue in my speech at Second Reading and will mention only one additional matter, which is to do with rare paediatric illness; tumour types which affect relatively few people; and rare cancers which translate to over 20% of all cancer diagnoses across the world. If the UK is to make progress on therapies for paediatric and rare cancer, it is vital that we can work closely with EU nations on clinical trials. Cross-border collaboration is crucial to paediatric and rare cancer clinical trials. Some 75% of clinical trials in the EU involve cross-national collaboration, rising to 86% for rare disease trials. As noble Lords have remarked, that is because of the patient population across Europe. We will be doing a huge disservice to our children, and to the cancers which threaten a few of them, if we fall out of this system. It is as simple as that.

The BEACON clinical trial system is an example of how cross-national collaboration is fighting back against rare paediatric cancers. Neuroblastoma is a form of cancer that affects around 100 children, mostly under the age of five, every year in the UK. More than half the children with aggressive forms of the cancer will see it return and, for these children, there are few treatment options left. In 2013, Cancer Research UK scientists and paediatric cancer specialists launched the BEACON-neuroblastoma trial to find the best chemotherapy treatment for children and young adults with recurring neuroblastoma. To do this, it is bringing together clinicians and scientists from 10 European countries and two international consortia, with funding from Cancer Research UK and European partners. It is a fantastic example of successful European collaboration. The rarity of this neuroblastoma and the low number of patients means that trials could not have happened in a single European country. It is vital that this type of cancer trial—

[Baroness Kramer (LD)]

Given the noble Baroness’s expertise on this issue, I wish to ask her a question. As I understand it, medicine is becoming more and more personalised and customised. Therefore, by definition, the pool for a far wider suite of diseases is becoming smaller and smaller because of that much narrower customisation and personalisation. Therefore, the situation with rare diseases today is about to become the norm across a very wide range of diseases. Does the noble Baroness read it that way?

[Baroness Thornton]

I absolutely agree with the noble Baroness. In fact, several noble Lords who are much more expert on this have already mentioned that aspect. The noble Baroness is absolutely right. I do not think I need to say anything more. I think this amendment is the remedy. I hope that the Government will respond positively to it. The case is unanswerable.

[Baroness Ludford (LD)]

My Lords, when she replies, will the Minister comment on the remarks of her noble and learned friend Lord Keen of Elie on 28 February, when we discussed this issue in the context of directives whose implementation date was beyond exit day? The noble and learned Lord addressed this issue, partly because the noble Baroness, Lady Hayter, mentioned regulations. In his reply, he said something rather interesting: namely:

“There are examples of regulations … where we accept that the regulation has come into domestic law but its actual operation is deferred, perhaps until 2020”.


I think that date was given just as an example. The noble and learned Lord continued:

“That regulation … will form part of our domestic law at the exit date, even though the operative provisions come into force only after the exit date”.—[Official Report, 28/2/18; col. 690.]


Will the Minister clarify whether she believes that the clinical trials regulation falls into the category envisaged by the noble and learned Lord, Lord Keen of Elie? If not, why not?

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[Baroness Thornton]

Will the Government therefore consider amending the Bill to allow that to happen?

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[Baroness Goldie]

My noble friend Lord O’Shaughnessy, who is advising me, says that once there is a new regime in Europe, all non-member states will have to make a decision about whether or not to be compliant with that. We hope that in our Brexit negotiations we have made clear—the Prime Minister has emphasised this—the huge importance we attach to these issues. They are massively important and we want to get a positive outcome in the negotiations, but it would be premature at this stage to incorporate into this Bill the anticipated enactment of the new regulation because it might be inert law.

[Baroness Thornton]

I have already written to the Minister asking for a meeting to discuss this issue and have copied the letter to many noble Lords. It is important that we have the meeting before the next stage of the Bill.

[Baroness Goldie]

I am happy, as are my colleagues, to engage in and attend meetings and to listen to the views expressed.

I was going to make an observation about the amendment of the noble Lord, Lord Patel. The noble Lord, Lord Kakkar, made an important point about how we deal with whatever law we will have if this new regulation has not become law when we leave. It is important that we have the flexibility in the Bill to deal with such matters but, under the amendment of the noble Lord, Lord Patel—I am sure it is not intentional—there could inadvertently be a delay in dealing with them as we leave because his amendment stipulates that Clause 7 powers could not make regulations until a report had been laid before both Houses assessing the costs and benefits of adopting the new EU regulation. We do not know when that is coming through. We think it might be March 2020—we do not know—but in the meantime we could be in limbo in trying to do the very things that noble Lords want us to be able to do in respect of the existing law. For these reasons, I urge the noble Lord to withdraw his amendment.