My Lords, I will speak on Amendment 11 and in support of what my noble friend Lady Thornton, the noble Baroness, Lady Finlay of Llandaff, and the noble Lord, Lord Cormack, said. I do so as the former chair of Great Ormond Street Hospital Foundation Trust, which I chaired for more than eight years until last summer. As many noble Lords know, it treats children with rare diseases and very serious illnesses. Much of its ground-breaking and innovative work, which is internationally renowned, is done as a result of, and based on, its research, much of which is carried out in collaboration with colleagues across Europe.
I will illustrate this in three different areas, which I think will bring home to your Lordships just how important it is that we do not abandon or neglect this issue. I will start with childhood cancer. Some 92% of
our most important clinical trials for children with cancer in the UK require international collaboration. In 30%, the UK is the lead country, co-ordinating the international collaborative trials. This leadership role would sadly change rapidly if we no longer followed the same regulatory framework for clinical research as the rest of the European Union.
I turn to childhood epilepsies. Children and young people with epilepsies that are resistant to current therapies represent, as a group, at least 137 rare diseases with seizures as a common symptom. Collaborative European multi-centred trials are, I stress, the only way forward in assessing new targeted treatments. There are simply not enough patients in these categories of the many different aspects of epilepsy to do this work in one country alone.
I turn thirdly to children with HIV infection. Trials in paediatric HIV infection over the last 25 years have all been international. The UK works in partnership and collaboration with trial centres throughout Europe, and in particularly close collaboration with Italy, France and Spain. HIV treatment is very fast moving. It is vital that medicines for children do not get left behind. Our important European collaborations, including EU funding of our network, training and capacity building, have ensured the timely availability of drugs for children, not only in Europe but worldwide.
I cannot overstate the concern of the consultants and research specialists involved in this work about the threat posed for them by leaving the European Union. I do not think it an exaggeration to say that, without such work, the lives of very sick children would be sacrificed. I hope we can think again about this.
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