This week I hosted an event in the European Parliament to mark Childhood Cancer Awareness Day. Every year around 1,500 children are diagnosed with cancer in the UK, and around 15,000 across the whole EU. Most are brain tumours or bone cancers, but every childhood cancer is a rare cancer, which makes them especially difficult to treat. Although treatment has improved greatly, tragically around 25% of children with cancer will die.
The EU has funded a lot of research into childhood and adolescent cancers, and has legislation in place for paediatric medicines, clinical trials and treatment of rare diseases, all relevant for children with cancer. But whilst we have made a lot of progress, we must continue to improve the situation, starting with the Clinical Trials Directive.
Because there are so few patients with certain types of cancer we need to be able to carry out cross border trials with other EU countries. That’s why we have the Clinical Trials Directive, but at the moment it isn’t working. EU countries are still using slightly different standards for clinical trials, which means researchers have to apply multiple times for a clinical trial, with different applications. Some countries might approve the trial, others might reject it. This makes the whole process time-consuming, expensive, and sometimes futile. That’s why we want to make sure all EU countries are playing by the same rules.
We need to do everything we can to encourage more research and more clinical trials, specially designed for children and adolescents. There is no known treatment that can save a child with some types of brain tumour. We need new clinical trials to provide hope to these children and their families.
We also need more expertise and awareness of childhood cancers, because the earlier the cancer is diagnosed, the higher the chances are that the child can survive. I am lucky to have the excellent Nottingham Children’s Brain Tumour Research Centre in my constituency which is an example of the best way to care for children with cancer. Through the centre I have been working with Jimmyteens.tv, the website where young people can share their experiences of cancer. Yesterday we watched the moving story of Charlie, which you can watch here.