Glenis Willmott will visit the Child Oncology Clinic in Leuven, Belgium, on Monday 17 September, where British teenager Sam White (15), from Newark, is receiving treatment for a rare brain tumour.
The clinic is using groundbreaking therapeutic vaccines from a patient’s own white blood cells and tumour tissue to fight malignant brain tumours.
But the clinic is having problems developing the treatment, partly due to the current rules on clinical trials, which Glenis argues are not working, and this is costing lives.
Within the next few weeks Glenis will be starting work on the Clinical Trials Directive, which is due to be revised by the European Parliament. Glenis wants to change the rules to encourage more clinical trials to be carried out in the UK and Europe.
“It is clear that the current rules are not working. The administrative burden which the legislation places on researchers has meant that, since 2001, the number of new trials has dropped by 25%. This means fewer skilled jobs in medical research, less progress fighting all sorts of diseases, and ultimately a cut in the number of lives being saved by new medicines.”
“If we can simplify the rules to encourage life-saving research, while still maintaining the high level of patient safety, then it could provide a real economic boost, as well as giving hope to the families battling these terrible diseases.”
“We need European rules for clinical trials to improve standards across the EU, and to ensure that trials carried out elsewhere in the EU are as safe and reliable as they are in the UK. Most importantly we need common rules so that we can carry out cross-border trials. In the case of many rare diseases, such as childhood cancers, there are just not enough patients in the UK for a trial to be feasible.”
“Working with our European partners means that we are able to find new treatments and cures for some of these rare diseases, where currently little or no treatment exists.”
Glenis has been working with the White family for over a year to ensure that the legislation helps people in their situation.
Pam White, Sam’s mother, said: “All through Sam’s illness we have had to rely on experimental medicine. More clinical trials are needed into childhood and other rare cancers to ensure that in the future we have tried and tested drugs and therapies that can save children’s lives.”