Cancer is a devastating disease and one that, sadly, almost everyone has had first hand experience of. The experience of being diagnosed and treated for cancer is extremely difficult, and can be even more terrifying if you are diagnosed with a rare cancer. Of the 280 types of cancer around 250 are rare forms of the disease, which doctors often know little about. This makes diagnosis and treatment so much harder. Of all the people affected by cancer, up to a third will have a rare cancer.
Because each type of these rare forms of the disease only affects a relatively small amount of people it can be difficult, if not impossible, to try out new drugs or therapies on patients in one country alone. Therefore it is vital that we can easily conduct cross-border clinical trials for treatments of rare cancers. There is already an EU directive in place that should mean that clinical trials meet the same standards and follow the same procedure no matter which member state they are carried out in. However EU governments have implemented the directive in different ways which makes the system confusing and cross-border trials difficult to organise. Also the amount of administration and the costs involved in clinical trials means that less and less are being carried out, especially on drugs that only treat rare types of cancer.
That's why the European Parliament will be revising the legislation next year. To prepare for this I organised the Parliament's official Health Working Group, which I co-chair, to focus on rare cancers. I invited two inspirational young men, Peter from Sheffield who is now 25, and Sam from
in my constituency who is just 14, to speak at the event. Both Peter and Sam have survived rare forms of cancer, but were subject to mis-diagnosis and experimentation with drugs and therapies because too little was known about the types of tumours that they had. The problem is especially bad for children, as trials are not often carried out specifically on children, and instead they are given adult drugs based on pure guess work. We need to make sure that it is easier to carry out trials for new treatments of rare cancers, and childhood cancers in particular. Newark
At the event Peter showed a moving video from the website he now works for, jimmyteens.tv, which is a forum for young cancer sufferers to share their experiences creatively. The full version of this touching video telling the story of Alice, who was diagnosed with a rare form of cancer aged 15, can be seen here: http://jimmyteens.tv/2006/11/home-sweet-home/