Dr P. and I at the launch of Afinitor.
The official UK launch of Afinitor was held by Novartis in London on September 16th and Dr Porfiri and I were invited to attend. Naturally I was very keen to go - Afinitor is the drug which has been developed specifically for when Sutent fails to work, or stops working. I didn't know at the time how close I was to needing to myself though.
Dr. P and I took part in a very informal 'sofa chat' with Dr. Scott from Novartis in front of what must have been 80 plus reps and other employees. 'Jane's Journey' was shown (I still get a bit tearful no matter how many times I see it) and I spoke about how important and precious the past 18 months had been to me and my family and friends, how having access to these new life extending drugs was giving us KC patients a real hope for the future, the fact we may have a future after all.
Dr P. spoke very movingly about his job as an oncologist, how he can now treat all his patients with some of the latest drugs now (although three are still denied funding by NICE) and how pharmaceutical companies such as Novartis are researching and developing new drugs right now, in fact there are 28 new mRcc drugs being trialed in the US right now.
Afinitor is now licensed as the approved second line treatment for mRcc when other targeted therapies have failed. It works in a slightly different way to Sutent in that it targets a protein in the cancer cells which affect cell division and blood vessel growth. To be honest its all a bit complicated for me, but the main thing is that Afinitor works - and it does. It more than doubled the time without tumour growth or death in its trials.
Afterwards, during lunch, I had the chance to meet and speak to most of the Novartis team. I have to say I was completely overwhelmed by the drive, determination and commitment to their work they showed - particularly in regard to Afinitor. As patients I don't think we always appreciate the work that is done on our behalf - after all, this is all for our benefit at the end of the day.
When Martin and I left later that afternoon it was with a real sense of inspiration - and a real hope for the future. There may well be that we have yet another fight on our hands with NICE to gain approval and funding but I'm ready for it - because this is a battle that we MUST win.