Having lost a very close family friend to malignant melanoma in May 2008, I set up www.factor50.org.uk in memory of him, in an effort to bring attention to this dreadful young person's disease and to raise funds for melanoma research.
Without boring everyone with far too much detail, Factor 50 has grown exponentially and we have raised a lot of money for The Christie, together with a lot of awareness of skin care, sunbed use, the danger of burning in the sun etc.
Last year I became involved in Sian James MP's Melanoma Task Force and meet at Westminster regularly. More recently I became a Stakeholder with NICE and was part of the appraisal team that met with NICE earlier this year in connection with Ipilumumab. I know that most of you will be familiar with the decision.
SInce the decision, we have been lobbying MPs and writing to NICE to tell them of the disappointment and despair of melanoma patients.
This week we met with Andy Burnham MP, Shadow Secretary of State for Health and had a very positive meeting with him. After that we had a meeting with Pauline Latham MP who had called a Parliamentary session. It was very well attended by several MPs and also some melanoma patients who all put their points to the meeting very well indeed. From here, Pauline Latham will be making representations to NICE.
Last week Stephen Gilbert MP drafted an Early Day Motion and I am urging as many people as possible to ask their MPs to sign up to this. http://www.parliament.uk/edm/2010-12/2362
Any problems or questions, please let me know.
I will try and update here as often as I can.
Take care all of you.
Gill
