Dear Basil,
Thank you for your thoughtful post and for the good wishes. The New Year is for many of us a time of reflection and (re) assessment. I have been looking over our collection of photo's of the last 25-30 years- forced by a leak in the attic which meant that some were water damaged- sod's law meant that the most damaged were the one's from the early-mid seventies (young and carefree) which were very precious.... but I am glad to say we have saved most of them.
The whole exercise meant we had an emotional few days as we remembered better times and tried to catalogue them and put the photo's into some order. I came accross some of me and my family in Portland Oregon when I was there for the phase ll trial of imatinib (then called STI571). Looking at them you could be mistaken for thinking that we were just on an unusual family holiday but behind the smiles there was sadness and fear. Happily things turned out to be so much better than we dared to dream at that time-not just for me and my family but for many many others with CML... and this forum is proof of that.
It is with sadness that we enter this New Year as we hear that both Jackie and Beth lost their personal battles with CML.
As you know, we are currently waiting for the Appeal Panel's judgement on NICE's FAD for nilotinib and dastatinib in second line- as well as writing our response to the ACD on the same drugs in 1st line. It is likely that nilotinib we remain available but we have real concern for those who need access to dasatinib (for reasons of co-morbidities, certain mutations or side effects etc). As you know Jackie responded well to dasatinib (it is the only currently available TKI that has shown to be effective in Blast phase.
Coming down the line is bosutinib (Pfizer) later in 2012 and then ponatinib (Ariad) later on in 2013- both will be subject to NICE appraisals!
So we will see what this year brings. I am guessing that it will be far from easy, mainly because of the challenging economic situation here in Europe as all EU countries struggle to control rising healthcare costs. The present British coalition government has already taken steps to cut health costs with their 'reform' of the NHS. The more I learn about this the more worried I am about ongoing access to the best possible therapies.
It is important for us all to remain positive- both on a personal level as well as as members of the wider global CML community.
Sending my best wishes for 2012 to you and all CML patients and their families everywhere.
Sandy
