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Re - NICE desision

I am sure this will have been raised previously, but surely as a group of patients, this can be raised in law under Human Rights legislation. After all the first statement under this legislation is 'The Right to Life'. I would like to think that there is a case to answer under law, given the very flawed reasoning of NICE. Maybe a class action ??. Any legal people have any thoughts ??
Hope everyone is well,
Kind Regards,
Craig

Hi Craig... yes I understand your point and thanks for raising it. We have to first go through the 'process' as outlined by NICE and jump through their hoops-

hopefully it will work (we are working hard on our official response not only for this 2nd line appraisal but also to a deadline- 25th May- for the 1st line appraisal later in the year)

we hope this will be enough to get the u-turn at the next meeting to finalise the ADC for resistant and also intolerant, on June 9th which decide the FAD for both groups of patients.

If the FAD is negative then we have to appeal it- but that is by a Judicial review- very difficult and expensive - we can try another way with EU human rights legislation. Long and difficult- plus expensive - process.

As you might or might realise- we are not funded- just a small grant from 'good' pharma who have supported us without demands for over 10 years. if we lose that we are sunk-  (unlike the big charities that people/patients, quite rightly, feel they should support...cancer research - LLRF- Macmillan- etc. who all do very good, and essential, work.) but we, generally - I think because we are online - are thought of as just 'being there' and so somehow don't need money to keep going.

If we lose funding we will be at risk of shutting down- just like so many other small single focus charities run solely by a few individual's committment. But without money that committement is unsustainable over the long term. 

So to mount a legal action against NICE is just not within our means. I can just about manage to mount this sort of campaign - i.e grass roots and patient led- so I hope we are all passionate enough about saving CML patients lives to really try and change NICEs' recommendations. It is the only real chance we have. I wish it were not so but that is the reality.

best wishes,

Sandy