Thank you so much @Braziliance for keeping to your word and mentioning Archie and our story at the end of your video! Hopefully will go a long way to getting some more numbers signed up on the petition!
I was there Saturday down the front. Next away day I will most definitely be buying you a beer (Orient - Boxing Day).
Great video too!
PS hope your back gets better soon! 👍🏼
Absolutely no worries mate, my views are quite sporadic on the ol' YouTube but hopefully enough people see that part to click the links.
Signed and letter sent. It's heartbreaking reading things like this. The worst part about this is it's all down to the funding. I wish you and you family all the best and if there's anything else we can do, just shout.
My first post here despite being a fan for 56 years or thereabouts since my dear old Dad took me to the Valley when I was 7. Signed and all the best to you.
signed. It is a hugely expensive drug from what
I can see but it does seem to be very effective. I hope the decision by
NICE is essentially a bargaining tactic with the drug manufacturer. I
would hope that given the support the NHS appears to have given the
manufacturer with the roll out of the drug (thus providing them with
fantastic data to make it easier to push it into other countries) that
there is some movement.
Having taught teenagers with CF and some other genetic conditions, I have seen the impact episodes of illness can have on their education as well as the stress on them and their families, so I am naturally in favour of any treatment which can ease their situation, and have accordingly signed the petitions. In addition to the wish to save CF children from the on-going difficulties of managing their condition, I want every person to have the maximum benefit from their education to support all aspects of their future lives.
However, NICE are (I suspect) mainly looking at the financial cost/benefit analysis of the NHS, weighing up the eye-wateringly high cost of this medication against life-long treatment of the sufferer, irrespective of the implications for the wider life-chances of the individual. Unless and until "big pharma" reduces its prices, I'm afraid our poor NHS will struggle to afford such treatments. And of course, "reducing the tax burden", rather than redistributing it, will do nothing to improve the public services on which the majority of the population depend.
So, although the question of this new treatment has already been briefly raised on the floor of the House - in PMQs an MP asked the PM to ensure the Minister for Health was communicating with NICE about it - and I do feel it deserves a wider public airing via a petition debate, I will be amazed (as well as delighted) if NICE's decision is reversed. My only hope is that it (NICE's decision) is a bargaining ploy to try to get the price reduced to something more affordable.
Comments
You really don't have to
Thank you, appreciate that mate
Signed and all the best to you.
Please find below another petition which I would really appreciate it if you could sign.
This is a UK based petition which if it reaches 100,000 it could be raised as a topic for discussion in parliament.
Once again, thank you so much for those of you who have taken the time to do so already and also for all of your kind words!
https://petition.parliament.uk/petitions/650674
Thanks,
Greg, Nicky and Archie
Petition looks to be going well, very best wishes to you all...
Thanks to you all!
However, NICE are (I suspect) mainly looking at the financial cost/benefit analysis of the NHS, weighing up the eye-wateringly high cost of this medication against life-long treatment of the sufferer, irrespective of the implications for the wider life-chances of the individual. Unless and until "big pharma" reduces its prices, I'm afraid our poor NHS will struggle to afford such treatments. And of course, "reducing the tax burden", rather than redistributing it, will do nothing to improve the public services on which the majority of the population depend.
So, although the question of this new treatment has already been briefly raised on the floor of the House - in PMQs an MP asked the PM to ensure the Minister for Health was communicating with NICE about it - and I do feel it deserves a wider public airing via a petition debate, I will be amazed (as well as delighted) if NICE's decision is reversed. My only hope is that it (NICE's decision) is a bargaining ploy to try to get the price reduced to something more affordable.