Our Little Boy Archie (Extended) 21.11.2023

cafc_se7

Morning All,

I am starting a new thread separate to the last one, just to ensure as many of you as possible catch this latest petition.

Thank you so much for your responses previously and also for your kind wishes/comments for Archie (and us). 

There is now a UK Government based petition (below) which I would kindly ask for you to take a short period of your time to sign. 

https://petition.parliament.uk/petitions/650674

The story around the availability of the drug ‘Kaftrio’, as some of you may have already seen, is getting some really decent coverage in the mainstream press just recently.

100,000 signatures would mean that this topic is given consideration for discussion in parliament (it has already briefly been mentioned in parliament). 

Thank you so much for your time once again! 

Praying for some good news in weeks/months to come! 

Cheers,

Greg, Nicky and Archie.

(Up the Addicks)

kigelia

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. 

aliwibble

@cafc_se7, can you link back to the old thread, or give a bit of background for people who missed your previous posts about Archie? It may help get a few more signatures on the petition. ( You can still edit the first post for the next 24 hours)

cafc_se7

Will do. 

aliwibble

Oops, I meant edit the first post in this thread, not the other thread 😳.  To save having two threads on the go at once, I've amended the title of the other one to flag up the new petition, and have closed this thread, and will copy Kigelia's post over to the other one.