Our little boy Archie - cafc_se7 running a half marathon for charity (p4)

Good Morning, 

Hope you are all well! 

Some of you may already be aware from the post I put in the ‘How Are You?’ thread, our boy Archie was born on the 12th September and shortly after he was unfortunately diagnosed with Cystic Fibrosis.

The hope and positivity we clung onto from the offset was the news of a life transforming drug called Kaftrio (Trikafta). Archie would be eligible for this from the age of 6 but just recently there have been talks of it dropping to the age of 3.

On Friday we learnt of the devastating news that ‘NICE’ have recommended that the NHS scrap Kaftrio from the NHS Drug List. This would painstakingly mean that all current patients on the drug would be able to continue using it but any new patients would be ineligible and would have to seek the drug privately (£100,000 per patient, per year). 

The founding brand of the drug, ‘Vertex’, have placed an astronomical cost on the drug despite it only costing around £6000 to manufacture. 

If you could very kindly take a short moment of your time to sign the petition for bringing this drug within reach to every patient, we would very much appreciate it. The link is below:

https://actionnetwork.org/forms/cf-drugs-for-everyone-everywhere-now/?fbclid=PAAaaCn5hvAXMs08laSEWfy_H2zTfHrqpBebycYKcWhSrIcJY-IESKKZNk9k8_aem_AYh5WvsAsAq2yNKl2FjDG73LR76ZTQrrdAsyTgxeW2jDt-LdtyHZ8DouIJ7wVYJ-QfQ 

In addition, I have added a link to a pre-written letter template where it can be sent directly to the CEO of Vertex demanding swift action and negotiation. The link is below:

Once again, your help is greatly appreciated by myself, my partner Nicky and of course Archie. 😁😁

Ps. Please feel free to forward the links on to friends/family! The more the merrier!! 👍🏼

Up the Addicks!