16/11/2023
Let's talk about Cystic Fibrosis treatments
As you may know my son Vincent has Cystic Fibrosis. It is a genetic condition that affects his lungs and digestive system. We found out that we were carriers when Ariadne died as she had it too. When meeting the Cystic Fibrosis team about it we were told that a new life-saving treatment had just come out. We were told that nowadays having Cystic fibrosis was like having diabetes. It is the Only treatment for CF. It adds about 30 years of life expectancy to children with the condition.
The N.I.C.E is now reviewing the drug and about it to remove it from the NHS. This means Vincent wouldn't have access to the only drug that would mean he can grow like an other child and be a healthy adult. Luckily this isn't the case in France but we feel very strongly about this decision in the UK. The only reason of the review is cost. And frankly we're bored seeing price tags on our children's lives. I am very aware of the privilege I have to being able to access the treatment from where I am. But treatment access should NOT be a privileged for the ones who can afford it privately or move away. This is threatening hundreds of lives. And we are talking about children.
Could you please sign this petition and share it with as many people as possible.
https://petition.parliament.uk/petitions/650674