Urge NICE to Retain Life-Saving Cystic Fibrosis Drug
The Issue
I am a mam of 3 children and my middle child Lucas has got CF which he got diagonosed with at just 3 weeks old. Lucas has to take lots of different medication and do treatments to keep healthy every day, so when we got told by our local CF team that Lucas has got the right mutations to start on a drug when he was 4 meant the world to us as a family, when Lucas turned 4 we got the delivery and all the family where so happy and proud as you can tell by my photo that our nhs had approved this medication but unfortunately Lucas body didn’t agree with it and he started having side affects so was taken off it,
we then got told Lucas could go on a new drug which has been approved by the nhs when he turns 6 so we’ve been counting down the days for this, for us to then hear on the news that the NICE are looking at withdrawing this drug which is a drug which prolongs CF patients lives and this is due to the cost. We are all very disheartened at this and would like anyone to help support us in keeping this drug approved for every child who has or is born with Cf from now on.
The National Institute for Health and Care Excellence (NICE) is considering the withdrawal of a crucial medication for cystic fibrosis due to its cost implications on the NHS. This decision could gravely affect thousands of cystic fibrosis patients who rely on this drug for their survival. Cystic fibrosis is a debilitating genetic disorder that affects more than 10,000 people in the UK alone (source: Cystic Fibrosis Trust). The proposed drug withdrawal could potentially jeopardize their lives. We understand the financial constraints faced by our healthcare system, but we firmly believe that life-saving treatments should never be compromised due to cost. We urge NICE to reconsider this decision and continue providing this vital medication for all cystic fibrosis patients. Please sign this petition and help us protect the lives of thousands suffering from this devastating disease.
"Without this medication we know it means that their lives are going to be really challenging, full of pain and fighting horrible infections and cut short".
"Please give our children the future they deserve, because they deserve to have a full life.
"No child deserves a price tag."
60,297
The Issue
I am a mam of 3 children and my middle child Lucas has got CF which he got diagonosed with at just 3 weeks old. Lucas has to take lots of different medication and do treatments to keep healthy every day, so when we got told by our local CF team that Lucas has got the right mutations to start on a drug when he was 4 meant the world to us as a family, when Lucas turned 4 we got the delivery and all the family where so happy and proud as you can tell by my photo that our nhs had approved this medication but unfortunately Lucas body didn’t agree with it and he started having side affects so was taken off it,
we then got told Lucas could go on a new drug which has been approved by the nhs when he turns 6 so we’ve been counting down the days for this, for us to then hear on the news that the NICE are looking at withdrawing this drug which is a drug which prolongs CF patients lives and this is due to the cost. We are all very disheartened at this and would like anyone to help support us in keeping this drug approved for every child who has or is born with Cf from now on.
The National Institute for Health and Care Excellence (NICE) is considering the withdrawal of a crucial medication for cystic fibrosis due to its cost implications on the NHS. This decision could gravely affect thousands of cystic fibrosis patients who rely on this drug for their survival. Cystic fibrosis is a debilitating genetic disorder that affects more than 10,000 people in the UK alone (source: Cystic Fibrosis Trust). The proposed drug withdrawal could potentially jeopardize their lives. We understand the financial constraints faced by our healthcare system, but we firmly believe that life-saving treatments should never be compromised due to cost. We urge NICE to reconsider this decision and continue providing this vital medication for all cystic fibrosis patients. Please sign this petition and help us protect the lives of thousands suffering from this devastating disease.
"Without this medication we know it means that their lives are going to be really challenging, full of pain and fighting horrible infections and cut short".
"Please give our children the future they deserve, because they deserve to have a full life.
"No child deserves a price tag."
Petition Updates
Share this petition
Petition created on 14 November 2023