Rotherham mum says plan to axe cystic fibrosis drug is 'death sentence' for her baby
The NHS treatment could add decades onto the life of three-month-old Lennox
Last updated 13th Nov 2023
A Rotherham mum says it feels like her newborn baby has been given a 'death sentence' - as the drug that could add decades to his life may be withdrawn from the NHS.
The National Institute for Health and Care Excellence (NICE) is consulting on plans to stop funding medicines that are currently available to people with cystic fibrosis.
One of these is Kaftrio, which Melissa Jenkinson’s three-month-old Lennox was in line to receive when he was old enough.
The drug is likened to the closest thing available to a cure and could help Lennox live into his 70s or 80s.
Without the drug, Melissa says he may only live to his 20s.
'I've only just given birth to my baby and I feel like a death sentence has been put on his head'
“When Lennox first got diagnosed we were told all this awful information about life expectancy, everything he’ll have to do day to day, what this means for us…
“But then at the end of this awful conversation there was a little bit of hope and they said if there’s ever a time to have cystic fibrosis it’s now because of the amazing medications that have come out in the past few years.
“They reassured us that there’s a plan, there’s no reason he can’t live a normal life with this drug.
“It was just a tiny glimmer of hope that made us think right, it might be bad now, but one day he will be put onto these amazing medications.
“Now to be told that it’s too expensive for the NHS to carry on buying… it feels like your son’s life has been taken away.
“I’ve only just given birth to my baby boy and I feel like a death sentence has been put on his head.
“It’s like we’ve done all these amazing things to get here, why is this being taken away? We shouldn’t be going backwards with a disease, we should be going forwards.
“I completely understand that the NHS funds are not bottomless, they have to be really careful about what they spend their money on. But then the other part of me thinks, why have our children’s lives got a price tag on them?
“I’m obviously going to have to sit my son down at some stage and explain to him that he’s got this condition. And that conversation could go on one of two ways.
“If he’s not on this drug it will be ‘there’s no point going to college, there’s no point going to university because unfortunately you’re not going to live much longer than that’. And no parent should have to sit down their child and say those words.”
Cystic fibrosis is an inherited condition which affects around one in every 2,500 babies born in the UK each year.
Around two million people in the UK carry the faulty CF gene, usually without knowing.
It causes issues with breathing and digestion, and people with the condition typically develop wheezing, shortness of breath and repeated chest infections.
The latest draft guidance from NICE, which provides national advice on healthcare, said it would not recommend the use of Kaftrio, Symkevi and Orkambi for new cystic fibrosis patients.
A consultation is running until the 24th of November.
Helen Knight, director of medicines evaluation at NICE said: "We are evaluating the cost-effectiveness of these cystic fibrosis medicines to ensure that taxpayers continue to get value for money after interim access where further data was collected.
“The committee want to hear from stakeholders through consultation on important aspects of its draft conclusions. This is so that we have all the relevant information to accurately capture the value of these effective medicines when the committee makes its final decision. We are continuing to work collaboratively with the company, NHS England and other stakeholders including the Cystic Fibrosis Trust to deliver the best outcome both for people with cystic fibrosis and for the wider NHS.
"Existing patients and new patients who are started on treatment while the NICE evaluation is ongoing will continue to have access to the treatments after NICE has issued its final recommendations irrespective of the outcome."