Mum's heartbreak as her son's life extending drug deemed too expensive

10 November 2023 , 07:32

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Mum's heartbreak as her son's life extending drug deemed too expensive

A mum has shared her concern as a drug which would extend her three-year-old son's life may be scrapped by the NHS as it's been deemed too expensive.

Anna Armstrong's son, Archie, was born with cystic fibrosis, and X-rays and blood tests have showed the drug Kaftrio would improve his lung function. Anna. 23, calls the drug "the closest thing to a cure" of cystic fibrosis but Archie may never know the benefit of it as he grows up.

Although the National Institute for Health and and Care Excellence (NICE), which provides health guidelines for the NHS, published draft guidelines last October which acknowledged the effectiveness of Kaftrio in treating cystic fibrosis, further draft guidelines question whether it is cost effective.

Anna Armstrong holding her son Archie next to her partner Luke holding their daughter Darcy (Anna Armstrong)

It means the NHS could pull the plug on the drug at any time, something Anna believes would devastate her family, from Formby, Merseyside. Since August 2020, anyone over the age of six who suffers from cystic fibrosis, a genetic condition that causes the build-up of mucus in the lungs and digestive system, has been eligible to be prescribed the drug on the NHS. Kaftrio improves lung function significantly, which improves the persons breathing and overall quality of life.

Speaking to Liverpool Echo, Anna said: "There isn't a cure for cystic fibrosis but this is the closest thing to a cure... Kaftrio improves the lung function by a ridiculous amount... It doesn't make sense why profit is more important. It's like it's putting a price on children's lives.

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"It's like having a carrot on a stick dangled in front of you and then it's snatched away because it's too expensive. It's heartbreakingly devastating. I had dreams of having grandchildren and now I'm thinking is my son going to reach 30?"

Her fury is shared by Pamela Millward-Browning, whose four-year-old, Max, would also benefit from the same medication. Just last week, he had lung function tests in preparation to start the drug. Pamela said: "Kaftrio prolongs life and to have a drug which gives your child a few extra years is a saviour, it's unbelievable... I can't believe I might have to beg for a drug which will save our children. The thought that I might outlive my son is unthinkable."

Pamela Millward-Browning and her son Max (Pamela Millward-Browning)

In a statement, Helen Knight, director of medicines evaluations at NICE said: "We are evaluating the cost-effectiveness of these cystic fibrosis medicines to ensure that taxpayers continue to get value for money. 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."

The statement continues: "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."

The cost effectiveness of Kaftrio being questioned in the draft guidelines is due to the price the drug costs per person. According to Cystic Fibrosis News Today it costs more than $300,000 per patient annually; roughly £240,000 in the UK. This means that while it will remain available for patients outside of the NHS, it will be unaffordable for most.

Ed Holt