Archie Armstrong was born with cystic fibrosis and a drug called Kaftrio would help him, but current guidelines published for the NHS call into question whether the drug is cost-effective.
A mother has raised concerns that a life-extending drug for her three-year-old son could be scrapped by the NHS as being too expensive.
Anna Armstrong’s son Archie was born with cystic fibrosis, and X-rays and blood tests showed the drug Kaftrio improved his lung function. Anna. Archie, 23, calls the drug “the closest thing to a cure” for cystic fibrosis, but Archie may never know its benefits as he grows up.
The National Institute for Health and Care Excellence (NICE), which provides health guidelines to the NHS, published draft guidelines in October last year recognizing Kaftrio’s effectiveness in treating cystic fibrosis, but further draft guidelines have not yet confirmed its cost. There are doubts as to whether it is highly effective.
This means the NHS could stop using the drug at any time, and Anna, from Formby, Merseyside, believes that would be a huge blow to her family. From August 2020, anyone over the age of six with cystic fibrosis, a genetic disease that causes mucus buildup in the lungs and digestive system, will be eligible to be prescribed the drug on the NHS. Kaftrio significantly improves lung function, improving breathing and overall quality of life.
talk to liverpool echo, Anna says, “There is no cure for cystic fibrosis, but this is the closest thing to a cure… Kaftrio improves lung function incredibly… Understand why the benefits matter more No. It’s like putting a price on a child’s life.
“It’s like having a carrot dangling in front of you on a stick and having it snatched away from you because it’s too expensive. It’s heartbreaking. My dream of having grandchildren… Yes, but now I’m wondering if my son will ever reach 30.”
Her anger is echoed by Pamela Millward-Browning, whose four-year-old son Max will also benefit from the same drug. Just last week, he underwent pulmonary function tests in preparation for starting the medication. Pamela said: “Kaftrio extends life and it’s a lifesaver to have a drug that can extend a child’s life by several years. It’s unbelievable…we may have to beg for a drug that will save our children. I can’t believe I don’t.” I can’t imagine I’ll outlive my son. ”
Helen Knight, NICE’s director of drug evaluation, said in a statement: “We are assessing the cost-effectiveness of these cystic fibrosis drugs to ensure taxpayers continue to get value for money. “We continue to work collaboratively with the NHS.” England and other stakeholders, including the Cystic Fibrosis Trust, aim to deliver the best outcomes for both cystic fibrosis patients and the wider NHS. ”
The statement continued: “Existing patients and new patients who started treatment while the NICE assessment was in progress will be able to continue receiving treatment after NICE issues its final recommendation, regardless of the outcome.”
The cost-effectiveness of Kaftrio is being questioned in the draft guidelines because of the drug’s cost per person. According to Cystic Fibrosis News Today, it costs more than $300,000 per patient per year. Approximately £240,000 in the UK. This means that while it will continue to be available to patients outside the NHS, it will be out of reach for most patients.
