Little boy denied wonder drug on NHS writes heartbreaking letter to King Charles
A little boy denied a wonder drug to treat his life-limiting Cystic Fibrosis has written a heartbreaking letter to the King.
Jesse Browne, four, tells Charles of his daily exercises and frequent hospital visits to tackle the incurable condition. The letter, written with the help of his grandma Clare, has a devastating sign-off. It asks: “Mummy said soon I will have the best medicine. Is that still true? Love Jesse X.”
The question follows a crippling blow to hopes for Jesse’s future health. His parents, Chloe and Ben, thought he would have the wonder drug Kaftrio in just over a year after the approved its use for children under six. But this month, National Institute for Health and Care Excellence recommended no new patients get it, on the grounds of cost – believed to be about £100,000 a year per patient.
Chloe, 30, of Brentwood, Essex, said: “Before this announcement, we were planning Jesse’s future. Now we’re planning his funeral.
“Every time you hear him cough you’re reminded that the clock is ticking. Without this drug, he won’t get married, he won’t have kids and he’ll be lucky to reach his 30s.
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“We were told by our consultant at Great Ormond Street that Jesse would probably start on Kaftrio in early 2025. That chance for his survival has been ripped out of our hands.”
Jesse's letter to the KingJesse, diagnosed with CF at the age of six weeks, is one of about 11,000 sufferers in the UK. The inherited disorder severely damages lungs, the digestive system and other organs. Each year, around 300 people in the UK are diagnosed with CF.
Kaftrio – which has been available on the NHS since 2020 – improves the health of 90% of users. It has been credited with adding up to 50 years to life expectancy and even reversing the effects of the disease. The drug helps correct problems with proteins on cells lining the gut and airways so they produce normal mucus.
The NICE recommendation has also had a huge impact on Charlotte Perkins, who was counting down the days until her 17-month-old daughter Delilah could start taking Kaftrio.
Lawyer Charlotte, 32, of Cardiff, said she feels “betrayed by the UK Government”. She added: “Kaftrio is the only chance Delilah has for any kind of a future. This news is like someone sticking a knife in my heart.”
NICE’s stance, which includes recommending the withdrawal of two other drugs, Symkevi and Orkambi, is open for consultation until November 24. The UK CF community has started a petition calling for the drugs to remain available and hopes to get enough signatures to raise the issue in Parliament. Helen Knight, director of medicines evaluation at NICE, said it was “evaluating the cost-effectiveness” of the “these medicines… to ensure taxpayers get value for money”.
Jesse with parents Chloe and BenThe 7,000 people on Kaftrio, 500 or so on Orkambi and 300-odd on Symkevi will continue to receive them – but no new patients will be eligible. Some 1,500 children under the age of six were hoping to get Kaftrio.
Without these wonder drugs, the usual treatment for CF sufferers is the regular use of nebulisers to thin mucus, making it easier to clear, and antibiotics to treat infections. Patients also need to perform deep breathing exercises, to help clear the airways. When lung function falls below 50% of what is expected, lung transplants are considered as a last option.
Chloe, Jesse’s full-time carer, is one of 120,000-plus signatories to the petition blasting the “scandalous” price of drugs and calling for them to be available to all CF sufferers. She was initially told Jesse, whose sister Bobbe, one, does not have the condition, was unlikely to see his 30s.
Two years ago, he started taking Orkambi which, Chloe said, “stopped him going downhill,” but his family were counting on him getting Kaftrio. Jesse mentions his numerous hospital visits in his letter to Charles, the patron of the CF Trust.
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He wrote: “Every day I do my best exercises before school. I do two nebulisers before school, then I do 100 blows and cough and cough until flem (sic) comes up.
“Sometimes I have to do this twice. At school a nice lady gives me more medicine and looks after me. When I get home I do my best jumps on my trampoline, and my best exercises again!
“I go to hospital lots and stay sometimes. They are very nice, but it does hurt.”
Chris, Charlotte with Delilah and big sister IzzyThe letter was also sent to Jesse’s MP Alex Burghart, who said: “I am very concerned to hear Jesse may not get the treatment he needs. I will be writing to the Health Secretary and to NICE to see if there is anything that can be done.” Kaftrio is made by Vertex Pharmaceuticals. Dr Andrew Hill, founder of the CF Buyers Club, does not think it will lower prices for the NHS.
A generic version of Kaftrio costs £15,000 a year but is only available by flying to Argentina – the only country where Vertex does not have the patent for the drug. Charlotte said Delilah already had significant scarring in her lungs and has had regular hospital treatment to suck out mucus. She said: “This will only get worse. My husband Chris and I had started to plan Delilah’s future. That’s been blown out of the water.”
Jesse’s consultant at GOSH, Dr Ranjan Suri, said: “Kaftrio, Orkambi and Symkevi are all CF treatments that have shown huge benefits for children like Jesse, helping to improve lung health, growth and quality of life.
“We strongly argue for, and fully support access for all children with CF, like Jesse, who will benefit from these highly effective treatments.”
David Ramsden, CEO of the Cystic Fibrosis Trust added: “We must never return to a situation where people with CF die young, knowing there’s a treatment that could change that.”
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