A north-east mum is calling on Scotland to follow NHS England in approving a treatment to help children with peanut allergies.
Carter Ross, five, was diagnosed with an allergy to peanuts aged one-and-a-half when he suffered a reaction which caused breathing difficulties and hives.
The youngster must now completely avoid peanuts and carry two EpiPens at all time to prevent a fatal reaction.
His mum, Kimberley Ross, is campaigning for an oral immunotherapy treatment which has already been rolled out south of the border.
The treatment, known as Palforiza, helps to reduce the severity of reactions to peanuts – including anaphylaxis – making family holidays abroad, birthday parties, and Christmas treats possible for some children for the first time.
Mrs Ross contacted her local MSP, Alexander Burnett, who raised it with Health Secretary Humza Yousaf on her behalf.
But the SNP minister, who is vying to become first minister of Scotland, said the Scottish Medicines Consortium, an independent body, rejected it on a financial basis.
‘Weight to carry’
The 31-year-old mum-of-two said the allergy is affecting her son’s quality of life and she has been researching alternative treatments “for years”.
There can be shortages of EpiPens, and she is sometimes forced to visit five different pharmacies to get hold of some of the life-saving medication.
Mrs Ross, who lives in Westhill, said: “As a child knowing that accidentally eating a bit of birthday cake can lead to a reaction is not much fun and it’s a lot of weight to carry.
“He has to have two Epi-Pens at all times, so does his nursery.
“We’re just told to completely avoid peanuts.
“He starts school in August. It’s a nut-free zone but some people don’t take allergies seriously.
“You have to stop the signs of anaphylaxis quickly so if he is out playing and he’s exposed to it then there’s only so many people that work in the school playground.
“They would have to recognise him going into that very quickly to then go and get the Epi-Pen to treat it quickly enough before it’s a fatal reaction.”
How does Palforzia work?
The oral treatment helps build up a tolerance to peanut, reducing the severity of symptoms, including anaphylaxis.
The treatment contains precise and gradually increasing amounts of peanut protein, enabling tolerance to be carefully built over time.
In December 2021, NHS England secured a deal to offer the pioneering treatment – the first of its kind in Europe.
Around 2,000 children a year, aged between four to 17, are expected to be treated each year by the therapy.
A peanut allergy trial, known as the Artemis study, found that around 60% of children and teenagers who reacted to about 10g of peanut protein at the start of the trial were able to take a dose of 1,000mg of it by the end.
This is a dose well above the amount allergy sufferers could accidentally come into contact with.
About one in 50 UK children suffer from peanut allergies and it is one of the most common causes of food-related deaths.
Mr Yousaf said the Scottish Medicines Consortium received a full submission from Aimmune Therapeutics on October 10 last year.
He added: “The submission received did not present a sufficiently robust economic analysis to gain acceptance by the Scottish Medicines Consortium.”
The list price is £3,684 per patient per year but the real cost is likely to be higher due to service set up costs such as reconfiguring food allergy clinics.
Mr Burnett, MSP for Aberdeenshire West, said he is “extremely disappointed that it seems a decision on price is outweighing the wellbeing of children suffering from this traumatic allergy”.
He added: “Parents have contacted me who are rightly concerned and frustrated after seeing the life-changing impact it has made to children in England yet in Scotland, it has been rejected due to cost.”
A spokesperson for the Scottish Medicines Consortium: “The committee was unable to accept Palforzia as the evidence provided by the company around the proposed long term use of the medicine was not strong enough to demonstrate that it offers value for money to the NHS.
“The company has indicated their intention to make a resubmission.”
‘Really disappointed’
Mrs Ross said she was “really disappointed” by the decision.
“There’s no other effective treatments and so little research has gone into allergies”, she added.
“One in 50 children in Scotland have a peanut allergy. Are they just going to keep offering avoidance-only Epi-Pens in case your child has a nearly fatal reaction?”
A Scottish Government spokesman said: “The Scottish Medicines Consortium, which assesses the clinical and cost-effectiveness of newly-licensed medicines, operates independently of ministers.
“In this case, the independent SMC has decided, based on the best available evidence provided to it, not to recommend Palforzia for use in Scotland – however, the submitting company has indicated its intention to make a resubmission to the SMC.
“There is a fast-track resubmission option, which reduces the normal assessment timeline.”
Conversation