Parents call on HSE to make breakthrough peanut allergy treatment available

RTÉ News​

4 days ago

Parents of children with severe peanut allergies are calling on the HSE to make a breakthrough treatment available in Ireland.
Palforzia is a medicine for treating peanut allergy in children from one to 17 years of age.
It has been authorised for use in the EU by the European Medicines Agency, but currently there is no planned timeline to roll it out in Ireland.
It works by gradually exposing children to higher doses of peanut to help lower the risk of severe reactions, including anaphylaxis. This method is called oral immunotherapy.
There are more than 20,000 children in Ireland living with a severe peanut allergy. The current approach is to avoid peanuts in the diet and carry emergency medication in case they are eaten.
Some parents are now taking their children, at their own expense, to the UK, US or other European countries to access the Palforzia treatment.
Catherine Dolan, from Greystones in Co Wicklow, is among a group of parents who want the HSE to make Palforzia available here. Her six-year-old son has a severe peanut allergy that puts him at risk of anaphylaxis.
Ms Dolan said it creates a great deal of anxiety as the family navigates daily interactions. She has considered accessing the treatment abroad but said the logistics are difficult.
"We've always had healthcare in our own country, and it does pose a risk when you go outside of the Irish system. I would consider it, we are talking about it, but I'd be really, really cautious about it," she said.
Ms Dolan said she feels it is unacceptable that the treatment is available under the NHS in the UK, and other European countries, but not here.
"We need to know when, and why. It has to happen. I'm balanced in my view - I know the healthcare system is really stretched, but I know the consultants are there, the care is there, and the expertise is there. We just need a national plan now to roll it out," she said.
The HSE said it makes decisions on which medicines are reimbursed by the taxpayer on "objective, scientific and economic grounds".
In November 2023, the National Centre for Pharmacoeconomics made a recommendation to the HSE that Palforzia "not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments".
Professor of Paediatrics and Child Health in the Royal College of Surgeons in Ireland and Children's Health Ireland Dr Jonathan Hourihane said cost-effectiveness of medicines is usually calculated based on whether the amount of money needed to treat a condition can be recouped through demonstrated savings based on hospital bed use or emergency departments attendances.
Dr Hourihane said this metric does not apply to peanut allergy.
"This condition is a community-based disease characterised by anxiety and isolation, not by having to go to a hospital every two weeks. So, it's been unreasonably rejected. I think it's disappointing for us as a country, as a country that recruited children to get the licence for the product. And I think it's insulting to the families who have this condition," he said.
Dr Hourihane said he attends international conferences and is told by allergy doctors that they are treating Irish children in the US, France, Italy and the UK, among others.
He believes it is "a sign of desperation" that parents are willing to travel at their own expense for "care that they should be able to get locally".
He added that Irish doctors are not supporting people to access treatment abroad because they are not involved in those programmes and cannot stand over them.
Dr Hourihane said: "We are aware of children who've had to attend the emergency hospitals in Dublin having had allergic reactions during their treatment courses, and we don't know what they've reacted to because we're not involved.
"So, I think it's putting doctors in allergy clinics in Ireland in a difficult position. They're having to treat children who are having complications of treatment being supervised remotely."
Dr Hourihane believes the true impact of peanut allergies has been disregarded.
He said: "It's not a trivial illness if you think your child might die tomorrow while you're at work. I think a fundamental problem with the way it's been evaluated is the impact hasn't been fully accepted in the way that families want it to be accepted.
"As a clinician I find it frustrating and disappointing that the state-of-the-art treatments that we helped develop internationally [are not available here], and Ireland is a major international player in this area. We're now the laughing stock of the international allergy community."
The HSE said the company that has applied to make Palforzia available through the HSE in Ireland has now paused the application until the end of this year.
The HSE added that it "is committed to providing access to as many medicines as possible, in as timely a fashion as possible, from the resources available (provided) to it".
"The HSE robustly assesses applications for pricing and reimbursement to make sure that it can stretch available resources as far as possible and to deliver the best value in relation to each medicine and ultimately more medicines to Irish citizens and patients," it said.