Today the news about ‘groundbreaking’ peanut desensitisation featured widely on the radio and in the newspapers and it was heart warming to hear the story of Lena, who can now live without the fear of peanuts after her successful treatment and many other children who can now tolerate eating up to five peanuts every day!
Out of 99 children who were given the new form of immunotherapy, 84 per cent of one group and 91 per cent of a second group could safely eat five peanuts a day after six months – 25 times what they would normally be able to tolerate and more than they would be likely to encounter in everyday foods.
The study is described in detail in an article in the Lancet, Assessing the efficacy of oral immunotherapy for the desensitisation of peanut allergy in children (STOP II): a phase 2 randomised controlled trial
And you can read more about it and watch a short video on The Independent online website in an article entitled,
“A tough nut cracked? Scientists discover new treatment for peanut allergy sufferers”
More studies are needed before this treatment can be rolled out across the country but for a few children it really has changed their lives.
Normally I applaud any well researched and reported news about allergies and this was being aired on every news bulletin on BBC Radio 4 so if this coverage was also reported on other news channels it’s fantastic awareness about allergies, which gets reported so rarely. This morning however I was shouting at the radio, “It’s not new, we’ve known about this for YEARS!”
Is this really new news? Have they really just discovered this treatment? Surely we’ve heard about this before? And how likely really is that this treatment would ever be widely available on the NHS?
I wrote about this in a very short blog post over five years ago in “Avoid, reintroduce or desensitise”
Whilst this treatment really does bring new hope to those with allergies, how realistic is that hope? In a country with far too few allergy specialists, poor understanding of the condition amongst GPs, doctors and nurses and not enough funding for allergy, let alone all the other illnesses and conditions that affect the lives of others, there just aren’t enough funds to go around.
As an adult with allergies it seems like a wonder treatment which will never be available during our lifetime, and certainly not on the NHS which can hardly cope with its current burden.
In a world where adult allergy services are pretty apalling, you have to pay for your auto-injector on prescription and these amazing not-so-new treatments are still only available to a lucky few who live in the right place and are children, it still seems like the rest of us have a long wait and long way to go before we can all live without fear too.
But putting all my grumpy moaning to one side for a second, it is pretty amazing that this treatment has been so successful. What we all really want to know is when can we have it please? and if it’s not on the NHS what is this treatment likely to cost if we went privately?
It’s not just all about peanuts…
Many of us are not just allergic to peanuts. There are 14 identified allergens which must be labelled on food and many more which can also cause allergic reactions. There are also many of us with multiple allergies. If multiple desensitisation were possible I would be positively biting their hands off to get myself desensitised.
So what if I told you it already was? I can’t help thinking that we are just way behind here. Last year New York Times Magazine published a long article about multiple allergen desensitisation by Dr Kari Nadeu at Stanford University in America. Read
– See more at: The Allergy Buster to find out more about this radical new treatment. A word of warning, it’s a very long wordy article but fascinating reading if you or your child has more than one allergy. In America it is possible to get desensitised to many allergens – at the same time!
Knowing that someone out there could give me back my life is exciting and tantalising but how do I get this treatment for myself? Yes I know, it’s always all about me, me, me. But how do you get the treatment for you or your allergic child?
For now it is just a dream, for the lucky few children, who manage to get onto one of these trials. For the rest of us, all we can do is sit and hope and pray (if you’re the praying type) or save up squillions and find someone who is qualified to do the desensitisation treatment privately. And then where do you start? I have made enquiries about private treatment and not found any recommendations.
So where does this leave us? Celebrating of course for all the children and their families who have the freedom back to be children and not fear food and allergic reactions and wondering whether in five years time we will still be hailing the next new-not-so-new desensitisation success for another batch of lucky children who are able to get onto the trial.
Bitter? Jealous? Moi?
What about the rest of us? Children who don’t live near enough to be considered for the trial? Or those old enough to have struggled through childhood, without even an auto-injector, having no idea what these weird swelling allergic reactions were all about. We have come a long way but there is still a very long way to go before this is normal treatment for those who need it.
Spare a thought for those of us who still can’t eat out without military planning, can’t go on holiday without going camping or self catering? Have to religiously check EVERY label EVERY time we go shopping. Never get invited to dinner parties – though I admit that might have nothing to do with allergies – maybe I’m just a horrible house guest? :o)
Moan, moan, moan. Apologies for the negative blog today, I am usually very positive and happy in my own safe world, but I do miss not having to think about what I will eat for every meal at every mealtime. Just going somewhere unplanned, grabbing a snack, choosing anything from a menu…
One day this freedom will be mine, all mine too! Mwah, ha, ha, ha, ha.
NB: DON’T TRY THIS AT HOME – ALLERGEN DESENSITISATION SHOULD BE CARRIED OUT UNDER HOSPITAL SUPERVISION AND COULD RESULT IN ANAPHYLAXIS