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
Photo by Marina Leonova from Pexels
Alison Berthelsen says
Hi Ruth,
I am SO with you! I got up this morning to receive a raft of emails from people,all kindly passing on ‘ don’t worry,there is hope!’. I left it most of the day before replying,as I know they were only meaning well. I watched the BBC online article and then replied with the fact that its NOT new.And wonderful and fantastic as it is,its totally out of reach. When will there ever be funding for this? Probably never when you hear about the things they are taking away on the NHS. I feel sad that when people are only being kind,I come across so flat. Still moan moan moan…….
RuthS says
I was fuming, which is totally unreasonable I know, the coverage was great, but it’s not bringing any hope, not to me. The chances of this treatment ever being widely available even privately are low. On the NHS? Very unlikely. It almost feels like this so called ‘cure’ is being rubbed in my face. Look how lucky this child is, she can now eat peanuts and not live in fear. But sorry, you can just get on with your life as you have done with multiple allergies because you’re a grown up and you can look after yourself.
Micki says
Oh, this made me laugh, Ruth. It wasn’t just me shouting at the radio then! Have just blogged it. http://mickirose.wordpress.com/2014/01/31/new-peanut-desensitisation-treatment-in-media/
RuthS says
No not just you Micki – but maybe just us three… me, you and Alison
Lynne Regent says
Hello Ruth,
This study has been ongoing for quite a few years and has been covered by the media on several occasions. The story hit the headlines yesterday due to the research study being finally published in the Lancet Journal and due also to the news that CUH (Cambridge University Hospitals) is planning to open a peanut allergy clinic that would make a range of services, including peanut immunotherapy on a named patient basis, available to patients.
The study was undertaken on children, but hopefully now the procedure has proved successful in children and once licencing has been obtained, it should not be too long before it becomes available for children and adults. For further information about the development of peanut immunotherapy and when it will become available in clinics, you can register your interest on http://www.cambridgeallergytherapy.com
Regards
Lynne, CEO Anaphylaxis Campaign
RuthS says
Now that does sound more hopeful Lynne. Thanks for sharing. The Lancet journal does indeed make interesting reading and if indeed this treatment may become available to more people with allergies it will have been worth the wait. The news items failed to give us the really hopeful news you have shared above. Bring it on. I have registered so fingers crossed.