The media has been buzzing for the last two days with reports of the Addenbrooke’s trial which showed that, by feeding peanut-allergic children tiny but increasing doses of peanut protein, you can desensitise them to the point that they no longer react to peanuts. This is, of course, extremely good news.
It is really hard for those of us who do not suffer from allergies to have any concept how stressful and difficult life is for those who do – and whose children do. Every mouthful of food that you take has to be checked and monitored, every action of the day has to be assessed against its allergy risk, every purchase that you make (and that does not just apply to food) has to be scrutinised for allergen contamination. And even when you do all this you live with the constant fear that an allergen will have escaped your vigilance and that you, or you child, will have a reaction which could – and yes, it really could – prove fatal, although, thank God, the numbers of fatalities is genuinely very, very small.
So any treatment that could reduce this risk and allow peanut-allergic people, both adult and children, to live more normal and less stressful lives is hugely to be welcomed. However….. Far from, being a ‘revolutionary new therapy’, desensitisation (also known as immunotherapy) has been well known for over 40 years and is readily available in the UK for hay fever and for insect stings. Elsewhere, especially in the US, it is has also been successfully used for food allergy – there are innumerable reports on immunotherapy listed on the Foods Matter site here and here .
So why is it so ‘revolutionary’ all of a sudden? Because, sadly, when it was first used for food allergy in the the 1970s and ’80s, the treatment was not carried out under sufficiently rigorously controlled conditions and a number of patients had fatal reactions to the doses of allergen they were fed. As a result this very promising treatment fell totally from favour as being too dangerous, instead of just being poorly implemented, and it has taken it 30 years to reappear. However, it is, realistically, the only treatment even on the horizon which offers allergic people any prospects beyond eternal vigilance and abstention.
Of course there are ‘buts’. As the many allergists and allergy groups who have been interviewed have pointed out, they do not know whether the acquired immunity will last and they do not know whether there may be long term side effects other than an allergic reaction from ingesting peanut. Moreover, this was a relatively small group of children and they need to know whether it will work on a larger group and while the desensitisation may work for peanuts, many people have multiple allergies and this will not affect their other allergies.
More serious practical issues are the cost and feasibility of rolling out such a specialist treatment through an allergen service which is grossly undermanned at every level and where it is often hard for a suspected peanut/nut allergy sufferer to get even a referral to an allergy consultant in less than six months.
And, understandably, all concerned are extremely worried that the media coverage that the success of trial has received might entice allergy sufferers into trying the therapy themselves at home – an experiment fraught with danger which could all too easily result in a fatality.
So while everyone involved in allergy is delighted at the success of the Addenbrooke’s trials – and delighted that the lives of the children who took party in them have been so dramatically improved – they are only too aware that they do not solve every allergy sufferer’s problems. Even if the Cambridge University Hospital’s trust does open, as they plan, a peanut allergy clinic where the therapy could be licensed on a patient-by-patient basis, only a tiny fraction of allergy sufferers are actually likely to be able to access it and the chances are that they will be children. Little comfort to multiple allergics such as Ruth of What Allergy? whose chances of getting such treatment in this country, even if she were prepared to pay out of her own pocket, is non existent.
So many cheers for Drs Clarke and Ewan who have pushed through this research and got these results – but now a further, much greater push is needed to capitalise on their findings, set up a larger trial, start the regulatory process and allocate more funds. We need this promising treatment to be available to all allergy sufferers – and we need it now!
For full details of the trial results see the article in The Lancet , for Ruth’s blog on the trial results see What Allergy?
Although it is a great advancement in the treatment of allergies and food sensitivities, but a word of caution, don’t build your hopes up. My teenaged daughter who suffered since she was a baby from multiple food allergies and anaphylaxis went through a desensitisation procedure over a year ago in one of the most major hospitals in London, and it failed. First they did blood and skin tests to update her record and allergy development and out of her many allergies, the results for almonds came negative so they decided to do the almond challenge (desensitisation)
We were of course excited that there is at least one nut she will be able to have and went to our appointment armed with almonds in the shell (to make sure there is no cross contamination)also washed and dried to double check. The procedure started fine for the first hour then all of a sudden, and when we thought everything was going OK, she started reacting badly to it. We’re back to square one, she’s still allergic to almonds, even it did not come as high risk in the test and the desensitisation did not work.
My daughter was so upset and she decided to refuse any similar offers of help because she does not want to build up false hopes again and it is easier to avoid something you have not learned the taste of
I am so sorry, May – how very disappointing for you all. And you are right – sadly, no treatment is ever guaranteed and there will always be some people for whom it does not work – just too horrible if you are one of them. However, at least desensitisation offers some hope of a way forward for many allergics – which has to be better than the current ‘treatment’ which can offer nothing more than lifelong avoidance.
However, as your daughter’s body matures maybe things could change – who knows… I do hope so.