‘Natasha’s Law’ – a group response

Earlier this year, the Food Standards Agency and Department for Environment, Food & Rural Affairs (Defra) announced a public consultation on proposed changes to the allergen labelling laws in the wake of the tragic death of Natasha Ednan-Laperouse. Printed below is a group response submitted to that consultation and signed by more than 200 members of the allergy community.

A little background: the consultation relates only to so-called ‘PPDS’ establishments – Pre-Packed for Direct Sale. This doesn’t have a completely clear-cut definition but basically means anywhere that makes and packages items ready for sale on the premises.

That includes sandwiches packed on-site and taken by the consumer from a chiller cabinet; salads displayed in deli boxes behind a counter and bought to take away by the consumer; takeaway items collected by the consumer if displayed in packaging on-site (e.g. chicken in a box; wrapped burgers). This may also include supermarket foods such as deli counter boxed salads, weighed and packaged cheeses; fresh (uncooked) pizzas from the deli counter; baked goods from a bakery counter.

It doesn’t include foods that are ordered by the customer, prepared freshly and then wrapped or packaged to be taken away; or foods that are prepared in advance of a rush, displayed on the counter but not wrapped until they are bought by the consumer (e.g. a pile of filled bagels in a cafe).

Anyway, here goes (warning: it’s long)… *deep breath*:

Allergen Labelling Review Team
Defra
Room 202, Zone 2
1-2 Peasholme Green
York
YO1 7PX                                                                                                28 March 2019

Group Response to Allergen Labelling Review

Dear Sir/Madam

I am writing as the informal representative of a group of 208 individuals who have come together under the banner of the Twitter allergy community @allergyhour to respond collectively to the DEFRA Allergen Labelling Review.

Twitter Q&A on the AAI Shortage with Lynne Regent

As many will know, there is rising concern over the national shortage of Adrenaline Auto-Injectors – the devices best known by their brand names, such as EpiPen, Emerade and Jext, which are the first and only port of call in the event of a serious anaphylactic reaction. Many families are finding it impossible to fulfil their prescriptions. On @allergyhour over on Twitter last week we put some questions to chief executive of the Anaphylaxis Campaign, Lynne Regent. Here are her responses below:

Q: How long before expiry should we request more auto-injectors from our GP?
Lynne: One month

Q: Aside from those EpiPens granted an increased four month usage beyond their expiry dates, in an emergency how long are expired EpiPens OK before we can no longer use them?
Lynne: The activity of Adrenaline Auto-Injectors does reduce after the expiry date, however they are safe to use beyond expiry unless the liquid is discoloured and contains particles – then it should be discarded. If in doubt please ask your pharmacy to check with you.

Q: Schools are refusing out of date pens. How can we work to allow schools to use/keep expired EpiPens until the supply issues are resolved?
Lynne: Schools may require a letter from a GP or a pharmacy to explain the circumstances. If you have any difficulties please contact our helpline on 01252 542 029.

Q: My chemist has no pens in stock. What should I do?
Lynne: You may need to revisit your GP to ask if they can prescribe an alternative medication, and call the customer service lines for the pharmaceutical companies. For full details see our statement.

Q: The situation seems to be getting worse before it gets better. What is the time frame for all unfulfilled prescriptions to be filled and full stock to be returned?
Lynne: We are unsure when stock levels will return to normal. We will continue to be in contact with the Department of Health, the Medicines and Healthcare products Regulatory Agency [MHRA] and the pharmaceutical industry for the most up-to-date information.

Q: We know Brexit may further complicate things. What are the contingency plans?
Lynne: We can’t answer this question on Twitter – it is a complex question that requires a wide-ranging debate.

Q: Will the approval of a new generic EpiPen in the US ease the situation over here? Will it be available in the UK?
Lynne: To our knowledge no requests have been made to get another adrenaline auto injector licensed in the UK.

Q: What should people who have no pens, and can’t get any from their pharmacist, do?
Lynne: Call the customer service lines for the pharmaceutical companies – full details on our statement.

Q: What is the Department of Health doing to work with you at the Anaphylaxis Campaign?
Lynne: We have been in direct contact regarding the availability of Adrenaline Auto-Injectors in the UK and they are working with the Medicines and Healthcare products Regulatory Agency and the pharmaceutical industry to manage the situation.

Q: Why are some batches of EpiPen OK to have their expiry dates extended where others are not?
Lynne: Mylan UK have obtained acceptance from the Medicines and Healthcare products Regulatory Agency to extend the use of specific lot numbers following rigorous testing.

Join @allergyhour every Thursday, 8.30-9.30pm, for the chance to share recipes, thoughts and info about living and coping with allergies. 

 

 

Dr Oetker Dr Schmoetker

SINCE cake-making unexpectedly entered my culinary lexicon with the horrifying realisation I couldn’t just go out and buy one, I’ve relied happily on Dr Oetker for icing. The supermarket own brand fondants all seem to be ‘may contain nuts’ so it was a blessed relief to have a ready-to-roll  I could easily track down in most stores.

Until now. If you’ve come across Dr Oetker Regal-Ice lately you will no doubt have noticed ‘may contain nuts’ has arrived there, too. All of a sudden I’ve realised we have another birthday on the horizon and I need to find out exactly what the risk is – and possibly hunt me down a safe alternative elsewhere.

Pizza pizza pizza pizza…

SO, THIS just popped up on my Twitter feed:

And all I can think now is….

The 10 best allergy friendly Easter treats for kids (& more)

EVERY YEAR I think ‘surely they’ve got to do better this time’. And every year I trawl around the supermarkets and realise, nope.

The perdy pastel shelves at M&S:

Nothing nut free.

Top 10 allergy friendly places to eat (2014)

SO, here it is – my run-down of our top allergy friendly meals out in 2014. A bit late, but timely in the aftermath of the ‘100 chefs rant against EU allergy laws’ thing. I’ve been tweeting my thoughts on this for a week, and am frankly bored of the moaning. Compelling caterers to declare which allergens are in their dishes doesn’t make anywhere more able, or likely, to cater for us, but it’s a first step on the road to greater understanding. It means that at least we have the right to ask, and to be told. I think that’s fair enough.

Anyway, enough about that. From never having the confidence to allow anyone bar family to cook for Sidney, in this past year we’ve managed to find a clutch of places happy, willing and able to cater for his multiple allergies. They are living proof that it is possible and, for that, I love them longtime.

So, in no particular order, here we go:

Eating out with allergies: the ‘rules’

THERE I WAS, poised to press ‘publish’ on my next post: our top 10 allergy friendly places to eat from 2014. Finding safe spots is never easy, but over the past year we’ve clocked up a few favourites.

Then I realised I should probably preface this post with The Rules. They are the steps we take, and the key things we consider, whenever we eat out. I’m sure others will have more to add, but this is simply how we go about things. Here goes:

* I always ring and email in advance to check the manager and chef are aware, and in some cases we pre-order our meal. It starts as a sussing-out call – do they sound as if they know what they’re doing? If not, forget it. If they do, I’ll go into greater detail, stress that we need the food to be prepped free from cross-contamination, and find out what dishes are likely to be safe for Sidney to eat. I’ll usually summarise the allergies and what we’ve mutually agreed in an email before our booking date. If nothing else, it’s only fair to give a place advance warning where possible and to explain fully what we’re after.

Preventing allergies – a Twitter essay

RIGHT NOW, as I type, many of the world’s top and absolutely bestest allergists and allergy experts are gathered in Houston for the American Academy of Allergy, Asthma and Immunology annual meeting. Later tonight, the UK’s Professor Gideon Lack will reveal the data from the long-awaited LEAP (Learning Early About Peanut Allergy) study into how best to prevent peanut allergy in young children.

In the run-up, I have been following the tweets from the great and the good gathered at the conference and the most amazingly informative string of posts has just come through from Canadian allergist Dr David Fischer. He calls it a Twitter essay on LEAP. Genius, and I felt it was worth sharing so I’ve pasted it below. (If you want to follow Dr Fischer on Twitter he’s @IgECPD and if you want to follow the conference tweets search the hashtag #AAAAI15.)

‘How we got to the leap study and what’s at stake’: A Twitter Essay by David Fischer, MD

1. There are 2 known ways of inducing tolerance (ie preventing allergy) in children: high zone tolerance and low zone tolerance

2. The concept of low zone tolerance is that if you’re not exposed to something you can’t become sensitized/allergic to it

3. Concept explains why North Americans become allergic to animals they’re exposed to (cats/dogs) but not, say, Tasmanian Devils 

4. Original theory behind strict avoidance of food allergy introduction until older ages in children based on low dose tolerance theory

5. High zone tolerance is when large early exposures induce tolerance. This is the plan of the LEAP study

6. The problem with the low zone tolerance idea in the West is that the strict avoidance of these foods is impossible 

7. Most patients reacting to peanut have with 1st exposure, but it’s not their 1st. Traces in packaged food & skin exposure in homes problem

8. A few Physician groups put out warnings based on Strict Avoidance/Delayed Introduction. That timed with increase in food allergy rate

9. These Guidelines were reversed years ago, allowing for earlier introduction of foods to children…with the hope of it being preventative

10. An Aussie study has already shown that introducing cooked egg between 4-6 months of age appears to prevent sensitization to egg 

11. Dr Lack (LEAP study author) has already noted that the rate of peanut allergy in Israel (where peanut is 1 of the 1st foods) is lower

12. Lack feels it’s a race against time to induce oral tolerance to peanut before intermittent trace exposures (esp skin) induce allergy

13. What we find out today is whether we can literally PREVENT peanut allergies through early peanut introduction. Stay tuned

Note: I asked him if he would mind clarifying ‘intermittent’ in this context and he replied: “From a food perspective I would mean small exposures such as feeding a child foods that have ‘traces of nuts’ instead of nuts.”

So there you have it. Now waiting on that LEAP* data.

* The LEAP trial took 640 children aged between four months and 11 months of age who were identified as high risk for peanut allergy (based on an existing egg allergy and/or severe eczema). They were randomly split into two groups – consumption or avoidance. Those in the consumption group were to consume a peanut-containing snack with three or more meals per week; those in the avoidance group were not to ingest peanut-containing foods, both until the age of five. Here is more on LEAP from the BSACI and the Anaphylaxis Campaign.

**UPDATE** And here we have it – feeding peanuts to young infants with heightened allergy risk dramatically reduces the odds that a peanut allergy will develop. Follow the links to the study findings in the New England Journal of Medicine, an article in the New England Journal of Medicine blog here, the Allergic Living report here and The Telegraph here. Worth noting that Professor Lack has stressed that infants showing early signs of peanut allergy (those with skin prick test reactions greater than 4mm) were excluded from the study and effects of peanut consumption in this group remain unknown. But this is properly groundbreaking stuff…

 

 

 

 

 

 

 

 

 

 

 

 

 

Brave new world & breadsticks

NEWS that a posho West End restaurant has been forced to close its doors wouldn’t usually fill me with glumness. But, oh, how I am bemoaning the loss – temporary or not – of Locanda Locatelli.

The celebrated Portman Square hangout has been left homeless following a gas explosion in the five-star Hyatt Regency Churchill hotel that houses it.

And now its chef-patron, Giorgio Locatelli, says he may abandon the site and try to re-open elsewhere.

So why my gloom? Well, because a visit to Locanda Locatelli last year marked the beginning of a brave new world for us as a family. It’s where we ate our first meal out, fully catered for Sidney.

The new allergy regulations – FAQs & the chance to ask an expert

EVERY THURSDAY evening, from 8.30 to 9.30pm, we run an Allergy Hour (#allergyhour) on Twitter – a forum for allergy people and parents to ask questions, rant, rave, swap tips, share recipes. Last night the folks at the Anaphylaxis Campaign kindly offered up one of their experts to answer specific questions on the new EU allergen labelling laws. Today they’ve put together a handy FAQ guide to deal with some of the issues that came up. See here for more. It covers everything from how the laws will be enforced to where businesses can get advice.