Twitter Q&A on the AAI Shortage with Lynne Regent

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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Q: Schools are refusing out of date pens.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. 

 

 

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:

IMG_2516

Nothing nut free. Continue reading “The 10 best allergy friendly Easter treats for kids (& more)”

Preventing allergies – a Twitter essay

Unknown-1RIGHT 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…

 

 

 

 

 

 

 

 

 

 

 

 

 

Allergy Labelling – the new laws is a comin’

coffee-and-cake-pairing_emag_article_largeA YEAR or so back, I ambled along to our local park cafe – newly refurbed, ponced-up and handed to a big name London catering firm – and fancied buying myself a coffee and a cake.

Unable to eat nuts around Sidney, I asked the girl on the counter if she could tell me please what was in the carrot cake; might it contain any nuts, or nut flours? She trotted off to ask the chef. Minutes later, the reply came back: “The chef can’t tell you what’s in the cake. His recipes are secret.”

Needless to say that particular ‘chef’ was a twat, but it’s heartening to know that as of tomorrow this kind of response will be flat-out illegal. It probably always was a bit dodgy but the guidelines are now absolutely crystal clear.

The new regulations

Under the new EU Regulation 1169/2011 – aka the new EU Food Information for Consumers Regulation (FIR) – any catering business will have to have full and correct information on the 14 major allergens contained within its products.

The 14 major allergens are:

  • Cereals containing gluten (eg wheat, spelt, barley, rye and oats)
  • Crustaceans such as prawns, crabs, lobster and crayfish
  • Eggs
  • Fish
  • Peanuts
  • Soybeans
  • Milk
  • Nuts (almonds, hazelnuts, walnuts, pecan nuts, brazil nuts, pistachio, cashew, macadamia or queensland nuts)
  • Celery
  • Mustard
  • Sesame
  • Sulphur dioxide or sulphites (often found in dried fruit and wine)
  • Lupin
  • Molluscs like clams, scallops, squid, mussels, oysters and snails

The good bits

Now, I have my reservations about the new laws for various reasons but the good things, as far as I can see, are as follows:

* If you walk into any catering establishment and ask what allergens any of its foods or dishes contain, they have to be able to tell you. They can tell you verbally, or have the information written down, but there must be clear signposting to advise you how you can get this information from staff.

* Nobody can say ‘er, I dunno’ or ‘I’m so up my own ass about my bog standard scone recipe that I can’t tell you what’s in it’. They have to tell you if the food contains any of the 14 major allergens. They have to be accurate. If they are not, you can report them to the food environmental health team of your local authority or the Food Standards Agency.

* It means that every catering establishment will have to have at least this rudimentary understanding of the notion of allergens and what the biggies are. That’s a first step in the right direction.

* Every restaurant will have to list ALL of the most common allergens. I’ve lost count of the number of times I’ve tried to find out if a dish contains sesame (I’m thinking chains such as ASK, or Zizzi) and hit a blank.

Pre-packed food labels will change

The new laws also cover pre-packed foods, such as those sold in supermarkets. These foods will have to have the major 14 allergens clearly highlighted within the ingredients list (for example in bold). Be warned – it means the end of the old allergen ‘box’, stating ‘Contains: milk, eggs, whatnot’. We will no longer have this shorthand and will have to scrutinise the ingredients list to check for allergens. Bear in mind, too, that this information will be phased in, as some foods with a long shelf life will still not have switched over to the new-style labelling.

This is the old way, courtesy of M&S:

getty_rm_photo_of_nut_allergy_warning_label

This is the new (courtesy of M&S and beauty, allergy and eczema blogger Sugarpuffish):

food label

There are some very complicated and disputed bits to this law, which I won’t go into here but which ‘Health Journo’ and Coeliac expert Alex Gazzola covers brilliantly in his blog. It isn’t quite as straightforward as it sounds, and manufacturers – even the biggies – are still getting this wrong.

The less good bits

BUT.

Despite claims that this will revolutionise the way we eat out and shop as allergic consumers, I still have massive reservations. These include:

* It is still not compulsory for caterers to learn about allergen control and cross contamination. Without this becoming an obligatory part of basic hygiene certification (i.e. without chefs and caterers having to pass a module in how to guard against contamination) I don’t have huge confidence that the vast majority of outlets will be able to safely cater. They will be:

(a) scared, where they actually don’t need to be – catering for allergies is not a dark art, but many are petrified of the consequences because they don’t understand what simple steps they can take

(b) confused about what constitutes cross contamination (I once had a manager in a John Lewis cafe tell me their food was unsafe because there were nuts stored in an adjacent room. Possibly they were flying nuts but you’d think she would have mentioned it…)

(c) in some cases not shit-giving enough to do anything but the absolute minimum – i.e. list the allergens but not try to cater for the allergic.

* There is nothing to legislate for the bane of our lives – ‘may contain’ labelling. There are Food Standards Agency guidelines that note there should be “significant and demonstrable risk” for a product to bear the warning ‘may contain nuts’ or ‘sesame’ or x allergen. But there is no law to govern this, therefore it is still perfectly possible (if inadvisable) for a food manufacturer or supplier to state ‘may contain nuts’ etc where no genuine risk of cross contamination exists.

The divs

There are some amazingly wonderful people out there who go the extra mile to cater for allergy (and I’ll be posting about those that we have found, very soon), but there are also some divs out there huffing and puffing about the ‘extra admin’. I’m thinking of Stuart Atkinson, ‘VP’ of the National Federation of Fish Friers, whose empathy at the end of this Guardian report is heart-warming. As he puts it:

“This is yet another administrative burden placed on small businesses… Once all the interest in the new regulations dies down, we are still stuck with them.”

Yes, it’s sort of the point that the regulations last longer than a fortnight.

“Constant vigilance will be required on receipt of deliveries in case a supplier has altered a pie recipe, for example.There is no requirement for fish friers to be directly informed of any changes to the ingredients of the products we buy, other than the list of ingredients on the packaging. We must therefore check every delivery for any changes to this list.”

Welcome to our world.

Stuff worth remembering

Some other points to bear in mind:

* Unless they are a registered food business, charity cake sales and voluntary bake events are exempt. The Food Standards Agency’s Technical Guidance Notes here state that: “Individuals who are not food businesses and occasionally provide food at charity events or voluntary cake sales, for example, do not need to follow these requirements.”

* The new regulations are NOT a substitute for asking all the questions you should usually ask. Don’t assume that you can walk into any restaurant or cafe and eat safely if your allergen isn’t listed as an ingredient. Talk to the manager and, ideally, the chef. Explain your allergy/allergies and that you need your food to be prepared away from those allergens, and can’t eat food that ‘may contain’ any of the allergens. Explain the severity of your allergy. This checklist from the Anaphylaxis Campaign is helpful.

The responsibility is ours

At the end of the day, much of the responsibility still – rightly – lies with us as allergic consumers. It is down to us to explain what we need, clearly and fully, and down to us to help to educate others out there about how they can best cater for us safely.

So I’ll be viewing the new regulations with a healthy suspicion: as a good first step but far from perfect. I’ll be quick to praise and thank those who get on top of the new regulations and go the extra mile to cater for us, and I’ll be bracing myself to do the other with those that don’t.

As fellow allergy blogger @allergymumscouk put it on Twitter: “What’s the saying? ‘Walk quietly but carry a big stick'”.

Batons at the ready…

Mf_cavewoman

 

Extra resources: The Food Standards Agency’s advice to consumers leaflet is here, and its guidance for small and medium food businesses on the requirements for loose foods is here

 

 

 

Hello…

im-backDear readers, I do confess, it’s been seven months since my last posting… What can I say, other than a demented 18-month-old, a four-going-on-14-year-old and the paid work I can squeeze into the moments when they are both asleep (ha!) mean I have reluctantly neglected my station?

There’s been so much I’ve wanted to blog about, too. This has been the Year of the Allergy Mama on a Mission. Our grassroots campaign to fight Alpro’s decision to merge nut and soya milk production and slap a ‘may contain nuts’ warning on all their soya products resulted in victory when they backtracked and agreed to keep the lot, bar chilled yoghurts, free from cross contamination. Continue reading “Hello…”

‘Do You Want My Family’s Business?’

Unknown-2SO, YESTERDAY WAS my debut into the (sorta) professional world of allergy. I was a guest speaker at a seminar for the catering industry on the upcoming changes to food labelling.

Despite my strong views on the subject, I wasn’t there to pontificate on the rights and wrongs of the new labelling legislation – I reckon that would only confuse the catering delegates even more, and I can tell you after yesterday that many of them are already confused enough about existing, never mind impending, allergy regulations.

I was invited as an ‘Allergy Mum’ by the organisers FATC to speak about the daily struggle to find safe places to eat, and food to buy, for my child.

So below is my presentation. It wasn’t slick, and my PowerPoint skills are rudimentary, but I hope it got some people thinking about the struggle we face to find allergy safe food. It is, as fellow speaker Michelle Berriedale-Johnson of Foods Matter succinctly put it, a “pain in the balls”. Continue reading “‘Do You Want My Family’s Business?’”

The Children’s Allergy Guru answers your questions

drdutoitplainbackgroundGOT A MILLION allergy questions buzzing around your head, and your little one’s next appointment is months away? Join us on Twitter tomorrow night for ‘Allergy Hour’, when London-based paediatric allergy guru George Du Toit will be the guest expert on hand to help.

Consultant paediatric allergist at Guy’s & St Thomas’, Du Toit is also co-investigator on the LEAP study into the prevention of peanut allergy in young children.

Follow @allergyhour and tweet your questions using the tag #allergyhour – it’s on from 20.30 to 21.30 GMT on Thursday 24 October. See you there!

In vino veritas

IMG_7358SO, I THINK Sidney is starting to understand his allergies. I’m just worried about how he plans to cope with them. Today, waiting for a hospital appointment for his baby sister, he played happily in a toy kitchen with other kids, clutching a bunch of toy grapes, a pot of ‘tea’ and a bottle of what he decided was ‘wine’. Offered a tin of food by another little boy he shook his head, replying firmly: “No, it has egg in it. That’s why I have wine.”

We may have a problem on our hands…