‘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. 

 

 

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.

The Children’s Allergy Guru answers your questions

GOT 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!

News Flash! Allergy Hour, the supermarkets and what to do?

If any of you lovely people are on Twitter tonight from 8.30pm it’s #allergyhour – the topics for tonight are allergy safe Hallowe’en treats and the biggie: strategies for ensuring supermarkets act on our needs.

It comes after I discovered to my horror that Sainsbury’s (at the very least the stores near me) have discontinued DS-gluten free bread in favour of their own brand stuff – so NO egg free, gluten free bread at all now on their shelves. In this pic not ONE bread product is egg free.