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Q: Schools are refusing out of date pens.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 good news (with a little tiny ‘but’)

images-4OUR VERY wonderful allergist, Dr Robert Boyle, has just released some new findings that should make reassuring reading for parents of children with diagnosed food allergy.

After collating data from 13 studies worldwide, he and his research team at Imperial College London have calculated that for children and young people with a food allergy  aged 0-19, the chance of dying from anaphylaxis in any one year is 3.25 in a million.

To put that in context, in Europe the risk of being murdered is 11 in a million. Continue reading “The good news (with a little tiny ‘but’)”

“Your safety is our priority.” Tell that to Tracey.

American Airlines Toronto to Miami Business Class Meal IT’S BEEN more than a year since I posted my rant about British Airways and its useless allergy policy. Since then, we’ve continued to fly with the airline because (a) we’re Executive Club members and the points are handy (b) the flight times are often the best for us and, more to the point, (c) my parents often (very kindly) treat us all to a family getaway and they fly with BA.

Mostly, despite my simmering annoyance about the company’s stubborn refusal to make any allowances for those with life-threatening allergies (unlike Monarch, EasyJet, Thomson…) we’ve been lucky enough to encounter helpful cabin crew.

Continue reading ““Your safety is our priority.” Tell that to Tracey.”

Attack of the ice cream (when accidents happen)

252562895_99c2c7b661TODAY A TODDLER put an ice cream covered finger in my baby girl’s mouth.

My first reaction was to yell ‘Noooo!’ and whip her out of her pushchair to douse her mouth out with a wet wipe.

Then I started to panic that she might react (so far she appears allergy free but Sidney’s doctor advised we delay the introduction of egg, nuts and sesame to his little sister until she is properly tested later this autumn). Then I began to shake, thinking: “Oh my God, what if someone had done that to Sidney?”

Continue reading “Attack of the ice cream (when accidents happen)”

“What’ll I do (ting-a-ling) when you (ting-a-ling) are far (ting-a-ling) away..?”

panicPANIC at Nanny and Nonno’s house tonight where Sid is having a sleepover: sudden clutching of tummy and inconsolable screaming at bedtime.

All became clear when he farted.

(In all seriousness, though, this is what allergy does to you: every minor rash or windy pain takes on menacing import; you wonder “has he eaten something he shouldn’t?”, “is this a reaction?” as you grapple with one hand for the Epi.)

On reflection, he probably ate too much of Mum’s homemade ice-cream…

Allergy-friendly holiday: Higher Lank Farm (Part I)

IMG_5711WELL, IT’S taken us more than two years and I never thought we’d do it but… we did, we have, we found a holiday place that caters for food allergic children!

Welcome to Higher Lank Farm, a glorious working farm in the midst of the Cornish countryside where the wonderful Lucy Finnemore has taken it upon herself as a challenge to cater for the oddball needs of food allergic kids. What a lady.

We only heard about this place after a friend, whose own toddler has a similar raft of allergies to Sidney, stumbled across it while searching online for child friendly UK breaks. She saw the website, which mentions in passing – and in typical no-razzmatazz Lucy style – that they “enjoy catering for people with special diets and food allergies” and there you have it.

Continue reading “Allergy-friendly holiday: Higher Lank Farm (Part I)”

Anapen recall

The last place you expect to hear that your tot’s Anapen adrenaline injector is being recalled is on BBC 6Music news. But you can blame the manufacturers for that – apparently they failed to prewarn the hospital allergists about the recall before deciding to issue a press release. Nice.

I’ve literally just got off the phone from our lovely doc who confirmed the Anapen is indeed the subject of a voluntary recall here in the UK, because of potential issues with the plastic needle sheath affecting the dosage of adrenalin. We’re to be called into the hospital over the next couple of weeks and retrained in EpiPens instead.

Click here for the Reuters report – all I can currently find online.

But some words of reassurance from our doc: the Anapen is only being recalled here in the UK and not in other European countries (for example France, where it is used more commonly). Those countries are waiting to know the results of further tests before they make any decision, so here in the UK we are just being a little more cautious.

There’s also no evidence that anyone has been affected by faulty Anapens, and testing of 26,000 of the devices here hasn’t previously thrown up any issues.

That said, for peace of mind I’m keen to switch to the EpiPen as soon as possible.

Check back here for more updates as and when they come…

* Update 1.30pm bit more info here