Anaphylaxis Campaign

Supporting people at risk of severe allergies

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Highlights from the EAACI Digital Congress 2020

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The European Academy of Allergy and Clinical Immunology (EAACI) Annual Congress 2020, took place digitally this year from 6- 8 June 2020.

EAACI is an association of more than 11,000 clinicians, researchers, and allied health professionals from 24 countries and includes over 50 National Allergy Societies who work to improve the health and lives of people affected by allergic diseases. Originally planned to take place at the ExCel Centre in London, the congress was switched to a digital platform due to the COVID-19 Lockdown. The congress provided an opportunity for allergy experts and professionals to discuss future avenues, new discoveries and developments in the field under this year’s theme which was ‘Bridging Innovations into Allergy and Asthma Prevention’

The diverse and forward-looking programme included presentations and interactive sessions on:-

  • The gut microbiome and allergy
  • Latest developments in prebiotics, probiotics and synbiotics
  • Weaning and allergies – changes in the guidelines and current thinking
  • Diet diversity and the relationship with allergy
  • Cow’s milk protein allergy (CMPA) – current guidelines pros and cons
  • Benefits of human milk oligosaccharides in the treatment of CMPA
  • Novel insights into immunotherapy approaches
  • The quality of life of children and adults with food allergy
  • Impact of climate change on asthma
  • Social Media and allergies – pros and cons

Most of the Congress scientific content is available to registered delegates on the EAACI Digital Congress 2020 platform for a period of six months after the Congress. For anyone not registered, the content will be available for purchase on the EAACI Media Library in the form of thematic packages within the next few weeks.

For details please visit the EAACI website.

Supply of US-labelled EpiPen® 0.3mg Adrenaline Auto-Injectors

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EpiPen (Adrenaline) Auto-Injector 0.3 Mg: supply of a batch (no. 9FM766) with US-labelled auto-injectors packaged in UK cartons with a UK leaflet

  • Mylan has released a batch of US-labelled EpiPen auto-injectors (Batch no. 9FM766) to enable continuous access of auto-injectors in the UK following approval from the MHRA.
  • The EpiPen auto-injectors in this batch are affixed with a US label, and are packaged (as single packs) into UK cartons along with UK patient information leaflets.
  • The drug name is epinephrine in the US but is known as adrenaline in the UK.

Patients and carers familiar with the term adrenaline may be confused.

Further information on the safety concern and recommendations

The auto-injector device in this batch is exactly the same as the normal UK EpiPen in every way except for the information on the label on the device.

Other differences between the US-labelled and UK-labelled auto-injectors are:

  • The UK label has the instruction to ‘Dial 999, ask for ambulance and state ‘anaphylaxis!’, which is replaced with ‘Get emergency medical help!’ on the US label.
  • The warning ‘Keep of the reach and sight of children’ is omitted on the US auto-injector label. However, the UK carton and patient information leaflet include this statement.

Please see below a comparison of the US and UK labels on the autoinjectors:

 

EpiPen

Reminder: Patients and carers should ‘Dial 999, ask for an ambulance and state anaphylaxis!’ after every use of the EpiPen auto-injector.

The label on the EpiPen (epinephrine) auto-injector is meant for the US. Therefore, patients and carers should read the outer carton and enclosed patient information leaflet which is designed for UK patients.

This Important Information leaflet from Mylan explains the difference for patients and healthcare professionals.

The Anaphylaxis Campaign would like to reinforce the following advice;

    • Always carry two adrenaline auto-injectors with you at all times.
    • Ensure you have registered the expiry date of your devices on the relevant manufacturer’s websites to give you ample warning when a new prescription is required.
    • Ensure you gain a replacement device prior to disposing of any out of date devices
    • Always make sure you have a trainer device which can be ordered from the manufacturer’s websites for free:
    • Make sure that your family and friends are familiar with the device you have and how to use it.
    • In an emergency call 999, ask for an ambulance and say anaphylaxis (pronounced as ‘anna-fill-axis’).
    • All adrenaline auto-injectors (AAIs) come with the following instructions on storage of their device: keeps AAIs in their original containers to prevent light exposure, do not store above 25oC and do not freeze. For EpiPen devices there is an additional instruction to not refrigerate the device.
    • Your adrenaline auto-injector devices should be checked regularly to ensure the liquid is clear and colourless. If it appears discoloured or contains particles, the device should be replaced.

Hednesford takeaway owner prosecuted for serving unsafe food to allergic customer

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Limited company Rosehill Nites Limited?, operators of Rosehill Balti of Pye Green, Cannock, Staffordshire, was fined £3000 and ordered to pay £250, after it sold food which contained peanuts to a customer with a nut allergy.

The customer, Tony Locke, suffered a severe allergic reaction to the dish, which had been described as being free from nuts and peanuts.

The takeaway owner, Mr Mohammed Badrul Islam, pleaded guilty to offences relating to the provision of unsafe food on two separate occasions at a court hearing last December. Mr Islam was sentenced to a 20 week suspended sentence, ordered to complete 150 hours of unpaid work and pay the victim £1000 compensation as well as a £115 victim surcharge.

The hearing, which was originally due to take place on 16 April but was rescheduled ?due to the COVID-19 pandemic, was heard at Stafford Crown Court on Thursday 18 June.

According to the Staffordshire County Council website, on 8 February, 2019, Mr Locke from Hednesford, ordered a Modhu Minty Lamb Aloo from the business and had explained that he had a nut allergy. After returning home and eating two forkfuls of the dish, Mr Locke suffered a severe allergic reaction and ended up in hospital.

The case was reported to Staffordshire County Council’s Trading Standards service who made a test purchase of the same meal on 13 March 2019. Following testing by a specialist team, the curry powder used in the dish was found to contain nut powder.

Mr Islam told the court that he did not know that the curry powder contained nuts and expressed regret and remorse that Mr Locke suffered an allergic reaction that necessitated the need for him to attend hospital.

This case highlights the importance of food businesses checking the ingredients in the products used in the food and drink they provide. Different ingredients, dishes and products may contain ?unexpected allergens, and ingredients and recipes can change. Food businesses must ALWAYS thoroughly check ingredient labels ?of all the products that they use in order to give customers the correct information.

Lynne Regent, CEO of the Anaphylaxis Campaign, says:

“We are saddened to hear of Mr Locke’s serious reaction and are pleased to see that action has been taken by Staffordshire County Council and that the food business involved has accepted responsibility. The importance of understanding allergy safety and how to provide allergen information correctly is imperative to the running of all food businesses. As a charity that supports people at risk of severe allergic reactions and anaphylaxis, we can provide guidance to food businesses on how they can ensure the safety of customers with allergies.”

In the UK, food businesses must provide information about any of the 14 allergens when used as ingredients in the food or drink they provide. There is more information about what these allergens are and how food businesses can provide this information here.

‘Natasha’s Law ‘– Food Standards Agency publishes updated technical guidance

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Following a key stakeholder consultation that was held between January and March this year, the Food Standards Agency has today published an update to the Food Allergen and Labelling Information:Technical Guidance along with a summary of responses and updates made as a result of the consultation.

The guidance aims to help food businesses follow allergen labelling requirements and also to help authorised food officers enforce the allergen provisions of the EU Regulation on the provision of food information to consumers (Regulation (EU) No. 1169/2011) and Food Information Regulations 2014 (SI 2014/1855) as amended and corresponding Regulations in Wales, and Northern Ireland.

The guidance has been updated to reflect the new allergen labelling requirements which will apply from the 1st October 2021. These cover foods that are prepared and packed on the same premises from which they are sold – such as a packaged sandwich or salad made by staff earlier in the day and placed on a shelf for purchase. The new law requires these products to carry a full list of ingredients with the 14 allergens, as listed in European Legislation, emphasised on the packaging.

Currently, food prepared on the premises in which it is sold is not required to display allergen information on the label, meaning food allergic individuals sometimes lack confidence buying food to eat whilst they are out.

The Anaphylaxis Campaign contributed to the consultation and CEO Lynne Regent says

‘We welcome the publication today of these updated technical guidelines. We have strongly supported full ingredient labelling on food pre-packed for direct sale as a necessary step, and we are now one step closer to seeing food businesses fully prepared to implement this successfully in October 2021, making eating out a safer experience for all those living with allergies.’

The FSA’s response to the consultation can be found here

The updated technical guidance can be accessed here

The emergency treatment of anaphylaxis in schools during the COVID-19 pandemic

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Children are beginning to return to school under new social distancing rules and regulations. We have been contacted by concerned parents and school staff about how the COVID-19 epidemic and the restrictions in place because of it, affect the giving of emergency treatment to children experiencing a severe allergic reaction/anaphylaxis.

Anaphylaxis is a potentially life-threatening allergic reaction and always requires an immediate emergency response. The response will inevitably require close contact which could increase the risk of cross infection for any infectious disease, including COVID-19. However, this risk must be weighed against the likelihood that the child could die if assistance is not given immediately.

If a child is having a severe allergic reaction, it is vital that they receive an adrenaline injection. This must be given as soon as a severe reaction is suspected to be occurring and an ambulance must be called. The adrenaline should be administered first and an ambulance should be called immediately afterwards.

If a child requires CPR the Resuscitation Council (UK) has the following advice:-

We accept that doing rescue breaths will increase the risk of transmitting the COVID-19 virus, either to the rescuer or the child/infant. However, this risk is small compared to the risk of taking no action as this will result in certain cardiac arrest and the death of the child.

Anaphylaxis Campaign, along with the BSACI and Allergy UK, has sent a joint letter to the Department for Education requesting that it issue a clear statement about teacher’s obligations should a child suffer anaphylaxis at school. The joint letter is available to read here.

Please see government guidance for first responders here

For further advice and precautions for giving life saving emergency treatment during the COVID-19 pandemic please see the full resuscitation council guidelines here

The Health and Safety Executive has also published guidance for First Aiders in non-healthcare settings which can be accessed here

For guidance on ‘What to do in an Emergency (Anaphylaxis) go here

Free Anaphylaxis Training for schools can be found here

Study reveals significant need, burden and psychosocial impact of peanut allergy

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The largest European quantitative study on peanut allergy has highlighted varying levels of effective disease management between countries, as well as the associated feelings of uncertainty, stress and isolation experienced by those with peanut allergy and their caregivers.

APPEAL-1 (Allergy to Peanuts imPacting Emotions And Life-1), a multi-dimensional pan-European study assessing the psychosocial effect and impact of living with peanut allergy, took place across eight European countries. Country specific data showed that more than half (52%) of UK respondents report being bullied about their peanut allergy.

Aimmune Therapeutics, a biopharmaceutical company developing treatments for life-threatening food allergies, announced the findings last week, which were published in Allergy, one of the official journals of European Academy of Allergy and Clinical Immunology (EAACI).

The study, published in two parts (Part A and Part B), highlights the substantial impact peanut allergy has on every aspect of allergic individuals’ and their caregivers’ lives, including the uncertainty they feel around how to manage frightening and debilitating reactions and concerns about the feasibility of ongoing peanut avoidance.

Peanut allergy is one of the most common food allergies, which affect over 17 million people in Europe. The prevalence of peanut allergy in Europe has doubled between 2005 and 2015, and around two-thirds of schools in Europe currently have at least one child at risk of anaphylaxis. Reactions to peanut are potentially life-threatening, accounting for the majority of deaths related to food allergy.

APPEAL-1 is the first and largest quantitative study to validate and bring attention to the significant burden and psychosocial impact with which allergic individuals and their caregivers are challenged in their daily lives. The findings illustrate the impact of living with the condition, and how attempting to avoid peanuts every day can be a major source of stress, fear and anxiety, clouded by the persistent worry of accidental exposure for both the allergic individual and their caregiver. The data also demonstrate that across Europe there is insufficient education for coping and living with the disease and the management of reactions. Ambiguity over how to use rescue medicine (Adrenaline Auto-Injector; AAI) and the potential trauma of necessitating its use is an additional burden that people with peanut allergy currently face.

“Our findings show that those living with peanut allergy face many uncertainties and restrictions on their daily activities, in addition to constant feelings of frustration, anxiety, stress, isolation, and uncertainty in their everyday lives,” said Audrey DunnGalvin, Ph.D., a lead investigator on the APPEAL-1 study and a lecturer in the School of Applied Psychology at University College Cork in, Ireland.

“The findings also reveal the disparity across European countries and an urgent need for greater support, improved management, and education for both peanut-allergic people and the general public to help improve living with and managing peanut allergy.”

The Part A data gave an insight into the experience of those with peanut allergy related to their reactions and disease management. Of the 1,300 respondents, only 24% had received training on what to in an emergency. Of those that had been prescribed an AAI, only a third had received training on how to use it.

The Part B data showed the impact on individuals’ freedom of choice in daily activities; feelings and emotions; impacts of bullying, and their ability to cope with peanut allergy. Of the 1,846 survey respondents:

  • 90% report feeling frustrated and stressed, with over a third having frequent feelings of anxiety
  • 65% report feelings of isolation and 43% report experiencing bullying
  • 89% report feeling restricted on where to eat out and 84% feel limited on buying food.

“The study provides essential insight and data on peanut allergy comorbidities, severity of reactions, management, and suggests a widespread need in Europe for improved quality of peanut allergy health management and education”, said Daniel Adelman, Chief Medical Officer of Aimmune.

“These findings represent the largest quantitative data set to date and, importantly, deepen our knowledge and understanding of the impact of peanut allergy on everyday lives, further providing some signposts for clinicians and policymakers on significant needs among these patients that need to be addressed.”

Commenting on the findings, Lynne Regent, CEO of the Anaphylaxis Campaign, said, “These findings highlight the need for improvements in allergy care and psychosocial support for those affected by peanut allergy. As the UK’s only charity operating solely for those affected by severe allergies and anaphylaxis, we have long understood the importance of raising awareness and improving training, education and support in allergy management and services. This study provides valuable insights which will help to inform our future work.”

To see the full release, please click here.

To download the article, please click here.

Survey invitation – Living with Peanut Allergy: parent and guardian experiences 2020

Many thanks to everyone who has completed the survey on living with peanut allergy that was posted in April-May 2019. Your input is greatly appreciated!

Through the survey we have received many responses of parents whose child is highly sensitive to peanut. To consider a wider range of experiences, we are now re-opening the survey for those who are on the milder end of the sensitivity spectrum.

If you are 18 years or older and the parent or guardian of a child who can withstand some degree of exposure to peanuts before experiencing an allergic reaction, for example approximately 1/2 peanut or more, and you have not completed the survey before, we would welcome you to participate in the survey by clicking this link: https://www.surveymonkey.com/r/PAW2AC

Please note: We would like to ask you NOT to complete this survey if your child has been diagnosed or is showing symptoms of COVID-19. This is because infectious diseases potentially impact sensitivity to allergic reactions.

MHRA issues important alert for Emerade 500mcg auto injectors

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This is a recall for Emerade 500 microgram pens only. This is a different alert to that issued on 04 March 2020 for Emerade 150 microgram auto-injectors and on 07 April 2020 for Emerade 300 microgram auto-injectors.

Results from manufacturer testing of Emerade auto-injectors recalled from patients in Europe indicate that approximately 13% of pens need higher than normal force to activate, implying a higher risk of activation failure than was previously understood. This applies to all strengths of Emerade. Previous estimations of activation failure were obtained from tests on pens that had been stored in the manufacturing facility. Whereas, the recent results were obtained on pens carried by patients, suggesting an environmental contribution to the risk. Investigations are ongoing to understand this.

For Emerade 500 micrograms auto-injectors, the MHRA, in conjunction with the Department of Health & Social Care (DHSC) has established that there are sufficient supplies of alternative auto-injectors to allow a recall to patient level.

The recall of Emerade 500 microgram auto-injectors from patients follows a previous recall of Emerade 150 microgram auto-injectors and Emerade 300 microgram auto-injectors from patients. More information on the previous alert can be found on the following links:

Class 2 Medicines Recall: Emerade 150 micrograms solution for injection in pre-filled syringe, PL 33616/0013 (EL(20)A/14)

Class 2 Medicines Recall: Emerade 300 micrograms solution for injection in pre-filled syringe, PL 33616/0014 (EL(20)A/20)

Alternative brands of adrenaline auto-injector (EpiPen and Jext) are available in a maximum strength of 300 micrograms. There is evidence to suggest that a single EpiPen (300 microgram) or Jext (300 microgram) pen will be a suitable replacement for a single Emerade 500 microgram pen. This is based on recently available results from a study which compared blood levels of adrenaline following injection of Emerade 500 microgram pens with those following EpiPen 300 microgram or Jext 300 microgram pens. You must continue to always carry two adrenaline pens with you at all times. Prescribers are to follow dosage guidance in individual Summary of Product Characteristics (SmPC).

Advice for patients with an Emerade 500 microgram auto injector can be downloaded here:-

Emerade 500mcg Patient Letter

The MHRA has issued actions for healthcare professionals that can be downloaded here:-

Class 2 Medicines Recall: Emerade 500 micrograms solution for injection in pre-filled syringe, PL 33616/0015 (EL(20)A/23

Guidance on the use of adrenaline auto-injectors in schools:

For more information on the use of adrenaline auto-injectors in schools, see the link below: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/645476/Adrenaline_auto_injectors_in_schools.pdf

What to do if you suspect anaphylaxis

  • use your adrenaline pen immediately or ask someone else to do this if you prefer (any person is legally allowed to administer adrenaline to another person to save a life);
  • call an ambulance (999) immediately after giving the injection or ask someone to do this. Say this is an emergency case of anaphylaxis (pronounced “anna-fill-axis”);
  • use your second adrenaline pen 5 to 15 minutes after the first pen if you are not improving or if you start to deteriorate after an initial improvement;

If you have any questions, you can contact our helpline at [email protected] or call 01252 542029 for support from 9am – 5pm, Monday – Friday

 

The Anaphylaxis Campaign would like to reinforce the following advice;

    • Always carry two adrenaline auto-injectors with you at all times.
    • Ensure you have registered the expiry date of your devices on the relevant manufacturers websites to give you ample warning when a new prescription is required.
    • Ensure you gain a replacement device prior to disposing of any out of date devices
    • Always make sure you have a trainer device which can be ordered from the manufacturer’s websites for free:
    • Make sure that your family and friends are familiar with the device you have and how to use it.
    • In an emergency call 999, ask for an ambulance and say anaphylaxis (pronounced as ‘anna-fill-axis’).
    • All adrenaline auto-injectors (AAIs) come with the following instructions on storage of their device: keeps AAIs in their original containers to prevent light exposure, do not store above 25oC and do not freeze. For EpiPen devices there is an additional instruction to not refrigerate the device.
    • Your adrenaline auto-injector devices should be checked regularly to ensure the liquid is clear and colourless. If it appears discoloured or contains particles, the device should be replaced.

Anaphylaxis Campaign announces new president

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The Anaphylaxis Campaign, a UK charity that supports the growing number of adults and children affected by severe allergies, has today (6 May 2020) announced its new president, former vice-president David Reading OBE.

On 2 April, the charity was notified of the sad death of its Honorary President, Dr. Bill Frankland MBE, who had supported the Campaign since its foundation in January 1994.

David will now continue the role that Dr. Frankland formed in supporting the charity’s work and helping to raise the profile of severe allergies.
David Reading OBE

A former journalist, David co-founded the Anaphylaxis Campaign after his 17-year-old daughter Sarah died of an allergic reaction to peanuts in October 1993. He worked voluntarily for the organisation as its chairman and became the charity’s full-time director in the summer of 1999. He was awarded an OBE for his work in 2005.

David has since retired from full-time work but works part-time for the Campaign ensuring that it continues to provide evidence-based and reliable resources for the allergic community.

David Reading OBE said:

“I had known Bill Frankland since the Campaign was set up 26 years ago and he was a much-treasured supporter of our work. I am delighted to have been asked to succeed him, although his example will be hard to live up to.

My main wish is that people will continue to support our work in these very challenging times. Most charities have been hit hard by the effects of the pandemic, and ours is no exception. The everyday problems of people who are at risk of anaphylaxis have probably receded in the minds of many people, but those problems have not gone away – they have just been eclipsed by other, very real issues. Therefore I would ask people to support our work in any way they can.”

Lynne Regent, CEO of the Anaphylaxis Campaign, said:

“David is a fantastic person to take up the role of Honorary President of the Anaphylaxis Campaign. He has brilliantly supported our charity since it began 27 years ago, at first as a founder, then as its Director and, in recent years as a key member of our information team. This is a great appointment for the Anaphylaxis Campaign.”

My story – Thalina Houghton, 16

Thalina Houghton from Daventry, Northamptonshire, shares her experience of being diagnosed and living with the threat of anaphylaxis at 16 years old.

The nurse shaped words which were foreign to my ears. ‘Anaphylaxis. It’s a severe all-‘ as the words left her tongue, I remember a gale of questions swarming at me in all directions. Leaving the outpatients ward with nothing but an adrenaline auto-injector and a growing series of questions, little did I know, I had embarked on one heck of an allergy journey…

Hello, I am Thalina Houghton, sixteen years of age and I have multiple severe allergies. The scenario I mentioned above was when I got my first diagnosis of anaphylaxis. At the time, I had no idea what that meant or what it consisted of and I feel many others will or would have left the clinic with the same questions as I did. ‘How will this affect me?’ or ‘Will I ever have to use this pen thing?’ to mention a couple. The best advice I can offer for anyone feeling like they were in a similar position as I was in – confused, worried, concerned – is to remember YOU ARE NOT ALONE.Thalina Houghton

There are so many living with anaphylaxis and being told you have a condition which is potentially fatal, will of course spur some queries and worry but you are not in this journey alone. Charities such as the Anaphylaxis Campaign are amazing at ensuring you get support and a helping hand if you feel you’re struggling. Gratefully, the Anaphylaxis Campaign provide support groups across the country where other allergy sufferers open up about their personal experiences and exchange useful tips. Other means of support they offer are Allergy Buddies. They provide support on a one to one basis, this can be done either via email or on the phone, something I’d highly recommend if you’re a parent to a child with allergies. Their team are there to help and don’t ever feel ashamed for reaching out. You’re doing what you need to, to adjust to this new diagnosis. You’ve got this!

Admittedly, I find the most difficult part of living with anaphylaxis to be the spontaneous, random reactions. Over half of my shocks are due to a trigger unknown – commonly known as idiopathic anaphylaxis. As much as I try to rack my brain of a possible cause, I’m commonly left pondering why my body reacted when it did. What had I been exposed to? With these reactions becoming frequent, I found myself avoiding certain environments or situations where I thought there was risk. Realising this approach to living with anaphylaxis was placing barriers mentally, I came to terms with the fact that no area or situation will be completely risk free. There will always be a fraction of risk. I soon switched my mindset from ‘what if I react?’ to ‘I know exactly what to do if it happens.’ It’s so vital not be consumed by your allergy and give it the power to dictate. There will always be an element of risk but how you manage and adjust to that is so important. Adapt, not avoid.

Living with anaphylaxis has impacted my life but it has developed me as a person in numerous ways. I am beyond grateful for the opportunities it’s allowed me to do and hope I can inspire others to be vocal about their allergy.

Thank you, Anaphylaxis Campaign, for giving me the opportunity to share my story and for continuously providing support to those living with anaphylaxis. Remember, you are never alone. You’ve got this!

Thalina Houghton – Allergies In Bold