Anaphylaxis Campaign

Supporting people at risk of severe allergies

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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.

First Oral Immunotherapy Drug ‘Palforzia’ gets FDA Approval

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The Anaphylaxis Campaign is delighted to hear about the success of Aimmune Therapeutics, Inc. in the approval of their oral immunotherapy drug, Palforzia, by the US Food and Drug Administration (FDA). This is the first oral immunotherapy drug that has been approved by the FDA. It currently does not have license for use in the UK.

Palforzia is an oral drug that delivers peanut protein. Through a desensitisation approach, the patient is given increasing doses of peanut protein occurring over several months under the supervision of a healthcare professional. A maintenance phase proceeds this, which requires patients to continually take a daily dose of the drug. This is available for use in patients aged 4 to 17 years. Palforzia was not found to be significantly effective in participants aged 18 to 55 years when compared with the placebo group.

Studies have been conducted in participants in the US, Canada and Europe to assess its effectiveness. The results showed that 67% of Palforzia recipients tolerated a 600mg dose of peanut protein in the challenge, compared to 4% of the placebo recipients.

Whilst Palforzia is not a cure for peanut allergy, it provides protection against reactions to accidental peanut exposures.

Palforzia will only be available through specially certified healthcare providers, health care settings and pharmacies to patient who are enrolled in the Risk Evaluation and Mitigation Strategy (REM) program in the US.

Please find out more information about Palforzia here

Aimmune Therapeutics, Inc. is also looking into immunotherapy for egg allergy and tree nut allergy. Please read our factsheet for more information about immunotherapy here

22-year-old student from the UK shares her dangerous experiences while eating out in Argentina

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I am a 22-year-old student from the UK, sending you an update from my year abroad in Buenos Aires, Argentina. I am a peanut allergy sufferer and wanted to share a couple of dangerous experiences I’ve had here, to warn you about things that you might not have considered when travelling with allergies.

I would say that I am quite proficient in Spanish; I lived in Madrid for a bit and I feel comfortable asking in restaurants whether dishes contain “cacahuetes”, “nueces” or “frutos secos” (to cover all bases). However, I didn’t know that in Argentina, the common word for peanuts is “maní”. So, on my second day in the country, I picked up a pot of hummus from the supermarket, not realising that it contained peanuts, and had my first ever oral reaction to peanuts in the 15 years that I’ve known about my allergy. I am usually extremely careful about checking ingredients, but on this odd occasion I didn’t bother because I never would have expected to find peanuts in hummus! It’s not something that you’d find in the UK. When my mouth started feeling strange, I went to check the ingredients of the hummus – just in case – and the only ingredient I didn’t recognise was “pasta de maní”. I looked it up and it meant “peanut paste”. I was shocked. I was also freaking out because I was alone in a foreign country and didn’t know whether I was ill enough to use an EpiPen. Luckily, the reaction calmed down after a couple of hours and my body rejected the peanuts by vomiting. Whether you want to blame me for my reaction or not, the two things I learned from this experience are 1) to ask for the local names of your allergens even if you think you know the language, eg. Spanish used in Spain is different to Spanish in Argentina and 2) don’t assume that the products you can buy in the UK will be exactly the same as the ones abroad – you may be surprised to find your allergen in something you never would have expected.

There’s a local café that I frequent in Buenos Aires, and I always ask whether the dishes contain nuts. The first time I had pesto pasta there, I asked, they said no, and I was fine. The second time I had the pesto pasta, I didn’t ask, because I assumed that it would contain the same ingredients. I immediately started feeling ill, and, knowing how I reacted to the hummus a few weeks earlier, I was certain that the pesto must have contained peanuts. I asked the waitress about what I’d just eaten, and she assured me that the dish didn’t contain peanuts. Still not convinced by this, I asked to speak to the chef, and he told me that sometimes, when they run out of certain ingredients, they replace them with peanuts. On this occasion, he had replaced pine nuts with peanuts, and that is why I had the reaction. Again, you can blame me for not checking when I ordered, but the staff didn’t even know that the chef had changed the ingredients so I still would have had the reaction! Therefore, I want to warn you to be extra careful if you come to Argentina, as restaurants don’t have allergy lists like they do in the UK. I don’t know if it’s common to replace ingredients with peanuts in other countries as well, but be aware that this could happen to you, too. Don’t assume that ingredients always stay the same. If you’re worried about a dish, double-check with the staff in the restaurant, and if you’re still not convinced, ask to speak to the chef to clarify BEFORE you order a dish.

Having said that, the most recent reaction I had in a café came about even after I had double checked with the staff about the ingredients. I ordered a milkshake that came with wafers on top as decoration. The wafers, as I later found out, were not filled with dulce de leche but with peanut butter! When I asked the staff to confirm the ingredients whilst I was reacting (in case I was reacting to a nut I didn’t previously know I was allergic to), they realised that they did not, in fact, know what was in the milkshake and couldn’t confirm the ingredients. They were absolutely hopeless in the café and didn’t offer any help despite it potentially being a medical emergency. I returned a week later (it took me all that time to recover from the reaction) to speak to the manager. I asked to see the packaging for the wafers and other decorations on the milkshake I’d ordered, and the wafers clearly said that they had a peanut butter filling. I was shocked. I explained how dangerous it was and the importance of the staff knowing all the ingredients so that it never happens again. I wrote in their book of complaints and they promised to contact me to “resolve” the situation, which they didn’t. I was barely offered an apology. This just goes to show how careless people can be and how the standards can differ from country to country. The staff were completely ignorant and lied to me about the ingredients – they didn’t seem to care about the repercussions or show any empathy. Now I don’t feel that I can place my trust in restaurant staff wherever I go.

I honestly feel so blessed to have survived these 3 oral reactions, considering I was previously told I was anaphylactic. Others of you might have even more extreme reactions, so let my experiences be a warning to you all to be more careful when checking ingredients abroad, and to carry your medication with you everywhere.

 

Visit our travel section for information

Statement Regarding Conviction Appeal of Mohammed Abdul Kuddus Following the Death of Megan Lee

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Friday 17th May 2019

Mohammed Abdul Kuddus, the takeaway boss found guilty of manslaughter following the death of 15 year old Megan Lee, has won an appeal against his conviction.

After eating takeaway food containing peanuts from the Royal Spice Indian in Hyndburn, Lancashire on Friday 30th December 2016, Megan Lee began experiencing a severe allergic reaction. She was later admitted to Royal Blackburn Hospital but sadly passed away on Sunday 1st January 2017.

Mohammed Abdul Kuddus was given a two-year jail sentence in November 2018, but Court of Appeal judges quashed his “unsafe” conviction on Thursday 16th May 2019.

 

Anaphylaxis Campaign Chief Executive Lynne Regent says: “We are shocked at this decision, and our thoughts go out to Megan’s family during this difficult time. We will continue to work with the food industry to highlight how vital it is that people living with severe allergies are provided with food that is safe for them to eat. It is extremely important that food companies learn from this tragic incident and the implications of getting it wrong”.

 

Sir Brian Leveson, announcing the decision yesterday, said Megan’s order, including the comment about nuts and prawns to highlight her allergies, was seen by takeaway manager Harun Rashid but not passed on to Kuddus. He said: “He knew nothing of the allergy which she had declared. In those circumstances, the conviction for gross negligence manslaughter cannot stand”.

But, he also went on to say: “There is now a general awareness of the potential risks to those who suffer from allergies and, as a result, it should be understood that the courts will rigorously scrutinise the way in which restaurants discharge the duty of care that they owe such customers”.

 

For more information: https://www.bbc.co.uk/news/uk-england-lancashire-48300528

 

About the Anaphylaxis Campaign

The Anaphylaxis Campaign is the only UK wide charity solely focused on supporting people at risk of severe allergic reactions. We empower people living with severe allergies to be more confidently in control of their lives.

We provide information and support to people living with severe allergies, their families and carers, through our national helpline, volunteer-led local support groups and free online AllergyWise training courses. We also campaign and fundraise to achieve our ultimate aim, to create a safer environment for all people at risk of severe allergies.

If you have any concerns or questions, please contact our helpline team at [email protected] or call 01252 542029.

For further information, please contact our press office via [email protected] or call 01252 893864.

Peanut Immunotherapy Paper Causes Stir in the Allergic World

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Thursday 9th May 2019

Immunotherapy works by slowing introducing small amounts of the problem allergen to the patient in two phases known as ‘initial’ or ‘up dosing’ and the ‘maintenance’ phase, with the aim of reducing allergic reactions following accidental exposure.

The Anaphylaxis Campaign welcomes the research paper by Chu et al which contributes to the science of food oral immunotherapy. This paper has claimed, through a systematic review of 12 randomised controlled trials, that undergoing peanut oral immunotherapy results in an increased chance of allergic reactions when compared to just avoiding peanuts.

We understand that this paper only provides a part of the immunotherapy story, with many of the trials included focussing mainly on the up-dosing stage of immunotherapy where patients are given an increasing dose of peanut over a long period of time. This is when most reactions occur, but are rare during the maintenance phase where peanut dose plateaus.

We would like to also make it clear that, when undergoing immunotherapy, there is a trade-off between the treatment of related side effects of the immunotherapy at home in a controlled environment with emergency medication available over accidental exposure outside the home.

Peanut allergy affects 1 in 50 children, with its prevalence increasing. Peanut immunotherapy can provide protection against reaction to a peanut eaten without warning or control.

The Anaphylaxis Campaign is pleased to promote chapter 3 of Leo’s Story’, a short peanut allergy awareness animated film.

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Welcome to Leo’s Story Chapter 3 which brings the latest results from the pan-European APPEAL (Allergy to Peanuts impacting Emotions And Life) Study to life.  The Anaphylaxis Campaign is a member of Team APPEAL which is a large two-phase study that is investigating the psycho-social impact of peanut allergy on the person with the allergy and their family members.

Chapter 3 reveals the daily life and emotional impact this food allergy has on children, young adults and parents. Anxiety, frustration and stress are just some of the emotional impacts that people are feeling. We encourage you to view this story and share with your friends

In the UK it is estimated that around 5 – 8 % of children have a proven food allergy with up to 1 in 55 children having a peanut allergy.

#LeosStory: Watch. Share. Raise awareness.

Chapter 3: Watch the animation on YouTube here.

Chapter 2: Watch the animation on YouTube here.

Chapter 1: Watch the film on YouTube here.

The Anaphylaxis Campaign provides information and support to parents and carers of children at risk of severe allergies through our free helpline and support groups run by dedicated volunteers.

Our helpline team is on hand to answer your questions about allergies and reactions and put your mind at rest over the things concerning you. Contact 01252 542029 or email [email protected] between 9am and 5pm, Monday to Friday with your allergy problems or questions.