Anaphylaxis Prof JO’B Hourihane 24.06.2014 Credentials I am Jonathan Hourihane, Professor of Paediatrics and Child Health, in UCC. I was a member of the 2012-2014 Food Allergy and Anaphylaxis Taskforce of the European Academy of Allergy and Clinical Immunology, whose documents were published and launched at EAACI’s Annual Congress in Copenhagen last week (www.eaaci.net), and which form part of my submission to the Joint Committee today. I am the co chair of EAACIs Food Allergy and Anaphylaxis meeting, the world’s largest food allergy meeting scheduled for Dublin in October 2014. I am Principal Investigator on a prospective study of anaphylaxis, with Professor Ronan O’Sullivan and Dr Ioana Maris, funded by the National Children’s Research Centre, Dublin. I am co-lead, with Dr Michael Byrne, of UCC’s Anaphylaxis Initiative. I am chairman of the Irish Food Allergy Network www.ifan.ie, which receives unrestricted educational grants from industry. Until last week I was Secretary of the Irish Association of Allergy and Immunology, which also receives such unrestricted financial aid. I am a Board Member of the Clemens von Pirquet Foundation, an independent charity affiliated to EAACI, which promotes the scientific study of allergy in children. I have received research funding and travel grants from industrial sources related to infant formulae and allergen immunotherapy. I recently visited paediatric allergy units in Boston, USA, on a Safefood Knowledge Network Training and Mobility Programme grant to discuss joint research opportunities with colleagues in Massachusetts General Hospital and Harvard Medical School. Anaphylaxis is a term coined by von Pirquet in the early 20th century to indicate the phenomenon of lack of protection against a substance that should be tolerated. Anaphylaxis could loosely be considered the opposite of prophylaxis. The use of the term is now largely related to allergic reactions to allergens, which can be foods, pollens, house dust mite or medicines. Recent European position statements and systematic reviews recognise how difficult it is to collect data prospectively regarding anaphylaxis as it is hard for non-familiar physicians and nurses to recognise it. It is thought that maybe 10 to 20% of acute asthma deaths are actually caused by anaphylaxis particularly in children. Anaphylaxis is likely to become more common as medical care moves to gradual introduction of allergenic foods into the diets of children and adults, trying encouraging the development of tolerance. This was previously considered impossible in this rapidly changing field. Immunotherapy will moving from research protocols to more routine care in other parts of the world but caution has been urged by expert groups both in America and Europe. It appears that people at risk of anaphylaxis have a lack of protection against the outcome of this condition and this could be addressed with simple legislative measures week that would be both innovative and widely welcomed by the public. Anaphylaxis Prof JO’B Hourihane 24.06.2014 While death is rare the prospect of death is a grim part of daily life for families particularly with food and insect allergens. They feel that they are being followed around by the Grim Reaper who will take their child if they make a mistake with the food. This is not a nice way to have to live. It inhibits family sharing their life with other carers and adults in loco parentis and limits normal integration in social groups such as after-school clubs, sports clubs and social parties. These are all manageable situations if proportionate restrictions and precautions are in place. The handing over of adrenaline auto injectors from an experienced but anxious family to an inexperienced and unfamiliar family can be a huge area of stress for all concerned. In the United States, the Executive has enacted the School Access to Emergency Epinephrine Act (2013). It must be recognised that President Obama's motivation may reflect his role as an allergy parent - one of his daughters has peanut allergy. The intention of this act is to indemnify and encourage schools to have generic adrenaline available to administer it to people who do not have their own adrenaline kits available, or more likely to people who are not already known to be allergic to the food before their reaction in school. There is no reason why this administrative effort could not take place in Ireland, with far lower levels/no on-site school medical services available. However, it must come with appropriate training packages and renewal mandates. It is not simply sufficient to just put these kits into restaurants and catering outlets Anaphylaxis Prof JO’B Hourihane 24.06.2014 without the backup of training and support from public health authorities and allergy services. We have far fewer allergists than American or European countries and access to allergy services in Ireland is very difficult indeed. I run the largest allergy clinic in the public sector in Ireland and receive twice as many referrals each week as any other paediatric service in CUH, Cork, each resourced with 2 Consultants (Neurology, Respiratory/ Cystic Fibrosis, Diabetes/ Endocrinology). My service’s wait times are all in breach of HSE guidelines. Waiting times for the allergy clinic in Cork are one year from routine appointments and 3 years for diagnostic food challenges. The need therefore for patient empowerment and empowerment of other partners in the social contract with families may be even more critical in Ireland than elsewhere. If a person who carries prescribed adrenaline needs assistance in using ther adrenaline, this assistance is covered by a Samaritan-based legislation. The administration of unprescribed medication by health professionals is also covered by existing legislation. The gap in Irish legislation relates to the administration by non-medical staff of adrenaline to people for whom that adrenaline is not specifically prescribed. The United States was able to solve this and there's no reason why the Oireachtas could not do the same. In 2009-2010 UCC’s proposed pilot study group engaged in extensive training and recruitment of 1st responders for a programme of campus wide allergy stations, beside existing defibrillators. Anaphylaxis Prof JO’B Hourihane 24.06.2014 The programme was voluntarily suspended in February 2011 at the time of the confusion about over-the-counter oral contraceptive administration by pharmacists. It became apparent that the legislation under which we were presuming protection would be available was now felt to be unclear. From 2011, when we voluntarily suspended our programme, we have sought advice and guidance from regulatory authorities. We received no assistance sequentially from the Irish Medicines Board or the Chief Pharmacist’s Office up to January 2013, when a TD-facilitated meeting with the Secretary General occurred. No material progress has occurred since then, either, despite multiple enquiries. Since Emma Sloan died of anaphylaxis in Dublin in December 2013 our study has received details of 36 more cases of survived anaphylaxis in children nationwide. Reporting varies regionally which can only reflect varying medical awareness of the condition. More cases are inevitable and another “avoidable” death is also inevitable. Continuing legislative inaction could expose the State, its ill-equipped schools, and its health-care providers to liability in such an event. If Emma Sloan had been born Emma Obama, we would not be sitting here today, but she might be alive and well in the USA. The wider, governed availability of adrenaline in the community and easier access to more clinicians who understand anaphylaxis are achievable, affordable and uncontroversial public health care innovations that meet several of the Government’s aims to improve patient autonomy and self care. Jonathan OB Hourihane June 2014