Professor Jonathan Hourihane:

I am professor of paediatrics and child health in UCC. I was a member of the 2012 to 2014 food allergy and anaphylaxis task force of the European Academy of Allergy and Clinical Immunology, EAACI, whose documents were published and launched at EAACI’s annual congress in Copenhagen last week. I submitted that in PDF form as part of my written evidence. Other scientific documents were also included. I am the co-chair of EAACI's food allergy and anaphylaxis meeting, the world’s biggest food allergy meeting, which is scheduled for the National Convention Centre in Dublin in October. The committee is invited to attend, if members so wish. 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 co-lead, with Dr Michael Byrne, the anaphylaxis initiative in UCC. I am chairman of the Irish Food Allergy Network. Until last week I was secretary of the Irish Association of Allergy and Immunology, which receives unrestricted financial aid from industry, including contributions from manufacturers of autoinjectors. I declare that as a relative conflict of interest. However, the grant is unrestricted. I am a board member of the Clemens von Pirquet Foundation, an independent charity affiliated to the professional association, EAACI, which promotes the scientific study of allergy in children. I have received research funding and travel grants from other sources. I recently visited Boston to investigate the possibility of bringing oral immunotherapy practices to Ireland.
Anaphylaxis is a term coined by Clemens von Pirquet in the early 20th century to indicate the phenomenon of lack of protection. Prophylaxis is protection and anaphylaxis is lack of protection. Anaphylaxis could loosely be considered the opposite of prophylaxis. The use of the term anaphylaxis is now broadly related to allergic reactions to allergens, which can be foods, which we are mainly talking about today, pollens - we are in the middle of hay fever season at the moment, house dust mites, which cause asthmatic attacks, and medicines, which are by far the commonest cause of anaphylaxis because they are administered to people by routes that are not natural such as injection and other means. Anaphylaxis is a common problem within hospitals but we are probably more focused today on community reactions outside the hospital setting. Recent European position statements and systematic reviews recognise how difficult it is to collect data because the disease is diffuse in its presentation and it is difficult for unfamiliar physicians, nurses, other health professionals, members of the public, parents and other carers to recognise it. It is noteworthy that 20% of acute asthma deaths are probably anaphylactic in nature because the final common pathway in anaphylaxis can be wheezing and the person may be too unwell to say why the wheezing started.
Anaphylaxis is likely to become more common because we are moving into a dynamic phase of management of food allergies where we are giving the foods people have been rigorously told to avoid. In the oral immunotherapy programmes it is harder to have the treatment than the condition where one simply avoids the food rather than eating it. Allergic reactions are becoming more common. Iatrogenic anaphylaxis is going to become more common. Immunotherapy will be moving from research protocols to more routine care in other parts of the world but, as usual, Europe, and in particular Ireland, will be behind the curve due to inherent caution and uncertainty.
It appears that people at risk of anaphylaxis have a lack of protection against the outcome of the condition. People are unaware of the condition. The legislation is not in place to protect people who might be aware of it and families are uncertain as to who can help them. The situation could be addressed with simple or complicated legislative measures that would be both innovative and widely welcomed by the public.
While death from anaphylaxis is rare, the prospect of it is not. Death is a grim part of daily life for families. They feel they are being followed around by the Grim Reaper. That is a sentiment I hear every week. A more classical way to put it is that the sword of Damocles is hanging over their heads. They feel that the Grim Reaper will take their child if they make the tiniest mistake with their food. That is a hard way to live. It inhibits families sharing their child's life with other carers and adults in loco parentis and limits their child's normal integration in social groups such as after-school clubs, sports clubs and social parties. Those are all normal parts of life which are manageable allergy exposing situations if proportionate restrictions and precautions are in place. The handing over of adrenaline autoinjectors from an experienced but anxious family to an inexperienced and unfamiliar family can be very stressful and can limit such interaction for families.
In the United States, the Executive has enacted the School Access to Emergency Epinephrine Act. However, it must be recognised that President Obama had a personal interest in the issue as one of his daughters is peanut allergic. She has eaten food in Ireland, in Dalkey, and precautions must have been put in place for her in a way we do not think is worth putting in place for other children. The intention of the Act is to indemnify and encourage schools to have generic adrenaline available to administer to people who do not have their own adrenaline kits, or more likely to people who are not already aware that they are allergic to a food such as Ms Moynihan found out in adulthood.

There is no reason that this administrative effort could not take place in Ireland, which has far more limited or effectively no on-site school medical services. Nurses are employed in schools in the UK and America but it is not common in the public school system in Ireland. However, it must come with appropriate training packages and renewal mandates. It is not something that can be stuck to the wall with masking tape. We have to be familiar with the use of these devices in a way that allows us to be confident in using them in a situation where everything else has gone wrong. It is not sufficient to just put these kits into restaurants and catering outlets without the backup of training and support from public health authorities and allergy services.
We have far fewer allergists than America or European countries. Finland, with approximately the same population as Ireland, has 100 paediatric allergists. It is also difficult to access to allergy services in Ireland. The paediatric allergy clinic in Cork University Hospital is the largest in the country and I personally receive twice as many referrals per week as all the other services in the hospitals, each of which are resourced with two consultants. I am a 0.5 position because I am an academic and I receive twice as many referrals, which pro rataequates to four times as many referrals. My service’s wait times are all in breach of HSE guidelines and I have no idea how to fix that. Waiting times for the allergy clinic in Cork are at least one year for routine appointments and three years for diagnostic food challenges. These obstacles to accessing treatment suggest that the need for empowering patients and 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 his or her medicine, this assistance is covered by Good Samaritan provisions in 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 adrenaline is not specifically prescribed. This problem was solved in the United States and there is no reason that the Oireachtas cannot do the same. A pilot study proposed by UCC in 2009 and 2010 engaged in extensive training and recruitment of first responders for a programme of campus wide allergy stations beside existing defibrillators. The photograph I have circulated to members shows a locked black box beside a defibrillator. It is not the case that somebody can insert a €2 coin into this box to open it or that it is easily accessible. A first responder would have to be asked to access the box. The programme was voluntarily suspended in February 2011 in the context of confusion about over the counter administration of oral contraceptives by pharmacists. As it became apparent that the legislation under which we presumed protection would be available was unclear, we decided we could not take that responsibility. Since 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 prior to January 2013, when a Deputy facilitated a meeting with the Secretary General. Unfortunately, no material progress has occurred since then, despite multiple inquiries.
Since the death of Emma Sloan by anaphylaxis in Dublin in December 2013, our study in Cork has received details of 36 more cases of survived anaphylaxis in Irish children. The regional variance in reporting reflects the uneven 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 having this discussion because she might be alive and well in the United States. The wider, regulated 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.