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Ó Caoláin addresses Association of European Coeliac Societies annual conference

11 September, 2015 - by Caoimhghín Ó Caoláin TD

Sinn Féin Health Spokesperson Caoimhghín Ó Caoláin TD gave the opening address to the Association of European Coeliac Societies (AOECS) Annual Conference in Malahide today. It was the first time the conference had been held in Ireland and Deputy Ó Caoláin made the following address.

Deputy Ó Caoláin said:

I would like to extend a warm welcome to all the international guests attending this conference, a very sincere ‘céad míle fáilte’ ‘one hundred thousand welcomes’ to all who are visiting Ireland for the first time and a welcome back to any of you who have visited before. I wish also to thank the Coeliac Society of Ireland for their kind invitation to give the opening address to this year’s Association of European Coeliac Societies Annual Conference, the first to be held in Ireland. To introduce myself, I am Caoimhghín Ó Caoláin and I am my party’s spokesperson on health, shadowing the Minister for Health in the Dáil, the Irish Parliament.  I am also the father of four children with coeliac disease.

A key focus of today’s conference is targeted screening for coeliac disease, screening directed at first blood relatives of those already identified as coeliacs  as opposed to screening of the wider population.

To this end the Coeliac Society of Ireland has circulated a survey to the AOECS member countries to assess what screening practises have been employed or are currently in train in other member countries and at what cost. They aim to achieve a representative picture of screening for the condition across Europe. I understand that the results will help inform their proposal on screening for Ireland. I have every confidence that the Coeliac Society of Ireland will succeed in its lobby supported by informed and evidence based research.  For my part, I undertake to give my full support to the case for targeted screening on the political side of the debate.

Today we will hear from a wide range of speakers contributing to what will be, I am sure, a most valuable day long examination of coeliac disease and its impact on the lives of those tested positive. Fields as disparate as epidemiology, immunology and health economics will all be addressed and the key note speaker will be Dr Ciaran Kelly from Harvard University, who with over 100 papers on aspects of coeliac disease under his belt will share with us his expert insight into the condition.

I welcome the fact that screening was chosen as a key topic for today’s conference and that we will go into much detail on the possible methods and reasons for screening where a first blood relative is coeliac. As a parent of children diagnosed with coeliac disease I appreciate the valuable work of the Coeliac Society of Ireland, and I also appreciate the importance of conferences such as this that help frame the debate about how we will treat and eventually, hopefully, pre-empt this condition in the future. I commend the Coeliac Society of Ireland on their work, and in particular on hosting the annual conference this year, the first occasion that the AOECS has been hosted here in Ireland.

The Association of European Coeliac Societies, an independent, non-profit organisation, demonstrates through transnational co-operation the benefits that true collaboration brings. Shared experiences can benefit those with the condition irrespective of age or their country of domicile.  The Association of European Coeliac Societies is the umbrella organisation of European national coeliac societies with currently 38 enrolled member societies across Europe. AOECS represents people who are affected by coeliac disease or dermatitis herpetiformis and it seeks to collaborate with international coeliac organisations worldwide.

I met the CEO of the Coeliac Society of Ireland, Gráinne Denning, at the Coeliac Society’s recent presentation to the Joint Oireachtas Health Committee, our Parliamentary Health Committee, in January, and was greatly impressed to hear of the important work being undertaken by the society in the interest of those with the condition across this country. As the only patient support group for coeliacs in Ireland, the Coeliac Society of Ireland has identified many innovative ways to improve the quality of life of those affected by what is, at least today, an incurable life time condition based on gluten intolerance.

As you are all aware, due to its hereditary nature, coeliac disease needs to be either ruled in or ruled out in all first degree relatives. I understand that some countries carry out age-based population screening, to ensure that those who remain asymptomatic are identified early. I understand that this approach will be addressed in the course of today’s presentations.  Again, I will do all in my power to convince the decision makers, including the Minister for Health, to invest in such an initiative.

We know that coeliac disease is more prevalent in the Irish population and in those of Irish descent globally than in other national populations. The hosting of the AOECS annual conference here in Ireland is therefore both apt and likely to be of  particular interest to not just the Ireland based delegates here this morning but to a wider audience across this island. We know that at least 1 in 100 people in Ireland have this condition. Our agricultural practices and historical dietary habits have been suggested as having played a role in this high incidence level. We must also remember that while the rate of diagnosis is increasing, the condition does remain undiagnosed in an even greater number of individuals. At least 43,000 people are known to have this autoimmune condition in Ireland and while the care they receive is of the highest standard, there are concerns regarding access to this care. Patients can often have to wait up to 6months to be seen by clinicians. There is an under provision of dedicated staff with unacceptable waiting lists as a consequence.

Four of my children have the condition and thankfully they are in good health. It is a very scary place to be when you are told that a young child has a disease for which there is no cure and that you and they in turn will have to be watchful of all she/he eats for the rest of their lives. Rare but concerning complications, such as small bowel lymphoma and osteoporosis are also of concern to both the individual and their parents.  Our youngest daughter was diagnosed at age 2.  She very deservedly was presented with a ‘well done’ certificate for her bravery as she allowed the scope for her biopsy to go down while fully conscious.  Not an easy thing to do at any age, never mind at age two.

I believe that there should be support for those with the condition who must purchase specialist gluten-free foods. I strongly opposed and sought the reversal of the decision to cease the inclusion of gluten-free products on prescription under the terms of the medical card scheme.  That decision plunged many people into financial difficulty as gluten-free foods are, as many here will be all too aware, far more expensive than ordinary food choices. While these products may be cheaper in shops and supermarkets than in pharmacies, the fact remains that these products are still far more costly and are generally only accessible in the larger food chain stores obligating many coeliac sufferers and their families from across rural Ireland to travel to the larger population centres to access their GF needs. The decision to remove GF breads etc. from medical card prescription coverage, without providing any alternative support to people with coeliac disease, was a thoughtless and uncaring one.

I am heartened by the range of topics to be discussed here today, and I look forward with great interest to hearing the presentations of the eminent speakers lined up to address us.  For my part, I will ensure that our domestic health committee will be made aware of all your proposals.

The talk entitled ‘Tools for Psychological Well-being for Coeliac Persons’ by Eeva Laine of the Finnish Coeliac Society, which we are to hear later on, also shows that we are considering this condition in a holistic way.  This is of particular importance and will be welcomed by coeliacs here in Ireland and throughout Europe.

Before concluding I want to record my thanks and my encouragement to the restaurant sector here in Ireland who have demonstrated an ever growing awareness of Coeliac Disease and the need for gluten free choices on their menus.  This is hugely important and contributes positively to improving the lives and the lifestyle choices of sufferers. 

However, I have a concern relating to gluten free diets as a choice rather than as a medical requirement, as is the case for those with coeliac disease. There are concerns with the rise in numbers making gluten free diets a lifestyle choice that this could impact negatively on the awareness and need to strictly oversee and adhere to the absolute GF standard thereby adversely affecting those with coeliac disease, putting their health at risk, not to mention the severe pain and discomfort that follows any breach of their diet regime. We know from studies in UCC, and for me this was an alarming finding, that for every 10 people purchasing gluten-free foods today, just one has coeliac disease.

Comments in the media here in Ireland (attributed to an internationally known Irish model) show how much more we need to do to ensure that we continue to educate the public about coeliac disease and the serious impact of gluten on those who are allergic and at risk in an evidence-based manner.  For my children it has never been a lifestyle choice, it has been a necessity of life itself. 

Again I would like to commend the Association of European Coeliac Societies and the Coeliac Society of Ireland for their invaluable support for coeliacs, their work in encouraging and supporting research and for this very worthwhile conference. I wish you all every success today and in your continued work in addressing this condition.

In our native tongue – go raibh maith agaibh go leír.  Thank you all very kindly for your attention.

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