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The impact of migrations on the health services for rare diseases in Europe

Free population movements are an important challenges to global health

June 5, 2013

The Scientific World Journal

Based on the example of haemoglobin disorders, members of the ENERCA network have published a work in The Scientific World Journal analyzing the impact of migrations on the health services for rare diseases in Europe. Migrants, like all people, carry with them personal health prints made up of ethnic and family disease susceptibilities. The authors examined the degree to which European health services have responded to challenges such as the introduction of haemoglobinopathy genes into the population. Results show that countries with traditional strong prevention and treatment programs are well prepared to face these public health issues, while others are urgently needed to address them in a systematic way.

Free population movements have always been considered important challenges to global health. For the study, information was obtained from international organizations, European projects, and the Thalassaemia International Federation (TIF) Databases. It was used to evaluate the degree to which European health services have responded to the need to address the control of rare anaemias and more specifically of haemoglobin disorders: thalassaemia and sickle cell disease. The study focused on the European countries that appear to receive the majority of migrants from high-prevalence areas: Austria, Belgium, Cyprus, Denmark, France, Germany, Greece, Italy, The Netherlands, Spain, Sweden and the United Kingdom (UK).

Thalassaemia and/or sickle cell disease genes are more common among the immigrant groups of European countries, and the gene predominance reflects the origin of the immigrant groups residing in each country. The increase in migrations from sub-Saharan Africa for example is seen in Belgium, France, Spain, Italy, and the UK, while other countries are influenced by migrations from Southern and Eastern Europe, West Pacific, and Asia such as Spain and France. The authors observed in most European countries a trend of accelerated influx of migrant populations from high-prevalence areas.

The effect of migrations cannot be assessed only on the numbers of migrants. The behaviour of these groups in terms of marriage, reproduction, use of health services, permanency in the new host country, and other sociological factors also needs to be studied and considered. Another variable whose effect can only be approximated is the contribution of nonregistered migrants who are estimated to be 1–4% of the population in Europe. 

It is evident that, as a result of heavy past and continued migrations coupled with projections for future increase, the thalassaemias and sickle cell disease currently emerge as a visible public health problem in most of Europe. One of the objectives of the article authors is to alert national health policy makers to the need for promoting national policies for haemoglobin disorders and for the improvement of access and integration of immigrant patients to these services. Specific health services registries are considered essential to provide effective planning.

The present work builds a picture of the current situation in Europe which may help raise awareness in the medical community and alert health authorities towards the particular needs in order to respond to the challenges that come with changes in the population demographics. Despite the rarity of the haemoglobin diseases, their chronic nature and complexity result in a significant impact on health planning, which may lead to devastating and immense economic and other repercussions on individual patients and families. 

About the authors and the funding:

The authors of the work published in The Scientific World Journal are, in order of authorship: Michalis Angastiniotis, from the Thalassaemia International Federation (TIF) and member of ENERCA, Joan-Lluis Vives Corrons, Coordinator of ENERCA and investigator from IDIBAPS – Hospital Clínic of Barcelona, Elpidoforos S. Soteriades, from TIF and the Harvard School of Public Health, and Androulla Eleftheriou, Executive Director of the TIF and member of ENERCA. Assessment of the quality of services currently available in each country has been made possible through the work of ENERCA and the funded project from the Executive Agency for Health and Consumers. This funding was provided for the preparation of the White Book on the identification of the criteria for haemoglobinopathy reference centres and networks in the European Union.

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