The Impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders

Abstract

Migration from different parts of the world to several European countries leads to the introduction of haemoglobinopathy genes into the population, which creates several demanding needs for prevention and treatment services for Hb disorders. In this paper we examined the degree to which European health services have responded to such challenges and in particular to health services necessary to address the needs of patients with thalassaemia and sickle cell disease (SCD). Information on available services was obtained from international organizations, collaborated European project, and the Thalassaemia International Federation (TIF) Databases, which include information from published surveys, registries, field trips, and delegation visits to countries and regions by expert advisors, local associations, and other collaborators' reports. Results show that countries with traditional strong prevention and treatment programs are well prepared to face the above challenges, while others are urgently needed to address these problems in a systematic way. The Thalassaemia International Federation (TIF) is committed to monitor the progress, raise awareness, and support the promotion of more immigrant-oriented health policies to ensure their integration in society and their access to appropriate, adequate, and timely health services.

Global migration and the changing distribution of sickle haemoglobin: a quantitative study of temporal trends between 1960 and 2000

“…Such migrations can have a profound effect on the range and frequency of inherited disorders. Angastiniotis and colleagues studied the effect of migrations on health services for rare diseases across Europe 10 . In the specialty of haemoglobinopathies, various studies have been done investigating the effect of migration on health-care services for patients with sickle-cell disease and thalassaemia in countries including the UK, 61 the USA, 14 Western Australia, 62 Iran, 63 and Italy 36 .…”

The Rare Anaemias

“…Haemoglobinopathies are the most frequent RBC defects in comparison with membranopathies and erythroenzymopathies that in many cases can be considered ultra-rare anaemias (prevalence <1 case per 10 6 inhabitants). All these diseases are more frequent in Southern Europe than in Central or Northern Europe, and their clinical expression is always an hereditary haemolytic anaemia [19,20]. Haemoglobinopathies are the consequence of globin gene mutations that can alter the synthesis (thalassaemias) or the structure of haemoglobin (structural haemoglobinopathies).…”

Transition of Thalassaemia and Friedreich ataxia from fatal to chronic diseases

“…Similarly, many couples are deciding to have TM children instead of abortion, because of emotional, religious and ethical reasons and also as a result of the newly improved treatments, which lead to an increase in the life expectancy of TM patients. As a result of these trends and also the marriage of Cypriots with non-Cypriot carriers the number of births of TM children has increased slightly in the last few years [50] . It is estimated that there were about 25 births of TM children from 2005 to 2011, i.e., a rate of 3-4 per year.…”