The Prevention of Thalassaemia – A Review of the International Scene

Haema 2011; 2(3): 313-318

by Michael Angastiniotis and Androula Eleftheriou

Thalassemia International Federation (TIF)

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Abstract

Improvements, over the years, in the treatment of haemoglobin disorders, have resulted in increased survival. Without limitation of new affected births, this also results in the increased number of patients. The pressure on health services to provide the multi-faceted care demanded by current optimal care protocols for increasing numbers of patients, has resulted in inequalities in healthcare provision for these chronic patients in many parts of the world. Care of multitransfused patients requires adequa- cy and safety of blood supplies, the continuous supply of the iron chelating agents, the involvement of several medical and paramedical specialties for the timely detection and treatment of the complications of iron overload and the necessity for patient care in expert and comprehensive treatment centres. Such ideal case management is difficult to achieve in many countries where the haemoglobinopathy genes are prevalent. To achieve such levels of patient care prevention programmes have been developed which in- clude public information, screening to identify carriers, genetic counselling and the choice of prenatal diagnosis and pre-implantation diagnosis. In countries where such comprehensive programmes of pre- vention and improved patient care have been adopted, the annual affected births of patients has been re- duced by 90-98% while at the same time patient survival and their quality of life has greatly improved. The majority of affected births, however, are in countries of poor socio-economic development and very few have adopted measures either to help their patient population or to limit new affected births. The Thalassaemia International Federation (TIF), a non-governmental organisation, in collaboration with the World Health Organisation (WHO), supports local patient organisations and the local medical commu- nity in each country, in their campaigns to upgrade services.