Haemoglobinopathy Prevention Program in Turkey

Thalassemia and abnormal haemoglobins are a serious health problem in Turkey. Very important steps for toward preventing thalassemia have been taken in Turkey by Ministry of Health (MOH), Turkish National Haemoglobinopathy Council (TNHC) and Thalassemia Federation of Turkey (TFT) since 2000. In 1993, a law was issued called Fight Against Hereditary Blood Disease especially for thalassemia and haemoglobinopathies. The law commends to prevent haemoglobinopathies and to treat all patients with haemoglobinopathy and thalassemia. A pilot project was started and centres were created in the MOH Hospitals in the southern provinces of Turkey. In 2000, TNHC was installed to combine all centres, foundations, and associations into one organization controlled by the MOH. In 2001, the MOH and the TNHC made an inventory of all recorded patients with thalassemia and abnormal hemoglobins in Turkey, registering at least 4513 patients. In 2002, written regulations for the Fight Against Hereditary Blood Disease were published. MOH and TNHC selected 33 provinces situated in the Thrace, Marmara, Aegean, Mediterranean and South Eastern regions with high birth prevalence of severe haemoglobinopathies. In 2003, the haemoglobinopathy scientific committee was set-up, a guidebook was published and a national Hemoglobinopaty Prevention Program (HPP) was started in these high risk provinces . This program is running in these provinces successfully. In 2005, TFT was established as a secular society organization instead of TNHC. In 2007, National Thalassemia Prevention Campaign (NTPC) was organized for public education by TFT. This campaign contributed very important supporting to HPP in Turkey, because totally 62.682 people such as health workers, students, teachers, demarches, religion officers and the other many people were educated for preventing thalassemia and haemoglobinopathies. In 2009, National Thalassemia Education Seminars (NTES) for health personnel have been planned in 26 cities by MOH and TFT. A total 3.600 health persons were educated on thalassemia prevention and therapy with NTES in 18 centres in 2009 and 2010. In conclusion, according to reports of MOH, 46 first level haemoglobinopathy diagnosis centres, 5 second level diagnosis and therapy centre and 5 third level prenatal diagnosis centre were setup and licenced in 30 cities between 2003 and 2009. While premarital screening tests were 30% of all couples in 2003, it increased continuously during 6 years and it reached 81% in 2008. The number of new born with thalassemias and hemoglobinopathies was 272 in 2002, it was decreased to 23 in 2008, as a result there has been an 90% reduction in new affected births.