PROJECT TITLE: HEMOGLOBINOPATHIES FOR IMMIGRANTS: EDUCATION, PREVENTION , GENETIC DIAGNOSIS AND TREATMENT APPROACH. ACRONYM: EQUALITY PLUS Although hemoglobinopathies are common in tropical and subtropical regions due to natural selection, malaria hypothesis has been an important public health problem in many parts of the world due to migration. The World Health Organization (WHO) resolutions are based on the results of the Hemoglobinopathy Control Programs and the community-based Thalassemia Control Program in the Mediterranean region since 1970s.The hemoglobin disorders are endemic in 60% of the 229 world countries, affecting about 5.2 % of the population and a 7% of pregnant women . Accordingly, every year 332,000 newborn are affected by hemoglobinopathies. In Turkey, hemoglobinopathies are a very important public health problem as described by law in 1993, and a regulation in 2002. The Ministry of Health (MOH) and the National Hemoglobinopathy Council (NHC) 33 provinces for National Hemoglobinopathy Prevention Program (HPP) and the study was started on 8 May 2003 in Mersin. Accordingly 90% of newborns were prevented by HPP first 10 years. This program was extended to 41 cities in 2013. The number of patients and carriers of haemoglobinopathies has increased, especially in the south and south eastern provinces with the intense arriving of Syrian migrants and the number of newborns with thalassemia has increased to around 1000 and the number of patients that was about 5000 has increased up to 6000. In 2002, the Thalassemia International Federation (TIF) and the European Network for Rare and Congenital Anaemias (ENERCA), published a policy report on the situation of hemoglobinopathies and migration impact in different European countries pointing out the question “is Europe ready to face this important health care challenge?” It is noteworthy that in recent years, the profile of patients with hemoglobinopathy in Europe has significantly changed due to steady flow of migrants from Syria, Iraq and other Middle East countries, in addition to the classical migration from African and Asian countries. This project will provide the best appropriate system for education and training of physicians, not experts in haemoglobinopathies to be able to take over the different . Based on ENERCA experience, and the longstandig Ferrara experience in diagnosis and treatment of thalassemia, Both partners have participated in the previous successful EQUALITY Project and will take part in this new project by creating a new Consortium with the incorporation of several other experts from Spain and Italy that will serve as experienced models for transnationality (cross border) health care. According to the frequency of hemoglobinopathy carrier in the Syria is 10 percent and there are 4 milion immigrant in Turkey therefore about 400.000 carriers of immigrants, and expected, 100 newborn patients per year.The estimated total cost per patient is about 7500 € per year. Therefore, if we prevent the born of new patients we will save 750.000 € in the next 3 years. The aims of project are mainly the screening, prevention and education. The protocols of treatment of hemoglobinopathie followed in Turkey,Spain and Italy will be also taken in consideration. The objectives of the project are to achieve the targets: a. To address mainly the issues of thalassemia and sickle cell anemia in migrants living in Turkey,Spain and Italy, b. To train health managers and family physicians who carry out primary care services in South and South East provinces of Turkey where immigrants are concentrated, c. To carry out screening of migrants to living in South and South East provinces of Turkey marry and married but not tested migrants and giving genetic counseling for those who have carriers, e. To prevent the birth of sick children using prenatal diagnosis and preimplantation diagnostic methods, f. To determine the number of patients and to determine the type of disease by conducting their genetic analysis performed in Turkey, g. To ensure an adequate health care, we will provide to train specialist physicians who could not attend the Thalasemia Seminar within the framework of the newly completed Equality: Equality project. Methods to be used for the development of Equality plus project: To determine startegy education meetings (SEM) for prevention hemaglobinopathies and management of hemoglobinopathies in Turkey, Italy and Spain where EU partners are present. b. To train health manager and family physicians with practical implementation education meeting (PIEM) by the problem-based training method with technological facilities, thus to determine the carrier frequency of hemoglobinopathies, genetic counselling of carriers, to guide carriers to Prenatal Diagnosis Centers and Preimplantation Genetic Diagnostic Centers to prevent ill child birth and to follow up patients as regularly.
The objectives of the project were to achieve the following goals: (a) to address the problems of hemoglobinopathy among immigrants living in Turkey, Spain and Italy, (b) to train health managers and Syrian doctors working in immigrant health centers in the Southern and Southeastern provinces of Turkey where immigrants are concentrated, and (c) to prevent the birth of a sick children with hemoglobinopathy in immigrants.
Background: Hemoglobinopathies are an important public health problem in many parts of the world due to migration and have become a worldwide public health problem According to the World Health Organization (WHO), hemoglobin disorders are endemic in 60% of the 229 world countries and 5% of the world's population. More than 300,000 children with hemoglobinopathy are born each yearly in the world. WHO has been started the Hemoglobinopathy Control Programs and the population-based Thalassemia Control Program in the Mediterranean region since the 1970s. Through mobility and migratory flows, hemoglobinopathies have spread from the Mediterranean, Africa and Asia to all of Europe, America and Australia. Health education, public awareness and sensitization, and prevention of affected births are the mainstay of the fight against hemoglobinopathies, taking into consideration that no radical cure is currently available for the vast majority of patients. Anatolian lands and Europe have been exposed to large refugee movements throughout their history. Over the past two decades, official national statistics have revealed that immigrants to Europe have come from many different countries. In 2002, the Thalassemia International Federation (TIF) and the European Network for Rare and Congenital Anaemias (ENERCA), published a policy report on the situation of hemoglobinopathies and migration impact in different European countries pointing out the question “is Europe ready to face this important health care challenge?” It is noteworthy that in recent years, the profile of patients with hemoglobinopathy in Europe has significantly changed due to steady flow of migrants from Syria, Iraq and other Middle East countries, in addition to the classical migration from African and Asian countries. In Italy, Thalassemia Prevention Project was initiated with the support of the World Health Organization in the early 1970s and thalassemia was completely prevented in the 1980s, has been leading other Mediterranean countries. SCD has become a problem in recent years due to immigrants from Africa and other countries. So that, SCD screening has been started in newborns because of the problem of SCD due to immigrants from Africa and other countries. In Spain, there was no thalassemia and SCD problem until the 2000s, but since 2000, SCD has become an important public health problem due to immigrants from Africa, herefore screening for SCD has been started in newborns. In Turkey, the problem of hemoglobinopathy was known since 1980, so that a law was published in 1993 and a regulation was published in 2002 to prevent hemoglobinopathies in Turkey. Hemoglobinopathy Prevention Program (HPP) has been started in 33 provinces by the Ministry of Health (MoH) and the National Hemoglobinopathy Council (NHC) on 8th of May 2003. Thus, approximately 90% of the birth of newborns with hemoglobinopathy was prevented within ten years. This program was extended to the whole country in 2018. Since 2011, approximately 4 million Syrian immigrants have come to Turkey. For this reason, the number of patients and carriers of haemoglobinopathies has increased, especially in the south and south eastern Turkish provinces In recent years, the number of patients with hemoglobinopathies has changed consistently due to the widespread migration in our country and Europe. For this reason, we decided to carry out a joint project, including Turkey, Italy and Spain, for the assessment and prevention of hemoglobinopathy in immigrants. Under the coordination of AKHAV, with Italy Ferrara's experience in the diagnosis and treatment of hemoglobinopathies since the 1970s, and in recent years the Endocrine Complications Platform in Thalassemia Patients (ICET-A), Spain Barcelona's European Rare Hematological Diseases (ENERCA) experience, Antalya Governorship, Antalya Education and Research Hospital and Antalya Thalassemia Association, we have successfully completed the EQUALITY project between 2016-2018. After EQUALITY Project has been completed we have applied to EU for prevention of hemoglobinopathy in immigration in Turkey, For this reason, we combined the long years of HPP experience of the Ministry of Health, General Directorate of Public Health with partners from Italy and Spain, to carry out hemoglobinopathy prevention studies in the southern provinces of our country where Syrian immigrants are concentrated. Our acronym is EQUALITY +++, and name is Hemoglobinopathy for Immigrants: Education, Prevention, Genetic Diagnosis and the Treatment Approach Project has been accepted by EU Erasmus and we have started the Project on 01.09.2019.Project partners: Ministry of Health General Directorate of Public Health, Casa di Cura Quisisana Hospital from Ferrara, Italy, and Fundacio Institu De Recera Contra la Leucemia Josep Carreras from Barcelona, Spain. The aims of the project: It is mainly focused on the training of Syrian doctors and thus prevention of patient birth with hemoglobinopathy