Prevention of thalassemia in ethnic minority and mountainous areas

Conference on Deploying the Thalassemia Prevention Plan in 2022. Photo: Thanh Chung

Sickcongenital hemolytic anemia(thalassemia) is a group of hemoglobin diseases that cause anemia, hereditary hemolysis, very dangerous. Patients must live with the disease for their whole life. It is estimated that the average cost of treatment for a severe patient from birth to 30 years old is about 3 billion VND. A severe patient from birth to 21 years old needs about 470 units of blood to maintain life.

Dr. Nguyen Huu Le - Deputy Director of Nghe An Department of Health opened the conference. Photo: Thanh Chung

Thalassemiais the genetic disease with the highest rate in the world. In our country, there are about 12 million people carrying the gene for congenital hemolytic anemia and more than 20,000 people with severe disease who need lifelong treatment.

Every year, about 8,000 children are born with Thalassemia, of which about 2,000 are severely ill and about 800 cannot be born due to hydrops fetalis. People with the disease and carrying the gene are found in all provinces/cities, ethnic groups nationwide... Preventing Thalassemia means preventing the birth of sick children.

To prevent thalassemia, on October 14, 2021, the Prime Minister approved the National Target Program on Socio-Economic Development in Ethnic Minority and Mountainous Areas for the 2021-2030 period, phase 1 from 2021 to 2025.

Currently, the Provincial Hematology and Blood Transfusion Center is treating over 60 patients with thalassemia and hundreds of patients with blood-related diseases. Photo: Thanh Chung

In particular, the activity of preventing thalassemia in ethnic minority and mountainous areas belongs to Project 7 "Health care for people, improving the physical condition and stature of ethnic minorities, preventing child malnutrition". Project 7 is chaired by the Ministry of Health in coordination with the Ethnic Committee and ministries, branches, and localities... Nghe An is one of the 5 epidemiological localities (along with Ha Giang, Yen Bai, Bac Giang, Thanh Hoa) within the scope of the project implementation.

The project's activities to prevent thalassemia in ethnic minority and mountainous areas have the following general goals: Reduce the number of fetal hydrops caused by thalassemia, reduce the number of children born with thalassemia, gradually improve the quality of treatment at medical facilities for ethnic minority thalassemia patients, and gradually prolong the life of current patients.

The specific objectives of the project are: 25% of men and women receive pre-marital health consultation and examination in communes where interventions are implemented; 20% of pregnant mothers receive prenatal screening and examination in communes where interventions are implemented; 100% of obstetrics departments at provincial hospitals in 5 epidemiological provinces provide communication and consultation on thalassemia; at least 10% of health workers, policy makers, managers, and community influencers are raised about thalassemia.

Dr. Bach Quoc Khanh - Secretary of the Party Committee of the Central Institute of Hematology and Blood Transfusion deploys the program of activities to prevent thalassemia in 2022. Photo: Thanh Chung

The activities to prevent thalassemia in ethnic minority and mountainous areas are assigned to the National Institute of Hematology and Blood Transfusion. In Nghe An, the Provincial People's Committee and the Department of Health assigned the Provincial Hematology and Blood Transfusion Center to be the focal point and take primary responsibility for organizing and coordinating with sectors, units, and localities to implement this activity.

Preventing thalassemia in ethnic minority and mountainous areas, in 2022 and the coming time, Nghe An will focus on promoting communication activities on thalassemia to raise awareness, attitudes and behaviors of the community in practicing disease screening; implementing thalassemia counseling in obstetrics departments of provincial and district hospitals; improving the quality of medical services in screening, diagnosis, treatment, care and counseling on thalassemia prevention; training on thalassemia; building a thalassemia screening model in localities...