World Hemophilia Day: Access for All: Partnership. Policy. Progress.
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2022-04-17
April 17, 2022 is the 34th "World Hemophilia Day", with the theme of " Access for All: Partnership. Policy. Progress.", which aims to raise the whole society's attention to hemophilia and create a collective effort, to build and share a social atmosphere, and to improve the hemophilia prevention and care level through inclusive policies and service optimization, and to promote opportunities for everyone to enjoy sustainable development.
Proper understanding of hemophilia
Hemophilia is an X-linked recessive genetic disease caused by mutations in the coagulation factor genes located on the X chromosome. Hemophilia is mainly manifested as spontaneous bleeding or persistent bleeding after mild trauma, hematoma formation and joint bleeding. In severe cases, it can lead to joint swelling, muscle necrosis, joint deformity, muscle atrophy, and even limb disability.
It is estimated that there are about 100,000 hemophilia patients in China, but only about 30,000 cases are currently registered. This huge discrepancy suggests a possible misunderstanding about hemophilia.
Improved Policies and Services
Since China proposed the establishment of a hemophilia information management system and a diagnosis & treatment system in 2009, and various places have gradually included hemophilia in the outpatient special disease medical insurance catalogue, the gap between management and treatment of hemophilia across China has been narrowing. The hemophilia medical service work is moving towards the ultimate goal of "localized management and equal-quality diagnosis and treatment". With the comprehensive coverage of medical insurance and the establishment of the serious illness medical insurance system, hemophilia drugs can be reimbursed partially, and guaranteed the treatment outcome.
Education and Prevention of the disease
The National Health Commission continued to promote maternal and child health actions, strengthened publicity and education on the prevention and control of birth defects, and improved the public's knowledge and health awareness of prenatal and postnatal care. Premarital and prenatal screening and diagnosis are recommended for women with family history.
1. Patients with hemophilia, carriers of pathogenic genes, and couples with history of hemophilia should receive genetic counseling, genetic testing, prenatal diagnosis before pregnancy and prenatal care to determine whether the fetus has hemophilia.
2. On the basis of genetic counseling and informed choice, according to the results of prenatal diagnosis, targeted medical interventions are implemented for pregnant women diagnosed with hemophilia.
3. Families, which at risk of conceiving a child with hemophilia, can choose preimplantation genetic testing technology to assist pregnancy.
We believe in the near future, all hemophilia patients in the world can receive correct diagnosis and regular treatment, stay away from diseases and back to normal life.
