China News Service, Beijing, May 8th (Reporter Du Yan) May 8th this year is the 28th "World Thalassemia Day". The "China Blue Book of Thalassemia Prevention and Treatment and International Thalassemia Prevention Forum" was held today in Beijing.
The "China Thalassemia Blue Book (2020)" was released at the conference, showing that since 2015, blood transfusion costs, hematopoietic stem cell transplantation and follow-up treatments have been included in the scope of medical insurance reimbursement, and thalassaemia genetic testing has gradually been included in the scope of premarital examinations, increasing the number of newly-born patients in China year by year And precision health poverty alleviation has effectively reduced the medical economic burden of patients with anemia in China Sea.
The blue book shows that compared with five years ago, many places in China have included blood transfusion expenses in the scope of medical insurance reimbursement, and increased the maximum annual payment limit for outpatient clinics; Enrige (delarose) iron-removing drugs have been included in the national medical insurance drug list, significantly Improved the accessibility and affordability of thalassaemia anti-iron drugs, prolonged and improved the life cycle and quality of life of thalassaemia patients; hematopoietic stem cell transplantation and subsequent treatment are included in the scope of medical insurance reimbursement, and some areas will also observe and observe after hematopoietic stem cell transplantation. Treatment is included in the scope of medical insurance.
The release of the Blue Book of China's Thalassemia Prevention and Treatment and the International Forum on Thalassemia Prevention and Treatment were held in Beijing.
Photo courtesy of Beijing Angel Mother Charity Foundation
According to the Blue Book, during the "13th Five-Year Plan" period, the prevention and control of thalassemia was incorporated into the Healthy China Action Plan, laying a solid foundation for China to establish effective prevention and control of birth defects and to further improve the quality of the birth population.
The local governments of 10 provinces (autonomous regions and municipalities) with a high incidence of thalassemia have designed and implemented specific local prevention and control measures, and established horizontal joint mechanisms.
With the smooth progress of the thalassaemia prevention and control project, thalassaemia has been effectively controlled in Guangdong, Guangxi and other places, and the birth rate of children with severe thalassaemia has dropped significantly.
The policy of benefiting people has been further expanded. Thalassemia genetic testing has gradually been included in the scope of pre-marital examinations and pre-pregnancy eugenic health examinations. Areas with high incidence of thalassaemia have been combined with pre-pregnancy eugenic health examinations to carry out thalassaemia genetic testing.
The blue book shows that China's thalassaemia hematopoietic stem cell transplantation technology has become more and more mature in the past five years. The successful ratio of sibling donor transplantation to treat thalassaemia at this stage has been equal to the international level, and the transplantation of non-related donors has even reached or reached the international level. Exceed the international level.
As the technology of hematopoietic stem cell transplantation matures and the medical talent team continues to grow, there are more and more hospitals that can perform stem cell transplantation. Hospitals all over the country have also increased transplantation positions, and the resources for thalassaemia patients have become more abundant.
The Blue Book also shows that looking back on the five years, social organizations, volunteer teams and other social forces that have carried out thalassemia relief service work based on their own positions, giving full play to their professional and personal advantages, and are involved in rescue, policy advocacy, psychological counseling, information exchange, and knowledge. Training, assistance and counseling have played a more prominent and important role.
According to the Blue Book, in the past five years, with the advancement of modern gene editing technology, the basic research and clinical practice of gene therapy have brought the treatment of thalassaemia to an unprecedented level and level, making gene therapy based on gene editing hopeful to become a β-ground. A new clinical treatment plan for poor patients.
At the same time, China's cell and gene therapy-related policy system framework has also been continuously improved, and a series of policies have gradually strengthened the supervision of the cell and gene therapy industry.
The release of the Blue Book of China's Thalassemia Prevention and Treatment and the International Forum on Thalassemia Prevention and Treatment were held in Beijing.
Photo courtesy of Beijing Angel Mother Charity Foundation
The blue paper proposes that although China has made remarkable achievements in the prevention and control of thalassaemia in the past five years, the challenges and problems are still urgent. It is recommended to start with the establishment of a long-term system and mechanism, form an effective motivation mechanism, incentive mechanism, and guarantee mechanism, and accelerate the construction A more complete, more resilient, and more efficient thalassaemia prevention and control system commensurate with the level of China’s economic development.
This forum was jointly initiated by the Beijing Angel Mother Charity Foundation, the International Thalassaemia Alliance, and Minde Consulting (Beijing) Co., Ltd., with academic support from the China Philanthropy Research Institute of Beijing Normal University, from Guangdong, Guizhou, Chongqing, Hunan, Jiangxi and other places The staff of the Health Commission and the Maternal and Child Health Hospital, as well as heavyweight experts and scholars in the field of thalassemia prevention and treatment at home and abroad, as well as medical experts from Indonesia, the UAE and other countries participated in the conference through online video to discuss the policy experience and medical technology of thalassemia prevention and treatment.
The forum also held the opening ceremony of the Thalassemia Prevention and Research Center of the Asian Philanthropy Research Institute.
Wang Zhenyao, Dean of the China Philanthropy Research Institute of Beijing Normal University, proposes to use Hainan as a model province to join forces with doctors to form an organic interaction between society and the government to recreate the world’s Mediterranean prevention and treatment program in China.
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