Thalassemics India and Thalassemia Patients Advocacy Group (TPAG) organised a hybrid session talking about the situation of Thalassemia management in India, and Initiatives taken by government bodies on the care and prevention of Thalassemia.
May 8 is observed as International Thalassemia Day, every year. The day is devoted to raising awareness about Thalassemia being a blood disorder, debunk related myths and help patients lead a normal life. It also honours the efforts of healthcare professionals to help the patients.
Eminent medical professionals, including Dr Shubnum Singh from CII Public Health Council and Dr Smita Mahapatra, Associate Professor, Department of Transfusion Medicine, SCB Medical College, Cuttack, Odisha, Dr Seema Kapoor, Nodal officer, State Blood Cell, Govt of NCT of Delhi and representatives of patient bodies participated in the discussion.
The theme for International Thalassemia Day this year is Be Aware, Share, Care, and the discussions were around the existing challenges for patients living in developing countries, role of strategic partnerships in prevention and care of thalassemia and Delhi Government’s initiatives on the care and prevention of thalassemia. A special panel discussion on States’s best practices was also held.
Speaking on the occasion, Dr Singh delved on the role of strategic partnerships in the prevention and care of Thalassemia. She said, “Disease management requires a participative approach where the initiative should be from stakeholders to create an ecosystem at the centre of which is the patient. At CII, we leverage our SMEs and corporate partnerships to disseminate knowledge of thalassemia to their employees. The CII is TPAG’s partner for their Safe Blood Campaign. It has written to over 20 States and to Union Health Minister Dr Mandaviya on issuing an advisory to the States on NAT screened blood for thalassemics.
Talking about the New Delhi government’s initiatives on the care and prevention of Thalassemia, Dr Kapoor said, “There are three issues to be focused upon when it comes to spreading awareness on Thalassemia. The first is to create a registry which will be important for all public and private sector hospitals to enroll and add every year number of babies who have been diagnosed in any sector to know how much blood, nature of drugs, and facilities we require to be better prepared. Second is availability of more leuco-depleted blood bags and uniform availability across the public and private sector. The third is to enhance antenatal and prenatal centers and register nursing homes and ensure such data is being recorded.”
Dr Neelam Dhingra, Unit Head of the Patient Safety Flagship – A Decade of Patient Safety 2020- 2030 World Health Organization talked about Thalassemia and sustainable development goals set by WHO while Harsh Mangla (IAS), Director, Ministry of Health & Family Welfare, Govt. Of India talked about the National Health Missions journey on Thalassemia.