Press Release

Community-level education, genetic counselling, and secondary prevention are crucial for preventing hemoglobinopathies: Dr Anil Kumar, MoHFW, Govt. of India

At the ASSOCHAM Roundtable Discussion on Prevention of Hemoglobinopathies, Sickle Cell Disease, and Thalassemia, Chief Guest Dr Anil Kumar, Additional Deputy Director General, Directorate General of Health Service, Ministry of Health & Family Welfare, GoI addressed.

New Delhi, 28th April 2023: At the ASSOCHAM Roundtable Discussion on Prevention of Hemoglobinopathies, Sickle Cell Disease, and Thalassemia, Dr Anil Kumar, Additional Deputy Director General, Directorate General of Health Service, Ministry of Health & Family Welfare, Government of India, stated that they are working on a National level thalassemia control programme on the lines of SCD eradication programme. He further commented on the need to manage thalassemia by encouraging NAT testing (in a phased manner), voluntary blood donation and other support required for thalassemia. He said that the government is gathering data for blood centers across India that have NAT testing facilities including the most remote of the state to have blood testing facilities. The idea is to have one centre in each district. Safe of blood must be ensured for the recipient, he said. Welcoming Dr. Kumar's announcement, Ms. Anubha Taneja

 Mukherjee from Thalassemia Patients Advocacy Group (TPAG) proposed that patients be included in such efforts. 

The rights of the people who are receiving the blood should be monitored. Ensuring that blood centers meet the national standards for blood transfusion services. Technical and manual criteria for voluntary blood donation are being created in preparation for World Blood Donor Day on June 14th, 2023. The private sector's involvement should complement government measures.

Guest of honor, Shri Harsh Mangla, Director, Ministry of Health & Family Welfare, Government of India shared that the portal developed for SCD data shall also be available for thalassemia. Commenting on the management aspect, he commented that thalassemics find it difficult to acquire blood and efforts are being made in this regard too under Raktdaan under Azadi Ka Amrit Mahotsav. and for the same a Sickle Cell central portal has been launched with the required data.  

Dr. Akshay Jain, Joint Director, National Health Authority, Government of India gave his introduction on aiming to provide access across geographies and platforms to patients in the Ayushman Bharat Digital mission for healthcare facilities. It includes sickle cell programs, Digital health initiatives and health data records for hassle free access.

 Context setting was done by Mrs. Shobha Tuli, Secretary, Thalassemic India and said that there is a requirement of comprehensive care with more care centers and awareness programs. She gave her insight on practices, challenges and the way forward for this health burden. Focusing on prevention to extend saving the world. 

  In his welcome address, Dr. Sudhir Kalhan, Chairperson of the ASSOCHAM Digital Health Task Force and Chairman of the Institute of Minimal Access, Metabolic & Bariatric Surgery at Sir Ganga Ram Hospital, provided information on the technological developments and innovative strategies needed to combat the widespread illness. The urgent necessity is to ensure the adoption of hemoglobinopathies preventive measures. Screening for carriers, appropriate counselling and prenatal diagnosis can control hemoglobinopathies and thalassemia effectively.

Dr. Hrishikesh D. Pai, President FOGSI promised a strong messaging on prevention to all obstetrics and gynecologists on 8th May which is World Thalassemia Day.