With the government’s sharp focus on the prevention of disabilities like thalassemia, and sickle cell disease, and in the background of the Finance Minister’s recent announcement on eradication of sickle cell disease by 2047. The Thalassemia Patients Advocacy Group (TPAG), in association with The Associated Chambers of Commerce and Industry of India (ASSOCHAM), recently hosted a roundtable on the prevention of Hemoglobinopathies - Sickle Cell Disease and Thalassemia at Le Meridien, New Delhi. 

The event, which saw the participation of eminent policymakers, doctors, and patient bodies, discussed the current practices, challenges, and way forward for the prevention of hemoglobinopathies like thalassemia and sickle cell disease. TPAG, which is a patient body of Thalassemics India, would work with ASSOCHAM to develop a position paper on the topic.

Dr Anil Kumar, Additional Dy. Director General, Directorate General of Health Service (DGHS), Ministry of Health & Family Welfare, Govt. of India said, “Hemoglobinopathies continue to pose a significant burden on our healthcare system, with limited resources available to address the challenges they present. While DGHS is working on a National level thalassemia control programme, we are equally focused on the management of thalassemia and commit to blood safety through Nucleic Acid Testing (NAT), voluntary blood donation, etc in a phased manner. We aim to release a manual on blood transfusion services and voluntary blood donation guidelines by 14^th June which is World Blood Donor Day.”

We are now faced with an urgent need to launch a national-level thalassemia programme on the lines of sickle cell disease but with a stricter timeline. In this regard, 2016 guidelines on hemoglobinopathies may need a revision to include novel technologies and unique methods of awareness.

The National Health Mission has introduced programmes for controlling thalassemia and sickle cell disease, but they have not yet been fully implemented at the grassroots level.