Minister of Tribal Affairs (MoTA), Govt of India, Arjun Munda, on Saturday said that it is important for us to not only discuss the gravity of the Sickle Cell Disease (SCD) but also implement policies, regulations, and solutions for eradication at the grassroots level.
Addressing the virtual ‘2nd National Sickle Cell Conclave’ on World Sickle Cell Day, organised by Ministry of Tribal Affairs, jointly with FICCI, Novartis, Piramal Foundation, GASCDO and NASCO, Munda said that while there has been a lot of research and development in tackling the SCD, and everyone is trying their best to find solutions to this problem, we still have a long way to go. “People world over are invested in finding a cure for this disease. We need to find a rhythm and commitment towards working and connecting with such people- organisations, institutions, NGOs, so that we can achieve our target-oriented goals,” he added.
Munda said the new dashboard of the sickle cell support corner portal helps spread awareness and collects data from states. We need to give importance to build a strong and fool proof data force. This will help genetically prone people in getting medical attention and other certifications. “Coordination and commitment are the two most important goals to erase SCD from the country. We are working tirelessly to spread awareness amongst the tribal areas and to the last mile about this disease so that the future generation is safe and secure,” he added.
The Minister also virtually flagged off mobile vans for screening of Sickle Cell Disease under the Unmukt Project. Two mobile medical units for screening were flagged off in two districts of Jharkhand and Chhattisgarh, respectively.
Renuka Singh Saruta, Minister of State, MoTA, reiterated that SCD is prevalent amongst the tribal areas of the country and is a major reason for fatality amongst the children below two years. “Our aim is to eradicate SCD by collaborating with the government and various NGOs working towards this goal,” she said.
Mary Ampomah, President and CEO, Global Alliance of Sickle Cell Disease Organizations (GASCDO) said, “Over the years we have seen establishment of many sickle-cell support groups in various countries. But what has been lacking is the unifying of these individual roots into a mighty force to champion the sickle cell disease agenda. Let us take a cue from the COVID-19 global pandemic, where the global health community spoke with one voice,” she added.
Brig (Hony) Dr Arvind Lal, Chair-FICCI Swasth Bharat Task Force; Executive Chairman, Dr Lal PathLabs Ltd noted that India has now surpassed Nigeria with highest cases of SCD. “This disease impacts socially, politically and economically marginalised group affecting every part of the body,” he said.
Dr Aparup Das, Director, ICMR-NIRTH Jabalpur said that the focus is on screening, diagnosis, capacity building and working towards technical support for setting up SCD clinics. “In the absence of any cure and treatment in high prevalent areas, identifying carriers alone may lead to stigma and social ostracism. Providing quality care for those with clinically severe sickle-cell anaemia must be our priority. Re-examination of implementation gaps in SCD programme and design and improved strategy for SCD controls in tribal communities is important,” he said.
