Government working on innovative methods to tackle SCD: Shri Arjun Munda
New Delhi, June 19, 2021: To commemorate the World Sickle Cell Disease Day on 19th June 2021, the Ministry of Tribal Affairs (MOTA) organized the Second Online National Conclave on ‘Sickle Cell Disease in India’, in partnership with FICCI, Novartis, Piramal Foundation, Apollo Hospitals, NASCO and GASCDO. The event brought together a group of experts on Sickle Cell Disease across India to deliberate on recent advances in Sickle Cell Disease management — ranging from early diagnosis to the latest medicines for the disease.
The welcome address was delivered by Dr. Arvind Lal, Chair-FICCI Swasth Bharat Task Force, Executive Chairman, Dr. Lal Path Labs, followed by an address by Dr Ararup Das, Director, ICMR-NIRTH and Dr. Anurag Agarwal, Director, CSIR, Insitute of Genomics and Integrative Biology. Dr. ShailendraHegde, Senior VP, Piramal Foundation introduced the Unmukt Project (supported by Novartis) which focuses on Sickle Cell Disease management. Shri Naval Jit Kapoor, Joint Secretary, MOTA, delivered the keynote address on the recent work done by MOTA on SCD and future roadmap for SCDs.
Taking note of the importance of this day, Shri Arjun Munda, Union Minister, MOTA, flagged off mobile vans under the Unmukt project for strengthening screening and timely management of SCD in two tribal districts. He expressed concern on the growing number of cases of SCD in the tribal population. He said SCD is affecting more women and children and nearly 20 percent of tribal children with SCD die before reaching the age of two, and 30% of children die before reaching adulthood. He reiterated the need for reinforcing awareness and prevention following simple yet innovative measures to tackle SCD.
Shri Munda said that in order to collect real-time data and provide relevant information related to Sickle Cell, the Government had launched a new portal but data was still lacking. He urged state governments to help create a patient database as well as enhance screening by ensuring proper infrastructure and facilities.
“We need to ensure that individuals — especially women and children — are free from this disease and it doesn’t impact the coming generation.” He urged individuals and states to provide data from districts so that data on the health demographics of patients with SCD could be created to know the prevalence.
Urging more participation from the state governments, Shri Munda said that “the Ministry is looking at ways to control the disease and we will continue to take all necessary steps as required. Sickle Cell disease not only impacts the individual’s lifecycle but also impacts the economy as well,” he added.
Shri Munda assured that MOTA would continue to work jointly with the Ministry of Health & Family Welfare along with other relevant ministries for the prevention, control, and management of sickle cell disease. He highlighted that a Technical Steering Committee — comprising government officials, stakeholders, clinicians, and experts — had been formed to discuss and map out a detailed plan for providing a continuation of care to SCD patients.
The Minister added that the Ministry had taken note of the challenges faced by the patients having limited validity under the Rights of Persons with Disability Act and through coordination, the validity had been increased from one to three years. Moving forward, the Minister added that new developments were likely to be seen in the coming days with interventions focused on data generation, newer therapies, and advancements for better management of sickle cell diseases.
SmtRenuka Singh, Hon’ble Minister of State, MOTA, said the Government was taking initiatives in setting up telemedicine centers – connecting the Centre of Excellence — so that patients could overcome the challenge of time and travel from distant areas. She reiterated an urgent need for multi-stakeholder engagement as well as meaningful partnerships with like-minded organizations, pharmaceutical industries, private organizations, not-for-profit organizations for working jointly to reduce morbidity and mortality from SCDs and increasing the access to care for SCD in tribal regions of India.
Shri Anil Kumar Jha, Secretary, MoTA, Government of India stated that Regular awareness drives and camps are been organised to educate the people about sickle cell and its effects. The MoTA is also setting up a ‘Tribal Health Cell’ which will work in close partnership with the ministries of health, Ayush, and state governments to facilitate the strengthening of primary healthcare systems and invest in tribal health research, he said.
Mr. Kevin Zou, Head of Oncology, Asia Pacific Cluster, Novartis, spoke on new treatment and therapies in SCD management and how Indian patients could benefit from newer advances in science.
Ms. Mary Ampomah, President and CEO of, Global Alliance of Sickle Cell Disease Organization (GASCDO) shared a video message on the occasion.
The Conclave featured an enlightened panel discussion on ‘Multiple faces of Sickle Cell Disease’ which included Dr. Vinita Srivastava- Advisor, Tribal Health Cell, MOTA, Dr. Tulika Seth, Professor-AIIMS; Dr. Aarup Das, Director, ICMR-NIRTH Jabalpur, Madhya Pradesh; Dr. AnupamSachdeva (HOD, Dept. of Pediatric Haematology, Sir Gangaram Hospital, Delhi); Dr. Arvind Neral, Director General, SCIC, Raipur; Dr. Ruby Khan, Deputy Director, Blood Cell, Madhya Pradesh; Dr. P.K Mohanty, HoD General Medicine & Project Coordinator, Sickle Cell Insitute VSSIMSAR, Burla, Odisha, Dr. NandithaChowhan, Deputy Director, Blood Cell NHM, Telangana; Dr. Umang Mishra, SCD control program project officer, Blood Cell, Gujarat; Mr. GautamDongre, Secretary, NASCO; Dr. Suresh Sethi, MD &CEO NSDL; Dr. AlkaJatkar, Associate Professor Gynaecology, Government Medical College, Nagpur, Maharashtra, Prof, Dipty Jain, HOD, Department of Pediatrics, GMC, Nagpur, Maharashtra.
Shri Naval Jit Kapoor, Joint Secretary, MoTA, Government of India stated that an estimated three percent of the tribal population suffers from sickle cell and another 23 percent carries and transmits the sickle cell gene to their children.
“Nearly all tribal communities living in forested terrains across the country have cases of sickle cell. We believe that with appropriate state-of-the-art diagnostics and intervention strategies, the disease burden at the population level can be reduced,” He said.
Shri SaumilMody, General Manager, Novartis Oncology India thanked all the speakers and participants for adding value to the efforts of the government in enhancing the awareness about Sickle Cell Disease and pledging to contribution to caring for the diseased.
