Ministry of Tribal Affairs organizes a series of workshops on sickle cell disease among tribals as part of Azadi ka Amrit Mahotsav

The Ministry of Tribal Affairs is working to prevent and eliminate sickle cell disease among tribal people. The Prime Minister Shri Narendra Modi, during celebrations of Azadi ka Amrit Mahotsav, Bhagwan Birsa Munda Birth Anniversary and Janjatiya Gaurav Divas launched Sickle Cell Mission for the state of Madhya Pradesh Government from Bhopal.

In pursuance, during iconic week (15th to 22nd November), Ministry of Tribal Affairs has planned 4 sensitization workshops for sickle cell disease in different parts of country involving reputed institutes, renewed hematologists, medical practitioners, paramedical staff, teachers and students from Eklavya schools. These workshops are being held in high prevalence states affected with Sickle Cell Disease on 19th, 20th, 22nd and 23rd of November in collaboration with RIMS Ranchi, AIIMS Manglagiri, AIIMS Jodhpur and Surat Medical College.

The workshop at RIMS Ranchi was inaugurated by Sri Anil Kumar Jha, Secretary Tribal Affairs and Dr Kameshwar Prasad, Director RIMS. Sh Jha said that it is high time to take action on prevention and elimination of sickle cell disease in mission mode. He said various states have undertaken screening programs, however there still there is no central database for sickle cell carriers and diseased. He stressed on need of data based management and elimination plans for the disease. He also informed that Ministry would support initiative of IGIB on research on CRISPER -technology involving gene editing after consultation with Department of Science and Technology, ICMR and Ministry of Health and Family Welfare.

Dr Naval Jit Kapoor, Joint Secretary Ministry of Tribal Affairs and Vinita Srivastava, Advisor Tribal Health gave details of various initiatives of Ministry of Tribal Affairs and stressed on need of e-registry to have data base of sickle cell carriers and diseased.

Sickle Cell disease is a genetic disease prevalent amongst tribal population and it is expected that about 10% of tribals are sickle cell gene carriers and 1-1.5% have sickle cell disease. Ministry of Tribal Affairs is working on a road map for management, control and eradication of Sickle Cell disease. Ministry with the help leading practitioners has also prepared a training compendium for different stakeholders. The Action plan will be implemented in coordination with Ministry of Health and Family Welfare, State Governments, Organizations working on SCD and Non-Governmental Organizations (NGO). Ministry would strive to innovate and improve health care delivery for people living with sickle cell disease through engagement of different stakeholders and provide financial help wherever required for screening and advance research.

The 2nd workshop organized by AIIMS Malkangiri was inaugurated by Dr Mukesh Tripathi, Director and CEO AIIMS and Dr Navaljit Kapoor, Joint Secretary Ministry of Tribal Affairs on 20 th November 2021.

Dr Kameshwar Prasad, Director RIMS and Dr Tripathi, Director AIIMS speaking on the occasion said that all premier Institutes working in Sickle endemic areas have to work together in mission mode and support efforts of Ministry of Tribal Affairs in creating awareness about the disease and providing training to medical and paramedical staff at PHC and CHC level. They also highlighted need of creating Infrastructure for early detection of Sickle Cell gene in pregnant mothers through mandatory screening.

The key speakers included Haematologists, Paediatricians, Gynaecologists, Policy Makers and leaders from patients groups. The faculty belongs to AIIMS Delhi, CMC Vellore, Gangaram Hospital, Fortis Hospital , AIIMS Jodhpur, AIIMS Manglagiri , NIIH,IRCS,RIMS Ranchi , SCB Cuttack, PGI Chandigarh Nagpur Medical college along many other prestigious institutes.

The other workshops planned are in collaboration with Surat medical college Gujrat-22 November 2021, which can be connected through following link.

https://us02web.zoom.us/j/84855963056

and with AIIMS Jodhpur Rajasthan - 23 November 2021 (https://us02web.zoom.us/j/86292109287)

Since awareness and counseling is considered to be one of the hallmarks for preventing and managing sickle cell conditions, these workshops will help in making people aware about causes of sickle cell disease, manner in which it can be prevented, diagnosis and early treatment. Ministry plans to undertake regular IEC activities to sensitize the young tribal population, doctors and para medical staff.

These workshops will serve as a valuable resource in encouraging the stakeholders to increase awareness about SCD, build partnerships, and catalyze the implementation of solutions. It will also provide a platform to identify meaningful actions that must be taken towards advancing care for individuals with SCD.

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NB/UD