Rs. 60.00 Crore have been released to the States seeking grants to tackle the Sickle Cell Anaemia, including screening

Key Highlights:

• The Ministry of Tribal Affairs had given funds for screening of tribal students in collaboration with ICMR.
• TRI Division of MoTA has sanctioned a research study program to Sir Ganga Ram Hospital on sickle cell disease.
• A project ‘Diagnosis, IEC and Nutri support for sickle cell anaemia and Thalassemia affected patients’ undertaken.

Ministry of Tribal affairs has taken several steps to prevent the prevalence of sickle cell anaemia. Sickle Cell Disease is a genetic blood disorder affecting tribal population in Central, Western and Southern India.

The Ministry of Tribal Affairs had given funds for screening of tribal students in collaboration with ICMR. Workshops have been conducted in States in collaboration with Department of Biotechnology for mapping of incidences of Sickle Cell Trait. Out of the 1,13,83,664 persons screened as reported by various States, about 8.75% (9,96,368) tested positive (Trait –949057, Disease – 47311).

Public Health is a state subject and Ministry of Health and Family welfare is the sectoral ministry for all health issues, including sickle cell. National Health Mission has prepared a comprehensive guideline to control and prevent Haemoglobinopathies, including Sickle Cell Disease, and has disseminated the same to the states. This includes prenatal diagnosis, counselling and setting up of early intervention centres to prevent and treat the complications arising from the disease.At present there is no permanent cure for the disease. However with good management of disease, severity and complications can be curtailed to improve the quality of life and life span of the people suffering with the disease.

In consultation with Department of Health Research, Ministry of Tribal Affairs has circulated advisories on Sickle Cell Disease with a protocol for premarital counselling of people with sickle cell trait (carrier). A total of about Rs. 60.00 Crore has been released to the States seeking grants to tackle the Sickle Cell Anaemia, including screening.

Further, details of various projects undertaken by the Ministry of Tribal Affairs are as under:

(i) Sickle Cell Disease Support Corner (https://scdcorner.in/) has been developed in collaboration with PiramalSwasthya Management and Research Institute, to create a database of individuals with SCD or trait in the tribal populations; to connect these individuals to welfare schemes, disease-specific healthcare services and validated health information and to enable data-driven policy insights and strategic inputs. The issue has been inter-alia taken up with Chief Secretary(s) vide D.O. letter dated 18.06.2021 regarding compilation of SCD data at state level.

(ii) TRI  Division of MoTA has sanctioned a research study program to Sir Ganga Ram Hospital on sickle cell disease wherein the organization is required to prepare treatise on SCD for training of trainers in medical colleges and modules for training of medical officers at district hospitals and integrated center for hemoglobinopathies and hemophilia. Project will also cover 4-5 workshops for training of trainers. As on date, Sir Ganga Ram Hospital has prepared draft modules and these have been scrutinized by Technical Expert Group (TEG) comprising of experts in the field. Modules have now been forwarded to Directorate General Of Health Services (DGHS), Ministry of Health & Family Welfare for their comments.

3. Integrated Sickle Cell Anemia Research Program “I-SCARP” in Nandurbar district, Maharashtra: TRI Division has given this project to Swami Vivekananda Yoga AnusandhanaSamsthana, S-Vyasa University, Bangalore and INFOMED, Ahmedabad. The project primarily aims to explore naturopathy and yogic methods for curing sickle cell anaemia disease and it is ongoing.

(iv) TRI Division has given a project of Mapping of Sickle Cell Anaemia in the Tribal Sub Plan Area among the Tribal Communities of the State and a Compendium of Empirical Studies & Its findings on Sickle Cell Anaemia among the Tribal Communities of ODISHA to TRI Odisha which is to be executed in collaboration with RMRC, Odisha.

(v) A project ‘Diagnosis, IEC and Nutri support for sickle cell anaemia and Thalassemia affected patients’ to TRI Telangana and it is to be done in consultation with Piramal Foundation and other organizations working with MoTA on SCD project.

(vi) A project entitled ‘Mapping of Sickle Cell Anaemia among the Tribal Communities, Collation of compilation of data, mapping of organisations working in Sickle Cell, Data base of master trainers on sickle cell in co-ordination with MoHFW, Data sharing mechanism and mapping of Blood Banks availability’ has been given to NTRI.

The Sickle Cell disease can be eliminated only if mass awareness campaign is started and there is participation of States, elected representatives, teachers and medical staff at schools and college level. Dedicated Health Cell has been established in Ministry for ensuring the STC component of Health is utilized effectively. Ministry has asked States to submit proposals for funding for basic Infrastructure- as per ready Reckoner and a letter from Secretary, Ministry of Tribal Affairs to Chief Secretaries of States. Ministry has also taken up the issue of disability certificate issued to SCD patients with Department of Empowerment pf person with disabilities, who have notified that Disability Certificate for than 80% disability would be valid for 3 years

This information was given by Minister of State for Tribal Affairs, Smt. Renuka Singh Saruta

in a written reply in Lok Sabha today.