Beyond the screening: The need for health systems intervention for prevention and management of sickle cell disease among tribal population of India.

Globally, sickle cell disease (SCD) is one of the major public health problems. In India, it is more prevalent in tribal communities. Tribal communities are socio-economically disadvantaged and constitute 8.6% of India's population. The health and health care seeking of these communities is very poor. Though efficacious interventions are available to manage SCD, they are not reaching these people and no comprehensive programme is in place. The objective of this analysis is to demonstrate the burden of SCD among the tribes in two Indian states of Andhra Pradesh and Telangana, as a case and to highlight the need for public health intervention and health systems strengthening in the country to prevent and manage SCD. One in 10 persons of tribal population of these states carries Hb S gene. A substantial number of children are born every year with the condition. Mostly, the research is limited to screening. Hence, a programme with early detection and an appropriate referral system should be developed. The primary health care system should be strengthened to screen and manage SCD persons with good disease management practices and appropriate community mobilisation activities. The programme should partner with traditional healers and community leaders. People should be encouraged to seek treatment; and counselling for prevention. The study warrants human-centric approaches during the interventions to address the possible threat of fear of being stigmatised. Thus, the transition of evidence-based interventions into the programme and practice can improve the lives of people with SCD, particularly the tribal population.