How might we integrate systems for the continuum care of sickle cell anemia patients?
Sickle cell anemia is a major public health problem in India. India is estimated to have the second-highest burden of the disease, with over 20 million people with sickle cell traits and 1.4 million with sickle cell disease (SCD). The disease disproportionately impacts vulnerable tribal communities in India, where about 1 in 86 births among indigenous communities are affected by it.
The Prime Minister launched the National Sickle Cell Anemia Elimination Mission in 2023, aiming to eradicate anemia by 2047. The mission is aimed at providing affordable and accessible care to all SCD patients, ensuring the quality of care and life while hoping to reduce the prevalence of SCD. Currently, the program brings a strong health lens of disease treatment, leveraging medical science as the primary source of intervention design. Without integrating other aspects that can influence health outcomes for this population, such as social safety and dynamics of daily life in tribal communities, the program will be limited in achieving its ambitious goal.
Madhya Pradesh, Jharkhand & Chhattisgarh
In partnership with the Transform Rural India Foundation, and supported by the Madhya Pradesh Department of Health, the Madhya Pradesh Department of Tribal Affairs, district administrations, Health and Wellness Centers, and community leaders.
Our goal is to conceptualize and prototype a system of continuum care to improve the well-being of tribal people with sickle cell anemia. The continuum will integrate elements of health systems (screening, treatment, tracking) with social security systems (housing, food, credits) and community systems (stigma, social support, acceptance).