Sickle Cell Disease and Stigma in India

Abstract Sickle cell disease (SCD) represents a significant public health challenge in India. The disease burden is exacerbated by limited awareness, delayed diagnosis, inadequate access to healthcare, and persistent misconceptions. Despite the implementation of national screening and treatment initiatives, such as the National Sickle Cell Anemia Elimination Mission, stigma continues to impede equitable care and quality of life for individuals with SCD. This review analyzes the psychosocial, cultural, gender-specific, and health-system determinants that contribute to stigma among patients with SCD in India. Stigma presents as internalized, perceived, and experienced forms, originating from recurrent pain episodes, frequent hospitalizations, reduced physical functioning, social labeling, fear of disclosure, and discriminatory attitudes within families, communities, educational institutions, workplaces, and healthcare environments. These manifestations are linked to psychological distress, anxiety, depression, diminished self-esteem, social isolation, poor adherence to treatment, and delays in seeking healthcare. The impact of stigma spans the life course, resulting in school absenteeism and social exclusion among children, developmental and transitional challenges among adolescents, and strained relationships, limited employment opportunities, and reduced autonomy among adults. Women and girls with SCD face heightened vulnerability due to reproductive expectations, discrimination related to marriage, attribution of blame for genetic transmission, and increased risks during pregnancy. Culturally validated measurement instruments, such as the ICMR-SCD Stigma Scale for India, are crucial for assessing stigma severity and informing targeted interventions. Comprehensive stigma reduction requires integrated approaches that encompass disease education, genetic counseling, mental health services, community engagement, transition support, expanded access to hydroxyurea and comprehensive care, and technology-enabled counseling.