Addressing Sickle Cell Disease: Healthy Futures, Hopeful Lives

Sickle Cell Disease (SCD) is a genetic condition that causes red blood cells to become hard, sticky, and sickle-shaped, resulting in blockage of blood flow, chronic anaemia, recurrent pain crises, infections, organ damage, and other serious health complications.¹

India carries a significant share of the global burden of SCD, accounting for nearly 15% of all global SCD births.² The disease is particularly prevalent in the country's "sickle cell belt," comprising states such as Madhya Pradesh, Maharashtra, Chhattisgarh, Odisha, Gujarat, Jharkhand, Rajasthan, and parts of Tamil Nadu and Kerala. While the national carrier frequency is estimated at around 3.3%, the prevalence is disproportionately high among several tribal communities, where carrier rates may reach 35–40 percent.³ The sickle cell gene was first identified in India in 1952 among indigenous communities of the Nilgiri Hills in Tamil Nadu.⁴ Researchers believe that the mutation evolved as a protective adaptation against malaria, which was historically widespread in many tribal and forested regions of the country.⁵ This information is based on evidence and estimates reported by national and international public health agencies and research institutions, including the National Health Mission (NHM), the World Health Organization (WHO), and peer-reviewed medical studies published through the National Center for Biotechnology Information (NCBI).

Recognising the public health importance of the disorder, the Government of India launched the National Sickle Cell Anaemia Elimination Mission with the vision of eliminating SCD as a public health problem by 2047 through awareness generation, screening, genetic counselling, and access to quality healthcare services. Further, the Rights of Persons with Disabilities (RPWD) Act, 2016 marked a significant milestone by recognising SCD as a specified disability under the category. This is recognized as a benchmark disability, entitled to various benefits, including educational support, reservation in public employment, protection against discrimination, and other welfare measures. Despite these initiatives, awareness regarding SCD remains limited among educators, caregivers, community members, and professionals. Many individuals continue to face challenges related to delayed diagnosis, social stigma, educational participation, healthcare access, and livelihood opportunities.

In this context, the Central Institute of Educational Technology (CIET), NCERT is organising a Five-day Online Live Interactive Series titled “Addressing Sickle Cell Disease : Healthy Futures, Hopeful Lives” from 7th to 11th September 2026. The online session aims to bring together a diverse group of experts and voices from the fields of haematology, public health, inclusive education, nutrition, rehabilitation, patient advocacy, and community engagement, along with persons with lived experience of SCD, including survivors and SCD warriors.