Casting light on the national mission to eliminate sickle cell disease in India

Abstract

Sickle cell disease (SCD) is a neglected global public health burden. 1 Although it primarily affects populations from sub-Saharan Africa, 2 SCD is also prevalent across the Indian subcontinent, particularly among tribal (or scheduled) populations. 3 India is the most populated country in the world. According to the latest population estimates of the United Nations World Population Prospects, 4 its population includes 1.441 billion people, and it is expected to further increase to reach 1.697 billion in 2063. India ranks as the country with the third highest number of annual births affected by SCD, after Nigeria and the Democratic Republic of the Congo. 2 Although SCD has long been considered to be mild across the Indian subcontinent, recent evidence has demonstrated that there was a much wider range of severity than previously thought. 5 Finally, tribal populations tend to be largely over-represented in the low socioeconomic groups across India, making them a vulnerable group for many communicable and non-communicable diseases. 6 Interventions to reduce SCD morbidity and mortality, such as newborn screening, vaccinations, penicillin prophylaxis, and hydroxyurea, have proven to be effective in large-scale studies in high-and upper-middleincome countries, including the United States, 7 United Kingdom, 8 Jamaica, 9 and Brazil. 10 Pilot studies of these interventions have been conducted in numerous low-income countries. 11 Cost-benefit analyses conducted in sub-Saharan Africa 12 and India 13 suggested that these interventions would also be effective in these settings. Nevertheless, due to a lack of political and financial commitments, no national program has so far been launched in a low-or lower-middle-income country of high prevalence for SCD. Despite the curative promises of gene therapies, 14 there is an urgent need to scale up interventions in the most affected countries to improve the quality of life of patients affected and reduce the global burden of SCD. 11 In July 2023, the Government of India launched the "National Sickle Cell Anaemia Elimination Mission." 15 Although this program was officially launched by Prime Minister Modi, it did not receive much attention internationally. The stated aims of the Mission are twofold: (i) to improve the care of all SCD patients for their better future and (ii) to lower the prevalence of the disease by 2047 through a multifaceted coordinated approach toward screening and awareness strategies. The ambitious plan at launch was to screen HemaSphere. 2024;8:e70033.