New Delhi, Sept. 16 -- Change a single letter among the three billion-letter human genetic code, and a red blood cell that should be round and supple stiffens into a rigid crescent that snags in the bloodstream. That one change is sickle cell disease, which for those who live with it brings episodes of excruciating pain, chronic anaemia, heightened vulnerability to infection, and cumulative organ damage over a lifetime. India carries one of the heaviest burdens of this disease in the world. Nearly 88 per cent of people in Asia with the most severe form of the condition are Indian. It falls hardest on tribal communities. The health ministry ranks the disease among the ten that most affect them.
Confronted with a burden of this scale, India has resolved to act. In July 2023, Hon'ble Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission, setting an ambitious national goal to end sickle cell disease as a public health problem by 2047. Its reach has been considerable. By 31 July 2025, 6.07 crore people had been screened across seventeen high-prevalence states, with over 2.15 lakh diagnosed and 16.7 lakh identified as carriers. Within ICMR, this scientific effort is led by its National Institute for Research on Blood and Immune Disorders (ICMR-NIRBID) in Mumbai and driven on the ground by the institute's Centre for Research, Management and Control of Haemoglobinopathies (ICMR-CRMCH) at Chandrapur. It is from this base that ICMR has equipped the national mission with the tools it depends on.
The first of those tools was a dependable and affordable point-of-care test. Requiring only a drop of blood and providing results within minutes, these tests have made large-scale screening feasible in resource-constrained settings. Their widespread adoption was supported by a cost-effectiveness assessment undertaken through the Department of Health Research's Health Technology Assessment in India (HTAIn) programme, alongside ICMR-led validation of more than 25 rapid diagnostic technologies. Together, these efforts helped reduce the cost of screening from nearly Rs 350 to about Rs 25 per test, making population-level screening both practical and affordable.
Equally important is the expansion of newborn screening (NBS). Evidence from several countries has demonstrated that early identification of affected infants, followed by simple interventions such as prophylactic medications, immunisation, nutritional supplementation and timely initiation of treatment, can reduce severe complications and thus improve survival. A multi-centric study conducted by the ICMR across 6 high-prevalence districts, screening more than 68,000 newborn babies for SCD, has demonstrated the positive outcomes, feasibility and challenges for its implementation at the national level. Those identified with sickle cell disease were immediately started on simple, affordable interventions: folic acid, prophylaxis to prevent infections, and pneumococcal vaccination. The results were remarkable. The death rate among these children fell to below 5 per cent. Without screening and early treatment, that figure is between 20 and30 per cent. Integrating newborn screening into routine health services in high-burden districts can be a transformative step towards reducing preventable complications and deaths.
Equally important is understanding what happens to patients over time. While screening programmes identify those affected and newborn screening enables early intervention, improving long-term outcomes requires a deeper understanding of how the disease progresses across diverse populations. To address this need, ICMR has initiated Bharat CARES (Bharat Cohorts for Assessment of Burden and PRogression of End-organ Damage from Sickle Cell Disease) through its National Health Research Programme (NHRP). This multi-centric cohort study is designed to track disease patterns, complications, treatment outcomes and the progression of organ damage among individuals living with sickle cell disease. By generating high-quality longitudinal data from across the country, the study will strengthen risk assessment, support earlier identification of complications, inform clinical decision-making and help refine public health strategies. In doing so, it seeks to ensure that care is guided not only by what is known about the disease today, but also by a clearer understanding of its long-term trajectory in the Indian context.
Yet the disease is not only clinical. Stigma and misunderstanding delay diagnosis, discourage treatment and weigh on families, particularly in the tribal communities where it concentrates. In response, ICMR developed and validated India's first instrument to measure sickle cell disease stigma, only the fourth such tool in the world, addressing a dimension that clinical data alone cannot capture. It measures five dimensions of stigma, including the fear around marriage and reproduction, the difficulty of disclosing a diagnosis, and the challenges families face when seeking healthcare. It exists in both a patient version and a caregiver version, because the burden falls on the whole family, not just the person who is ill. With this tool, health programmes can now measure whether their community outreach is actually shifting attitudes, and adjust accordingly.
The deeper lesson is that durable progress comes only from the convergence of science, policy and community. Screening, newborn diagnosis, clinical research, genetic counselling, public awareness and patient-centred care are not separate initiatives but interconnected parts of a single public health response. India's progress will be defined not by any one programme, but by sustained scientific inquiry, institutional commitment and the engagement of the communities most affected. With researchers, health workers, policymakers and families working in concert, the goal of substantially reducing its burden can move from aspiration to reality, and a child born today in a remote district can look forward to far better prospects than one born a generation ago.
Views expressed are personal. R Bahl is Director General, ICMR and M.R. Madkaikar is Director, ICMR, NIRBID
Published by HT Digital Content Services with permission from Millennium Post.