As the National Sickle Cell Anaemia Mission (NSCAEM) completes two years, India, with the third highest burden of Sickle Cell Disease (SCD), stands at a critical juncture. More than 20 million Indians live with this inherited blood disorder, and approximately 42,000 children are born with SCD each year, accounting for 14.5 per cent of global SCD births.
To date, 5.75 crore individuals have undergone screening under NSCAEM. The mission’s robust foundation rests on universal screening, early detection, public awareness campaigns and integrated care delivery, facilitated through the country’s extensive network of public health institutions. However, it is evident that to truly eliminate SCD by 2047, we must deepen our focus on access, equity, and long-term continuity of care.
India’s tribal communities are at the epicentre of the SCD burden. Approximately 83 per cent of this population lives in rural areas, with significant concentrations in States such as Madhya Pradesh, Maharashtra, Odisha, Jharkhand and Chhattisgarh.
These communities often reside in geographically remote and socio-economically marginalised regions. The challenge is not the absence of medical solutions; treatments such as hydroxyurea, counselling protocols, and referral mechanisms are available. The real issue lies in the system’s ability to deliver these solutions equitably and consistently to those who need them most. For NSCAEM to succeed, it must prioritise reaching the communities.
Re-imagining primary care
SCD is not an episodic illness; it is a lifelong condition that requires daily medication, regular monitoring, and ongoing psychosocial support. Distant hospitals mean high transport costs, lost workdays, and long waiting hours. As a result, adherence to treatment in these settings often drops sharply, frequently falling below 20 per cent.
To close this gap, care must shift from hospitals to homes. A community-anchored model is thus essential. Local health actors, such as ASHAs (Accredited Social Health Activists), should be empowered to play more significant roles beyond initial screening. Their responsibilities should include follow-up visits, treatment delivery, mobilising peer support, and providing basic counselling. Madhya Pradesh has set a positive example with its door-to-door screening efforts, targeting pregnant women, schoolchildren, and families of known SCD cases. Odisha offers transport incentives for SCD patients, while Maharashtra ensures that hydroxyurea reaches patients through trained frontline workers..
However, scaling such effort requires more than logistics; it necessitates trust. Many tribal communities harbour deep-rooted anxieties concerning blood disorders and medical interventions. To address these concerns, the power of the community must be fully utilised. Gram sabhas, village councils, and local NGOs should be integrated into programme design and communication strategies. Focusing only on early detection and symptomatic relief, though vital, will not be enough to eliminate the disease entirely. NSCAEM needs to expand its scope to advanced, disease-modifying and potentially curative therapies. This includes integrating a spectrum of advanced therapies, beginning with automated red blood cell exchange, which offers relief during acute complications such as stroke or acute chest syndrome. For patients eligible for long-term solutions, bone marrow transplantation presents a curative pathway, having demonstrated high success rates in matched-donor cases. India is also advancing towards gene-based interventions, with CRISPR-based therapies.
To ensure innovations help reduce health inequities rather than exacerbate them, a phased, publicly financed roadmap with regulatory and ethical safeguards is imperative.
The writer is former Secretary, Ministry of Health and Family Welfare