A comprehensive effort to contain sickle cell disease
Sickle cell disease alters the shape of red blood cells, impairing their oxygen-carrying capacity and leading to severe health complications over time. Among tribal populations, the impact is profound, as they are disproportionately affected by this genetic disorder. According to Global Burden of Disease figures (2021), an estimated 82,500 births with SCD occur in India.
The National Health Policy 2017 laid the groundwork for addressing this crisis. Building on this, the 2023 budget announced the NSCAEM, setting a target to screen 70 million individuals under 40 years by FY26. The activity was implemented under the ministry of health and family welfare (MoHFW), making it one of the largest population-based genetic screening programmes globally. The mission also aims to eliminate genetic transmission of SCD by 2047 while providing comprehensive care to those already afflicted.
In its first two years, this mission has yielded remarkable results, with joint efforts of MoHFW and the states. As on July 31, over 60.7 million individuals have been screened across more than 300 districts in 17 high-prevalence states. Among those screened, 216,000 individuals were found to suffer from the disease, while 1.69 million were identified as carriers. Analysis reveals that 95% of cases are concentrated in five states: Odisha, Madhya Pradesh, Gujarat, Chhattisgarh, and Maharashtra.
The story of Meena, a young tribal girl from Nawapara Ambikapur, Chhattisgarh, is emblematic of the mission's impact. Diagnosed during the screening drive, Meena was enrolled in a nearby health sub-centre. The trained Community Health Officer (CHO), auxiliary nurse midwife (ANM) and ASHA worker at the sub-centre ensured that she had access to free hydroxyurea, the drug that significantly alleviated the symptoms of SCD. Today, Meena leads a healthier life and is an advocate for genetic counselling in her community.
To accelerate screening efforts, point-of-care (PoC) diagnostic devices approved by the Indian Council of Medical Research (ICMR) have been deployed. Initially limited to three, the number of approved kits has now expanded to over 30, reducing costs dramatically from ₹100 to ₹28 per kit. This initiative has ensured cost-effective and efficient diagnostic capabilities.
The implementation of this mission is not solely focused on screening; it prioritises holistic care for individuals diagnosed with SCD. Management interventions under the mission include free health care services with access to essential medicines and diagnostics, hydroxyurea, a key drug for managing SCD, is added to the National Essential Drug list (EDL).
The mission also emphasises genetic counselling and public awareness as pivotal strategies for eliminating SCD. Over 26.2 million genetic status cards have been distributed, empowering individuals with critical health information. SCD cards have become a vital tool for informed decision-making, enabling families to make choices that reduce the risk of genetic transmission.
Fifteen health care institutions/medical colleges have been selected to establish Centres of Excellence (CoEs), as per guidelines laid down by the MoHFW, and funding support from the ministry of tribal affairs. These institutions focus on prenatal diagnosis and management of severe SCD complications, ensuring specialised care for at-risk families. Additionally, a National Level Training of Trainers (ToT) programme organised in October 2024 has equipped health care professionals with the skills and knowledge needed to address the complexities of SCD management effectively.
The success of NSCAEM is underpinned by the whole-of-government approach, by which MoHFW is involving the tribal affairs, social justice & empowerment, education, and women & child development ministries. This inter-ministerial coordination ensures holistic implementation, addressing the socio-cultural and geographic dimensions of tribal health. Research-backed interventions, supported by the department of health research of the MoHFW, have further enhanced cost-effectiveness and patient outcomes.
While the achievements are commendable, MoHFW has now shifted focus to future priorities for the mission. The immediate focus will be on expanding genetic counselling, public awareness campaigns, and distribution of genetic status cards. Leveraging community-level platforms will be crucial in ensuring that every carrier and diseased individual receives the care and support they need. Enhanced research efforts will provide actionable insights to refine interventions further.
The true spirit of this mission lies in its motto: 'Supporting our fighters, strengthening our survivors, and standing by our warriors.' By combining political will, scientific innovation, and grassroots implementation, India is poised to eliminate sickle cell anaemia and transform the lives of millions.
As India strides confidently towards its 2047 goal of eliminating SCD, the NSCAEM stands as a beacon of hope. It exemplifies what can be achieved when government, healthcare professionals, and communities unite for a common cause.
India's fight against sickle cell anaemia is not just about combating a genetic disorder — it is a commitment to equity, dignity, and the health of our nation's most marginalised groups. With the experience of individuals like Meena guiding the way, the mission serves as a testament to the transformative power of targeted health care initiatives, marking a historic leap in addressing tribal health challenges.
Jagat Prakash Nadda is the Union minister for health and family welfare. The views expressed are personal.
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