National Sickle Cell Anaemia Elimination Mission

Policy Update
Paridhi Passi

Background

India has one of the highest burdens of sickle cell disease in the world, but for decades it did not get much policy attention. Sickle cell disease is a genetic blood disorder where red blood cells turn rigid and crescent-shaped, which blocks blood flow and causes anaemia, pain, organ damage, and early death in many cases. Because it is inherited, it runs within specific communities. In India, it is mostly found among Scheduled Tribe populations in Madhya Pradesh, Chhattisgarh, Odisha, Maharashtra, Gujarat, and Jharkhand — over 20 million people in these areas are estimated to carry the trait (MoHFW, 2023).

The Ministry of Health and Family Welfare had been supporting states through NHM since 2016, but this was mostly just treatment for patients who were already diagnosed. There was no screening programme, no awareness work, and no genetic counselling. Tribal communities in affected areas kept getting diagnosed very late and had little information on how to prevent transmission.

The National Sickle Cell Anaemia Elimination Mission (NSCAEM) was announced in Union Budget 2023-24 and launched by PM Narendra Modi on July 1, 2023, at Shahdol, Madhya Pradesh. It runs under the Ministry of Health and Family Welfare and the Ministry of Tribal Affairs through the NHM framework, with the goal of eliminating sickle cell disease as a public health problem by 2047. The immediate target is screening 7 crore individuals aged 0 to 40 within the first three years.

Functioning

The mission works through three pillars — health promotion, prevention, and holistic management. Health promotion is about awareness and pre-marital genetic counselling in communities where stigma and lack of information have delayed diagnosis for a long time. Prevention means screening people through Point-of-Care Testing kits validated by ICMR, which give quick results at the community level. Holistic management covers treatment — hydroxyurea, free blood transfusions, and regular monitoring across health facilities under NHM.

Screening is happening across around 278 districts in 17 states, from District Hospitals to Ayushman Arogya Mandirs, at a reimbursement of Rs. 100 per person. Everyone screened gets a health card showing whether they are disease-positive, a carrier, or normal. A web portal and mobile app track progress at the district level in real time. Training has been given to medical officers, nurses, CHOs, ANMs, and ASHA workers. A five-year CRISPR-based gene therapy project has also been sanctioned under CSIR, though it is still at the research stage.

Figure 1: Progress under the National Sickle Cell Anaemia Elimination Mission showing screening outcomes as of June 2024.

Source: Press Information Bureau (PIB), Government of India.

Performance

By July 31, 2025, over 6.07 crore individuals had been screened across 17 states, which is around 87 percent of the three-year target. Of these, 2.15 lakh were confirmed with sickle cell disease and 16.7 lakh were found to be carriers, putting the total affected or at-risk population at over 18.85 lakh. Around 2.6 crore health cards have been distributed so far.

Table 1: Key Performance Indicators under NSCAEM (as of July 2025)

Indicator	Status
Total individuals screened	6.07 crore (across 17 states)
Screening target (FY 2023-24 to 2025-26)	7 crore
Diagnosed with sickle cell disease	2.15 lakh
Identified as carriers	16.7 lakh
Total affected or at-risk identified	18.85 lakh
Health cards distributed	2.6 crore
Screening cost norm approved	Rs. 100 per person
States prioritised in Phase 1	17

Source: PIB, Ministry of Health and Family Welfare; NHM Sickle Cell Portal, July 2025

Performance across states has been uneven. Madhya Pradesh, Gujarat, Rajasthan, Telangana, Karnataka, and Uttarakhand have maintained relatively high screening rates. However, the actual disease burden remains concentrated in Odisha, Chhattisgarh, Madhya Pradesh, Maharashtra, and Gujarat, which together account for an estimated 95 percent of all confirmed cases nationally (GS Score, 2025).

Table 2: High-Burden States — Diagnosed Cases and Carrier Prevalence

State	Disease Burden	Screening Performance
Odisha	Highest diagnosed cases	Moderate
Chhattisgarh	Very high diagnosed cases	Moderate
Madhya Pradesh	Very high diagnosed cases	High
Maharashtra	High diagnosed cases	High
Gujarat	High diagnosed cases	High
Jharkhand	High carrier prevalence	Moderate
Rajasthan	Significant carrier prevalence	High

Source: MoHFW, PIB; Ministry of Health and Family Welfare Annual Data, 2025

Figure 1 Data: Screening Outcomes under NSCAEM — Breakdown of 6.07 Crore Screened (July 2025)

Source: PIB, MoHFW, July 2025

Impact

The National Sickle Cell Anaemia Elimination Mission has helped bring greater policy attention to a disease that was previously under-recognised despite its high prevalence in tribal communities. Large-scale screening has improved early identification of patients and carriers, while awareness campaigns and counselling initiatives have increased community-level awareness about genetic disorders. The mission has also strengthened data collection and coordination through digital health cards and real-time monitoring systems. However, its long-term impact will depend on whether screening is supported by accessible treatment, regular follow-up care, and effective counselling outcomes.

Emerging Issues

Reaching 6 crore screenings is a significant milestone, but the bigger question is whether these numbers are actually making a difference on the ground for affected communities.

The most pressing issue is the gap between screening and treatment. Finding 2.15 lakh people with sickle cell disease only matters if those people can actually get hydroxyurea, blood transfusions, and regular monitoring. Healthcare infrastructure in tribal districts where the disease is most common is still quite weak, and for many patients the distance between getting diagnosed and getting treated is very large. Public reporting has mostly highlighted screening numbers, while treatment coverage and actual patient outcomes have not really been talked about.

Genetic counselling has its own set of problems. Convincing communities to go for pre-marital counselling when marriage decisions are deeply tied to cultural norms is not easy. There is also not enough data yet to say whether this is actually changing behaviour at the scale the mission needs. Without post-counselling outcome data, it is hard to say how well this part of the mission is working.

There are also concerns about how reliable the screening data actually is. The POCT kits were approved based on fairly small sample sizes and have not been independently tested at scale. International medical literature has pointed out that this needs to happen before any firm conclusions can be drawn from the mission’s numbers (Piel et al., HemaSphere, 2024).

Way Forward

The NSCAEM is an important step because it moves from just treating patients to actually trying to prevent the disease at the population level. Screening over 6 crore people in under two years, across remote and underserved districts, is no small achievement.

That said, the mission now needs to focus equally on what happens after screening. Treatment access, counselling outcomes, and health card utilisation should all be part of public reporting so that the mission can be assessed on more than just screening numbers. Independent testing of POCT kit accuracy would also make the data more credible. Linking the mission with Ayushman Bharat for treatment coverage and with the Van Dhan Vikas Yojana network for community outreach in tribal areas could help extend its reach. The 2047 goal is realistic, but only if the identification of affected individuals is backed by systems that can actually provide them care.

Countries such as Brazil, the United States, and some African nations with high sickle cell prevalence have adopted newborn screening programmes, specialised treatment centres, and long-term genetic counselling systems to manage the disease more effectively. India can learn from these experiences by strengthening follow-up care, expanding specialised treatment infrastructure in high-burden districts, and improving long-term patient monitoring beyond initial screening.

References

Ministry of Health and Family Welfare, GoI. National Sickle Cell Anaemia Elimination Mission — About. https://sickle.nhm.gov.in/home/about

PIB. (2023, July 1). Prime Minister launches National Sickle Cell Anaemia Elimination Mission. https://www.pib.gov.in/PressReleasePage.aspx?PRID=1936735

PIB. (2025, August 19). Update on National Sickle Cell Anemia Elimination Mission. https://www.pib.gov.in/PressReleasePage.aspx?PRID=2157878

Piel, F.B., Colah, R., & Jain, D.L. (2024). Casting light on the national mission to eliminate sickle cell disease in India. HemaSphere. https://doi.org/10.1002/hem3.70033

Outlook India. (2025, July 23). National Sickle Cell Anemia Elimination Mission: Over 18.85 Lakh Identified.

News on AIR. (2025, July 22). India achieves milestone of 6 crore screenings under National Sickle Cell Mission.

Ministry of Health and Family Welfare, GoI. (2023). Operational Guidelines — National Sickle Cell Anaemia Elimination Mission.

About the Contributor

Paridhi Passi is a Research & Editorial Intern at IMPRI and a Political Science (Hons.) student at Daulat Ram College, University of Delhi. Her academic interests lie in public policy and governance.