Prevalence of Sickle Cell Disease in India’s Tribal Communities

India carries one of the world’s largest burdens of sickle cell disease – a hereditary blood disorder in which red blood cells take on an abnormal, crescent-like shape, blocking blood flow and causing chronic pain, organ damage, and reduced life expectancy. While the disease affects people across many communities, its impact in India falls most heavily on the country’s tribal (Adivasi) populations. This intersection of a genetic disease and a historically marginalized community has prompted one of India’s most ambitious public health responses in recent memory.

What is sickle cell disease and why does it matter in India? 🔗

Sickle cell disease (SCD) is caused by a mutation in the gene responsible for producing hemoglobin – the protein in red blood cells that carries oxygen. In people with SCD, red blood cells become stiff and sticky, forming clumps that block blood vessels. The result is a cycle of painful crises, infections, and long-term organ damage. The disease is genetic, meaning a child can only develop it if they inherit the defective gene from both parents. People who inherit just one copy carry the sickle cell trait – they are generally healthy but can pass the gene to their children.

India ranks third globally in annual births affected by SCD, after Nigeria and the Democratic Republic of Congo. Despite this, the disease has long been under-recognized at the national policy level, partly because its severity was historically underestimated among Indian populations due to higher fetal hemoglobin levels that can soften symptoms.

India’s tribal population and the sickle cell burden 🔗

To understand why SCD is a public health priority for tribal communities, the numbers are telling. According to the 2011 Census, India’s Scheduled Tribe (ST) population accounts for approximately 8.6% of the total population – roughly 104 million people – spread across 705 distinct ethnic groups in 30 states and union territories. They primarily inhabit remote, forested regions with historically limited access to healthcare infrastructure.

The sickle cell gene is far more prevalent in these communities than in the general population. A 2024 systematic review published in Clinical Epidemiology & Global Health estimated the prevalence of SCD at 4.05% among tribal populations, compared to just 0.84% among non-tribals. In southern Indian tribal communities, prevalence figures were even higher. This stark gap reflects both genetic history and the practice of endogamy – marriage within the same community – which has concentrated the sickle gene across generations.

Published research in the Indian Journal of Medical Research shows that the prevalence of sickle cell carriers among different tribal groups varies from 1 to 40 percent, a remarkably wide range that underscores the regional and ethnic diversity within India’s tribal population. The Gond and Bhil communities – the two largest tribal groups in central India – are among those most affected.

High-burden states: where the disease is most concentrated 🔗

SCD is not evenly distributed across India. Certain states carry a disproportionate share of the burden, and these tend to be states with large tribal populations in the central, western, and southern regions.

Madhya Pradesh and Chhattisgarh 🔗

These two states report among the highest SCD rates in the country. In Madhya Pradesh alone, there are an estimated 9,61,492 sickle cell carriers and 67,861 people with sickle cell disease. Twenty-seven of the state’s 45 districts fall within what is called the “sickle cell belt,” where the prevalence of abnormal hemoglobin (HbS) ranges from 10 to 33 percent. Research indicates that in these states, between 10% and 30% of tribal groups carry the sickle cell trait.

Maharashtra, Odisha, and Gujarat 🔗

Maharashtra’s eastern districts, particularly the Vidarbha region and the Satpura ranges, show widespread presence of the sickle gene. In Valsad district in south Gujarat, a screening of 5,467 babies from tribal communities found 12.5% were sickle cell carriers, with 33 babies diagnosed with sickle cell anaemia. Odisha, along with Chhattisgarh and Maharashtra, has been identified by the Ministry of Health as among the states with the highest incidence of confirmed cases.

Rajasthan 🔗

A large-scale study published in Scientific Reports in 2025, covering 78,959 individuals from tribal communities in southern Rajasthan, found a combined prevalence of 10.20% for sickle cell trait and disease. The Garasiya tribe showed the highest combined prevalence at 15.52%, significantly higher than the Bhil tribe at 9.68%. These figures reinforce the importance of tribe-specific data in designing targeted interventions.

Why are tribal communities more affected? 🔗

The higher prevalence of SCD in tribal communities is not simply a matter of geography. Several interconnected factors drive this pattern. The most significant is evolutionary selection – the sickle cell trait offers partial protection against severe malaria, a disease historically rampant in the forested, malaria-endemic regions where most tribal communities live. Over centuries, this survival advantage allowed the sickle gene to become more common in these populations.

The persistence of endogamy – the practice of marrying within one’s own community – and the geographical isolation of many tribal groups have further reinforced distinct genetic identities, increasing the probability that two carriers will have children together and thus producing more cases of full SCD in each generation.

Adding to the health challenge is limited access to diagnosis and care. Findings from the Indian SCD Registry (ISCDR) revealed that 85.2% of tribal patients with SCD were unaware of their condition before being enrolled in the registry. Moderate to severe anaemia was prevalent in the vast majority of those identified – a sobering indicator of how late diagnosis typically arrives in these communities.

The National Sickle Cell Anaemia Elimination Mission 🔗

Recognizing the scale of the problem, the Government of India took decisive action. The National Sickle Cell Anaemia Elimination Mission (NSCEM) was officially launched on 1 July 2023 in Shahdol, Madhya Pradesh – a town in the heart of the sickle cell belt, chosen deliberately for its symbolic significance. The mission was announced in the Union Budget 2023 and carries a national target: to eliminate SCD as a public health problem by 2047, coinciding with India’s centenary of independence.

Scale and scope of the mission 🔗

The mission operates in a mission mode for screening, prevention, and management of sickle cell anaemia, with a focus on 278 districts across 17 states identified as having higher prevalence. These states are Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar, and Uttarakhand.

The mission’s initial plan was to screen 70 million people across India in the first three years, beginning with individuals aged 0 to 18, then expanding to those up to 40 years old. Screening is conducted using either the solubility sickling test with confirmation by high-performance liquid chromatography (HPLC), or newer rapid point-of-care testing (POCT) devices.

Progress so far 🔗

The results have been substantial. The Ministry of Health and Family Welfare announced that 6 crore (60 million) individuals had been screened against the target of 7 crore. Among those screened, 2.15 lakh individuals were diagnosed with SCD and 16.7 lakh carriers were identified. Additionally, 2.6 crore health cards have been distributed. States such as Madhya Pradesh, Gujarat, Rajasthan, Telangana, Karnataka, and Uttarakhand demonstrated particularly strong progress toward their screening targets.

Beyond screening, the mission incorporates a broader system of care – including genetic counselling, distribution of sickle cell genetic status cards (to be checked before marriage), free diagnostic testing, and treatment support such as hydroxyurea and folic acid. The emphasis on pre-marital counselling is particularly important given the genetic nature of the disease; if both partners carry the sickle cell trait, each pregnancy has a 25% chance of resulting in a child with full SCD.

Reaching those who were missed 🔗

Despite the availability of low-cost diagnostic tools and treatment options, SCD has remained a largely neglected disease in Indian healthcare policy and practice. Many of the communities most affected live in remote areas with poor road connectivity and few healthcare facilities. The NSCEM attempts to bridge this gap by deploying frontline health workers, mobile screening units, and community awareness programmes into tribal habitations – bringing testing to people rather than waiting for them to come to hospitals.

In Maharashtra alone, the programme targets 21 districts – all key tribal districts – with a screening goal of 63 lakh individuals between 2023 and 2025, and also provides free blood transfusions and monthly financial support of ₹1,000 to confirmed SCD patients under welfare schemes.

Challenges that remain 🔗

The scale of the mission is impressive, but it operates in a landscape of real constraints. Awareness remains low in many tribal communities, and there is still a shortage of trained counsellors who can communicate genetic risk in culturally sensitive ways. Research has also highlighted a significant gap in accurate, comprehensive data across India’s more than 705 indigenous groups, making it difficult to fully map the burden and allocate resources efficiently. More studies focused on under-represented tribal communities and non-tribal populations are needed to refine national estimates and strengthen evidence-based policy.

There is also the longer-term challenge of behaviour change – normalizing premarital genetic screening, reducing stigma around carrier status, and building trust between healthcare systems and communities that have historically been underserved. These are not challenges that a screening programme alone can solve. They require sustained investment in community health infrastructure, education, and culturally informed outreach.

What do you think? Given that the sickle cell gene has persisted in tribal communities partly because it offers protection against malaria – a disease these communities also continue to face – how should public health programmes balance the genetic and environmental dimensions of this challenge? And considering that most tribal patients in the Indian SCD Registry were unaware of their diagnosis before being enrolled, what does this tell us about the gaps between national health policy and its reach at the community level?

References

1. https://ashpublications.org/hematology/article/2024/1/1/526176/Sickle-cell-disease-in-India-the-journey-and-hope
2. https://www.undp.org/india/publications/enhancing-effectiveness-tribal-development-programmes-results-2024
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