(Representative image) Dr R Laxman Bharathi of Nilgiri Adivasi Welfare Association estimates that 1% of badagas have sickle cell disease and 8% carry the trait
Researchers documented the first case of sickle-cell disease (SCD) in India in the Nilgiris in 1952. A 2026 paper says SCD in the Nilgiris and neighbouring Wayanad is generally milder than in several central Indian tribal populations. The district is home to about 35,000 tribal people from communities, according to the 2011 census. Announced in the Union Budget 2023–24, the National Sickle Cell Anaemia Elimination Mission set a target of screening seven crore people aged up to 40 across 17 states between 2023 and 2026, to eliminate the disease as a public health problem by 2047. It identified 30 tribal blocks in 14 Tamil Nadu districts as vulnerable to SCA. The state has reported around 500 cases, with about 70% in the Nilgiris.
Cases of SCD and sickle-cell trait have also been reported in the hill areas of Salem, Kallakurichi, Dharmapuri and Villupuram.
Known locally as the “bone-crushing disease”, SCD can cause severe episodes of pain, chronic anaemia, fatigue, infections and damage to vital organs. But the review, published in the Journal of Haematology and Allied Science by Kanjaksha Ghosh, former director of the National Institute of Immunohaematology at KEM Hospital, Mumbai, says much of the available research is hospital-based and may not represent the wider population. More than seven decades later, the blood disorder continues to affect the hills’ tribal communities, where consanguineous marriages can increase the likelihood of children inheriting the disease when both parents carry the sickle-cell gene. In its more severe forms, it can shorten life expectancy. Two recent studies have examined the disease’s severity and the potential of artificial intelligence to help identify it. These figures show how many cases screening programmes have identified. They do not indicate how many people remain undiagnosed or how the disease affects patients over time. India has the world’s second-highest burden of sickle-cell births. Digital cards recording whether individuals are unaffected, carriers or have the disease are among its provisions, but these have yet to be issued in the Nilgiris.
The medical college hospital follows 49 patients. A 2025 study by Maria Sheeba and K Sarojini, published in the International Journal of Electronics and Communication Engineering, developed an AI system that uses red blood cell images to classify sickle-cell anaemia among Nilgiris tribal communities. Using records from 300 patients obtained through Nawa, along with 14 disease-related attributes and red blood cell images, the system achieved 98% accuracy. Dr Bharathi says that since 2021, NAWA has screened about 11,000 people from the badaga community in the Kotagiri, Coonoor and Ooty blocks. “About 30 are getting treatment from Nawa. He estimates that 1% of badagas have the disease and 8% carry the trait. “Among the thoraiyar community, disease prevalence is 5% and trait prevalence is 10%. Among tribal communities, the corresponding figures are 1% to 2% and 10%. ”
Families need to understand how the disease is inherited and what it could mean for their children,” says Dr Mridhula of Ashwini. “We are screening new pockets in the district under the new public health programme, covering the indigenous community Badaga and other populations too,” says Somasundaram. But the researcher says that while it could help with early diagnosis in communities, identifying cases and measuring prevalence are different tasks. Some have opted to take treatment privately,” he says.
“Health education is not enough. Doctors and social workers are battling cultural issues such as consanguineous marriages and a lack of awareness of its hereditary nature. Mobile medical vans would visit remote settlements in the Nilgiris once a fortnight, providing outpatient care, maternal services, vaccinations and laboratory tests. The Tamil Nadu Health System Project also provided sickle-cell screening, treatment cards, genetic counselling, hydroxyurea and emergency transfusions. The project appointed tribal peer counsellors at several healthcare centres. “Patients identified with SCD are being followed up in association with Nawa and Ashwini. These organisations and Ooty Government Medical College Hospital provide treatment and medication. Technology could help improve diagnosis. An AI system cannot determine how many people have the disease unless screening reaches a representative population.
Earlier healthcare initiatives combined outreach with treatment and counselling. with some random screening in non-tribal areas, the district public health department is now extending the programme to other communities and locations While earlier screening focused on tribal settlements.