Newborn sickle cell screening still a challenge, says ICMR: Tribals battle fear, stigma and long journeys

In a tribal village in Chandrapur, Maharashtra, the parents of a child diagnosed with sickle cell disease have made a conscious decision to keep the condition a secret. Fearing ridicule and discrimination, they have shared the diagnosis only with close family members. “Only they are aware of my child’s sickle cell condition; we have not and will not disclose this information to anyone else. We might be ostracised,” a parent said.

Hundreds of kilometres away in Palghar district, a nurse working at a newborn screening programme faces a different challenge. She received no formal training and has had to navigate the complexities of screening and follow-up care with limited support. With frequent staff transfers disrupting continuity, she believes refresher training should be conducted at least twice a year to ensure healthcare workers remain equipped to identify and manage cases.

These two experiences — one rooted in stigma within the community and the other in gaps within the health system — capture the challenges confronting newborn sickle cell screening programmes in India’s tribal regions. A multi-centric study published in The Lancet Regional Health – Southeast Asia in 2025 found that social discrimination, poor awareness, long travel distances to health facilities and weaknesses in follow-up care continue to hamper efforts to identify affected children early, potentially delaying life-saving treatment and support.

The study was conducted by a multidisciplinary team of scientists and researchers from the Indian Council of Medical Research (ICMR), New Delhi, along with Mumbai’s ICMR-National Institute for Research on Blood and Immune Disorders (NIRBID). Begun in 2019, the study covered seven sickle-cell-prevalent tribal regions across six Indian states. Scientists said overcoming screening barriers is crucial for the implementation of the National Sickle Cell Anaemia Elimination Mission, which seeks to screen vulnerable populations and eliminate the disease by 2047.

What is Sickle Cell Disease?

Sickle Cell Disease (SCD) is an inherited blood disorder in which red blood cells become abnormally shaped like a sickle or crescent. These cells can block blood vessels, causing severe pain, anaemia, infections, organ damage and, in severe cases, early death. The disease is particularly prevalent among tribal populations in India and is most commonly reported from states such as Maharashtra, Madhya Pradesh, Gujarat, Odisha and Kerala.

India carries one of the world’s largest sickle cell disease burdens, accounting for an estimated 16 per cent of global cases, according to the study. Data from the National Sickle Cell Disease Control Programme dashboard shows that more than 7.57 crore people had been screened across the country, leading to the identification of over 2.66 lakh individuals with sickle cell disease and more than 21.66 lakh carriers of the sickle cell trait.

Why screening matters

Nithin Rajamani, social scientist at ICMR-NIRBID (National Institute for Research on Blood and Immune Disorders), Mumbai, one of the authors of the paper, said, “Newborn screening allows babies with the condition to be identified soon after birth, often before serious symptoms develop, enabling earlier treatment and follow-up. Early diagnosis can help prevent complications and improve long-term health outcomes.”

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Children diagnosed through newborn screening can be enrolled in regular follow-up programmes, receive vaccinations and preventive treatments, and have their families counselled on recognising warning signs and managing complications. Early intervention can significantly reduce illness and improve survival and quality of life.

In countries where newborn screening has been widely implemented, early diagnosis has been associated with substantial reductions in childhood deaths and severe complications from sickle cell disease. In India, where the disease burden is particularly high among tribal populations, early screening is considered a critical component of the National Sickle Cell Anaemia Elimination Mission’s goal of reducing the impact of the disease by 2047.

What’s preventing screening?

Healthcare providers highlighted logistical challenges, including shortages of trained personnel, delayed laboratory results and difficulties maintaining continuity of care after diagnosis.

Among the most commonly reported barriers were social stigma surrounding the disease, misconceptions about inheritance, limited awareness among families, transportation difficulties, inadequate health infrastructure and challenges in collecting and transporting blood samples for testing. In several locations, local beliefs and cultural practices also influenced healthcare-seeking behaviour.

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Researchers recommended stronger integration with the health system, greater public awareness, better training and improved access to screening facilities.

One bright spot

At the same time, the study identified several factors that improved programme performance. “Community health workers such as ASHAs, ANMs and Anganwadi workers played a crucial role in mobilising families, spreading awareness and ensuring follow-up,” said Rajamani. Regular counselling, community engagement and trained healthcare staff also emerged as important facilitators.

“As World Sickle Cell Day is observed every year on June 19, these findings show that newborn screening cannot succeed through laboratory testing alone. Building trust within communities, strengthening counselling services and integrating screening into routine maternal and child health services are equally important,” Rajamani said.