As India Battles Sickle Cell Disease, Odisha’s Screening Model Is Drawing Attention

Sickle cell disease and thalassemia have remained a silent public health challenge in India for decades, particularly across tribal and remote regions where awareness and diagnosis continue to lag. Both are inherited blood disorders that affect haemoglobin and can lead to lifelong complications if left undetected. While sickle cell disease causes abnormal red blood cells that block blood flow and trigger severe pain, thalassemia often leaves patients dependent on frequent blood transfusions for survival.

India carries a significant share of the global burden. Health estimates suggest nearly 14 percent of the world’s sickle cell cases are in India, while close to 10,000 children are born every year with thalassemia major. Despite the scale, access to timely diagnosis remains inconsistent, especially outside urban centres.

In 2023, the Government of India launched the National Sickle Cell Anaemia Elimination Mission, aiming to eliminate the disease as a public health concern by 2047. But healthcare experts say the real challenge lies not in policy creation, but in execution on the ground.

Among the states being closely watched is Odisha, which has steadily built a large-scale screening and awareness model focused on early detection. Unlike traditional healthcare approaches that depend heavily on hospitals, the state has integrated screening programmes into schools, antenatal care systems, and outreach initiatives in tribal areas.

The Government of Odisha has undertaken comprehensive initiatives for the management of Sickle Cell Disease and Thalassemia through large-scale screening, early diagnosis, counselling, and long-term treatment support, particularly in tribal and high-prevalence districts. The state is facilitating access to essential medicines, regular clinical monitoring, pain management, nutritional support, and blood transfusion services for affected patients, while also strengthening awareness and community-based healthcare programs.

A key part of Odisha’s approach is the use of DBS-HPLC technology — Dried Blood Spot-based High-Performance Liquid Chromatography. The method allows health workers to collect a small blood sample on filter paper, which can then be transported and tested without requiring complex cold-chain infrastructure. The technology helps identify sickle cell disease, thalassemia, and carrier conditions with greater accuracy while reducing delays caused by repeated testing.

NHM Odisha has now finalized the launch of Phase II of the screening program with the objective of achieving maximum possible screening across the state. Drawing upon the experience and key learnings from the earlier phases, the program has systematically addressed major operational, logistical, and implementation challenges to make the initiative more efficient and scalable. With a strong focus on strengthening follow-up mechanisms and continuity of care, the initiative aims to evolve into one of India’s most comprehensive and replicable public health screening and disease management models for other states to learn from and adopt. Odisha has already completed more than 66 lakh screenings under the programme across 21 districts, making it one of the largest state-led efforts. Among these, 6 Lakh (SCD) individuals have been identified as carriers of Sickle Cell, and 10,000 carried other haemoglobin variants.

“A major reason Odisha’s screening model succeeded was the adoption of DBS-HPLC technology, which simplified large-scale testing in remote regions. Unlike traditional methods that depend on complex blood collection and transport systems, DBS-HPLC uses dried blood spot samples that remain stable during transit, making accurate screening faster, scalable, and far more accessible,” said  Dr Brunda D (IAS), Mission Director, National Health Mission, Department of (H&FW), Government of Odisha.

“Technology like DBS-HPLC has made early detection much easier and more accessible, but awareness remains equally important. People should proactively opt for screening before marriage or pregnancy because identifying carrier status early can significantly reduce the future burden of sickle cell disease and thalassemia within families and communities,” said Dr Brunda D (IAS), Mission Director, National Health Mission, Department of (H&FW), Government of Odisha

Public health experts believe the state’s experience could offer important lessons for other high-burden regions attempting to strengthen early detection and long-term disease management.