Over 73.1 million screened for sickle cell disease in 3 years: Tribal ministry

The initiative aims to take early diagnosis, genetic counselling, and specialised treatment to remote tribal pockets that carry a disproportionate burden of the genetic blood disorder.

The Ministry of Tribal Affairs has screened more than 73.1 million people over the past three years for sickle cell disease, an inherited blood disorder that heavily affects indigenous communities in the country’s central and southern regions.

Sickle cell disease can cause severe anaemia, recurrent painful episodes, organ damage, stroke and other potentially life-threatening complications. (FILE)

The initiative aims to take early diagnosis, genetic counselling, and specialised treatment to remote tribal pockets that carry a disproportionate burden of the genetic blood disorder. Sickle cell disease can cause severe anaemia, recurrent painful episodes, organ damage, stroke and other potentially life-threatening complications.

According to data compiled by the tribal affairs ministry, 7.02 million people were found to be SCD-negative while 2.06 million were identified with sickle cell trait and 251,191 with sickle cell disease. “Confirmation was in process in another 5,31,177 cases,” an official, who spoke on condition of anonymity, said.

Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission in July 2023 with a two-pronged screening strategy.

Apart from universal newborn screening for early detection and medical intervention, the campaign focuses on adolescents and young adults.

An official said screening adolescents and young adults, meanwhile, allows those carrying the sickle cell trait to understand their genetic status and make informed reproductive decisions.

The ministry also provides financial support for 17 Sickle Cell Disease Centres of Competence across 15 states, with a total sanctioned amount of ₹52.50 crore.

These centres are intended to function as regional hubs for comprehensive clinical care, genetic counselling, advanced diagnostic confirmation, research and training of frontline healthcare workers. Five of the 17 centres have already been inaugurated.

The Centres are being established at major medical institutions across states, including Andhra Pradesh, Assam, Chhattisgarh, Gujarat, Jharkhand, Karnataka, Kerala, Maharashtra, Odisha, Rajasthan, Tamil Nadu, Telangana, Uttarakhand, West Bengal and Madhya Pradesh.

The ministry is also strengthening the diagnostic infrastructure required for large-scale screening. The platforms include complete blood counts, peripheral blood smears, rapid sickling tests, high-performance liquid chromatography, electrophoresis, and molecular PCR testing for definitive genetic analysis.

“On the treatment front, the ministry’s approach includes hydroxyurea, pain-management protocols, infection-prevention measures and blood transfusions for selected high-risk patients. Bone marrow transplantation remains a potential curative option for eligible patients, while gene-based therapies are being explored as a longer-term intervention,” said another official.

The ministry is also working with the CSIR-Institute of Genomics and Integrative Biology (CSIR-IGIB) and plans to partially fund research related to gene therapy for sickle cell disease.