Mumbai, May 7: The Thalassemia and Sickle Cell Society of India (TSCSI) has appealed to the state government to make thalassemia screening mandatory for all young adults, saying the move could significantly reduce the burden of the genetic blood disorder in the country.
India currently has an estimated 2 lakh thalassemia patients, while nearly 10,000 to 15,000 children are born with thalassemia major every year, making it one of the countries with the highest disease burden globally.
“Thalassemia is not just a treatment challenge, it is a preventable public health issue,” said Dr Vinky Rughwani, leading paediatrician, president of the society and chief of the Maharashtra Medical Council.
He stressed that mandatory screening before marriage and during pregnancy can help identify carriers early and enable informed reproductive choices.
According to Dr Rughwani, there is no official registry of thalassemia patients in Maharashtra. However, he estimated that around 20,000 to 25,000 children in the state are currently living with the disorder.
Experts stress importance of early detection
Thalassemia is an inherited blood disorder that requires lifelong management, including regular blood transfusions and medication. Dr Rughwani explained that the disorder manifests only when a child inherits the affected gene from both parents, while carriers with a single gene often remain healthy and unaware of their status. He added that if two carriers marry, there is a high risk of the disorder being passed on to their children.
Explaining how healthy parents can still have a child with thalassaemia, Dr Kriti Hegde, Paediatric Oncology, Haemato-Oncology and BMT, Narayana Health SRCC Children’s Hospital, Mumbai, said, “This is a question that comes up frequently and is usually accompanied by surprise because nothing seemed wrong beforehand. The answer lies in the way some genetic conditions are passed on to children.”
She explained that thalassaemia affects haemoglobin, the protein in red blood cells that carries oxygen, and can be silently carried by both parents without any visible symptoms. “This is where carrier status becomes important — it is something that is present, but not visible,” she added.
Call for compulsory screening measures
Dr Rughwani informed that he has written to the Union Health Ministry and the President of India seeking stronger preventive measures, including compulsory screening for young adults. According to him, identifying carriers can help reduce the number of children born with thalassemia and ease the burden on the healthcare system.
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His appeal coincides with this year’s World Thalassemia Day theme, “Hidden No More: Finding the Undiagnosed. Supporting the Unseen.” The Centre has also included thalassemia elimination under the National Sickle Cell Elimination Mission launched in 2023, though screening numbers remain limited.
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