Thalassemia screening should be made mandatory during antenatal care: Experts

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On the eve of the World Thalassemia Day, doctors and healthcare advocates have urged that first-trimester Thalassemia screening should be made a mandatory part of antenatal care.

They have come together to emphasise an urgent but simple message that Thalassemia major, one of India's most widespread inherited blood disorders, is preventable.

While treatment costs can go up to Rs 4 to 5 lakh per child annually, a screening test costing just Rs 150 can prevent the disorder altogether if done in time, experts said.

India continues to face one of the highest Thalassemia burdens globally.

With 863 births occurring daily in Delhi and a 95.6 per cent institutional delivery rate, the city is uniquely positioned to lead a prevention-first model, said Dr Anupam Sachdeva, Co-Director of the Institute of Child Health at Sir Ganga Ram Hospital.

The strategy focuses on two critical points.

"All pregnant women should be screened during their first trimester. At the same time, individuals between 18 and 40 years of age should undergo voluntary testing, especially in colleges, workplaces, and during pre-marital counselling. These simple steps can prevent carrier marriages and future Thalassemia major births," Dr Sachdeva said.

"For just Rs 150, we can stop a child from a life of transfusions, hospital visits, and emotional trauma. The science is clear, the solution is simple. We must make Thalassemia screening a standard part of antenatal care across India just like we do for blood sugar or haemoglobin," he said.

Delhi's healthcare system is well-positioned to support this effort. The city has more than 150 diagnostic labs equipped with HPLC and D10 machines, including top institutions like AIIMS, he said and added each centre can screen up to 180 individuals per day.

"This is not a challenge of resources but of prioritisation," he said.

Shobha Tuli, secretary, Thalassemics India, stated that Ayushman Bharat, under the National Health Authority, provides support to Thalassemia patients who fall below the poverty line.

But, the reality is that the cost of managing Thalassemia is a burden even for middle-income families, Tuli pointed out.

"If health for all is the goal, Thalassemia must receive not just symbolic inclusion but real priority. It deserves structural support and national attention," Tuli said.

Countries like Iran and several others have made Thalassemia screening mandatory before marriage and during early pregnancy, she said.

These preventive measures have led to dramatic reductions in new Thalassemia major births.

"India should also follow this proven path. We strongly urge the Union Ministry of Health to introduce a national regulatory mandate for Thalassemia testing in the first trimester of pregnancy and across the reproductive age group," Tuli said.

Dr VK Khanna, In-Charge of the Thalassemia Unit at Sir Ganga Ram Hospital, said, "Our own hospital has screened over 50,000 pregnancies in the last 25 years, and we have had zero births of Thalassemia major from that pool. The model works. The infrastructure is ready. What we need now is political and regulatory momentum to replicate this across the city and eventually the country."

A parent of a Thalassemia major child added anonymously, "We have been managing this condition for eight years now. Every few weeks, our child needs a transfusion, and the cost keeps mounting. Even with both of us working, it is emotionally and financially exhausting. We are not below the poverty line, but we still need support. We hope the government recognises our struggle and expands access for families like ours."

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