Thalassemia Prevention: Experts Stress Need for Thalassemia Screening on World Thalassemia Day

New Delhi: On World Thalassemia Day, leading doctors, public health advocates, and affected families across India are highlighting a clear and urgent message. Thalassemia major, one of the most common inherited blood disorders in the country, is entirely preventable.

Yet each year, thousands of children are born into lives marked by painful transfusions and severe financial burden. While treatment can cost between ₹4 to 5 lakh per child annually, a simple screening test priced at just ₹150 can help prevent the disorder if done early.

India continues to bear one of the highest Thalassemia burdens globally. With 863 births occurring daily in Delhi and a 95.6 percent rate of institutional deliveries, the city is uniquely positioned to adopt a prevention-first approach.

Experts recommend a two-fold strategy. All pregnant women should be screened during their first trimester. Additionally, individuals between the ages of 18 and 40 should undergo voluntary testing, especially in colleges, workplaces, and during pre-marital counselling.

These steps can help prevent carrier marriages and reduce the number of children born with Thalassemia major.

Dr Anupam Sachdeva, Co-Director of the Institute of Child Health at Sir Ganga Ram Hospital, emphasized the urgent need for preventive screening to eliminate Thalassemia major in India.

He said,"Thalassemia major is an entirely preventable tragedy. For just ₹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 hemoglobin. Prevention is not only possible, it is necessary. 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, Sir Ganga Ram Hospital, Apollo Hospital, Safdarjung Hospital, Lal PathLabs, Rajiv Gandhi Cancer Institute, and Holy Family Hospital. Each centre can screen up to 180 individuals per day. This is not a challenge of resources but of prioritization."

Mrs Shobha Tuli, Secretary of Thalassemics India, highlighted the economic burden on families and called for stronger policy-level support. "Ayushman Bharat, under the National Health Authority, currently supports 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. If health for all is the goal, Thalassemia must receive not just symbolic inclusion but real priority. It deserves structural support and national attention."

She further urged the government to take lessons from international best practices: "Countries like Iran and several others have made Thalassemia screening mandatory before marriage and during early pregnancy. 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. This is no longer a matter of choice but of responsibility."

Mrs Tuli also pointed out the limits of curative options and the need to prioritize prevention: "While curative treatments like bone marrow transplants exist, they are often financially out of reach for most families. The Thalassemia Bal Sewa Yojana or TBSY, a CSR initiative by Coal India under the Ministry of Health and Family Welfare, offers ₹10 lakh per child. The program has already enabled over 600 children to undergo curative transplant procedures. But the ultimate goal must be prevention so that fewer children ever need such intervention in the first place."

Dr VK Khanna, In-Charge of the Thalassemia Unit at Sir Ganga Ram Hospital, shared the success of their hospital’s screening model.

"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," he said.

A parent of a child with Thalassemia major spoke about the ongoing emotional and financial toll their family faces: "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."

Thalassemics India is urging hospitals, diagnostic labs, educational institutions, and civic bodies across Delhi to actively support the prevention initiative. With coordinated efforts and timely screening, Delhi has the potential to become India’s first Thalassemia-free city and set a global example in disease prevention.