Why thalassemia continues to rise in India and the impelling need to tackle it

The growing number of thalassemia cases in India is not the result of a new health threat,it is the outcome of long-standing gaps in prevention. Thalassemia is inherited, predictable, and largely preventable, yet every year thousands of children are born with the severe form of the disorder.

One of the primary reasons is that most carriers do not know they carry the gene. A person with thalassemia trait is healthy and shows no symptoms. Without routine testing, there is no reason for individuals to suspect anything until a child is diagnosedby which point prevention is no longer possible.

Marriage practices in India also contribute. Many communities arrange marriages without discussing genetic health, and in some regions, marriages within extended families are common. This increases the chance that both partners carry the same trait. Health considerations are rarely factored into these social decisions.

India is at a defining moment in its public health response to thalassemia. With nearly 45 million carriers and around 15,000 children born with thalassemia major every year, the condition is not just a medical challenge. It affects entire families, places lifelong demands on children, and adds significant pressure on an already stretched healthcare system. This burden can be reduced through timely awareness, early diagnosis, and strong preventive screening programmes, which have the potential to save thousands of lives,” said Dr. Chandrakant Agarwal, President, Thalassemia and Sickle Cell Society.

Another major issue is the lack of structured screening before marriage or pregnancy. While testing facilities exist in cities and medical colleges, community-level screening is inconsistent. Many couples encounter testing only during pregnancy, often late in the first trimester, when options are limited.

Even when screening occurs, counselling is frequently inadequate. Carrier status is sometimes communicated without proper explanation, causing confusion or fear. Families may not understand the difference between being a carrier and having the disease. In some cases, this misunderstanding creates stigma, particularly for women, discouraging openness and follow-up.

Healthcare access varies sharply across regions. Large portions of the population rely on government hospitals that are overburdened and understaffed. Preventive genetic counselling receives far less attention than acute care. As a result, thalassemia prevention remains peripheral rather than central to public health planning.

Medical care for thalassemia has improved significantly over the past two decades. Better blood availability, safer transfusions, and improved chelation therapy (treatment to remove excess iron) have extended life expectancy. While this is positive, it also means the total number of patients living with thalassemia continues to rise unless new births are prevented.

Social discomfort around genetic disorders further complicates the issue. Many families avoid disclosing carrier status due to fear of social consequences. Marriage prospects, particularly for girls, are often cited as a concern.

This silence allows the condition to pass unnoticed from one generation to the next.

Ultimately, thalassemia continues to grow in India not because prevention is impossible, but because it has never been implemented at scale. Awareness remains uneven, screening is inconsistent, and counselling is often insufficient. Thalassemia in India is not a medical mystery, it is a policy and awareness challenge that must be addressed if the cycle is to be broken.