As the world marks World Thalassaemia Day on May 8, India grapples with an escalating public health concern. Often referred to as the “thalassaemia capital” of the world, the country is home to over 100,000 children living with thalassaemia major, with 10,000–15,000 new cases reported each year.
Understanding Thalassaemia: A Genetic Disorder with Lifelong Impact
Thalassaemia is an inherited blood disorder that leads to reduced haemoglobin levels. Children born with thalassaemia major suffer from severe anaemia and depend on lifelong blood transfusions. The disease causes a range of complications such as organ damage, growth delays, and more recently reported neurological issues including headaches, muscle pain, cognitive decline, and tremors. These symptoms often arise due to chronic oxygen deficiency and iron overload from repeated transfusions.
Carriers Unaware: The Silent Spread of Thalassaemia Minor
According to Dr. Roshan Dikshit, Senior Consultant, Haematology & Bone Marrow Transplant at Aakash Healthcare, thalassaemia is passed down when both parents carry the faulty gene. While carriers (thalassaemia minor) lead normal lives, their children are at high risk of developing thalassaemia major if both parents are carriers. Unfortunately, awareness around carrier status remains dangerously low, especially in high-risk regions like Punjab, Gujarat, and the Northeast.
Genetic Screening and Counselling Still Lacking
Despite the scale of the problem, India lacks a national thalassaemia registry or mandatory premarital screening, according to Dr. Aakaar Kapoor, CEO and Lead Medical Advisor at City XRay and Scan Clinic. This gap leaves millions of potential carriers unaware of their genetic status. Alarmingly, an estimated 42 million Indians are carriers, yet few undergo screening due to limited access and cultural barriers. Moreover, consanguineous marriages, especially between first cousins, further amplify the risk in certain communities.
Donor Shortage Hampers Curative Treatment Options
While bone marrow transplantation (BMT) offers a potential cure, access remains limited. As Dr. Vibhor Sharma, Sr Consultant & Head – BMT & Medical Oncology at Asian Hospital, explains, only 17% of blood disorder patients in India find suitable stem cell donors. In contrast, countries like Germany boast match rates of 70–80%, thanks to strong national registries. India, however, has just 1.8 lakh registered donors, making curative options inaccessible for most.
The Hidden Burden: Financial Strain and Social Stigma
Beyond the medical challenges, families face a heavy financial and emotional burden. Continuous transfusions, regular hospital visits, and the cost of iron chelation therapy impose severe economic pressure. According to Dr. Liza Bulsara, Consultant in Hemato Oncology & BMT at Jupiter Hospital, patients also endure social stigma and lack systemic support, making their struggle even harder.
A Call for Action: Awareness, Policy, and Infrastructure
As per the press release, experts agree that urgent, coordinated efforts are essential to curb the growing thalassaemia crisis. They call for policy-level interventions, expanded stem cell donor registries, and mandatory genetic counselling and screening, particularly in high-prevalence areas. Dr. Vibhor Sharma stresses that stem cell donation remains underutilised due to low awareness, cultural resistance, and weak infrastructure.
Conclusion: Time to Act on India’s Thalassaemia Challenge
This World Thalassaemia Day, India must reflect on the scale of the crisis and recognise that awareness, access, and action must go hand in hand. Without systemic changes, the disorder will continue to affect thousands of young lives each year.