HQ Team
May 8, 2025: As the world observes World Thalassaemia Day on May 8, India faces a harsh reality—it is often called the “thalassaemia capital of the world”, with over 100,000 children suffering from thalassaemia major and 10,000–15,000 new cases reported each year. The country’s struggle with this genetic blood disorder highlights critical gaps in awareness, screening, and treatment access, leaving thousands dependent on lifelong blood transfusions and battling severe complications.
Thalassaemia is a hereditary blood disorder that reduces haemoglobin production, leading to severe anaemia and requiring regular blood transfusions. Globally, around 4.5 out of every 10,000 live births are affected by thalassaemia, with Southeast Asia, the Mediterranean, and the Middle East being high-risk regions. However, India bears the highest burden, with an estimated 42 million carriers—people with thalassaemia minor who can pass the defective gene to their children.
What is thalassaemia?
Thalassaemia is caused by mutations in the genes responsible for haemoglobin production. There are two main types:
- Thalassaemia Minor (Trait): Carriers have mild or no symptoms but can pass the gene to their children.
- Thalassaemia Major: A severe form where children inherit faulty genes from both parents, leading to life-threatening anaemia, requiring monthly blood transfusions and iron-chelation therapy to prevent organ damage.
Without proper treatment, patients face growth delays, bone deformities, heart failure, and liver damage. Recent studies also indicate neurological complications, including cognitive decline, tremors, and chronic pain, due to prolonged oxygen deficiency and iron overload.
Why is India the thalassaemia capital?
Several factors contribute to India’s high prevalence: Lack of Genetic Screening sees only 17% of patients find a matching stem cell donor for a bone marrow transplant (BMT), the only potential cure. In contrast, countries like Germany have a 70-80% match rate due to robust donor registries, according to Dr. Vibhor Sharma, Sr Consultant & Head – BMT & Medical Oncology (Unit II), Asian Hospital.
India has only 1.8 lakh registered stem cell donors, leaving most patients without transplant options. Treatment costs can exceed ₹3–5 lakh annually, pushing families into poverty, according to Dr Liza Bulsara, Consultant – Hemato Oncology & Bone Marrow Transplant Specialist, Jupiter Hospital. Many patients also face social stigma and lack systemic support.
In states like Punjab, Gujarat, and the Northeast, consanguineous marriages (between cousins) increase the risk of children inheriting thalassaemia major. “One of the major contributors to India’s thalassaemia crisis is a lack of awareness about genetic screening and counselling,” according to Dr. Roshan Dikshit, Senior Consultant, Haematology & Bone Marrow Transplant, Aakash Healthcare.
The way forward
Experts urge mandatory premarital screening especially in high-risk communities. Expanding donor registries, as more stem cell donors can save lives and genetic counselling is also recommended. Government Intervention through subsidized treatment and better healthcare infrastructure can also reduce the burden. India must confront its thalassaemia crisis with urgent action, awareness, and early access to screening, says Dr Vibhor Sharma, Sr. Consultant, Asian Hospital.
