RGCIRC (Rajiv Gandhi Cancer Institute & Research Centre) organised an awareness and screening initiative to address the rising burden of thalassemia in the National Capital Region.
Held under the theme “From Transfusion to Transplant,” the event highlighted the need for a critical shift in thalassemia care – from lifelong dependence on blood transfusions to curative treatment through bone marrow transplant and harnessing the avenues available for early diagnosis. The initiative comes at a time when Delhi is dubbed as the “thalassemia capital” of the world, underscoring the need for greater public awareness and systematic screening.
Pediatric Hematology experts at RGCIRC emphasised that, despite being a preventable condition, thalassemia continues to place a significant emotional, clinical, and financial burden on families due to delayed diagnosis and lack of awareness.
Addressing the gathering, Dr. Gauri Kapoor, Director, Pediatric Hematology, Oncology & BMT, RGCIRC, highlighted the scale of the challenge and the need for a proactive approach.
“Delhi is increasingly being recognised as one of the global hubs of thalassemia due to the high number of cases we see. This makes awareness and prevention not just important, but urgent. The disease is entirely preventable with the right screening measures, yet many families remain unaware until it is too late,” she said.
A key focus area of the event was strengthening awareness around carrier detection through High-Performance Liquid Chromatography (HPLC) testing, a simple yet effective diagnostic tool. According to experts, when both partners are carriers of thalassemia minor, there is a 25% chance that their child will have thalassemia major. Such cases often lead to lifelong dependence on regular blood transfusions, iron chelation therapy, and ongoing medical care, which significantly impact quality of life.
By contrast, timely screening, particularly at the pre-marital or early planning stage, can play a decisive role in preventing the condition altogether. To drive this message at a community level, the Department of Pediatric Hematology, Oncology & BMT, RGCIRC conducted free HPLC testing during the event, enabling individuals to understand their carrier status and make informed decisions.
The discussions also highlighted how the treatment landscape is evolving. While transfusion support remains essential for many patients, bone marrow transplantation has emerged as a potentially curative option, especially when performed early and with suitable donor matching. Access and affordability, however, continue to be key barriers for many families.
“The shift from transfusion to transplant represents a fundamental change in how we approach thalassemia care. It is not just about managing symptoms, but about enabling a cure. At RGCIRC, our effort is to ensure that every eligible child has access to this life-saving treatment, regardless of financial constraints,” Dr. Kapoor added.
The event included expert-led sessions examining the disease burden, challenges in early diagnosis, and the role of preventive strategies in reducing incidence rates. A panel of experts, including Dr Sandeep Jain, Associate Director, Pediatric Hematology Oncology and BMT, and Dr Payal Malhotra, Consultant I – Pediatric Hematology Oncology and BMT, centred on the theme “From Transfusion to Transplant” and explored clinical advancements, patient eligibility, and long-term outcomes of transplant procedures. The initiative also created space for meaningful engagement between doctors, patients, and families, allowing for the exchange of experiences and practical guidance.
Adding a human dimension to the event, a cultural programme by children served as a reminder of the resilience of young patients and the importance of timely intervention in transforming lives. Through this initiative, RGCIRC reiterated that addressing thalassemia requires a multipronged approach – combining awareness, accessible screening, and timely medical intervention. The institution called upon individuals, particularly those planning marriage or parenthood, to prioritise carrier testing and contribute to reducing the incidence of the disease.
