For thousands of young Indians living with thalassaemia, the very treatment that keeps them alive—regular blood transfusions—has become a potential source of life-altering infections like HIV and Hepatitis C. As the National Blood Transfusion Bill, 2025 is introduced in Parliament, patients are sharing harrowing stories of how gaps in mandatory screening have irrevocably changed their lives, underscoring the urgent need for a safer, unified national framework.
Lifesaving Treatment Turns into a Source of Infection
Rimi*, a 23-year-old student from Kolkata, was diagnosed with thalassaemia at birth. The inherited blood disorder requires her to receive two blood transfusions every month to maintain stable haemoglobin levels. At age 13, during a prolonged hospital stay for dengue, doctors discovered she had contracted the Human Immunodeficiency Virus (HIV). The likely source: contaminated donor blood.
"When I stepped out of the hospital, doctors told me that a normal cough could become severe pneumonia," Rimi recounted. Her life was instantly burdened with extreme precautions, including wearing double masks and gloves to school. A subsequent COVID-19 infection during the pandemic worsened her health, requiring hospitalization and eight units of blood.
Her story is tragically common. Ashima*, a 24-year-old tech consultant from Delhi, also born with thalassaemia, contracted Hepatitis C virus (HCV) as a teenager. The liver infection, which can lead to severe damage and cancer, was likely transmitted during one of her lifelong transfusions. A series of illnesses had weakened her, and tests revealed the HCV infection, adding another layer of fear and complexity to her management of thalassaemia.
The Critical Gap: ELISA vs. NAAT Testing
While Indian law mandates that all blood banks test for five key infections—HIV, Hepatitis B, Hepatitis C, syphilis, and malaria—the type of test used is the critical flaw. Most blood banks rely on ELISA tests, which have a longer "window period." This is the time between infection and when a test can detect it, which can be up to three weeks.
The more advanced Nucleic Acid Amplification Test (NAAT) can reduce this window period to just 9-11 days by detecting the virus's genetic material directly. This significantly lowers the risk of transmitting undetected infections. However, NAAT testing is not legally mandatory and adds about Rs 1,000 to the cost of processing each blood bag—a prohibitive expense for patients requiring frequent transfusions.
"While some blood banks—usually premier institutes or big private hospitals—conduct NAAT, most do not. This is discriminatory," said Anubha Taneja Mukherjee, Member Secretary of the Thalassaemia Patients Advocacy Group. She advocates for mandating NAAT under the Drugs and Cosmetics Act or the new bill.
A 2023 Union Health Ministry guidance document recommended universal NAAT implementation in a phased manner, but progress has been slow and inconsistent.
The Dual Burden: Managing Thalassaemia and Blood-Borne Infections
For patients like Rimi, the financial and emotional burden is twofold. While India's national HIV program provides her with free medication and tests, the associated costs of her thalassaemia care are steep. She must pay out-of-pocket for pre-transfusion tests, annual screenings for other infections, blood filters, vials, and daycare bed charges.
"Most with thalassaemia can’t afford to go to big private hospitals for NAAT-tested blood. It will be very costly," she explained, highlighting a stark healthcare inequality.
Patient advocacy groups emphasize that alongside better testing, promoting voluntary blood donation is key to safety. Evidence shows blood from voluntary donors is safer, as donors are less pressured to hide health conditions compared to replacement donors giving blood for a relative. India has made progress, with voluntary donations accounting for 74.55% of the 14.6 million units collected in 2024, according to WHO data.
The introduction of the National Blood Transfusion Bill, 2025, represents a pivotal moment. For a community reliant on lifelong transfusions, it promises accountability and a standardized safety protocol that could prevent future generations from enduring the dual diagnosis of thalassaemia and a preventable blood-borne infection.
(*Names have been changed to protect privacy)
