Student needed blood to survive, it gave her HIV: How gaps in transfusion safety are affecting young thalassaemia patients

Rimi is not alone. Many people living with thalassaemia have contracted HIV infection because of gaps in blood transfusion. That is why patients and advocacy groups are rooting for the new National Blood Transfusion Bill, 2025 because it promises to create a safer, more accountable and unified national framework for screening donated blood before use. For patients who rely on lifelong, regular transfusions, this legislation addresses decades of concerns over inconsistent quality and fragmented regulation.

Similarly, Delhi-based 24-year-old tech consultant Ashima* was diagnosed with Hepatitis C virus — a liver infection that can lead to severe liver damage and even liver cancer in some when she was a teenager. She too had thalassaemia and had been receiving blood transfusion since the time she was six months old. “When I was around 12 years old, I had several infections in a three-month period. I had chicken pox, then I had jaundice followed by dengue. My health took a further hit because I was unable to take the chelation medicines (medicines thalassaemics need to take to remove the excess iron deposition from the blood transfusion, untreated the excess iron can damage organs).”

Her haemoglobin levels dropped quicker than usual. On testing, she realised that she had Hepatitis C. Her doctors suggested that she go to AIIMS for treatment. “I did not want to get on the medicine — I knew of other thalassaemics who had taken the medicine and got very sick or died. I was scared. Fortunately for me, the doctors informed me that I did not have a chronic infection and did not need the medicines immediately,” said Ashima.

Both Rimi and Ashima wish that they did not have to worry about these infections every time they receive a blood transfusion — something they have to keep doing for life. “While some blood banks — usually the premiere institutes or the big private hospitals — conduct the sophisticated NAAT (nucleic acid amplification testing) to screen for genetic material of HIV, Hepatitis B and C in donated blood, most do not. This is discriminatory for the patients. There is a need to mandate NAAT testing either under the Drugs and Cosmetics Act or a new bill,” said Anubha Taneja Mukherjee, member secretary, Thalassaemia Patients Advocacy Group.

Testing mandates and challenges

It is not that the blood banks in the country do not test for these conditions at all. In fact, it is mandatory by law for all blood banks to test for five key transfusion transmissible infections — HIV, hepatitis B, hepatitis C, syphilis and malaria. The challenge, however, is that most blood banks across the country use ELISA-tests and not NAAT tests for screening.

NAAT tests can help reduce the window period — the period when a person might have contracted the infection but the tests are unable to detect it — from nearly three weeks with the most advanced ELISA tests to around 9-11 days. The NAAT test, however, increases the cost of processing the blood. “The NAAT test costs around Rs 1,000 per blood bag, which is very expensive for thalassaemics who need to take blood frequently,” said an official on condition of anonymity.

At present, the law does not mandate NAAT testing. However, a 2023 guidance document by the Union Health Ministry said that while the NAAT test is not mandatory, it is recommended. “Universal NAAT testing in blood centres is recommended. It may be implemented in a phased manner.”

“While there is a push, it is only the big government hospitals that currently do NAAT testing. Most private hospitals, however, do it in their own blood banks,” the official added.

An additional burden of treatment

Rimi said even though HIV is a more dreaded disease, she does not have to worry too much about its treatment. “The government HIV programme is very good. I have to go to the medical college every two months and I get all my medicines for free. I also get all the required tests every six months for free. I do not have to think about it at all. Just outside the HIV treatment centre, however, is the thalassaemia centre. There, I see people lying outside on stretchers and getting blood. And, the blood is not NAAT tested,” she said.

She also needs to pay out of pocket for all the tests she needs before each transfusion and more tests annually to check whether she has contracted any other infection. She also has to pay for the test to ensure the blood is safe, the filter and vial, as well as the cost of day-care bed. “Most with thalassaemia can’t afford to go to the big private hospitals to get their transfusions. It will be very costly,” she said.

How to ensure safety of donor blood

Another way of making the blood safe is to ensure that it is voluntarily donated. Most hospitals collect blood in two ways — either from replacement donors for blood used by patients or voluntary donors through camps. “There is enough evidence to show that blood collected through voluntary donation is safer. This is because healthy people are the ones likely to come forward. The donors do not feel any pressure to hide any infection or health condition as opposed to donors who are worried about their relatives undergoing treatment,” said Taneja-Mukherjee.

The government has been pushing voluntary blood donations and India’s annual blood collection increased from 12.6 million units in 2023 to 14.6 million units in 2024. Voluntary blood donation accounted for 74.55% of total collections, according to the World Health Organization (WHO).

(*Names changed to protect privacy)