RED ALERT

In India's quest to control thalassaemia, the most crucial aspect is the availability of safe blood v

- Mohit Sharma

Nishtha Madan was diagnosed with thalassaemia when she was seven months old. "I wanted to overcome the limitations attached with the disease," says Madan, now 35, and a special educator and development psychologist with the department of education, Delhi. "The credit of keeping me healthy goes to my parents. When I became an adult, I started trying to make myself more aware of the disease."

Thalassaemia is a genetic blood disorder characterised by the reduced production of haemoglobin, the protein in red blood cells that carries oxygen throughout the body. It results in anaemia and can lead to severe health complications. Official figures say that there are nearly one lakh thalassaemia patients in India, with 10,000-15,000 new cases reported annually.

The country has one of the highest prevalence rates in the world, with regions such as Punjab, Gujarat and parts of the northeast showing particularly high carrier rates. "The situation is pretty bad in peripheral areas where awareness is low," says Dr Piyasi Basu Thal, a thalassaemia-major patient herself. Thalassaemia-major, the most severe form of the disorder, requires regular (two-three weeks) blood transfusions to manage symptoms and prevent complications. "It is like we are sitting on a volcano all the time," says Namitha Kumar, 46, who was diagnosed when she was four.

While the psychological burden of thalassaemia is telling, the economic cost is also significant. "Although thalassaemia is listed as a disability, there is no benefit for the patients. The government needs to bring reservation in education and employment for thalassaemia patients," demands Madan.

Kumar, who has a PhD from the National Institute of Advanced Studies in Bengaluru, agrees. “Despite paying taxes, I get no financial support from the government,” says the academic who works with Opford, a platform for rare diseases. “I can afford health insurance but there are several others who cannot.”