An advocate herself, she demands a 'One Nation, One Blood' law from the government. In an interview, she talks about the challenges of the disease and the way forward. Excerpts:
Do you think there is a lack of awareness about thalassaemia?
Yes, and I think the reason is that there is no national-level control or prevention programme like for polio or tuberculosis or even sickle cell anaemia, which is also a disability under the Rights of Persons with Disabilities Act 2016, just like thalassaemia. The situation is very strange.
Do you think the medical fraternity is doing justice to thalassaemia patients?
I would not doubt the intention of the medical fraternity at all because the very fact that I am sitting here in front of you means that I have been taken care of. The medical fraternity is trying to do their best. We have devoted doctors. But they can only do as much as the infrastructure allows them to.
What is the government's response so far and what are your expectations?
Their are certain policies for thalassaemia but their implementation needs to be better. I would like to talk about a blood law, which is absolutely necessary. When I talk about thalassaemia, our most primary requirement is that of blood.
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