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.
Denne historien er fra October 06, 2024-utgaven av THE WEEK India.
Start din 7-dagers gratis prøveperiode på Magzter GOLD for å få tilgang til tusenvis av utvalgte premiumhistorier og 9000+ magasiner og aviser.
Allerede abonnent ? Logg på
Denne historien er fra October 06, 2024-utgaven av THE WEEK India.
Start din 7-dagers gratis prøveperiode på Magzter GOLD for å få tilgang til tusenvis av utvalgte premiumhistorier og 9000+ magasiner og aviser.
Allerede abonnent? Logg på
War Over Wounded Earth
For the BJP andthe Congress, the ravaged farmlands of Vidarbha represent a cxitieal battleground in their larger struggle to win Maharashtra
Say no to continual elections
Following the recommendations of a high-level committee led by former president Ram Nath Kovind to streamline the widely scattered schedule of national, state and local elections, the Union cabinet has reportedly approved two constitutional amendment bills for likely introduction in Parliament. Predictably, the return of the ‘one nation, one election’ issue to news has set off a flurry of objections by several opposition leaders.
Fabulously, fashionably funny
The third season of the Karan Johar-produced Fabulous Lives of Bollywood Wives dropped on Netflix, but articles criticising the show appear in some news site or the other almost daily. If it is so bad, why keep writing about it? And if it is so bad, why would the superpowers at Netflix, who are harder to meet than the prime minister, commission the show season after season?
All in the family
The Chitaras have been passing down the secret art of Mata Ni Pachedi through generations for more than 400 years now
Raise a toast to Vidya Balan
Vidya Balan is a New Year baby. At 45, she is aglow in the most beautiful way, having won the hearts and admiration of countless fans across the world, who watched the supremely talented actor take a public tumble on stage at a high-profile promotional event recently, sharing the platform with no less a dancer than the eternally graceful Madhuri Dixit.
Death no bar
Being alive is not a legal requirement to be elected president of the United States
The Lotus POTUS
You should visit us one of these days— there is so much excitement in our USA! No, I don’t mean the famous USA—the Ulhasnagar Sindhi Association of Mumbai.
RAY OF HOPE
Actor and cancer survivor Lisa Ray talks to oncologist Dr Jame Abraham about inner strength and her surrogacy journey
LEVERAGE AI TO ENHANCE WORK
AT THE WEEK Health Summit, Siddharth Bagga, head (retail, CPG and health care), Google Cloud, elaborated on the significant work that Google has been doing in health care through artificial intelligence (AI).
PRESSURE POINTS
Author and MP Shashi Tharoor and motivational speaker Gaur Gopal Das on how to find healing and meaning in today's world
