Remember ME - You Me and Dementia

Sunday, February 10, 2008

Govt sleeps on thalassaemia menace

You could blame it on lack of awareness. Or plain neglect. But the fact is, West Bengal accounts for one-third of the thalassaemic children in India.

What's worse, there has been no concerted effort to check this genetic disease. Very few couples opt for the blood tests to detect the thalassaemic trait before marriage. And many of those who do, are dissuaded by their parents.

As a result, 'progressive' Bengal lags even behind Bihar and other states when it comes to thalassaemic patients. And what has the state health department done to raise awareness? Offer free screening at three hospitals. That's it.

According to Thalassaemia International Federation, an international body that monitors the disease across the globe, 50,000 of the 1,50,000 children with thalassaemia in India are in Bengal. Every year, around 2,500 babies are born in the state with the disease. The annual national increase is between 6,000 to 8,000.

Doctors and organisations working on thalassaemia blame this trend on the lack of awareness and society's discriminatory attitude towards girls with thalassaemia.

Even if a girl is ready to go in for screening, she is often discouraged by her parents who fear the stigma attached to the disease will have an affect her marriage prospects if she is detected a carrier.

"Nearly 15% of the state's population are carriers of thalassaemia. The attempt to arrest this problem is defeated by lack of awareness," said Tapas Sengupta, secretary, Thalassaemia Society of India.

The thalassaemia unit of Netaji Subhash Chandra Bose Cancer Research Institute (NSCBCRI) came up against a peculiar hurdle in a women's college in Burdwan. During a screening camp, 26% of the girls tested positive. Later, those girls were allegedly forced by their families to tear up the reports and keep mum about it.

"Every year, we screen 3,000 unmarried youths for thalassaemia across the state. Surprisingly, we found parents were reluctant to have their daughters screened. But when it came to their sons, they were forthcoming," said Ashis Mukhopadhyay of NSCBCRI.

Most people don't even know that it is completely safe for a carrier and a non-carrier to marry. And that if two carriers marry, there is just a 25% chance of the child being born with thalassaemia.

"The government should frame stringent laws and make registration of thalassaemia status mandatory before marriage," said Mukhopadhyay.

The state health department conceded that it needs to pull up its socks to counter this problem. Only two government hospitals in Kolkata - NRS Medical College and Hospital and Calcutta Medical College - and the North Bengal Medical College in Jalpaiguri have thalassaemia screening centres.

"We have tied up with various NGOs for screening and awareness campaigns. Though the screening in the three hospitals is free of cost, people have a mental block about the disease and avoid this facility," said director health services Sanchita Bakshi.


Forget yourself for others, and others will never forget you.

1 comment:

Vivek Kaushal said...


Can you please give the phone number of the netaji subhash chader bose cancer research institute, Kolkota.