Sailen Ghosh

This dates Almost two decades back. The local club’s champion that he was, the young and energetic Sailen Ghosh was always game for meddling in politics, arranging blood donation camps and organising cultural events in his Tollygunge para.

A woman from the nearby railway colony often used to request Ghosh to arrange for blood for her three-year-old daughter.

On a particularly gloomy evening, when the youngsters were ruing their loss to a neighbouring club in a soccer match, the woman showed up again. In his irritation, Ghosh gave her a mouthful. She wept, saying that her daughter would die if no blood was found. Three years later, the girl did die.

This made Ghosh sit up to the woes of thalassaemics. “It took me a few years before I managed to stumble on the Thalassaemia Society of India. A haematologist of the School of Tropical Medicine gave me information to pass on to donors at the various camps that we started to organise,” Ghosh says. “But had it not been for that woman I would never have felt the urge to become involved,” he admits.

An employee with the directorate of dairy development, 43-year-old Ghosh now devotes his leisure organising events to raise awareness.

Ghosh and his friends founded the Thalassaemia and AIDS Prevention Society in February, 1994. The organisation still runs from a small room at 21, Deshapran Sashmal Road. “People are hardly aware that if the parents are thalassaemic, their children have high chances of inheriting the disease. Our organisation is trying to spread awareness that thalassaemics should not only divulge their health status to their prospective partner but also insist that s/he go for the specific blood test,” Ghosh says.

He even produced a Bengali documentary film Na based on the disease in 2003. The documentary was appreciated by the health minister when it was screened in Nandan in July in the same year.

But the team’s efforts have hardly borne any fruit, he laments. After much persuasion, the government formed a Thalassaemia Core Committee in 2001, of which Ghosh is a honourary member. Half a dozen meetings with political bigwigs assured that the matter was taken up in the Assembly, discussed and conveniently forgotten. “NGOs like ours have failed to get results because the government is absolutely passive about the issue,” he laments.

Ghosh plans to distribute CDs of his film among voluntary organisations to be screened at blood donation camps. “I have seen so many children suffer that I have to carry on, even at my own expense,” he says.