Law Recognizes Thalassaemia, Sickle Cell Disability

NAGPUR: After six years of struggle, thalassaemia and sickle cell patients can finally expect to get government benefits enjoyed only by the disabled until now. The Lok Sabha passed the disability bill, which has expanded the scope to cover thalassaemia and sickle cell patients, on Friday. City-based Dr Vinky Rughwani, member of State Blood Transfusion Council (SBTC), who also heads the Thalassaemia Society of India, claims to have played a major role in getting the bill planned and passed.

Dr Rughwani said, “We have been following up the issue for last six years. In 2014, Congress had placed the bill in Rajya Sabha and it was pending ever since. When the BJP came to power, we met social justice and empowerment minister Thawar Chand Gehlot to stress upon our demand. I also tried pursuing the issue through International Thalassaemia Federation, of which I am the Indian representative.”

The bill was finally passed by the Rajya Sabha two days ago, and then by the Lok Sabha. Dr Rughwani said, “While the 1995 Act recognized seven disabilities, the new Bill covers 19 conditions — including cerebral palsy, haemophilia, autism, thalassaemia and sickle cell.”

Two more conditions — disability due to acid attack and Parkinson’s disease — were also added.”

Dr Rughwani said, “There are about a lakh patients of thalassaemia, 50,000 of sickle cell and about 25,000 for haemophilia. It’s a big victory for all these patients, because despite of their health condition, they were deprived of all government provisions given to other people with disability.”

He said, “While appearing at job interviews, even thalassaemia patients had to go though fitness test along with other candidates, leading them to be declared unfit. With the new bill, such patients will get 4% reservation with other disabled candidates.”

“In another provision, such patients will be provided barrier free access at buildings and transport system wherever they work,” he said. Earlier, there used to be a fine on people causing trouble to such patients. Now, a jail term has also been included as punishment, he said.

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