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Posted on Nov 24, 10:32PM | IANS
The Haemophilia Federation India (HFI) Saturday submitted a memorandum to President Pranab Mukherjee to include haemophilia and thalassaemia in the category of benchmark disabilities in the Rights of Persons with Disabilities Bill, 2012.
The bill, which will replace the Persons with Disabilities Act, 1995, has 18 disabilities including haemophilia and thalassaemia. But the two disorders have been excluded from the benchmark disabilities section, which promises the security of a government job.
"Haemophilia and thalassaemia are life-threatening disorders. Affected people cannot work without job security," S.S. Roychoudhury, chief executive officer of HFI, told IANS. He demanded the bill must be introduced during the ongoing winter session of parliament.
The HFI also sent a memorandum to the ministry of social justice and empowerment and held a demonstration in at Jantar Mantar in the capital.
According to Mukesh Garodia, a 39-year-old haemophiliac, a muscle spasm or a minor cut can be fatal for a person with the disease.
"A cramp in my wrist can lead to internal bleeding or profuse bleeding if I cut my finger, as the blood will not clot normally, making me bed-ridden for weeks or months at a stretch," Garodia said.
"A private employer will definitely not want to hire me because I can fall sick anytime. That's why we need job security from the government," said Garodia, a businessman from Guwahati, Assam.
The HFI has also demanded a provision for insurance coverage and employment without discrimination for people with haemophilia and thalassaemia.