The Haemophilia Federation India (HFI) has demanded that haemophilia and thalassaemia be included in the category of benchmark disabilities in the Rights of Persons with Disabilities Bill, 2012.
The HFI members held a protest dharna at Jantar Mantar over the weekend and submitted a memorandum to President Pranab Mukherjee stating that haemophilia and thalassaemia are life-threatening disorders and that affected people cannot work without adequate job security.
The Federation chief executive officer S. S. Roychoudhury said: “The Bill that 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.”
He added that the Federation has also submitted a memorandum to the Ministry of Social Justice and Empowerment.
HFI president and Director of National Institute of Immunohaematology, KEM Hospital, Mumbai, Dr. K. Ghosh added: “Most of the patients registered with the organisations are disabled to varying extents. The widespread prevalence of disability amongst patients, its social costs in terms of incomplete education and unemployment, justifies the need to include Hemophilia as one of the conditions under the Act.”
