With just 15 per cent of the total patients with haemophilia getting treatment in the country, the sector is hoping for better medical facilities under the proposed Disability Bill 2014, which will expand the definition of disability covering 19 disabilities including the genetic and life threatening bleeding disorder compared to just seven disabilities in the existing legislation.
The Bill is pending with the Prime Minister’s Office (PMO), which is looking into its various provisions.
Kamlesh Kumar Pandey, Chief Commissioner for Person Disability, Ministry of Social Justice and Empowerment said, “A person with haemophilia has to live through the disease throughout his life. It slowly takes a person towards disability. Our Ministry is trying to get the Bill approved in order to set up treatment centres across the country in different districts to treat the disease.
“As per the proposed disability Act, there are 7 diseases categorized under it but soon there be 18 such categories including hemophilia, cancer and other such related diseases. It would help address medical needs of such patients. The bill has been forwarded to the PMO and will be soon approved by the Rajya Sabha to declare hemophilia as a disability in the Disability Act,” he said at an event organized by the Hemophilia Federation India (HFI).
Dr GN Singh, Drug Controller General of India (DCGI) echoed similar views, empathizing with the plight and after effects of genetic disorders a patient has to undergo while fighting the battle with hemophilia.
According to Basab Gupta, Deputy Commissioner, National Urban Health Mission, “We are looking forward to formulate standard protocol and set proper guidelines at national level disseminating the motive of the cause in States and seeking funds from the Finance Ministry for the same.”
A representative from the HFI said that they are urging the government for proper budgeting and provisions to initiate Anti - Hemophilia Factor facilities under NACO. The federation has also forwarded the desired proposal to National Health Mission to help people cure this communicable disease across the country by setting up centres in different cities.
The only possible treatment is infusion of life saving drugs called Anti-Hemophilic Factors (AHF), which is costly and neither produced nor readily available in the country, added Dr. (Brig.) Ajay Sharma, hematologist from Sir Gangaram Hospital. He stressed on immediate treatment of the kids suffering from the bleeding disorder so that they can live a disability free life.