NEW DELHI: When Rights of Persons with Disabilities Act 2016 came into being in April this year, it gave a lot of hope to haemophilia patients, as the disease was included in the list of disabilities. The law entitled the disabled to benefits in several government schemes, scholarship, pension, and reservation in jobs. But sadly, all this remains only on paper. The erstwhile Right of Persons with Disabilities Act 1995 considered only seven categories, namely blindness, low vision, locomotive disability, hearing impairment, mental retardation, mental illness and leprosy, but not haemophilia.According to a study conducted by the World Federation of Haemophilia in 2016, almost half of the world’s haemophilia population lives in India.
Haemophilia patients in the country have not been able to avail any of benefits offered under the new law as the government has not framed guidelines pertaining to them. The sufferers have been unsuccessful in procuring disability certificates from hospitals because there is no clarity on the percentage of disability that has to be associated with persons suffering from different levels of haemophilia.
The Ministry of Social Justice and Empowerment, in its reply dated July 26 to an RTI query filed by Delhi-based lawyer Sagar Sharma, said, “Guidelines for the assessment and certification of specified disabilities included in the RPwD Act 2016, including haemophilia, are being framed by this department. Once these are finalised, it will be notified by the gazette of India.”Commenting on this, Sharma said, “The RTI reply shows that the RPwD Act 2016, in its present form, is of no use to haemophilia patients. The government should frame guidelines at the earliest, otherwise haemophilia patients cannot avail any benefits meant for the disabled.
What is Haemophilia?
Haemophilia is a genetic and life-threatening bleeding disorder that affects the blood’s ability to clot due to the absence of clotting proteins called factors. It is classified into three kinds—mild, moderate and severe. People with mild haemophilia may not have any symptoms for many years until an event such as a surgery or a dental procedure occurs. However, in cases of moderate haemophilia, symptoms will be noticeable early on. Symptoms of severe haemophilia are similar to those found in moderate haemophilia. However, joint bleeding is more frequent and severe.
Dereliction in UP
Uttar Pradesh, which was recently in news for its poor healthcare system, especially with regard to treatment of encephalitis, lags behind even in the treatment of haemophilia. According to an RTI reply, in the country’s most populous state, there are only 23 government hospitals that provide the facility of free “clotting factor concentrates”, which helps in stopping the bleeding and is the first step in treatment of patients with severe haemophilia.