HYDERABAD: Multiple sclerosis (MS) is a neurological disease listed in Rights of Persons with Disabilities Act, 2016. Numerous NGOs are there claiming to work for disabled persons. But services of these NGOs are more or less limited to visible disabilities, like victims of acid attack, people without a limb, or hearing impaired.
But those working for multiple sclerosis patients (MSPs) are hardly to be seen. “Since their symptoms are hidden, it is difficult to gauge their disease just by looking at them,” says Dr. Netravathi M., additional professor (Neurology), National Institute of Mental Health and Neurosciences (NIMHANS).
“If there is to be inclusive growth, then it is important that policymakers know what the disease burden of multiple sclerosis is. In reality, the number of MSPs could well be in lakhs in the country,” observes Dr. Netravathi.
Take the example of Raju (name changed on request), a multiple sclerosis patient from the city. He said he had been approached by an insurance company offering health insurance coverage of Rs. 50 lakh. “As soon as I told them that I have MS, they backed off. They told me they do not offer insurance to multiple sclerosis patients (MSPs). Then it struck me that if I go through a group insurance, then maybe I will be eligible for insurance. Thus, I approached one of the NGOs. But they told me they have not heard of MS.”
The case is no different when it comes to state government as well. It asserts that there are only 1,500-odd people with MS in Telangana. However, as per India MS Map, there are 94 MSPs, who have voluntary registered themselves from Hyderabad alone.
Speaking to Deccan Chronicle, Kolli Nageshwar Rao, head of the All-India Disabled Rights Forum (AIDRF) says: “There are many fly-by-night NGOs that claim to support persons with disabilities. There are 21 disabilities under the Rights of Persons with Disabilities Act, 2016, which include diseases like Parkinson’s, thalassemia and multiple sclerosis. These are ailments that none can see. But only patients can describe what s/he feels like.”
Thus, there is acute need for organisations that actively work for multiple sclerosis patients too....