With status of the bill recognising Multiple Sclerosis under the PWD, Act 1995, still pending in the Parliament, fate of multiple sclerosis patients’ rights continue to hang in the balance.
Experts worry that the delay in the rights bill coupled with issues related to accessibility of Multiple Sclerosis (MS) treatment is proving too much for most MS patients to lead a normal life. The Draft Rights of Persons with Disabilities Bill 2012, prepared by the Ministry of Social Justice and Empowerment recommends including Multiple Sclerosis amongst others to the standard seven disabilities recognised under the existing Persons with Disabilities (PWD) Act 1995.
Once passed, the bill would enable a person living with MS to entitlement of the legal rights and benefits similar to those living with blindness or loco-motor disabilities. The bill would also protect disabled persons against discrimination, provide affirmative action and penalise and punish offences committed against them.
Dr Dheeraj Khurana, Additional Professor, Postgraduate Institute of Medical Education and Research, Chandigarh said, “Patients may face discrimination especially if they get handicapped or have symptoms like fatigue, which might limit their working capacities. lack of knowledge about the disease is a major contributor to this discrimination.”
“The social disconnect is chiefly a result of the consequences of the disease which make the patient feel disabled compared to their peers. This leads to stress and may also be responsible for disease worsening. The society should understand the needs of MS patients and push for greater infrastructure and affordable treatment for the disabled in India,” added Khurana.
Dr Prabhjeet Singh, Senior Consultant Neurology, KD Hospital, Amritsar, said, “MS is an immune-mediated disorder with several factors believed to trigger it. The exact cause however is not unknown. It affects women more than men and often begins between the ages of 20 and 40. Within 15 years of diagnosis, approximately 50 percent of all MS patients have difficulty in walking, 20 per cent require assistance of canes, crutches, or walkers and 30 per cent get bedridden.”
“In most Indian cities, none of the public spaces have been designed keeping in mind the needs of people with physical disabilities. Be it bus shelters, railway stations, public buildings or toilets, the differently-abled feel shortchanged by the poorly planned public infrastructure. These things should be kept in mind while planning infrastructure,” he said. The average cost of patented MS injections comes to around Rs 40,000 per month. According to estimates, there is between 100,000-200,000 multiple sclerosis patients in India, however, there are no exact statistics available.