Thursday, April 2nd, 2020

Patients Struggle to Pay for a Life with Multiple Sclerosis

downloadKulbir Kalsi,
INVC,
Chandigarh, With status of the bill recognizing Multiple Sclerosis (MS) under the PWD, Act 1995 still pending in 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 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 recognized under the existing Persons with Disabilities (PWD) Act 1995. Once passed, the bill would enable a person living with MS to entitlement of the same 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 penalize and punish offences committed against them. Multiple Sclerosis (MS), a debilitation nerve disorder, often diagnosed during prime working years and is one of the most common causes of disability amongst young adults. A ‘hidden disease’, the extent of its impact is not visible to others. The disease mostly strikes youth at a time when they are starting new careers, relationships or making plans for the future. In many cases, patients have to leave their jobs and restrict their movements. Patients face a lifelong stigma of people seeing them as sick, disabled and a burden to the society.   Dr Prabhjeet Singh, Senior Consultant Neurology, K D 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% of all MS patients have difficulty in walking, 20% require assistance of canes, crutches, or walkers and 30% 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 infrastructures.” In recent times, a wide range of innovative therapies have become available that can now target the different types of MS. Unfortunately most patients are unable to benefit from this development as they cannot afford these therapies. Also, insurance companies have been reluctant to cover this lifelong disease under medical coverage. Poor public infrastructure adds to the patient’s misery. Dr. Dheeraj Khurana, Additional Professor, Postgraduate Institute of Medical Education and Research, Chandigarh says, “Patients may face discrimination especially if they get handicapped or have symptoms like fatigue etc 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.”  MS is an auto-immune disease in which the body attacks its own cells and tissues. The most common symptoms are weakness in the limbs, numbness, sudden loss of balance, blurred vision that may lead to paralysis. Symptoms, such as depression, anxiety, limitations in mobility, slurred speech, urinary and fecal frequency and urgency, and cognitive impairment causing memory and concentration difficulties limit the ability of people with MS to work efficiently.  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.

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