Interview with Renuka Malaker, National Secretary (Hon), Multiple Sclerosis Society of India, by DEOC
What is Multiple Sclerosis?
Multiple Sclerosis (MS) is a chronic, unpredictable disease of the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. It is thought to be an immune-mediated disorder, in which the immune system incorrectly attacks healthy tissue in the CNS.
MS can cause many symptoms, including blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, and blindness and more. These problems may come and go or persist and worsen over time.
Four disease courses have been identified in multiple sclerosis: clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), primary progressive MS (PPMS), and secondary progressive MS (SPMS).
What is the usual age for its onset?
Multiple Sclerosis usually affects people between the ages of 20 to 30 in women and between 30 to 40 in men. Women are more than twice as likely to develop multiple sclerosis as men.
Is it curable?
Not yet. There are now FDA-approved medications that have been shown to “modify” the course of MS by reducing the number of relapses and delaying progression of disability to some degree. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.
How does it affect a person’s functioning?
Because MS causes damages in the CNS, nearly any function can be adversely affected. However, the most common symptoms are overwhelming fatigue, visual disturbances, altered sensation and difficulties with mobility. These symptoms of MS are unpredictable, and vary in type and severity from one person to another, and in the same person, over time. Symptoms may disappear or remit completely or they may persist and may worsen over time.
What services exist for people with MS in the country?
Nothing really, there is no specialised service available in the country for person with MS though that is very necessary. In other countries there are MS nurses, physiotherapists, doctors and MS centres/clinics. However through the Multiple Sclerosis Society of India regional offices, we provide the following services to our registered MS members
- Home Nursing Care
- Caregiver Sessions
- Information Dissemination on latest research finding and treatments
- Doctor Patient Interactions
- Medical Camps & Seminars
What are the assistive technologies that are useful?
Lifts in public places, motorised & manual wheelchairs, customised cars that facilitate entry and exit out of a vehicle, low-floor buses that work!
What accommodations are required in educational institutions and workplaces?
Because MS symptoms and persons affected by Multiple Sclerosis have varied symptoms and degrees of disability it is very difficult at this stage to identify one or two requirements. MS causes multiple disabilities ranging from loss of vision, slurred speech, imbalance, spasticity, incontinence and extreme fatigue.
In India MS in children is still quite rare but educational institutions must be fully accessible. Staff in the educational institutions must be sensitized to understand that young adults are unable to cope due to fatigue and that it worse when exposed to heat and sun.
Employers should provide a fully accessible workplace. An MS person may need a workstation close to the washroom and lifts, employers have to be sensitised to the invisible system like incontinence & fatigue, which an MS-affected person very often can’t say, or is shy to express. Employers should not discriminate against a person with MS and ensure that necessary accommodations are provided to her/him
Tell us about your organisation and work?
The Multiple Sclerosis Society of India (MSSI) is a registered voluntary, non-profit organization established in 1985. We work for the welfare of people affected by Multiple Sclerosis and are affiliated to MSIF UK (Multiple Sclerosis International Federation). Our founder members, Mrs. Rehmut S. Fazalbhoy and Mr. A. H.Tobaccowala, former Chairman, Voltas India, Mr. K. N.Randeria, Mrs. Sheela Chitnis, Mr. A.J. Joglekar and Major Sharan came together with a view to promote the welfare of persons with Multiple Sclerosis in India.
Established in 1985 with just 1 office in Mumbai and 3 MS persons, we have grown gradually, to 8 regional chapters serving and addressing needs of close to 3000 MS persons.
The operational and strategic decisions are taken by the Office Bearers at the Governing Council meetings. Except for the office staff MSSI is run by volunteers who are MS person themselves/their caregivers/family members or friends and relatives of people with MS.
We provide homecare services as mentioned above which include specialised physiotherapists & nurses, scholarship to children of persons with MS, assisting members to fast track appointments (in special cases only) reimbursements for treatment (as per merits of the case). We also donate bed mattresses, walking and mobility aids, diapers and supplements to the most needy.
Watch this video to know more about what is Multiple Sclerosis…
What are your current demands with the Government?
After working for 32 years in the area of improving quality of life of MS person by providing services, we left the need to add the element of advocacy so that our demands are heard at the level of Government policy influencers, makers & implementers and healthcare stakeholders. Some of the current demands are
- Creation of Central Registry of Person with MS under the Ministry of Health: Presently there is no centralized databank of Person with MS in the country. Neurological departments of the Government and private hospitals can be asked to create an e-registry of persons diagnosed with MS and MSSI can integrate its existing database into that. This is absolutely essential for Research & Development for the Only when we have numbers to show will pharmaceutical companies (both Pvt or PSUs) will see the value of investment in research. MSSI will be happy to look at a PPP model for this project under the guidance of the Ministry.
- Reduce Cost of Treatment: As on date there is no cure for MS, however, Disease Modifying Treatments (DMTs) are available that might arrest progression of MS and improve the Quality of Life (QOL). Most branded DMTs are expensive which makes treatment unaffordable to most people in a poor country like ours. Cost of treatment varies from Rs 3 lakhs/year to 2 crores/year and can go on for periods anywhere between 2 years to lifelong.
- Generic Drugs: Generic drugs on the other hand costs Rs10,000/year. We will request the Ministry of Health to identify available generic drugs for types of MS (RR; PPMS) and the same should be available on public domain or healthcare platforms. This will enable MS patients to have access to information on branded as well as unbranded drugs. This will also enable them to choose the line of treatment according to their income and affordability. Once identified these drugs must be made available in government hospitals as mandatory so that persons with MS can access cheaper treatment through government hospitals.
- Issuance of Disability certificate for MS person. A proper assessment is required taking into account invisible symptoms. As per the guidelines, Multiple Sclerosis will be assessed only as a percentage of Permanent Physical Impairment. This may not be applicable to all persons diagnosed with Multiple Sclerosis as at times the disability is invisible such as fatigue, incontinence, imbalance, cognitive disorders etc. This must be taken into cognisance whilst assessing the disability.
- Ensuring benefits of RPWD Act reach people with MS: Multiple Sclerosis has been recognised as a disability in the new Act. People with MS should be a part of the Central and Stare Advisory boards, they should get reservation in employment like other people with benchmark disabilities and so on.