Advocacy

Rights of Persons with Disabilities Act recognized MS as a disability in 2016. Yet, there are still several grave issues faced by people living with MS and their families. There are several issues of persons with MS that need to be worked out with RPDA 2016:

    1. The issue of the 40% benchmark disability: As per the assessment guidelines released by the Government, 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. MS is also episodic in nature, so the regulating authority will have to evaluate the frequency and length of the episodes of relapse, the time between relapses, and the presence of permanent impairments even in times of little to no symptoms, associated conditions due to medications and the disorder itself etc to determine the disability of a person with MS accordingly. The Guidelines, therefore, need to be reworked in consultation with the primary stakeholders to take into account invisible symptoms and the criteria of visible 40% disability must be supplemented with the previous relapses the MS person experienced making for the poor quality of life and qualifying for persistent disability. In addition, due to the multiple issues faced by persons with MS, they need to be acknowledged as people having multiple disabilities.
    2. Non-availability of data on people with MS in India: The crude prevalence of MS in India stands at 8-9 people per 1, 00,000. It is estimated that the approximate number of persons with MS in India is close to 1.8 lakh. 3,000 members are registered with the 8 MSSI chapters in India. To date, no large-scale studies have been conducted to accurately determine the incidence and prevalence of MS in India. However, in the last few years, an increase in the number of practising neurologists and easy and affordable availability of magnetic resonance imaging (MRI) has led to an increase in the reported prevalence of MS but there is no centralized Registry of Person with MS in the country. Without authentic data, it is difficult to convince policymakers to formulate appropriate policies and programmes for people with MS and also for pharmaceutical companies to invest in Research and Development for treatment.
    3. The prohibitive cost of treatment: As on date there is no cure for MS. A growing body of evidence indicates that early and ongoing treatment with a Disease-Modifying Therapy (DMT) is the best way to modify its course, prevent the accumulation of disability, and protect the brain from damage due to MS. 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. This rising cost of drugs and changing insurance coverage adversely affect access to treatment for people with MS. There is also scant research on developing generic drugs to treat people with MS in India.
    4. Insurance cover not available for people with MS: People living with MS fall into an Impaired Risk Category to life insurance companies. Insurance companies claim that though having MS makes it more difficult to get insured, many people with this condition have bought life insurance. This is a fallacy. Most people with MS in India are denied insurance and the only options are those such as guaranteed graded benefit life insurance policies that they can be approved if one has Primary Progressive Multiple Sclerosis or Secondary Progressive MS. These come at high premiums falling in the Critical Illness Categories and that also is dependent upon the whims of the underwriters.  Most insurances do not cover MS as a pre-existing condition; some insurers will cover MS medications, but have a 5 year wait period—a person with MS must be continuously insured by the insurer for 5 consecutive years as a precondition for coverage, thereby leaving them with little option for accessing their medications at least initially. Added to that are financial costs associated with consultations, diagnostics, and disability support among others. The lack of a fair and adequate system leads to low participation in insurance schemes.
    5. No reservation for people with MS in the job reservation quota of 4% as mandated by the RWPD Act: While MS has been recognized as a disability under the RPWD Act it is disappointing that the Government has chosen to deny this group and a few others the advantage of the allocated 4% reservation in Government jobs. There is a 1% reservation each for people with low vision and blindness, deaf and hard of hearing, locomotor disability, autism, intellectual disability, specific learning disability and mental illness.  There is no reservation for people living with MS as well as for people with various blood disorders recognized under the RPWD Act which is discriminatory in itself.
    6. No implementation of the caregivers’ allowance and other provisions as promised under the RPWD Act: Section 24(3) of the RPWD Act clearly states that the appropriate Government shall within the limit of its economic capacity and development formulate necessary schemes and programmes to safeguard and promote the rights of persons with disabilities for an adequate standard of living to enable them to live independently or in the community and that these shall include:
      • facilities for persons including children with disabilities who have no family or have been abandoned, or are without shelter or livelihood;
      • support during natural or man-made disasters and in areas of conflict;
      • support to women with disability for livelihood and for the upbringing of their children;
      • access to safe drinking water and appropriate and accessible sanitation facilities especially in urban slums and rural areas;
      • provisions of aids and appliances, medicine and diagnostic services and corrective surgery free of cost to persons with disabilities with such income ceiling as may be notified;
      • disability pension to persons with disabilities subject to such income ceiling as may be notified;
      • unemployment allowance to persons with disabilities registered with Special Employment Exchange for more than two years and who could not be placed in any gainful occupation;
      • care-giver allowance to persons with disabilities with high support needs;
      • comprehensive insurance scheme for persons with a disability, not covered under the Employees State Insurance Schemes, or any other statutory or Government-sponsored insurance schemes;These schemes are extremely important for people living with MS but even though two years have ended since the notification of the Central Rules, most of these schemes are yet to be framed and we request that people with MS should also be considered while framing these schemes. The income ceiling as mentioned in 24.3.f and other provisions of the act should be removed for persons with multiple sclerosis considering the huge medical expenses incurred by them. In addition, medical assistance kits and motorised wheelchairs should be added to social protection measures / high support provisions (sec 38) of persons with MS. Other departments such as Skill Development, vocational training, school education, higher education, Water Sanitation and Hygiene, MNREGA, Transport, Tourism, Housing etc need to adopt a reasonable accommodation chart for people with MS and promote the same.
    1. Lack of authentic research on MS in India: There is an urgent need for research on people living with MS in India. Research is required in multiple areas – data, therapy, treatment (stem cell, DMT), ways to improve Quality of Life (QoL), genetic analysis, population-based studies, discrimination faced in job establishments/ public places/hospital setup and other investigations that are steadily expanding scientists’ understanding of MS risk factors and physiologic processes, laying the groundwork for new treatments and other interventions. Issues of access and adherence, along with healthcare outcomes – Economic, Clinical and Humanistic outcomes for MS patients living in India–need to be further investigated for a deeper understanding so that clinical programs may be optimized. Critical questions of access and affordability remain, making MS an expensive condition. In the absence of drug databases and outcomes reporting in India, all information procured is usually through patients or neurologists willing to discuss treatments.
    2. Lack of awareness about Multiple Sclerosis: In 2013 there were only 1200 neurologists registered with the Indian Academy of Neurology – the number may have increased marginally. There is therefore not much awareness about MS in India among doctors and among the general public and it is important to sensitize the larger public and also the medical fraternity on issues faced by persons with MS.  Section 39 (1) of the RPWD Act (1) mandates that the appropriate Government, in consultation with the Chief Commissioner or the State Commissioner, as the case may be, shall conduct, encourage, support or promote awareness campaigns and sensitisation programmes and awareness must also be created about MS, its symptoms and information about various support organisations and hospitals supporting people living with MS, the need for reasonable accommodations at educational institutions, job establishments and public places, particularly on India MS Day ( 1st Sunday of February) and/or on World MS Day on 30th May.
    3. Challenges with education/ higher education for students living with MS: MS manifests in different ways – fatigue and weakness coupled with the treatment itself causes many students diagnosed with MS to miss classes thereby impacting attendance. Most cases of MS are diagnosed later in life when the person is pursuing higher education. Therefore, as a reasonable accommodation for them, it is recommended that the attendance criteria should be relaxed for students with MS for them to be able to prepare for and sit for their exams. Also, financial support should be offered to children of people living with MS as very often the disorder leads to a loss of employment and is coupled with a prohibitive financial burden of treatment.
    4. Income tax exemptions: Currently three sections viz. 80-U, 80DD, 80 DDB of the Income Tax Act along with Rules 11A & 11DD of IT Rules are relevant for persons with any disability and their immediate family members to claim any deductions under Income Tax. People with 40% to 80% disability can avail a deduction of Rs 75,000 to Rs 1.25 lakhs in a financial year. However the definition of disabilities are unfortunately as per the PwD Act of 1995 and according to that, multiple sclerosis is not a recognized disability. Section 80DD and Section 80U of the Income Tax Act allows a deduction for the medical expenses incurred for differently-abled persons. The amount of deduction is the same for both sections. However, Section 80DD can be claimed by the person who has incurred expenses for the dependent differently-abled person. On the other hand, 80U can be claimed by the individual if he/she, is living with a disability.
    5. Status of people living with MS and the COVID Pandemic: Persons living with Multiple Sclerosis require administration of injections like Interferons, Glatira, Rituximab which can be given at home by trained professionals and Neurologists/ Physicians are required to assess side effects if any. During COVID no physician could visit home and doctors were not available in hospitals. This was resolved to some extent by ICMR guidelines for telemedicine and teleconsultations.  Persons who need diapers, catheters, urine bags, disposable sheets, bandages, cotton, antibiotic medicines etc. are unable to procure these either due to lack of funds, non-availability of these items, or inability to physically get them oneself or through the help of another.  People living with MS would face similar situations across all disasters.

MSSI is advocating on the right of persons with MS through on the above-mentioned issue through

  • Campaigns
  • Webinars
  • Conferences
  • Public events