Lack of govt support slows down detection of Multiple Sclerosis in Karnataka

Though more cases of Multiple Sclerosis (MS) are getting detected now, adequate government support remains elusive for the patients. There is no data on the number of patients in Karnataka, and even those who have been diagnosed find it tough to access benefits under the Rights of Persons with Disabilities (RPD) Act, 2016.

MS, a chronic neurological disorder, can cause uncoordinated movements, vision problems, cognitive impairment, etc.

Ahead of World Multiple Sclerosis Day on May 30, DH spoke with patients and doctors to understand the way forward.

In the absence of comprehensive studies, estimates of cases in India vary widely, says neurologist Dr Col J D Mukherji. “Smaller studies have shown prevalence to be 1-8 per lakh of population but the national registry for MS, launched last year, shows prevalence of 20-40 per lakh,” he says.

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The lack of data also means poor patient support.

MS was recognised as a disability only when the RPD Act came into effect, in 2016. “As per the Act, the government should conduct surveys to identify people with all disabilities including MS. But the last available data is from the 2011 Census which did not include MS patients,” says S Babu of the NGO Association of People with Disability.

Those with MS should ideally get Unique Disability ID (UDID) cards, which are compulsory for receiving any disability-related benefit including financial aid. The cost of MS treatment can vary from Rs 3 lakh to Rs 3 crore annually, which is hard to bear for most.

But as per data from the Department for the Empowerment of Differently Abled and Senior Citizens, only around 730 people in the state have got a UDID card out of the 2,247 who have applied. While many applications are still under process, 806 have been rejected.

According to patient support organisation MS Society of India (MSSI), the UDID assessment guidelines are problematic. The guidelines consider only permanent physical impairment, whereas MS symptoms change day-to-day. “The benchmark for getting a UDID card is 40% disability, but some get assessed as having only 10-15% disability because their symptoms are better that day,” says Arun Mohan, MSSI Governing Council member.

Long-winding card issuance procedures and non-consideration of cognitive impairment are other problems. Of the 150 members in MSSI’s Bengaluru chapter who applied for UDID, only half have got the cards.