Proposal to include Multiple Sclerosis in Ayushman Bharat under consideration

New Delhi: The Multiple Sclerosis Society of India (MSSI) commemorated ‘World Multiple Sclerosis Day’ in the national capital which brought experts in the field, government officials and Multiple Sclerosis (MS) patients on a single platform.

The aim of this event was to raise awareness and understanding about Multiple Sclerosis (MS) among the general public, employers and government officials. MSSI called for more research into effective treatments and practical ways to improve quality of life for people with the illness.

There is an urgent need for the private and public sector to support MS organizations and patient groups, by investing in them and developing their capacity, ensure improved diagnosis and treatment, and increased access of information and resources for all. It is imperative to work together with policy makers to make treatments more affordable, either directly or through wider reimbursement by insurance or government.

Present on the occasion Mr K Vikram Simha Rao, Director, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India said, “There is a dire need of representation of Persons with Disability (PWD) at the government level so that more disabilities can be included in the disability act and more schemes can be introduced & benefits can be passed on to the PWDs. Government is planning to introduce a centralize data management system which would help in keeping a track on the population of disable people, type of disability and work effectively to provide facilities to the beneficiaries and the authorities will be able to access this centralize data from anywhere.” 

Given that such diseases are incurable, the cost of treatment varies from 3 lakhs per year to 2 crores per year. Therefore, the proposal of including MS in Ayushman Bharat is being highly appreciated. Elaborating further on this Mr informed that “Department of Empowerment of Persons with Disabilities has extended its proposal of including MS along with 20 other disabilities in the Aayushmaan Bharat – Health Insurance Scheme so that MS patients can avail the central government’s health scheme; this would help an MS patient to be self-reliant to an extent. 

There has been a considerable shift in MS prevalence in India and this has really changed the notion of considering India as a low risk zone for MS. In India, significant upsurge is needed in carrying out large scale population-based epidemiological studies to get an idea about the true incidence and prevalence rates of MS viz a viz disease burden. 

Highlighting the need of the hour, Dr Kameshwar Prasad, Head of the Department of Neurology at AIIMS, said “A lot of research needs to be done on MS. Earlier when MRI was not available, it was hard to detect MS and it used to be considered as a rare disease but, post MRI introduction it has helped doctors diagnose MS occurrence in patient more effectively. MS is physically as well as emotionally draining illness that impacts both the patient and their families – demanding a lot of psychological strength. MS affects the patient’s mind, will-power, employment and disrupts life on the family/ friends front as well. It is about time that organizations like MSSI, private institutions and government come together to undertake research so that preventive measures can be taken and collaboratively work towards providing affordable MS generic drugs to the patient.”

Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. In India MS is targeting children’s as well starting from the age of 16 years. As per the last study conducted in India was 2003-04 there were 200,000 reported patients were affected with MS. Post that, no study was conducted on this and it is believed that this figure must have gone up by 2 to 4 folds which could be 10 percent of world’s total Multiple Sclerosis patients. 

Mr T D Dhariyal, Commissioner for Persons with Disabilities, Government of NCT of Delhi, said “In these years we have noticed that the most common problem that PWDs face is the ease of accessibility. A lot of awareness needs to be created for MS and organizations like MSSI should come forward and lead the awareness creating campaign.  We are dedicated towards making Delhi the most accessible city, whether it’s related to providing facilities to MS patients, giving employment, care and allowance as well. In some cases, we have taken suo motu action and made sure that PWDs are treated equally, and their rights are rightly served.”

Ms Renuka Malaker, National Secretary, MSSI, highlighted that “if we continue to build awareness amongst all important stakeholders we will eventually be able to create the 1st MS registry which will create a base for research and access to affordable treatment.”

MSSI is the oldest society in India dedicated to help people affected by Multiple Sclerosis effectively manage and cope with the disease. MS is an autoimmune disease in which body’s immune system starts damaging the protective layer of the nerve cells in the brain and the spinal cord. Through this conference, MSSI tried to throw light on the actual picture of MS prevalence in India and this could serve as harbinger for upcoming research and at the same time it would definitely aid in working out future strategies for MS management in the country.