Multiple Sclerosis Care In India Needs Urgent Policy And Treatment Reform, Say Experts

An estimated over two lakh people are living with Multiple Sclerosis (MS) in India, most of them in the 20–40 age group. Despite this, experts in the sector lamented that the country still does not have standard treatment guidelines or updated disability assessment systems that adequately recognize the relapsing nature of the disease and its many “invisible” symptoms, such as extreme fatigue, cognitive difficulties, and chronic pain.

As a result, thousands of patients struggle not only with the illness but also with delayed diagnosis, limited access to care, and lack of social support.

Arun Mohan, Vice President of the Multiple Sclerosis Society of India (MSSI), said the MS care ecosystem in India faces multiple structural challenges. These include the absence of reliable data on disease prevalence, inadequate insurance coverage, lack of clear disability certification guidelines, and a severe shortage of specialists trained to manage MS. Together, these gaps leave patients vulnerable at every stage of the disease.

Mohan stressed that early initiation of high-efficacy therapies can significantly alter disease outcomes. Such treatment reduces the need for repeated hospital visits, prolonged rehabilitation, and long-term care, easing both the physical burden on patients and the strain on the healthcare system. “The primary goal in treating MS should be to slow disease progression and prevent disability, while allowing patients to follow treatment regimens that are convenient and sustainable,” he said.

Better treatment adherence, he added, directly improves quality of life and helps patients continue with work, education, and family responsibilities. The Walk In My Shoes campaign, he noted, seeks to build understanding around these everyday challenges.

He was speaking at Navigating MS Together, an event organized in Bengaluru by the MSSI Bengaluru Chapter in collaboration with the Rotary Action Group Against Multiple Sclerosis (RAGAMS). The programme brought together neurologists, government representatives, Rotary leaders, caregivers, and people living with MS to highlight the urgent need for visibility, dignity, and long-term systemic support for MS care in India.

The discussions addressed key gaps in the MS landscape, including delays in diagnosis, unequal access to treatment, lack of recognition of disability, and the complexities of lifelong disease management. Experts also examined recent advances in treatment, particularly high-efficacy therapies, which are increasingly being recognized for their ability to slow disease progression and preserve functional independence when introduced early.

Emphasizing the role of advocacy, Rtn. Shankar Subramanian, Chairperson of RAGAMS India Chapter, said MS remains largely invisible to the public. “While its symptoms may not always be seen, the impact on patients and families is continuous and deeply disruptive,” he said. Through initiatives such as Navigating MS Together and Walk In My Shoes, the aim is to improve public understanding of the daily realities of living with MS. He underlined that sustained collaboration between patient groups, clinicians, and policymakers is critical to building a more inclusive and responsive support system.

Offering a clinical perspective, Dr. Rajesh Iyer, Senior Consultant Neurologist at Poorna Neuro Superspecialty Clinics, said MS predominantly affects young adults and can cause severe disability during the most productive years of life if diagnosis and treatment are delayed. Nearly half of patients are at risk of becoming wheelchair-dependent within 15 years if inadequately treated. He also pointed out that life expectancy for MS patients in India remains lower than in many Western countries.

However, the situation is not entirely bleak. Dr. Iyer said the outlook has improved in recent years. With better awareness, timely diagnosis, and access to newer high-efficacy therapies, most people with MS can lead active and independent lives. He stressed that reducing diagnostic delays and ensuring universal access to effective treatment must become a national priority if patients are to live with dignity and hope.

Talking to Health Outlook, Dr. Neha Kapoor, Associate Director & Head of Neurology at Asian Hospital, echoed similar views, stating that women are more likely to get it than men. “In recent years, treatment for MS has improved. There are medicines that tend to slow the disease and reduce attacks. Some Indian companies also make inexpensive versions of those drugs, which has helped a few patients.”

However, challenges are still very serious. MS treatment is very expensive and mostly paid out of pocket. Specialist doctors are mainly available in metro cities, making access difficult for rural patients, she noted.

Dr. Kapoor further said that the government has recognized MS as a disability under the law, which allows patients to seek benefits and tax relief. Awareness programmes are also being held. “However, India needs better data, more public hospitals offering MS treatment, and stronger policy support to help patients live better lives.”

In roughly 80% of cases, the disease involves inflammation in the cerebellum, a region of the brain essential for balance and coordinated movement. Damage in this area can trigger tremors, unsteady motion, and difficulty controlling muscles. Over time, these symptoms often intensify as healthy tissue in the cerebellum is gradually lost, according to the health experts.