Multiple Sclerosis Isn’t Rare For Those Who Live With It, All They Need Is An Ecosystem

(By Dr. Pramod Krishnan)

Multiple Sclerosis (MS) may be considered a rare disease in India, but for the thousands living with its unpredictable symptoms and progressive nature, it is anything but rare. MS is a chronic, progressive disease that affects the brain and spinal cord, causing inflammation and damage to the myelin sheath, the protective covering of nerve fibres. This damage disrupts the transmission of nerve signals, leading to a wide range of neurological symptoms. 

Once a low-risk zone, India is transitioning to a moderate MS risk region, with prevalence rates increasing from 1.33 per 100,000 to an estimated 8.35 per 100,000 people. An estimated 1.5 to 2 lakh individuals living with MS in India, while the diagnosed prevalence stands at a poor 35%. MS particularly affects women aged 20 to 40. These statistics fail to capture the profound personal impact of MS. The most productive years of one’s life that should be spent building a family and career, are spent navigating the complexities of this debilitating disease. The symptoms of MS can vary widely - from muscle weakness, numbness, and fatigue to vision problems, cognitive impairment, and balance issues. If left untreated, MS can lead to irreversible damage and significant disability, severely impacting quality of life and economic productivity.

Challenges For MS Patients

The journey of an MS patient in India is often fraught with challenges. Firstly, diagnosis can be significantly delayed due to limited awareness among both the public and healthcare professionals, particularly in rural areas. Misdiagnosis is also very common owing to variability of symptoms, and overlapping features with other neurological conditions. The majority of Indians have limited access to centres of neurological excellence in the country. Patients in remote regions often travel hundreds of kilometres for an expert opinion, losing crucial "golden hours" for early intervention.

Secondly, access to treatment remains a major hurdle. While India offers advanced disease-modifying therapies (DMTs), a mere 10% of the diagnosed patient pool are benefitting from it. There is an urgent need to create awareness about early initiation on high efficacy treatments (HETs) that have the potential to slow down disease progression, prevent disability, ultimately leading to better patient outcomes. Early induction of HETs offer less cumbersome treatment regimes, reduce the need for multiple hospital visits, rehabilitation, and long-term care, thereby easing pressure on the health system and freeing up infrastructure.

Additionally, there’s a need for a more inclusive approach in recognizing disability and providing appropriate benefits, especially for those MS patients who experience less severe or “invisible symptoms”, so that these patients can avail fair and comprehensive insurance coverage. Only a fraction of insurance plans cover chronic conditions like MS, leaving patients to bear overwhelming out-of-pocket expenses and navigate a system that fails to meet their needs.

There are huge gaps along the entire patient care continuum from diagnosis to access to specialists and MS treatment centers, to affordability to lack of standard guidelines and protocol for disease management. By fostering awareness, improving access to diagnosis and treatment, and building a truly inclusive society, India can empower individuals living with MS to lead fulfilling and dignified lives. This is not just a medical imperative, but a societal responsibility.

Dr. Pramod Krishnan is Head of the Department and Senior Consultant in Neurology, Epileptology, and Sleep Medicine at the Manipal Hospitals, Bengaluru.

[Disclaimer: The information provided in the article, including treatment suggestions shared by doctors, is intended for general informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.]

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