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Medical experts have emphasized the urgent need for an inclusive policy framework and broader insurance coverage for individuals living with multiple sclerosis and haemophilia. They highlight that both conditions require long-term treatment, specialized care, and expensive medications, which often place a heavy financial burden on patients and their families.
Experts argue that comprehensive health policies and insurance support are essential to ensure timely diagnosis, continuous treatment, and improved quality of life for those affected.
The estimated prevalence of multiple sclerosis in India is 8–10 per 100,000, affecting over 75,000 to 1.8 lakh people. It predominantly affects young adults, with a higher prevalence in women, and a peak onset age around 31-32 years.
Dr R Sureshkumar, senior consultant neurologist, Renai Medicity Multi Super Specialty Hospital, Kochi, said that in multiple sclerosis, the goal of treatment is clear. One is to prevent disability and the second is to preserve long-term function. Yet, the current practice of ‘escalation therapy’ often misses a critical window of opportunity, because multiple sclerosis is both inflammatory as well as degenerative from the early stages.
Off-label treatments may seem convenient, but what truly matters is robust, long-term evidence, both from clinical trials and real-world experience because multiple sclerosis is a lifelong journey. As neurologists, we bear a huge responsibility to ensure patients receive the best care possible. We recognize gaps in the care continuum, challenges in access, and the absence of standardized treatment guidelines, he added.
Therefore, there is a need to create a fair and equitable multiple sclerosis care ecosystem in India. This requires an inclusive policy framework that ensures comprehensive insurance coverage and acknowledges invisible disabilities without arbitrary limits. Addressing these are not optional, it is a collective imperative. After all, living with multiple sclerosis is a marathon, not a sprint, and our healthcare system must be resilient enough to run it alongside our patients, said Dr Sureshkumar.
Another disorder in India is haemophilia. The country accounts for one of the world's highest burdens of haemophilia, with approximately 130,000 to 136,000 estimated cases.
From a haemotologist perspective, Dr Anupam Dutta, Associate Professor, Department of Medicine, Incharge of Haemophilia Treatment Centre, AMCH, said in haemophilia, preserving joint health is key to preventing long-term disability caused by recurring bleeds. Protecting children from bleeds means preserving their childhood and allowing them to live without fear. On-demand therapy may stop a bleed after it occurs, but it cannot prevent the damage that accumulates over time.
Also, prophylaxis is the globally accepted standard of care that prevents bleeds before they happen, safeguarding joints and quality of life. Advances like subcutaneous administration make prophylaxis easier and more effective, especially for high-bleeders, infants with difficult IV access, and patients in remote areas, he added.
Our country has an opportunity to strengthen its policy framework to make prophylaxis the standard for all patients, ensuring every person with haemophilia can live healthier, fuller lives. The need of the hour is that clinicians, payors and policymakers should consider the overall value proposition of a therapy to holistically evaluate its cost effectiveness and clinical benefits, said Dr Dutta.
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