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India’s Rare Disease Treatment Faces Access and Cost Challenges

Opinion

Business Honor
07 April, 2025

Despite the recognition of health as a fundamental right, access to treatment for rare diseases in India remains limited and costly.

Three decades have gone by since the Supreme Court held the right to health and medical treatment as a fundamental right under Article 21 of the Constitution. Even after this, the Union Ministry of Health and Family Welfare (MoHFW) is still not doing enough to ensure this right for rare disease patients. The recent news about the National Policy for Rare Diseases (NPRD) brings to the fore a significant gap in India's healthcare system, wherein the treatment of rare diseases is still out of reach and too expensive for most.

As per the National Registry for Rare and Other Inherited Disorders, more than 13,000 patients are registered, with several times more likely to be unaccounted for. But while there is the clear mandate under Article 41 of the Directive Principles of State Policy for public aid in the event of sickness, the government assistance is inadequate and limited. The NPRD, launched in March 2021, was a step in the right direction, but the absence of timely implementation and the tight funding cap have left patients in no position to pursue life-saving treatments.

For example, treatment for Spinal Muscular Atrophy (SMA) using risdiplam costs more than Rs 72 lakh per year, whereas the government subsidy is limited to Rs 50 lakh per patient, which very soon exhausts. Patients have been compelled to approach the courts to receive additional treatment, while the MoHFW remains in no hurry to resolve this issue.

Domestic manufacturing of medicines, a major requirement under the NPRD, holds a promise of solution. If the government manages to combat patent monopolies and promote local production, prices for essential drugs might be significantly brought down, increasing access to life-saving treatments among those in need.

The government needs to move quickly to assure that no family has to experience the hardship of losing a member because treatment is unaffordable. India is overdue in its commitment to advancing the health and well-being of its people, particularly those afflicted with rare life-threatening diseases.