India, renowned for its progress in the pharmaceutical sector, is now grappling with a pressing issue the development and production of drugs for rare diseases. Despite the country’s success in manufacturing cost-effective medicines for widespread health conditions, rare or orphan diseases have largely been overlooked. Globally, there are over 7,000 identified rare diseases, and more than 70 million people in India are affected by them. The limited availability of treatment options for these conditions is becoming an increasingly serious public health challenge.
Rare diseases such as Duchenne muscular dystrophy, Gaucher disease, and spinal muscular atrophy often go undiagnosed or untreated due to high drug costs and limited availability. Currently, most of the treatments for these diseases are imported, making them prohibitively expensive for the average Indian. For instance, gene therapy for spinal muscular atrophy can cost over ₹16 crore, placing it far beyond the reach of even middle-income families. Moreover, the absence of domestic production makes these treatments scarce and difficult to access.
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India need for Policy Support and Research Investment
To address this issue, India needs a multi-pronged approach. First, the government should offer incentives to pharmaceutical companies to research and produce orphan drugs. Tax breaks, subsidies, and funding grants can encourage investment in this crucial sector. Additionally, collaboration between government research institutions and private industry can accelerate the development of affordable treatment options.
The National Policy for Rare Diseases, introduced in 2021, is a positive step, but implementation remains slow. It is essential to create awareness among healthcare professionals and the public to ensure early diagnosis and intervention. Establishing patient registries, improving diagnostics, and setting up centers of excellence can also help streamline care.
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Ultimately, making rare disease drugs in India is not just a health priority but a moral imperative. With strategic planning and commitment, India can become a global leader in affordable treatments for rare diseases, offering hope to millions.