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CJI Calls for Universal Access to Gene Therapy

NextEdge Admin

22 Sep 2024

2 min 23 sec

Precision Medicine,Corporate Social Responsibility

Chief Justice of India D Y Chandrachud made an impassioned plea for universal access to gene therapy for rare genetic disorders, which remains out of reach for most due to its prohibitive cost. Speaking at the “Gene Therapy & Precision Medicine Conference” in Bengaluru, he highlighted that approved gene therapies in the West cost between Rs 7 to 30 crores, leading many families to resort to crowdfunding. He underscored the importance of addressing this gap, particularly for families outside urban centers, and framed access to these treatments as part of the fundamental right to health, guaranteed under the right to life.

Justice Chandrachud pointed out that factors such as class, caste, gender, and regional location significantly impact health outcomes and access to care. He praised government efforts to provide insurance coverage up to Rs 50 lakhs but noted that the real solution lies in developing indigenous, affordable technologies suited to the Indian population. He urged industries to step up through Corporate Social Responsibility (CSR) initiatives or direct investments in startups, while advocating for tax incentives to encourage participation in the small but critical market for rare disease treatments.

Additionally, Justice Chandrachud emphasized the need for greater societal awareness and cultural support for patients with genetic disorders. He concluded by stressing the importance of respecting patients' autonomy in deciding whether to undergo gene therapy, ensuring they are fully informed of the risks, outcomes, and alternatives before making such crucial health decisions.