Chief Justice of India D Y Chandrachud emphasized the need to make expensive gene therapy accessible to all, particularly in rural areas. Speaking at a conference in Bengaluru, he pointed out financial challenges and urged for indigenous solutions, increased societal awareness, and industry involvement. He called for CSR initiatives and tax incentives to make these life-saving treatments more affordable and widespread.
Bengaluru: Chief Justice of India D Y Chandrachud, delivered an impassioned speech on the pressing need for universal access to gene therapy, which treats rare genetic disorders but remains prohibitively expensive for most families.
Drawing from his over 40 years in the legal field, including 24 years as a judge in the High Court and Supreme Court, as well as his personal experience caring for his adopted daughters with genetic disorders, the CJI gave voice to the struggles of thousands of parents striving to offer their children a brighter future than fate had predicted.
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In his inaugural address at the “Gene Therapy & Precision Medicine Conference” In Bengaluru, Chief Justice of India D Y Chandrachud emphasized the importance of making gene therapy accessible beyond urban areas, stating,
“The quest to treat rare diseases is futile if access to these treatments remains a challenge, especially outside major urban centres.”
He highlighted how factors like class, caste, gender, and location significantly influence an individual’s health, asserting that access to essential treatments is a fundamental part of the right to health under the right to life.
Leading many families to turn to crowd funding. Addressing the high cost of gene therapy, he noted,
“Approved gene therapies in the West range from Rs 7 to 30 crores per treatment, making them unaffordable for most in India,”
While recognizing government efforts to provide insurance up to Rs 50 lakhs, the CJI called for the development of indigenous, cost-effective technologies and urged the industry to support this through Corporate Social Responsibility (CSR) initiatives, direct investment, and tax incentives, especially given the small market for rare disease treatments.
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In his concluding remarks, Chief Justice D Y Chandrachud stressed the importance of respecting an individual’s fundamental right to decide whether to participate in genetic therapy clinical trials.
He stated,
“Patients must be fully informed about potential outcomes, risks, and alternatives. It is essential that they have the freedom to make decisions about their health without any form of coercion, ensuring their autonomy is always respected.”
In summary, Chief Justice Chandrachud’s address a passionate plea for making life-saving gene therapies accessible and affordable for all, highlighting the need for policy reform, indigenous innovation, and industry collaboration.