CJI Chandrachud calls for universal access to gene therapy, greater awareness about rare diseases

Delivering the inaugural address at a two-day event titled, “Gene Therapy & Precision Medicine
Conference” at Bengaluru, Justice Chandrachud said that India faces a heightened burden of rare diseases in India.

Chief Justice of India (CJI) D Y Chandrachud on Sep 21 emphasized the urgent need for universal access to gene therapy that helps correct rare genetic disorders and said greater awareness must be created about rare diseases in society.

He further urged everyone to be empathetic and supportive of such parents and their families irrespective of cultural, religious, or traditional barriers.

Gene therapy is prohibitively expensive and beyond the reach of most parents. Chandrachud said India can no longer afford to be unaware of genetic diseases.

Sharing over 40 years of experience in the legal profession in different capacities with a decade-long emotional attachment with his adopted girls afflicted with a genetic disorder, the CJI referred to thousands of parents battling to provide their affected children with a future better than what stars had predicted.

Delivering the inaugural address at a two-day event titled, “Gene Therapy & Precision Medicine
Conference” at Bengaluru, organized by Narayana Nethralaya Foundation, Justice Chandrachud said, “We face a heightened burden of rare diseases in India, a country — home to the largest population in the world — with over 4,600 distinct population groups, many of which are endogamous,”

“Unfortunately, these innovative therapies remain largely unavailable in India and other low and middle-income countries. This is a situation, which we should strive to change," he added.

Mentioning India’s first home-grown gene therapy for cancer which was launched by President Droupadi Murmu in April, the CJI said, “The CAR T cell therapy has often been inaccessible globally due to its prohibitive costs."

"But the therapy introduced today is not only revolutionary but also represents the world's most
affordable CAR T cell treatment, embodying the spirit of the Make in India initiative. While this
innovation must be acknowledged, we face a pressing challenge ensuring access to such treatments for all patients, particularly those in underserved regions," he added.

The CJI noted people from marginalized communities face grave difficulties in accessing healthcare.

"Social determinants of health factors outside the healthcare system, such as class, caste, gender, and regional location, often play a significant role in determining an individual's health status,” he said.

“Injustice in healthcare becomes evident when we view individuals not merely through the lens of clinical symptoms but by understanding their social determinants of health. This reality highlights a pressing need for targeted interventions that address these systemic barriers," he added.

Chandrachud also emphasized how access to essential treatments is a fundamental aspect of the right to health, along with Article 21 of the Constitution (protection of life and personal liberty) and the need to formulate strategies that enhance access to cutting-edge precision diagnostics and gene therapies across the nation.

He said raising awareness among healthcare providers and patients about available treatments and ongoing clinical trials can empower more people to seek and receive appropriate care.

“To truly address accessibility, we must confront the third key issue, which is affordability,” he noted.
The CJI called for effectively addressing challenges and prioritizing the development of indigenous technologies specifically tailored to the patient population in the country.

“This involves building partnerships between research institutions, pharmaceutical companies, and the government to promote innovation in the creation of affordable therapies. The government must stand behind our innovations in the treatment of rare diseases, putting its spine behind the evolution of technology,” he added.