SC Seeks Permanent Lifeline For SMA Care
“Depending on individual circumstances, corporate social responsibility (CSR) contributions may come forward": Chief Justice Kant
NEW DELHI: The Supreme Court on Thursday considered creating a permanent corpus fund to finance treatment for people with spinal muscular atrophy (SMA), a rare and debilitating genetic disorder.
Hearing a suo motu case, a three-judge bench comprising Chief Justice of India Surya Kant, Justice Joymalya Bagchi and Justice V. Mohana said individual charity and ad hoc government grants were insufficient and a regular funding mechanism was needed for life-saving therapies.
“Depending on individual circumstances, corporate social responsibility (CSR) contributions may come forward, or the government may release funds. But what we need is a regular channel, a permanent system. There should be a mechanism for automatic contributions and a regular fund that is maintained,” Chief Justice Kant said.
The court said attention must be given not only to creating the fund but also to ensuring its optimum use.
It asked senior advocate Aprajita Singh, appointed amicus curiae, to submit a comprehensive proposal on generating and sustaining the corpus through avenues including CSR contributions, institutional donors and the Centre.
The bench also asked the Centre, represented by Additional Solicitor General Anil Kaushik, to file an affidavit on the proposed corpus fund.
The matter arose after the NGO SMA Cure Foundation approached the court over jokes made by India’s Got Latent host Samay Raina and other social media influencers about people with disabilities.
On August 14, the court quashed criminal proceedings against Raina and four others over their remarks about people with disabilities. It also appreciated their efforts to spread awareness and promote the dignity of such people.
Taking note of the high cost of SMA treatment, the court ordered the registration of a suo motu case to develop a funding mechanism for patients.