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Supreme Court Seeks Centre’s View on SMA Treatment Corpus Fund
The Supreme Court is considering a lasting fund to help people with SMA pay for treatment.
SMA is a serious genetic illness, and its treatment can be very expensive.
The judges said one-time donations and occasional government help may not be enough.
They want a regular way to collect and use money.
The court asked a lawyer helping it to suggest how the fund could be supported.
Possible sources include companies, institutions and the government.
The Centre must also explain its position in a court filing.
The case came to the court after an organization raised concerns about jokes about people with disabilities.
The Supreme Court considered creating a corpus fund to help pay for treatment for people with spinal muscular atrophy (SMA).
The bench said funding should be regular and permanent, rather than relying on individual charity or ad hoc government grants.
The court asked amicus curiae Aprajita Singh to propose ways to raise and sustain the fund, including CSR, institutional and government contributions.
The Centre was asked to file an affidavit on the proposed corpus fund.
The case began after the SMA Cure Foundation raised concerns about jokes concerning people with disabilities; the court later quashed criminal proceedings against five people over the remarks.
- Who
- A Supreme Court bench led by Chief Justice Surya Kant, with Justices Joymalya Bagchi and V Mohana; the Centre was also asked to respond.
- What
- The court considered a permanent corpus fund for treatment of people with spinal muscular atrophy (SMA).
- Where
- The Supreme Court in New Delhi.
- When
- The report is dated October 8; it also says the court quashed related criminal proceedings on August 14.
- Why
- The court said expensive SMA treatment needs a regular, sustainable funding mechanism rather than ad hoc donations and grants.
Key facts
- Condition
- Spinal muscular atrophy (SMA), described in the report as a rare and debilitating genetic disorder
- Proposal
- A corpus fund to support treatment for people with SMA
- Amicus curiae
- Senior advocate Aprajita Singh
- Requested sources
- Corporate social responsibility contributions, institutional donors and the central government
- Court direction
- The Centre was asked to file an affidavit on the corpus fund question
- Origin of case
- The SMA Cure Foundation brought concerns about jokes concerning people with disabilities to the court’s attention
- August 14 order
- The court quashed criminal proceedings against Samay Raina and four others over remarks about people with disabilities
Quotes
Chief Justice Surya Kant
Chief Justice of India and member of the Supreme Court bench hearing the case
“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.”
theprint.in
Sources
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