Parents Seek Supreme Court Hearing on Stem-Cell Therapy Ruling, Say They Were Not Heard
New Delhi : Parents and family members of children with autism and cerebral palsy gathered in New Delhi on Saturday to seek an oral hearing before the Supreme Court on its recent ruling on stem-cell therapy.
The demand came from the Parents Forum for Stem Cells in Autism and Cerebral Palsy, a registered association representing around 5,000 families. Parents attended a press conference at Andhra Bhavan, where they shared their experiences and concerns about the ruling.
The Forum is a respondent in Yash Charitable Trust & Ors. v. Union of India & Ors. It said its counsel sought permission to address the bench during the first hearing in January 2025 but was asked to submit written arguments instead.
The parents said the ruling directs that stem-cell therapy for autism should not continue as routine treatment and that children undergoing it should be shifted to institutions conducting clinical trials. The Forum said no suitable trials are currently available for these children and opposed stopping ongoing treatment without a clear alternative.
“Our first demand is simple: hear us,” the Forum said, urging the court to consider the evidence and experiences submitted by families.
Parents and family members of autistic children from different parts of the country spoke at the press conference about their children’s treatment journeys and the changes they said they had observed following stem-cell therapy. Dr. Seema Mehrotra, a mother of an autistic child and a Dental Surgeon and Rehabilitation Psychologist (RCI Registered) from Jabalpur, shared her personal experience. Dr. Sandhya Gokavarapu, a mother of an autistic child and a Maxillofacial and Head & Neck Oncology Surgeon from Hyderabad, spoke about the importance of continuity of treatment. Arun Kumar Tiwari, also a parent of an autistic child and Vice President of the Parents Forum, represented the Forum and spoke on behalf of the families. Deepa Ji, a 73-year-old grandmother from Pune caring for her autistic grandchild, shared her concerns about her grandchild’s treatment.
Dr. Mehrotra spoke about improvements she observed in her child after stem-cell therapy, including changes in mobility, communication, understanding and daily activities. Other parents also shared their experiences and said they had submitted clinical records, testimonials and scientific literature.
The Forum said it had submitted 82 peer-reviewed research papers, clinical records and other material for review.
The parents questioned the direction to move children already undergoing treatment into clinical trials, saying previously treated children could face eligibility restrictions.
Dr. Gokavarapu said, “A child already undergoing treatment cannot simply be told to stop without addressing whether an appropriate clinical trial exists and whether that child is eligible.”
The Forum challenged the regulatory framework governing autologous stem-cell procedures, in which a patient’s own cells are collected and returned to the same patient. It said the definition of “drug” under the Drugs and Cosmetics Act, 1940, should be considered alongside the New Drugs and Clinical Trials Rules, 2019, and the framework administered by the Central Drugs Standard Control Organisation (CDSCO).
Arun Kumar Tiwari said, “We are asking the court to hear us, examine the evidence we have submitted and consider the consequences of the judgment for children who are already undergoing treatment.”
The Forum has called for an oral hearing, protection of children’s right to health under Article 21, consideration of family testimonials and records, and an independent review of the scientific material placed before the court.
