Families ask the court to hear their concerns over children already receiving stem-cell treatment
NEW DELHI: Parents of children with autism and cerebral palsy have asked the Supreme Court to hear their concerns over its recent ruling on stem-cell therapy. The families said they want the court to consider scientific material and treatment records before deciding issues affecting children who are already undergoing therapy.
The Parents Forum for Stem Cells in Autism and Cerebral Palsy, which represents around 5,000 families, raised the demand at a press conference at Andhra Bhavan in New Delhi on Saturday.
Parents Ask Court for Oral Hearing
The Forum is a respondent in Yash Charitable Trust & Ors. v. Union of India & Ors. It said its counsel requested an opportunity to address the Supreme Court during the first hearing in January 2025.
According to the Forum, the court asked its counsel to submit written arguments instead.
The parents now want an oral hearing so they can explain their concerns directly to the bench.
“Our first demand is simple: hear us,” the Forum said.
Families Question Direction on Stem-Cell Treatment
The Forum said the recent ruling does not allow stem-cell therapy for autism to continue as routine treatment and directs children receiving such therapy towards institutions conducting clinical trials.
The parents said they have not found suitable clinical trials for their children. They argued that stopping ongoing treatment without identifying an available alternative could create further difficulties for families.
The Forum also questioned whether children who have already received treatment would meet the eligibility conditions for clinical trials.
Dr. Sandhya Gokavarapu, a Hyderabad-based Maxillofacial and Head & Neck Oncology Surgeon and mother of an autistic child, said doctors and families need clarity before making changes to ongoing treatment.
“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,” she said.
Parents Describe Changes They Observed
Parents from different parts of India shared their experiences at the press conference.
Dr. Seema Mehrotra, a mother of an autistic child, Dental Surgeon and Rehabilitation Psychologist from Jabalpur, spoke about changes she said she observed after her child received stem-cell therapy.
She said she noticed improvements in mobility, communication, understanding and everyday activities.
Other families also discussed their children’s treatment journeys and said they had provided clinical records, testimonials and scientific papers to the Forum.
Deepa, a 73-year-old grandmother from Pune who cares for her autistic grandchild, also spoke about her concerns over continued access to treatment.
Forum Says It Submitted 82 Research Papers
The Parents Forum said it submitted 82 peer-reviewed research papers, along with clinical records and other supporting material.
The association wants the Supreme Court to examine these documents while considering the impact of its ruling on children who are already receiving treatment.
The parents said a move from existing treatment to clinical trials may not be straightforward because previously treated children could face eligibility restrictions.
Association Raises Regulatory Questions
The Forum also raised questions about the regulatory framework for autologous stem-cell procedures.
These procedures use a patient’s own cells, which doctors collect and return to the same patient.
The association said the court should consider the definition of “drug” under the Drugs and Cosmetics Act, 1940, along with provisions under the New Drugs and Clinical Trials Rules, 2019.
It also referred to the regulatory framework administered by the Central Drugs Standard Control Organisation (CDSCO).
Parents Seek Review of Scientific Evidence
Arun Kumar Tiwari, a parent of an autistic child and Vice President of the Parents Forum, said the families want the court to examine the evidence they have submitted.
“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,” he said.
The Forum has sought an oral hearing, consideration of the right to health under Article 21, examination of family records and testimonials, and an independent review of the scientific material submitted before the court.
The families said they want clarity on treatment options for children who are already undergoing stem-cell therapy.
