Parents seek a fair hearing, review of submitted evidence and protection of children’s constitutional rights following Supreme Court judgment
GURUGRAM: Parents and grandparents of children with autism and cerebral palsy gathered at Subhash Chandra Bose Park in Gurugram on Sunday to raise concerns about the Supreme Court’s judgment concerning stem cell therapy for autism. The Parents Forum for Stem Cells in Autism and Cerebral Palsy also issued an open letter urging the authorities to protect children’s fundamental rights under Article 21.
The letter was addressed to the President of India, the Prime Minister, the Union Health Minister, the Chief Justice of India and all judges of the Supreme Court. The Forum called for a meaningful hearing for affected families and careful consideration of the medical, scientific and legal questions surrounding the judgment.
The protest followed the ruling in Yash Charitable Trust & Ors. v. Union of India & Ors., W.P. (C) 369/2022. The Forum said it represents around 5,000 parents and families and wants the concerns of those whose children have undergone stem cell therapy to receive appropriate attention.
Dr Seema Mehrotra, a doctor and mother of an autistic child, spoke about her personal experience with the treatment. She said she had observed improvements in her child after stem cell therapy and urged decision-makers to consider individual family experiences fairly, alongside the available scientific evidence.
Families attending the demonstration expressed concern about how the judgment could affect children who have already undergone treatment or are still receiving it. Sonia, one of the participants, said the protest reflected the collective concerns of families seeking a chance to explain their experiences and circumstances.
The Forum questioned whether parents had received adequate opportunities to present their views during the court proceedings. It called for the consideration of scientific papers, patient testimonials and other evidence placed on record.
Another major concern involved the direction to transition children already undergoing stem cell therapy towards institutions conducting clinical trials. The Forum said the authorities should consider whether suitable trials are available, how families could manage a transfer and what such changes might mean for continuity of care.
The parents also highlighted the distinction between commercially manufactured stem cell-derived products and autologous cell procedures. In the latter, doctors collect cells from the same patient and return them to that individual. The Forum urged the authorities to consider the relevant regulatory framework and the perspectives of patients, parents and treating medical professionals.
The open letter further called for due consideration of the work undertaken by Indian doctors and hospitals. The Forum argued that decisions affecting children’s treatment should account for individual circumstances and the practical challenges families may encounter.
Organisers said they chose Gurugram as the protest venue because of reported restrictions on public gatherings in Delhi. They said their objective was to bring the concerns of families into the public domain and seek a fair opportunity to be heard.
The Forum concluded by appealing to the authorities to protect children’s rights under Article 21 and examine the issues raised by affected families. It emphasised the importance of considering children’s welfare and individual circumstances when addressing questions related to autism, cerebral palsy and stem cell therapy.
