Families of children with autism and cerebral palsy write to top constitutional authorities, raising concerns about treatment access and children’s rights
GURUGRAM: The Parents Forum for Stem Cells in Autism and Cerebral Palsy held a peaceful demonstration at Subhash Chandra Bose Park in Gurugram on Sunday, appealing to the authorities to hear the concerns of families affected by the Supreme Court’s judgment on stem cell therapy for autism.
During the protest, the Forum released an open letter 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 letter sought protection of children’s rights under Article 21 of the Constitution and requested a fair review of the concerns raised by parents.
The demonstration centred on the judgment in Yash Charitable Trust & Ors. v. Union of India & Ors., W.P. (C) 369/2022. The Forum said it represents approximately 5,000 parents and families and wants the authorities to consider the circumstances of children who have already received stem cell therapy.
Dr Seema Mehrotra, a doctor and parent of an autistic child, participated in the demonstration and spoke about her family’s experience. She said she had witnessed improvement in her child following the treatment and maintained that the experiences of parents should receive fair consideration alongside scientific evidence.
Other parents and grandparents expressed apprehension about the possible consequences of the judgment for children who have undergone the procedure or continue to receive treatment. Sonia, a participant, said the gathering represented families seeking recognition of their experiences and an opportunity to explain their concerns.
The Forum raised questions about the opportunity available to affected families to present their views during the legal proceedings. It asked the authorities to consider scientific papers, patient accounts and other material submitted in the case before taking decisions that could affect children’s treatment arrangements.
The open letter also addressed concerns over the direction to transition children receiving stem cell therapy towards institutions conducting clinical trials. According to the Forum, the availability of appropriate trials, continuity of care and the challenges families may face during a transfer require careful consideration.
The parents also called attention to the distinction between stem cell-derived products manufactured by companies and autologous cell procedures, which involve collecting cells from a patient and returning them to the same individual. They urged the authorities to consider the relevant regulatory provisions and the views of treating doctors and families.
The organisers said they held the demonstration in Gurugram because of reported restrictions on public gatherings in Delhi. They described the protest as an effort to bring their concerns into public discussion and seek a meaningful hearing.
The Forum urged the authorities to assess the scientific, medical and legal questions surrounding the issue while keeping the welfare of children with autism and cerebral palsy in view. It reiterated its request for a fair opportunity for affected families to present their concerns and for protection of children’s fundamental rights under Article 21.
