Parents of children with autism and cerebral palsy appeal to the President, PM and Supreme Court for a hearing on the stem cell therapy judgment
GURUGRAM: The Parents Forum for Stem Cells in Autism and Cerebral Palsy organised a peaceful protest at Subhash Chandra Bose Park in Gurugram on Sunday, seeking protection of children’s fundamental rights under Article 21 of the Indian Constitution. The Forum also released an open letter addressed to the President of India, the Prime Minister, the Union Health Minister, the Chief Justice of India and all Supreme Court judges.
The protest followed concerns raised by families after the Supreme Court delivered its judgment in Yash Charitable Trust & Ors. v. Union of India & Ors., W.P. (C) 369/2022, concerning stem cell therapy for autism. The Forum said it represents around 5,000 parents and families and urged the authorities to consider the experiences of children who have received the treatment.
Dr Seema Mehrotra, a doctor and mother of an autistic child, shared her personal experience during the demonstration. She said she had observed improvements in her child after stem cell therapy and urged the authorities to consider the experiences of families in a fair and evidence-based manner.
Parents and grandparents joined the gathering to express concerns about the judgment’s potential implications for children who are currently receiving treatment or have undergone the procedure in the past. Sonia, one of the participants, said families wanted an opportunity to present their experiences and concerns before the relevant authorities.
The Forum questioned whether affected families had received sufficient opportunities to present their views during the court proceedings. It also requested due consideration of scientific publications, patient testimonials and other evidence submitted in the case.
In its open letter, the Forum called for a fair assessment of the scientific literature, reported patient experiences and the work of Indian doctors and hospitals. It also urged the authorities to safeguard children’s fundamental rights while considering decisions that could affect their access to care.
The parents expressed concern over the direction to transition children already receiving stem cell therapy to institutions conducting clinical trials. They argued that authorities should consider the availability of suitable trials, the practical difficulties of transferring care and the individual needs of children.
The Forum also highlighted the difference between commercially manufactured stem cell-derived products and autologous cell procedures, in which cells are collected from and returned to the same patient. It called for appropriate consideration of the applicable regulatory framework and the perspectives of families and treating doctors.
According to the organisers, they selected Gurugram for the protest because of reported restrictions on public gatherings in Delhi. They said the demonstration aimed to bring attention to families’ concerns and secure a meaningful opportunity for them to be heard.
The Forum reiterated its appeal for the protection of children’s rights under Article 21 and urged the authorities to consider the medical, scientific and legal issues involved, with particular attention to the welfare and individual circumstances of children with autism and cerebral palsy.
