Families say they were not heard during the proceedings and want the court to review scientific evidence and treatment concerns

New Delhi: Parents of children with autism and cerebral palsy have urged the Supreme Court to allow an oral hearing on its recent ruling on stem-cell therapy. The families said the court should hear their concerns before taking steps that could affect children already receiving the treatment.

The Parents Forum for Stem Cells in Autism and Cerebral Palsy, a registered association representing around 5,000 families, raised the demand at a press conference at Andhra Bhavan in New Delhi on Saturday.

Parents Say They Were Not Heard

The Forum is a respondent in Yash Charitable Trust & Ors. v. Union of India & Ors. It said its lawyer sought permission to address the bench during the first hearing in January 2025 but the court asked the counsel to submit written arguments instead.

The parents now want the Supreme Court to give them an opportunity to present their case orally and explain the evidence and records they have submitted.

“Our first demand is simple: hear us,” the Forum said.

Families Raise Concerns Over Ongoing Treatment

According to the Forum, the Supreme Court’s ruling says stem-cell therapy for autism should not continue as routine treatment and directs children undergoing the therapy towards institutions conducting clinical trials.

The parents said they have not found suitable clinical trials for their children. They also raised concerns about stopping treatment without first identifying an appropriate alternative.

The Forum said children already undergoing treatment may also face difficulties in joining clinical trials because of eligibility conditions.

Dr. Sandhya Gokavarapu, a parent of an autistic child and a Maxillofacial and Head & Neck Oncology Surgeon from Hyderabad, said families need clarity before doctors stop 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 Share Their Children’s Treatment Experiences

Several parents and family members from different parts of India spoke about their children’s treatment journeys at the press conference.

Dr. Seema Mehrotra, a mother of an autistic child, Dental Surgeon and Rehabilitation Psychologist (RCI Registered) from Jabalpur, described changes she said she observed in her child after stem-cell therapy.

She cited improvements in mobility, communication, understanding and daily activities.

Arun Kumar Tiwari, a parent of an autistic child and Vice President of the Parents Forum, represented the association during the event.

Deepa, a 73-year-old grandmother from Pune who cares for her autistic grandchild, also spoke about her concerns regarding the continuity of treatment.

The Forum said parents had submitted clinical records, personal testimonials and scientific literature to support their concerns.

Forum Says It Submitted 82 Research Papers

The Parents Forum said it submitted 82 peer-reviewed research papers, along with clinical records and other material, for consideration.

The association wants the court to examine this material while considering the impact of the ruling on children who are already receiving treatment.

The parents also questioned whether children who have previously undergone stem-cell procedures would qualify for ongoing or future clinical trials.

Parents Question Regulatory Framework

The Forum also raised questions about the regulatory framework governing autologous stem-cell procedures. These procedures involve collecting a patient’s own cells and returning them to the same patient.

The association said the court should examine 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 role of the Central Drugs Standard Control Organisation (CDSCO) in the broader framework governing such procedures.

Forum Seeks Oral Hearing and Review of Evidence

Arun Kumar Tiwari said the families want the Supreme Court to hear their concerns and examine the material they have placed before it.

“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 called for an oral hearing, consideration of the children’s right to health under Article 21 of the Constitution, examination of family testimonials and clinical records, and an independent review of the scientific material submitted before the court.

The parents said their immediate concern is to ensure that children already undergoing treatment do not lose access to care without a clear alternative.