Parents Seek Supreme Court Hearing on Stem-Cell Therapy Ruling

A group of parents of children with autism and cerebral palsy has sought an opportunity to present its concerns before the Supreme Court following the court’s recent ruling concerning stem-cell therapy. The families say they want their concerns, scientific material and treatment experiences to be considered before decisions are taken that could affect children who are already undergoing treatment.

The issue was raised by the Parents Forum for Stem Cells in Autism and Cerebral Palsy during a press conference in New Delhi. The association says it represents around 5,000 families who have been following developments related to stem-cell treatment and its regulatory status.

Parents Say They Want to Be Heard

According to the forum, it is a respondent in the case concerning stem-cell therapy and had sought permission for its lawyer to make oral submissions during an earlier hearing.

The parents say they were instead asked to submit their arguments in writing. They are now requesting an oral hearing so that representatives of affected families can explain their concerns directly before the court.

The forum believes that an oral hearing would allow the court to better understand the practical difficulties faced by families whose children are already receiving treatment.

For the parents, the issue is not limited to the legal interpretation of stem-cell therapy. They say it also involves questions about treatment continuity, clinical-trial eligibility, scientific research and the availability of alternatives.

Concerns About Children Already Receiving Treatment

One of the major concerns raised by the families relates to children who are already undergoing stem-cell therapy.

The forum says that if ongoing treatment is discontinued, families need clear information about what alternative options may be available. It has also questioned whether every child would be able to participate in a clinical trial.

Clinical trials generally operate under specific eligibility requirements. According to the parents’ association, some children who have previously undergone stem-cell procedures could face difficulties in meeting such requirements.

The families therefore want the implications for children currently receiving treatment to be considered separately rather than assuming that a clinical trial would automatically be available to every patient.

Families Share Their Personal Experiences

Parents and relatives of children with autism and cerebral palsy also shared their individual experiences during the New Delhi press conference.

Some families described changes they said they had observed in their children following stem-cell treatment. These included improvements in mobility, communication, understanding and everyday activities.

Such accounts are personal experiences and do not by themselves establish the clinical effectiveness of a treatment. However, the parents’ forum says these experiences, together with clinical records and scientific literature, should be available for consideration when examining the broader issue.

Dr. Sandhya Gokavarapu, a parent of an autistic child and a Maxillofacial and Head & Neck Oncology Surgeon from Hyderabad, highlighted the concerns of families whose children are already receiving treatment.

The forum also heard from Dr. Seema Mehrotra, a mother of an autistic child, Dental Surgeon and Rehabilitation Psychologist from Jabalpur, who discussed her own child's treatment experience.

Arun Kumar Tiwari, a parent of an autistic child and Vice President of the Parents Forum, represented the association during the event. A 73-year-old grandmother from Pune also spoke about concerns surrounding the continuity of treatment for her autistic grandchild.

Forum Says It Submitted Research Papers

The Parents Forum says it has submitted 82 peer-reviewed research papers along with clinical records, family testimonials and other material.

The association wants the submitted evidence to be examined as part of any further consideration of the matter. It argues that decisions concerning stem-cell therapy should take into account scientific research as well as the practical circumstances of families.

The forum has particularly emphasized the importance of examining evidence relating to children who have already undergone treatment.

The parents also want clarity on whether previous treatment could affect a child's eligibility for future clinical trials.

Questions About the Regulatory Framework

Another part of the parents’ concerns relates to the legal and regulatory framework surrounding autologous stem-cell procedures.

Autologous procedures generally involve collecting cells from a patient and administering the patient's own cells back to that individual. The forum has raised questions about how such procedures are treated under India's existing regulatory framework.

It has referred to provisions of the Drugs and Cosmetics Act, 1940, and the New Drugs and Clinical Trials Rules, 2019. The association has also pointed to the role of the Central Drugs Standard Control Organisation, or CDSCO, in India's drug regulatory system.

The parents are seeking greater clarity about how these regulations apply to the procedures in question.

Health and Treatment Concerns Remain Central

At the centre of the parents' appeal is the question of what happens to children who are already receiving treatment.

The families say that stopping an ongoing treatment without establishing whether a suitable alternative is available could create uncertainty for parents. They are therefore asking the Supreme Court to hear their concerns and examine the information they say has already been submitted.

The forum has also referred to the right to health under Article 21 of the Constitution while presenting its demands.

Its requests include an oral hearing, consideration of clinical records and family testimonials, examination of the scientific literature submitted to the court, and consideration of the practical consequences for children undergoing treatment.

Why the Issue Matters to Families

The debate surrounding stem-cell therapy involves several different aspects, including medical evidence, regulation, clinical trials and individual treatment experiences. For families of children with autism and cerebral palsy, however, the issue also has an immediate practical dimension.

Parents seeking treatment need to understand what options are legally and medically available, whether their children meet clinical-trial requirements and what alternatives may exist if an existing treatment pathway changes.

The Parents Forum says its objective is therefore to ensure that the concerns of affected families are heard before further decisions affect children already undergoing treatment.

The group continues to seek an oral hearing before the Supreme Court and wants the scientific and clinical material it has submitted to be considered.

For a detailed report on the parents’ demands and their request for an opportunity to present their case, readers can also refer to the full report on the Supreme Court stem-cell therapy ruling and the parents’ response.