Experts, Organisations Warn Parents Against Stem Cell Therapy for Autism

NGOs, doctors and medical professionals, parent advocates, and autistic self-advocates have come out with a statement on the occasion of International Day of Persons with Disabilities, on December 3, raising concerns about the alarming rise in centres and clinics offering “Stem Cell Therapy” as a “cure” or an “effective treatment” for autism. In fact, stem cell research for autism is still at a nascent stage and has not been medically permitted as a “therapy” or a “treatment” for autism. The statement added, “Further, such centres and clinics appear to charge exorbitant fees, putting families under financial pressure such that many families have had to sell their valuables and properties and have gone into debt to cover the expenses for this

‘treatment’.” The organisations have appealed to parents to make an informed decision regarding subjecting their children with autism to stem cell research that is allegedly being marketed as a treatment or cure in an unethical manner.

They have also urged the government bodies to implement the Indian Council of Medical Research (ICMR) guidelines in letter and in spirit, which forbid charging money to the autistic person’s family for any such research by medical centres and clinics. In future, the organisations, and others who have signed the statement, plan to create awareness about the facts of the matter among the families of autistic persons and take up the matter with the official authorities.

ICMR, the premier scientific body for medical research in India, in their Guidelines for Stem Cell Therapy, 2021, vis-a-vis the therapeutic use of stem cells for autism has stated that “the unethical and unregulated use of stem cells, often promoted as a magical remedy is not allowed by the government in the developed world and many Low and Middle Income Countries (LMIC) including India”, and that “…some unlicensed or even licensed and registered medical practitioners engage in unethical practices of selling unproven stem cell therapy as a magical remedy to desperate families with incurable and potentially fatal diseases with little or no hope of cure from other methods”.

The ICMR guidelines clearly state, “Critical review of the studies reported so far does not support the use of stem cell therapy over and above the behavioural and supportive therapies for Autism Spectrum Disorder”. It also adds, “Based on the review of available scientific evidence, stem cell therapy should NOT be offered as a standard or routine therapy to patients with Autism”.

The ICMR Guidelines have listed the clinical trials approved by the International Society for Stem Cell Research (ISSCR), which does not include any clinical trial for autism, Down’s Syndrome, ADHD and other such developmental conditions as also intellectual

Disability. On the expenses incurred for Stem Cell Therapy, the ICMR guidelines state, “Participants in a clinical trial should not be made to pay for any expenses incurred beyond routine clinical care and which are research related including tests, investigations and any interventions (such as stem cells).” It also adds that participants in a clinical trial should be provided compensation in the event of any harm or permanent injury or death caused due to the use of experimental stem cell therapy.

The statement said, “Over the years, many families of individuals with autism have been misled by the aggressive marketing tactics used by these centres and have wasted lakhs of rupees to provide this ‘treatment’ for their child and some have almost gone bankrupt in the process.”

The statement has appealed to all parents of persons with autism and other developmental or intellectual conditions to understand that stem cell therapy is not a cure for autism, and to not pay any amount, following the ICMR guidelines, in case they choose to enrol their wards with autism for any research trial involving stem cells.

The signatories include 44 well-known Organisations, including Action for Autism, Delhi, Autism Society West Bengal, Ummeed Child Development Centre, and National Platform for the Rights of the Disabled, 117 prominent doctors and other professionals, 68 parent advocates, 11 autistic self-advocates, and 78 others.