DYFI Protests at Thiruvananthapuram Medical College Over Distribution of SMA Drugs Labelled ‘For Clinical Trials Only’

Thiruvananthapuram: The DYFI staged a protest at Thiruvananthapuram Medical College against the distribution of medicines labelled “For Clinical Trials Only” to children with spinal muscular atrophy (SMA). Raising the slogan “Do not turn children into experimental subjects”, DYFI activists marched to the medical superintendent’s office on Thursday, carrying placards and photographs of medicine bottles bearing experimental-use labels.

The protesters raised slogans against the UDF government for proceeding with the change in medication without addressing parents’ concerns about the safety of treatment for their children. They demanded an end to what they described as the Health Department’s irresponsible approach to an issue involving children’s lives.

The controversy began after Natco Pharma’s generic drug was distributed to children with SMA at Thiruvananthapuram’s SAT Hospital, replacing the medicine they had previously received. The bottles supplied to parents carried labels reading “Physician Sample” and “For Clinical Trials Only”.

The appearance of labels indicating that the medicine was intended for clinical trials on bottles supplied to children with a serious genetic disorder cannot be dismissed as a minor error, the concerns surrounding the incident suggest. The decision to change the children’s medication without clarifying the documentation relating to the drug’s safety and efficacy has further heightened parental concerns.

During the LDF government’s tenure, children with SMA received Roche’s risdiplam free of cost through the CARE scheme.

Steps have reportedly been initiated to retrieve the medicine bottles labelled “For Clinical Trials Only” that were distributed to children. However, it remains unclear how these bottles reached the hospital and how they were distributed to children without further checks. The concerns raised by parents over the change in medication have also yet to receive a clear response.