Parents of spinal muscular atrophy(SMA)-afflicted children coming to the SMA clinic at SAT Hospital had been counselled several times about the government introducing the generic version of Risdiplam, instead of the Evrysdi brand by Roche, said V.H. Shankar, Head of the Department of Medical Genetics, who is also in charge of the treatment of children with rare diseases at the hospital, here on Friday.
Dr. Shankar, who attended a press conference along with Health Minister K. Muraleedharan, said several meetings had been held with the parents of SMA-afflicted children, during which time all their queries on the efficacy of the generic drug were clarified.
He was answering queries on whether the parents had been told about the introduction of the generic drug for SMA and whether their concerns had been assuaged adequately by the authorities.
Dr. Shanker said he himself had spoken at several of the meetings with the parents. He added that the new generic drug Natsmart was given to six children and the parents were clearly told that the drug being dispensed was not the same brand (Evrysdi) that used to be dispensed earlier.
He said the technical committee had evaluated the decision to shift from Evrysdi to Natsmart several times. The purchase procedure was initiated in February 2026 itself.
Chairperson of the technical committee and Director of Medical Education K.V. Viswanath said the medicine bottles bore the sticker “Physicians’ sample/ for clinical trials”, which is just an indication that the bottles were not for open sale.
The SAT Superintendent had earlier clarified that they were awaiting the government supply of Natsmart, when on Monday, patients had arrived at the SMA clinic seeking the medicine. He had also clarified that rather than asking them to come another day, the hospital had contacted Natco and secured some samples from them to be given to the SMA patients.
The government supply arrived on Tuesday evening itself, but by which time, the campaign that clinical trial medicines were being given to SMA patients was already raging.
Former Health Minister, Veena George, had demanded on Thursday at a press conference that the government should explain how “drugs meant for clinical trials” had been supplied through the hospital. She also alleged that after the controversy broke, the parents had been “threatened” into returning the medicine bottles by the SAT Hospital authorities.
Mr. Muraleedharan said the authorities took back the medicines and replaced it with the lot from the government supply to put the controversy and concerns at rest. He said the doctors at SAT Hospital had spoken to the parents and explained everything and the so-called “concerns” were the creation of some news channels. He said it was also possible that the controversy was deliberately raked up by some along with pharma majors.
He said the government intended to purchase only the generic version of Risdiplam so that the treatment can be provided to more patients.
Meanwhile, many public health experts have expressed concern over the manner in which the issue is being politicised by the Opposition, which has continued to perpetuate the concerns and misgivings of parents of SMA patients by raising the allegation that “clinical trial drugs” were distributed to children.
Published - October 23, 2026 08:09 pm IST