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Vijayan demands action over SMA clinical trial drugs given to affected children

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Thiruvananthapuram, Oct 20 Former Keralam Chief Minister Pinarayi Vijayan on Tuesday expressed shock over reports of experimental drugs meant for SMA clinical trials being given to children suffering from the genetic disease without their parents’ consent and demanded strict action against those responsible.

Vijayan, in a statement, said that the distribution of experimental medicines for spinal muscular atrophy (SMA) afflicted children without the informed consent of their parents cannot be taken lightly and demanded an investigation into the matter.

The Leader of the Opposition also accused State Health Minister K Muraleedharan of being indifferent to the issue and questioned whether children suffering from serious diseases were being turned into test subjects.

His remarks come in the wake of news reports of parents claiming that SMA drugs distributed through the Sree Avittom Thirunal (SAT) Hospital here were marked as ‘Physician Sample’ and ‘For Clinical Trials Only’.

“This is a blatant violation of the Drugs and Cosmetics Act and the storage rules. The Health Department cannot avoid responsibility for this,” the CPI(M) veteran said.

Earlier in the day, Muraleedharan told reporters that it was done according to a circular issued by the previous government.

He said that more details about it can be gathered from Dr Mini at SAT Hospital, who is the expert on the issue.

“The minister may not know about every medicine,” he told reporters.

Referring to the minister’s response, Vijayan termed it as “shocking and cruel” and accused the former of handling the issue “very irresponsibly”.

“This is the latest sign that Keralam’s health sector has collapsed in every way in the last five months,” he said.

The Leader of the Opposition also accused the government of gambling with the lives of kids.

Vijayan claimed that the administration took such a decision by ignoring the strong opposition against it as well as concerns of the patients’ association ‘Cure SMA’.

He further claimed that he brought the issue to the government’s attention via a letter, but has not received any response to it and no action has been taken on it.

(PTI News)

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