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Can med for rare disorder SMA be made available at lower price in India: SC

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New Delhi, April 5: Can the medicine for treatment of rare disorder spinal muscular atrophy (SMA) be made available at lower price in India if it is supplied to the neighbouring countries Pakistan and China at a cheaper rate, the Supreme Court has sought to know from the manufacturer of the drug, Risdiplam.

A bench of Chief Justice Sanjiv Khanna and Justices Sanjay Kumar and KV Viswanathan sought to know the response of the drug manufacturer after it was told by the counsel, appearing for a 24-year-old woman, suffering from a Group III rare disease — SMA, that the drug was being sold at a cheaper rate by M/s. F. Hoffmann-La Roche Ltd, the drug manufacturer, then in India.

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“Keeping in view the nature of the controversy, we deem it appropriate to issue notice to M/s. F. Hoffmann-La Roche Ltd., the manufacturer of the drug, Risdiplam, which may be served through…This Court shall be informed, on the next date of hearing, the price fixed for the aforesaid drug in neighbouring countries. If the price is lower than in India, the Court shall also be informed as to whether the drug can be supplied at the same lower price in India also,” the bench ordered.

During the hearing on Friday, the bench was told by senior advocate Anand Grover, appearing for Seba, that the price of the medicine for SMA patients is cheaper in Pakistan and China because of intervention of the governments of those countries.

Grover submitted that why can’t the Indian government negotiate with the global drug manufacturer to make the medicine for the rare disorder available at a cheaper rate.

The top court listed the matter on April 8 after taking note of the fact that several patients are suffering in India with the disorder.

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The bench said its interim order of February 24 would continue till the next date of hearing.

On February 24, the top court stayed a Kerala High Court order asking the Centre to provide medicines worth Rs 18 lakh to Seba (24) over and above the Rs 50 lakh which such patients are entitled to under a Central government scheme.

The Centre has approached the top court challenging the high court’s order.

“Till the next date of hearing, there shall be stay of the operation of the impugned judgement. However, it will be open to the petitioners to examine the request made on behalf of respondent No. 1 (Seba), as permissible in law,” the top court had said, while asking the woman to also try and arrange for financial aid from other sources for her treatment.

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The bench had said, “It will also be open to respondent No. 1, Seba PA, as well as the Union of India to get in touch with the companies that manufacture the subject drug(s) so as to enable economical treatment of the patients suffering from the disease in question, that is, Spinal Muscular Atrophy.”

The top court had allowed the woman to send a copy of the court’s order to the companies, which are manufacturing the said drug(s), with a request to supply the drug(s) at concessional rates. PTI

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