Keralam Assembly: Orders issued to procure 2,159 bottles of SMA drug, says Health Minister
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Health Minister K. Muraleedharan | Photo Credit: special arrangement
The Kerala government has issued orders for procuring 2,159 bottles of Risdiplam, the first at-home, oral treatment for spinal muscular atrophy (SMA), to ensure continued availability of the medicine, Health Minister K. Muraleedharan has said.
Replying to a submission by P.K. Firos, MLA, in the Assembly on Thursday, the Minister said the government was taking several steps through the KARE (Kerala United Against Rare Diseases) scheme to provide timely treatment and life-saving medicines to children affected by SMA, a rare, life-threatening genetic disorder that progressively weakens muscles, severely impairing both mobility and respiratory function.
Medicines and related treatment were made available through the SMA clinic at SAT Hospital in Thiruvananthapuram, he said.
Keralam used to obtain Risdiplam, under its trade name, at a negotiated price of βΉ5.5 lakh per bottle. Since October 19, it had been providing a less expensive generic version of the drug manufactured in the country by Natco Pharma. The drug Natsmart cost only around βΉ11,000, significantly bringing down treatment costs and making the medicine available to more children.
Besides medicines, the government also provided physiotherapy, respiratory therapy, respiratory devices, rehabilitation, and surgery, the Minister said.
Keralam has been providing Risdiplam free of cost to children under 12 since 2022 through KARE. Steps have been taken to provide all eligible persons the medicine lifelong, he said.
Referring to two children of a couple who had registered with the SMA clinic at SAT Hospital on October 6 and had Type 2 SMA, the Minister said they were eligible for free Risdiplam. Urgent steps were being taken to provide them with treatment the approval of a technical experts committee. Natsmart was being provided to them. Medicines and treatment would be provided to the coupleβs third child through KARE on completion of check-up, he added.
The government would also consider devising more comprehensive programmes in association with the Kerala Social Security Mission to provide treatment and financial and psychological support to the affected children and their families. The government, the Minister said, was committed to ensuring that treatment was not disrupted, medicines were available continuously, and the financial burden on families was reduced.
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