The Kerala government has issued orders to procure 2,159 bottles of a generic medication to treat children suffering from spinal muscular atrophy. This initiative aims to reduce treatment costs and ensure that life-saving medicine remains continuously available for those in need.
Simple details
- The government ordered 2,159 bottles of the drug Risdiplam.
- The generic version Natsmart costs approximately ₹11,000 per bottle.
- Previous procurement of the drug was at a negotiated price of ₹5.5 lakh per bottle.
- The KARE scheme has provided free medication to children under 12 since 2022.
- Treatment includes physiotherapy, respiratory therapy, and rehabilitation services.
What happened in the Assembly
Health Minister K. Muraleedharan announced in the Assembly that the state has issued orders to purchase 2,159 bottles of the drug Risdiplam.
This medication is recognized as the first at-home, oral treatment for spinal muscular atrophy.
This decision follows a shift toward using a more affordable, domestically manufactured generic version of the drug known as Natsmart.
By utilizing this version, the government has significantly lowered the financial requirements for providing essential care.
The Minister was replying to a submission by P.K. Firos, MLA, regarding the status of these treatments.
He confirmed that since October 19, the state has been providing the less expensive generic version to patients.
Why this matters for families
Spinal muscular atrophy is a rare and life-threatening genetic disorder that causes progressive muscle weakness.
It severely impacts a child's ability to move and their respiratory function, requiring long-term medical intervention.
- Children diagnosed with spinal muscular atrophy who require consistent medication.
- Families facing the high financial burden of rare disease treatments.
- Patients under 12 years of age who have been eligible for free care since 2022.
- Children identified with Type 2 SMA who require urgent medical support.
- Households seeking comprehensive rehabilitation and respiratory therapy services.
The government is committed to ensuring that treatment isn't disrupted.
By making these medicines available continuously, the state hopes to reduce the significant financial burden on affected families.
Background of KARE scheme
Since 2022, the government has provided Risdiplam free of charge to children under 12 through the Kerala United Against Rare Diseases scheme.
The program operates out of a dedicated clinic at SAT Hospital in Thiruvananthapuram.
Beyond providing medication, the state includes various support services in its care model.
These include physiotherapy, respiratory therapy, the provision of respiratory devices, and necessary surgical interventions.
The KARE scheme serves as the primary vehicle for these interventions.
It coordinates the delivery of life-saving medicines and ensures that the clinical needs of children are met in a structured manner.
Reality check
While the procurement of 2,159 bottles is a significant step, the management of rare diseases remains a complex challenge.
The availability of medication depends on continuous supply chains and the approval of technical experts.
It isn't guaranteed that every child will be immediately eligible for all forms of support.
Each case requires a thorough check-up and the approval of a technical experts committee to ensure the treatment is appropriate and safe.
Who should buy and who should skip
- Families of children diagnosed with SMA who are registered with the SAT Hospital clinic.
- Patients who meet the eligibility criteria established by the KARE scheme.
- Individuals who have completed the necessary health check-ups and screenings.
- Families who haven't yet registered their children at the SMA clinic at SAT Hospital.
- Individuals who haven't yet undergone the mandatory technical experts committee review.
- Patients whose specific medical condition might not align with the current treatment protocols.
What happens next
Moving forward, the government intends to expand its support systems for affected families.
This involves collaboration with the Kerala Social Security Mission to provide broader financial and psychological assistance.
- Finalizing the approval of a technical experts committee for new patients.
- Completing health check-ups to determine eligibility for additional children.
- Devising more comprehensive support programs for families.
- Ensuring the lifelong availability of medication for eligible individuals.
Verdict
The state is taking a proactive approach by switching to a more affordable generic version of the necessary medication.
This move is a positive development for families struggling with the high costs of rare disease care.
It is recommended that families register with the SMA clinic at SAT Hospital to access these benefits.
Read the news report this explainer is based on: Keralam Assembly: Orders issued to procure 2,159 bottles of SMA drug, says Health Minister.
Source: Ebenezer News Explainer Desk · Ebenezer News Explainer Desk. Published 29 Oct 2026, 10:53 am.
