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Kerala Boy's Rare Tumor Treated Free
9 Jan
Summary
- Seven-year-old receives free treatment for rare Plexiform Neurofibroma.
- Pioneering drug Selumetinib offers hope where surgery failed.
- Kerala's KARE scheme provides unprecedented support for rare diseases.
A seven-year-old boy from Thiruvananthapuram is receiving life-changing treatment for Plexiform Neurofibroma (PN), a rare and painful condition. The child is being treated under Kerala's KARE (Kerala Against Rare Diseases) scheme, which is providing a patented drug called Selumetinib free of charge. This marks the first time a state government in India is offering such support for PN.
The boy had a large tumor compressing his heart and lungs, causing severe pain and respiratory distress, making surgery impossible. Doctors began administering Selumetinib, an oral medication approved in 2020 by the US FDA for inoperable PN in pediatric patients. After four months of treatment, the tumor has significantly reduced, and the child's condition has vastly improved.
While PN requires long-term management and lacks a definitive cure, Selumetinib offers a crucial therapeutic option where surgical intervention is not feasible. The high cost of the patented drug, running into lakhs per month, underscores the importance of government initiatives like KARE in making such treatments accessible. The health department has allocated initial funds, with ongoing support needed to continue this critical treatment.
