What is Plexiform Neurofibroma and how is the Kerala boy being treated?

Plexiform Neurofibroma is a rare condition causing tumors near nerves. The boy is being treated with the drug Selumetinib under Kerala's KARE scheme.

Is Selumetinib a new drug for rare diseases in India?

Selumetinib, approved in the US in 2020 for inoperable PN, is now being offered as free treatment in India through Kerala's KARE scheme, marking a significant step.

How does the KARE scheme help rare disease patients in Kerala?

The KARE scheme provides free medicines, including expensive patented drugs, and psychosocial support for children with rare genetic disorders in Kerala.

Home / Health / Kerala Boy's Rare Tumor Treated Free

Kerala Boy's Rare Tumor Treated Free

9 Jan

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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.