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Bengaluru: Fifty children in Karnataka, diagnosed with Spinal Muscular Atrophy (SMA), will receive lifelong, free access to Risdiplam, an oral treatment for the disorder, as part of a financial assistance and free medicine programme launched on Thursday.
SMA is a rare genetic neuromuscular disorder that causes progressive muscle wasting.
Care and Protection of Children Trust (CPCT), an NGO supporting rare disease treatment, has partnered with Roche Pharma India to supply Risdiplam, the only drug approved by the Drugs Controller General of India (DCGI) for SMA treatment.
Through CPCT’s Free Medicine Access Programme (F-Map), funded by CSR, the children will receive ongoing care and treatment at Indira Gandhi Institute of Child Health (IGICH), Bengaluru. IGICH, in collaboration with the Center for Human Genetics (CHG), Bengaluru, serves as Karnataka's Centre of Excellence for rare disease treatment.
Health Minister Dinesh Gundu Rao highlighted that this programme, the first of its kind in India, offers hope for children to "battle the condition with a fair and solid chance".
“The state government is dedicated to making rare disease treatments accessible, easing the financial strain on parents," said Dr Sharanprakash Patil, Minister of Medical Education. "We also need a stronger focus on prenatal and early screening for such genetic disorders.”