Advanced pre-symptomatic treatment for spinal muscular atrophy provided in Kerala, first in India
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The pre-symptomatic treatment, which was highly effective in the USA and Canada, was successfully conducted in the state.
The second child of a woman from Thiruvananthapuram received the expensive drug Risdiplam for free. Health minister Veena George congratulated the entire team for delivering world-class advanced treatment, setting an example for the nation.
The inability to identify genetic disorders and their risk factors early often poses a challenge for SMA treatment.
However, with pre-symptomatic treatment, medication for SMA can be administered during pregnancy or within days of birth. This approach allows children to achieve 100% normal growth.
The woman, also affected by SMA, sought govt assistance to save her unborn child after understanding the risk. George instructed the child health nodal officer to take necessary action. Treatment was then ensured at SAT Hospital, Thiruvananthapuram.
A specialised committee assessed each stage of the pregnancy to determine treatment based on the severity of the condition. Genetic counselling and adherence to protocols from similar cases in developed countries were part of the treatment process.
"When both parents carry the defective SMA gene, there is a 50% chance that each of their children could inherit the disease. Studies show that in India, there is a possibility of one child being diagnosed with this disease for every 7,000 births," said an official statement.
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To ensure comprehensive care for children with rare diseases, a special scheme was formulated in 2024, marking a first in India. Govt's policy "Diseases may be rare, but care should not be" led to the launch of CARE project. Through this initiative, over 100 children affected by rare diseases, including SMA, receive expensive medications and corrective surgeries for spinal curvature free of cost.
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