In a landmark achievement, Kerala has become the first state in India to provide pre-symptomatic treatment to a newborn diagnosed with Spinal Muscular Atrophy (SMA), just days after birth. This major milestone marks a crucial advancement in the management of rare diseases in the country.

Pre-symptomatic treatment, considered the most effective approach in countries like the United States and Canada, was successfully implemented at Sree Avittam Thirunal (SAT) Hospital in Thiruvananthapuram. The infant received Risdiplam, an expensive medication, free of cost, under the supervision of a medical expert committee. The treatment plan followed international protocols and was based on a detailed analysis of the child’s development during pregnancy. Genetic counseling played a key role in ensuring early diagnosis and timely intervention.

Studies have shown that if treatment for SMA begins during pregnancy or within days of birth, children can achieve 100% normal growth. Early identification of genetic defects and intervention is therefore critical in addressing the impact of SMA and similar conditions.

To support such initiatives, the Kerala government launched the CARE scheme in 2024, the first of its kind in India. Under the slogan “Diseases may be rare, but care should not be incomplete,” the scheme ensures comprehensive support for children with rare diseases, including the provision of expensive medications and spinal correction surgeries at no cost. Currently, around 100 children are receiving benefits through this program.

Kerala's pioneering efforts in introducing pre-symptomatic treatment and implementing the CARE scheme represent a transformative model in public health. By adopting best practices from developed nations and ensuring access to life-saving treatments for all, the state reinforces its commitment to inclusive and advanced healthcare for children with rare diseases.