Thiruvananthapuram: As part of Kerala’s rare disease protection initiative, CARE support for the expensive drug Risdiplam was extended to individuals up to 25 years of age, said health minister Veena George.Previously, the medication was provided up to the age of 12. All patients confirmed with SMA Type 2 (spinal muscular atrophy) through genetic testing are included in this programme. This decision was made considering the long-standing demands of patients and their associations. A budget allocation of Rs 30 crore was made for this purpose. As a result, approximately 80% of confirmed SMA patients in Kerala will receive free medication, the minister said in a statement. Treatments for rare diseases are extremely costly and require long-term support. To address this, the comprehensive care programme CARE for rare disease treatment was introduced in 2024. Through this initiative, many children receive free treatment and continuous support. By including young adults in the treatment scope through the current decision, their quality of life and self-sufficiency can be improved. The distribution of medication will be based on genetic testing of patients and recommendations from an expert committee. This decision aligns with this year’s World Rare Disease Day message, “More Than You Can Imagine.” Over 100 children, who might otherwise face muscle weakness and loss of mobility leading to death or lifelong immobility within months of birth, are now gradually progressing through govt’s comprehensive health intervention. Kerala’s stance is that life-saving treatment should not be tied to financial capability. In 2022, Kerala became the first state in India to ensure free treatment and medication distribution for SMA patients. This decision was yet another realisation of that commitment, the minister said.
