Karnataka Health Minister to sponsor life-saving drug for 2-year-old with rare disease

Bengaluru: A two-year-old child with a rare disease called Spinal Muscular Atrophy (SMA) has received a new lease of life after intervention by the state health minister, who secured lifetime sponsorship of an essential drug for his treatment.

Following this case, Health Minister Dinesh Gundu Rao announced plans to speak with officials about including SMA under the monetary aid provided to Scheduled Caste and Scheduled Tribe (SC/ST) patients for rare, high-cost diseases. He aims to better utilise the allocated funds for such conditions, he told DH.

The boy, Aryan Murthy, suffers from SMA Type 2, a degenerative genetic disorder that causes progressive muscle wasting and weakness. This condition leads to difficulty crawling, walking, and eventually breathing and swallowing.

Earlier this year, Aryan's parents, Dr Nirnay Murthy and Dr Lalrinmawii Hmar, both veterinarians, learned of their son's diagnosis from Dr Ann Agnes Mathew at Bangalore Baptist Hospital. The cost of treatment with the drug Risdiplam amounts to Rs 48 lakh per year based on Aryan's current weight of 11 kg, and this cost is expected to rise to Rs 73 lakh when he reaches 20 kg.

They approached the health minister for aid, after which he facilitated an agreement through the Indira Gandhi Institute of Child Health and an NGO named Care and Protection of Children Trust to provide a lifetime supply of the drug for Aryan.

The family is now crowdfunding to raise Rs 16 crore for the gene therapy injection Zolgensma.