Kerala Finance Minister K.N. Balagopal has announced a dedicated allocation of ₹30 crore for the treatment of Spinal Muscular Atrophy (SMA) in the State Assembly. This marks the first instance of an Indian state government providing a specific budgetary line item for the procurement of SMA medications. This move transitions the funding of these treatments from private crowdfunding to the state’s public health framework.
Spinal Muscular Atrophy is a genetic disorder characterized by the progressive degeneration of motor neurons in the spinal cord, leading to muscle wasting and respiratory failure. In India, the carrier frequency for the genetic mutation causing SMA is estimated at 1 in 50. This means the chance of having an SMA-affected child is higher compared to other rare diseases. The disease is categorized into four types based on the age of onset and severity: Type 1 is the most severe and typically appears before six months of age, while Types 2, 3, and 4 present later with varying degrees of physical limitation.
Almost a decade ago, there was no disease-modifying treatment available for SMA, and now there are three options. However, the high cost of treatment remains the primary barrier to care for patients with SMA. Currently, three main therapies are available globally: Zolgensma, a one-time gene therapy priced at approximately ₹16–17 crore; Nusinersen (Spinraza), which requires lifelong spinal injections costing around ₹4–5 crore in the first year; and Risdiplam (Evrysdi), an oral medication with annual costs ranging from ₹60 lakh to over ₹1 crore. To date, families in Kerala and across India have relied almost exclusively on large-scale crowdfunding campaigns to access these drugs.
The ₹30 crore allocation will be utilized through the Kerala United Against Rare Diseases (KARE) initiative. This program is designed to provide a structured procurement system for rare disease medications and to support specialized treatment centers like SAT Hospital in Thiruvananthapuram. The government has stated that the funds will ensure the continuity of treatment for patients already registered under the KARE project.
This budgetary provision follows the implementation of “Medisep 2.0” and an increase in monthly medical pensions for patients with other chronic illnesses. While the ₹30 crore does not cover the full cost of gene therapy for every diagnosed child, it establishes a formal state mechanism for drug distribution that did not previously exist in the Indian public health sector. Health experts view it as a critical first step in institutionalizing rare disease care.
The impact of this funding could be significantly amplified by the emergence of more affordable options, such as the generic version of Risdiplam developed by NATCO Pharma. NATCO’s entry into the market is expected to drastically lower the price of the oral therapy, potentially making the government’s allocation go much further in providing sustainable, long-term treatment for a larger number of patients. This combination of state funding and generic competition marks a new phase in the accessibility of genetic medicine in India.