Kerala has allocated Rs 30 crore in its budget towards the treatment of children with Spinal Muscular Atrophy (SMA), a rare genetic disease. The allocation will be given under the KARE scheme (Kerala United Against Rare Diseases).
Medicines that treat SMA are priced in the lakhs and crores, as the available drugs are currently under the patent of foreign pharmaceutical companies. According to the government, this model is the first in India where state funds are used for rare diseases.
The kARE scheme was initiated in 2024, to facilitate the pre-symptomatic treatment of infants and children up to 12 years of age.
A source in the state’s Finance Department said that the idea behind KARE was to create a fund that could be relied on for every day treatment of SMA-affected children.
Conceptualised as a scheme that generates funds through the public and corporates, KARE faced a roadblock as the expected amounts could not be arranged. It is at this juncture that the government made a budgetary allocation of Rs 30 crore towards the scheme.
“So now the government has decided to make a budgetary contribution to this fund, in addition to other donations from corporates and the public,” the source said, adding that the sustainable solution towards the issue would be to make affordable medication available in the Indian market.
The treatment plan as per KARE uses a comprehensive analysis of SMA-affected children’s development during pregnancy. “Genetic counseling played a key role in ensuring early diagnosis and timely intervention,” Kerala’s Health Department states.
“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,” the Department adds.
The scheme was formulated following the intervention of the Cure SMA Foundation, who approached the government in January, stating that the lives of about 40 infants in the state would be at risk within six months if the availability of the drug were disrupted. The Foundation requested budgetary support from the government in order to ensure uninterrupted treatment for the affected children until cheaper generic drugs are made available in the Indian market.
Cure SMA Director of Patient Empowerment Dr Razina said the Foundation is "happy and relieved" with the budgetary allocation, as it ensures sustainability in SMA care.
"In India, the only drug approved for SMA treatment is Risdiplam (Brand name: Evrysdi by Roche Pharma). It has been available since 2022 , but costs Rs 5.2 lakhs per bottle. The Kerala government effectively negotiated with the pharma and provided access to the Evrysdi drug for more than 100 patients over the last three-and-a-half years. We are happy with the kind of outcomes our patients have achieved so far with this medicine," Dr Razina told TNM.
In 2026, the state budget also announced menopause clinics in all district hospitals in the state. Rs 3 crore has reportedly been set aside for this. The Finance Department source told TNM that the necessary infrastructure for the clinics already exist within all 14 district hospitals in the state. “The clinics will be piloted in three or four districts. The infrastructure is already in place, what will be needed now are counsellors, doctors, and nurses exclusively for the clinic. If successful, the clinics will be expanded to taluk hospitals too in the future,” he said.