Spinal Muscular Atrophy (SMA) is a genetic disorder characterised by progressive muscle weakness and atrophy. It results in severe disability or death in infants and children. The treatment scenario of SMA in India is complex due to the rising cost of therapies, unavailability of resources, and various policy and legal controversies.
Here’s more information about the average cost of SMA treatment in India, government initiatives, the financial burden patients and their families face, and other relevant details.
The most advanced and successful treatment for SMA is gene therapy. It is provided through the drug Zolgensma, replacing the defective SMN1 gene that causes the disease. This therapy costs around ₹17 crore per dose in India. Zolgensma is the most expensive medicine in India and worldwide.
The therapy is expensive due to the high research and development costs, the limited size of the market, and the lifesaving nature of the treatment. Even with the cost, there have been instances where children have been given this treatment with government assistance or crowdfunding.
It explains the vital nature of the drug but also highlights the cost burden.
In addition to Zolgensma, other therapies for SMA include Nusinersen (Spinraza) and Risdiplam (Evrysdi):
It costs approximately ₹4.2 crore in the initial year due to several loading doses, and from the next month, around ₹2.1 crore per year for maintenance doses. This medication needs to be given lifelong by spinal injections.
It is an oral drug that has been approved by the Drugs Controller General of India (DCGI) and is, at present, the only drug marketed in India. The yearly cost of Risidiplam for a child weighing around 20 kg is approximately ₹72.8 lakh. This medication also needs to be taken every day for life.
These therapies, though relatively cheaper than Zolgensma, remain a tremendous economic burden for the majority of Indian families.
The Indian government has acknowledged the financial burden of SMA treatment and made a few moves to reduce the cost:
A landmark decision by the Delhi High Court has opened the door for domestic pharmaceutical companies to produce generic versions of SMA drugs, specifically Risdiplam. Here are the key pointers:
Check out the real-life impacts of SMA treatment costs on Indian families in the section below:
The treatment cost of Spinal Muscular Atrophy (SMA) is too high in India. Gene therapies and ongoing care cost crores, which can only be met if one is insured with a comprehensive health insurance plan.
With innovative treatments becoming available, financial planning through health insurance is crucial to ensure access for affected families. As generic drugs emerge, affordable health insurance options can further bridge the gap, making lifesaving therapies accessible and mitigating the devastating financial burden of SMA in India.
To avail of financial coverage for such costly treatments, you can contact affordable health insurance providers like Star Health to get a clear idea of the scope and extent of coverage.
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