What is the Average Cost of Spinal Muscular Atrophy (SMA) Treatment?

The Cost of SMA Care in India: What Families Need to Know

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.

How Expensive is Gene Therapy for SMA in India?

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.

What are the Costs of Other SMA Treatments Available in India?

In addition to Zolgensma, other therapies for SMA include Nusinersen (Spinraza) and Risdiplam (Evrysdi):

Nusinersen (Spinraza)

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.

Risdiplam (Evrysdi)

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.

How is the Indian Government Addressing the High Cost of SMA Treatment?

The Indian government has acknowledged the financial burden of SMA treatment and made a few moves to reduce the cost:

• Capped free treatment expenses at ₹50 lakhs annually per child under specific schemes.
• Has been spending larger amounts on rare diseases, including SMA, with expenditures having grown from ₹35 crore in 2022-23 to ₹82 crore in the ongoing financial year.
• Considers forming a specialised Technical Expert Group (TEG) to focus on SMA and other rare diseases, aiming to develop sustainable treatment models.

Can Generic SMA Drugs Reduce Treatment Costs?

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:

• This is expected to dramatically reduce the annual treatment cost from the current ₹22 lakh to ₹72 lakh range, down to as low as ₹3,000 per year for the generic version.
• One of the leading Indian pharmaceutical companies is set to manufacture the generic drug, making SMA treatment far more affordable and accessible to Indian patients.
• This development could revolutionise SMA care in India, removing the cost barrier.

What are the Real-life Impacts of SMA Treatment Costs on Indian Families?

Check out the real-life impacts of SMA treatment costs on Indian families in the section below:

• Due to the excessively high costs of SMA treatment, many families cannot afford lifesaving therapy without outside assistance.
• Instances of children being treated with Zolgensma or Spinraza mostly rely on government assistance, charitable donations, or crowdfunding initiatives.
• For instance, a West Bengal boy was recently given a lifesaving ₹16 crore injection of Zolgensma following a mix of fundraising and support from the hospital.
• Such stories bring hope that these treatments can cure children from financially disadvantaged families and also the harsh reality of their financial demands.
• Moreover, the high cost limits the availability of treatment centres and forces many families to travel long distances or forego treatment altogether.

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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