Author: Khushboo Jain, Co-Founder and Chief Operating Officer of ImpactGuru and CarePal Group.

In my work, I see healthcare challenges every day. Some of them shake your strength as a human being. A diagnosis and treatment of Spinal Muscular Atrophy (SMA) is one of those moments. For a parent, it is the exact second the world tilts. SMA affects approximately 1 in 3,600 to 8,640 infants in India and remains a leading genetic cause of infant mortality.

A decade ago, the tragedy was that we had no cure. Since 2016, that has changed. Science has moved forward, but the real question is whether access has.

When Science Outpaces Systems

Until 2016, families had little more than supportive care. Today, we have “miracle” therapies like Zolgensma, Spinraza, and Risdiplam, breakthroughs that rewrite a child’s future. But the conversation changes the moment we look at the numbers.

The reality of SMA treatment cost in India is staggering. Zolgensma, a one-time treatment, costs between ₹16 and ₹18 crore. Other options require repeated doses that cost lakhs or crores every year. For most Indian families, this is more than they will earn in an entire lifetime. The distance between a diagnosis and a treatment is now a financial chasm. It is a gap so wide that words barely describe it.

SMA Treatment Options 

We now have multiple FDA-approved therapies that offer real hope, though each comes with its own set of challenges:

  • Zolgensma: A one-time gene therapy for SMA Type 1. It is often cited as the world’s most expensive cure, costing several crores, and is most effective for children under the age of two.
  • Evrysdi (Risdiplam): The first oral medicine approved for a wide range of SMA types, from infants to adults. In India, a single bottle costs approximately ₹6 lakh.
  • Spinraza (Nusinersen): The first-ever FDA-approved treatment for SMA. It is delivered via injection and costs approximately ₹87 lakh per dose, with multiple doses required.

Medical innovation will continue to accelerate, and that is something to be proud of. But real progress is measured not only by discovery, but by distribution.

A Community Stepping Forward

In India, healthcare is still largely an out-of-pocket burden. For a rare disease like SMA, that burden is impossible to carry alone.

Most insurance policies don’t cover genetic disorders, and while government support exists, like the ₹50 lakh grant for certain rare diseases, it often barely scratches the surface. When a treatment costs ₹16 crore, even a generous grant leaves a massive, terrifying gap.

This is where we’ve seen families turn to medical crowdfunding. They share their medical reports, their stories, and their vulnerability, hoping that collective compassion can do what systems cannot.

At ImpactGuru, we’ve seen what happens when a community decides that a child’s life shouldn’t have a price tag.
We feel deeply grateful for being a part of Aasmika’s journey, and seeing her on the path to recovery is a powerful reminder of why we do this. When 5.29 lakh donors stepped forward to raise over ₹8.4 crore for her SMA Type 1 treatment, it was a reminder of community strength.

The Responsibility That Comes With Hope

When a family shares their story with the world, they are placing their child’s life in the hands of strangers. That is a heavy trust to hold. It’s a moral obligation. 

I am hopeful that as policy and insurance evolve, access will become more equitable. But until that day comes, we will continue to serve as a bridge, one that connects the compassion of the crowd to the life of a child.

Author Bio: Khushboo Jain is Co-Founder and Chief Operating Officer of ImpactGuru and CarePal Group, where she leads operations, marketing, and strategy to expand access to healthcare financing. She has been recognised among India’s emerging entrepreneurs for her work in building mission-driven solutions that bridge medical funding gaps.