$2.2 Mn For A Drug is Ridiculous, But it’s True

My friend’s daughter is suffering from a rare genetic disorder, and she needs your help.

Asmita Karanje
4 min readNov 18, 2021


Diya Nandagopal

I recently received some heart-breaking news about a friend’s daughter. Her name is Diya. Recently, she got diagnosed with Spinal Muscular Atrophy (SMA) Type 2. The best treatment for Diya’s condition is a drug called ZOLGENSMA which also happens to be the costliest drug in the world at USD 2.2 Million. She needs to receive this treatment before she turns 2.

When my friend messaged in the College WhatsApp group, I read twice or thrice to really confirm he was talking about his own daughter, and it’s not a forward. It wasn’t. My heart sank. It took some time to process the information. My husband and I immediately called him to understand the gravity of the problem and how we could support them.

A couple of months ago, the parents (Nandgopal and Bhavana) noticed Diya isn’t moving as much as other infants her age. She wasn’t able to lift or crawl as such.

So they consulted a pediatrician, and that’s when they understood that something isn’t right. The doctor suggested to get her tested for SMA.

Unfortunately, the result was positive.

SMA is a rare genetic disease that can affect all muscle movements in a baby. It affects one in every 54 babies. If untreated, more than 30% of patients could die by the age of 25, and others have a reduced life expectancy. They can’t stand or sit without support or even eat or drink normally.

Learning this would break any parent’s heart. I cannot imagine the pain Nandu (as we call him) and Bhavana must have felt when the doctors broke this news.

But they didn’t dwell on it or complain.

Instead, they researched, consulted various specialists, and tried understanding the solutions. One of the well-known paedeatric neurologist Dr. Ann Agnes Matthews recommended them Zolgensma, one of the few drugs available that could treat this disease. However, it also happens to be the most expensive drug in the world.

It costs an insane USD 2.2 Mn.

Only a few wealthy individuals could afford something like this. It’s neither covered…