Life-Saving Drug Costs Families $2.8 Million To Cure Infants With Deadly Neuromuscular Disease

When you have a baby, all you want is for your new son or daughter to be as healthy as possible. Unfortunately, not every parent is lucky to have a healthy newborn. If you're lucky, it could be a minor condition that can be treated and go away in a few weeks or months. But in many instances, your baby may be born with an incurable disease that will forever alter their life. That means you'll have to spend a lot of time and money to try and improve your baby's life.

Families who have babies suffering from spinal muscular atrophy are currently forced to pay about $2.8 million for a drug to treat this deadly disease. The drug in question- Zolgensma from the multi-billion dollar drug company Novartis- is a one-time treatment for babies suffering from spinal muscular atrophy. Not only is it incredibly expensive, but those who don't live in the United States are forced to spend more money to travel there to access it. Sadly, this issue isn't a one-off either.

"[Zolgensma] is a gene therapy that helps cure a disease, which was seen just as a death sentence. [But] the price tag is something that we are unfortunately seeing across a lot of different drugs," explained Mina Tadrous, a research associate with the Ontario Drug Policy Research Network.

Novartis has received a ton of well-deserved criticism for the high price tag of Zolgensma. After all, no one should have to spend a ton of money that may not have just to help your baby get better. Yet Novartis has argued that such a high cost is reasonable. After all, it's cheaper to take Zolgensma just once as opposed to spending money for a lifetime of chronic therapy.

via Bloomberg


But Tadrous has pointed out that Novartis' decision to make Zolgensma so expensive has set a dangerous precedent.

"[Novartis] did not pull the price tag out of nowhere, they are actually matching up against another price that set a really high precedent on what people are willing to pay [to treat] the disease. More and more drugs are coming in the market with these ridiculously high drug prices … this is by far the highest price tag that we’ve seen … but this is not abnormal. In this case, because it’s so heartbreaking, they know that the market can also pay a higher price for it," she added.

Tadrous went on to explain that, to be fair, making a drug is an expensive and time-consuming process. The price of doing research, clinical trials and other fixed costs. It's also expected that drugs that treat rare diseases will cost more than drugs that treat more common diseases. But even with all that being said, Tadrous made it a point to say that to "validate the really exorbitant high prices is not defendable".

Sadly, too many families are being forced to raise money however possible in order to access Zolgensma in order to treat their baby. After all, spinal muscular atrophy is a potentially deadly disease that can lead to losing muscle, as well as issues in eating and breathing properly. It's unlikely that Novartis will lower the price of this drug, so it's unknown as to what will happen next in this case.

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