The Worlds Most Expensive Cure Has Arrived, But Is It Ethical?

It was announced recently that drug company Novartis had created a life-saving drug for a rare genetic disorder called spinal muscular atrophy. The catch? The price tag will set you back around $4-5 million.

The drug still hasn’t found FDA approval, but if passed it would be the most expensive cure in history. The previous record price for a life-saving drug was also for gene therapy, and that was for about $1 million for Glybera.

By all accounts finding any cure for a disease is remarkable, but charging upwards of $4-5 million is cause for serious concern. This is not the first time Novartis has activated high prices for their rare disease cures, we reported back in September of 2017 that they had created a drug for a unique form of blood cancer which cost upwards of $600,000.  The real question here is who on earth will be able to afford this?

In a world where growing inequality has become starkly apparent, the challenge to not only find the funds for such a drug would be impossible, not to mention in countries like the United States where Universal Health Care is not available, insurance companies would be hard to find to support this price, in the US 8% of the population import drugs into the country to save money.

To be fair, Novartis has to date spent $8.7 billion on this drug, but, the fact that this process emerges from the private sector behind closed doors feels highly unethical.

In recent years price collusion has left the pharma industry in a wake of negative headlines. From drug kingpin Martin Shrikeli receiving jail time for his bid to raise drug prices to most recently the Sackler family, owners of Purdue Pharma (Oxycontin) being ousted for helping craft the opioid epidemic as we know it today.

Novartis has been defensive about their price point telling Reuters, “We’ve shown through other studies we are cost-effective in the range of $4-$5 million,” Dave Lennon, president of AveXis, the drug company behind the product. “And ultimately, this is an important context as we consider how we’re going to evaluate value for (the therapy called) AVXS-101.”

Tell us your thoughts do you think it’s ok that a drug company can charge such high prices for a life-saving drug?