BUTTERFLY ON WATER: ISTOCKPHOTO.COM/TOVFLA
A few days ago (as I write this), the U.S. Food & Drug Administration approved Zolgensma to treat spinal muscular atrophy (SMA). The announcement made mainstream news not for the fantastic fact that this drug from AveXis is a one-time dosage that treats SMA at its genetic root, but because its pricetag — $2.125 million per dose — makes Zolgensma the most expensive drug currently on the market in the United States.
Few mainstream news stories directly questioned the $2.1 million price; authors were undoubtedly sensitive to the fact that SMA is the number-one cause of genetic death in infants worldwide, according to Cure SMA. But many stories hinted at shock and disdain due to the pricetag. (The communities much closer to SMA, such as families living with SMA, as well as medical experts, were much more celebratory.)
Being closer to the SMA community than to the mainstream media, I was happy when I heard of the FDA approval. I was very glad for the SMA network of families and researchers who have worked so hard for decades to create just this kind of outcome. But I knew the price would be what made headlines, much more so than how successful Zolgensma has been so far.
Yes, $2.1 million is a lot of money for one dose of a drug. But that’s because hearing that number sends most people into orbit before they hear the whole story.
Imagine that $2.1 million set against all the costs that could be reduced or eliminated if Zolgensma does what it’s been created to do.
Imagine all the hospitalizations that won’t happen. The medical specialists who won’t be called in. The reduced numbers of doctors’ appointments, clinic visits, ambulance rides, medical procedures, surgeries, medications and medical emergencies. Yes, there would be less medical equipment, and less need for home health aides and other assistants. Fewer sick days and emergency leaves for parents with children who have SMA, and less missed work for adults with SMA.
On the plus side: Fuller inclusion for people with SMA means greater overall productivity. Less sick time away from school and work, not just for people with SMA, but for their families, too. More school, more graduations, more college degrees, more graduate degrees. And of course, more income, more tax payors paying more taxes.
How do you measure that kind of impact, those ripple effects of health, success and happiness? How do you tally the worth of a drug that could contribute so much not just to people with SMA and their families, but also to their communities, their countries and the world?
Once you consider the ripple effects, the price for a drug like Zolgensma doesn’t seem so out of this world after all. A treatment for SMA is exactly what the world needs.