SMA can have slow onset, but for many it means death in early childhood without treatment. There is a previously approved treatment, which costs $375,000/year. The newly approved treatment is thought to require only a one-time infusion, which may provide life-long benefit, but it costs $2.1 million. This writer who lives with SMA argues that the new treatment (onasemnogene abeparvovec, band name Zolgensma) should be covered by insurance. Nathan Yates writes:
We should not put a price tag on life, though. “$2.1 million is too much to spend for that baby’s survival” isn’t the kind of “value assessment” we should ever accept as a society. Instead, think about the parents who will no longer have to receive the heartbreaking news that my parents were given 29 years ago: “Your child has spinal muscular atrophy, and there’s nothing we can do. Survival beyond early childhood is unlikely.” The price of Zolgensma seems insignificant now, don’t you think?Well, if you agree with him that “'$2.1 million is too much to spend for that baby’s survival' isn’t the kind of “value assessment” we should ever accept as a society," you need to think long and hard about the implications of that, because we make the value assessment that far lower sums are too much to spend for babies' survival all the time. Yates has insurance so the treatment he is currently receiving, the $375,000/year one, is covered. But people without insurance, or with inadequate insurance are dying regularly of much less costly diseases, including diabetes. And children in poor countries around the world are dying every five minutes from causes that could be prevented for a few dollars, such as contaminated drinking water, malnutrition and lack of vaccinations.
The fact is that resources are scarce and we do have to put a price tag on life. We do it every day, every one of us. Yates actually teaches economics so he must understand this. The $2.1 million he wants for his treatment is $2.1 million that isn't spent on something else, which could be something that saves hundreds of lives. This is the most fundamental premise of economics, the ostensible reason why the discipline exists. It is particularly weird that conservatives argue that a) Human live is infinitely precious and you can't put a price on it and b) society as a whole has no responsibility to see to it that everyone has health insurance and gets access to basic life extending treatment. If you can't afford it, tough luck.
I am not going to extend this post with further analyses of the complexities of this problem and the many opinions about it, but I do want to point out once again that most people seem to look straight at it and not see it. I find this puzzling.