STATEMENT:

“Novartis is forcing families to answer one question: ‘What are you willing to pay to save your child’s life?’

“And that’s easy. When it’s your child facing the devastating disease of SMA, the answer is ‘anything.’ Yes, $2.1 million or even more.

“But that’s the wrong question. We don’t pay a heart surgeon $2.1 million every time she repairs a congenital defect at birth. We didn’t pay for the polio vaccine based on the future cost savings for kids who didn’t need to live in iron lungs.

“The question in drug pricing isn’t how much is a life worth; it’s what makes a fair return on an investment in R&D and an accessible price.

“Novartis did not do the bulk of the R&D on this drug. It purchased a company with the technology for $8.7 billion in 2018. The acquisition price was based not on cost to develop the drug but based on expectations of high returns. So the price has been set to deliver those returns with no regard to the actual cost to develop it.

“Novartis picked a price simply based on what it thought it could get away with. And it is emblematic of our broken system that effectively forces us to pay whatever price drug corporations demand for lifesaving new drugs.”

BACKGROUND

• The Food and Drug Administration today approved Zolgensma, a gene therapy for spinal muscular atrophy. (FDA)
• The FDA expects to approve 10 to 20 gene and cell therapies a year by 2025. (The Wall Street Journal)
• “There is no evidence of an association between research and development costs and prices; rather, prescription drugs are priced in the United States primarily on the basis of what the market will bear.” (JAMA)
• “Price increases largely fueled profits rather than additional research spending.” (Health Affairs)