A watchdog group sets aside emotions to assess drugs’ value. Patients say their lives are more than a number

Health economists walk a precarious tightrope: Their analyses are quantitative and, presumably, emotion-free. But health care is intensely personal — and often, intensely emotional.

That tension between between quantitative analyses and lived experiences was on full display at a recent meeting of the Institute for Clinical and Economic Review, a nonprofit that tasks itself with determining what a drug is worth based on factors like how well it works and how much it helps patients.

ICER had set out to review evidence for three drugs that treat — but do not cure — Duchenne muscular dystrophy, a rare and fatal disease that causes affected people’s muscles to deteriorate over time. For them, the question is a basic — and, yes, quantifiable — one: Do the drugs improve the lives for these patients enough to justify the price tags, which can cost hundreds of thousands of dollars each