Drug makers argue that the prices ought to reflect the value of a curative treatment to the patient. Dr. Kesselheim and other experts are far from convinced.
“We don’t pay the fire department that way,” he said. “When the fire department shows up at a burning house, they don’t ask, ‘How much is it worth to you to put out the fire?’”
Executives at drug companies declined to say what they plan to charge for the gene therapies they are developing. But they said a variety of factors justified setting unprecedented prices.
By definition, there are very few patients with the rare diseases that the treatments target. Companies thus will have comparatively fewer opportunities to make enough money to pay for their investment, to turn a profit and to fund future research.