On the occasion of a documentary about living with cystic fibrosis and the drug that turned his life around, Gunnar Esiason reflects on his personal struggle, the roles of patients and their caregivers in drug development, and the scientific struggle we so rarely see publicly depicted.

Many people who dedicate their lives to discovering, developing, and making new, lifesaving drugs don’t understand the extent to which the drug industry has failed to communicate its value proposition to society and to inspire its customers to pay for that value. That is to say, when the public and even legislators representing our biotech innovation hubs focus on the price of a breakthrough drug without a sense of its value or how it came into being and insist that innovators should not only invent medicines but pay for them, too, that’s a self-inflicted wound. Vertex’s Trikafta, one of our industry’s greatest success stories, provides an example.

As a pioneering PDAB takes its first baby steps in Colorado, we’re getting the impression that we’re watching the rules being made up as it goes along. Fortunately, we’re also witnessing the power of organized and impassioned patient advocacy to slow, reverse, and maybe someday reshape misinformed public policy.

ICER released a report concluding that Vertex’s groundbreaking triple-combination cystic fibrosis (CF) drug, Trikafta, is too expensive for the value it provides to patients. But is it?