Opinion: In pricing our gene therapy, Bluebird weighed value, shared risk, and a lifetime cap
A gene therapy might deliver a lifetime of benefit, but it doesn’t deserve a lifetime of payment.
by Nick Leschly
Nov 26, 2019
4 minutes
It is hard to not get emotional when you witness the unfair reality of terrible diseases and personal stories of struggle, triumph, perseverance, and loss.
So I cried — no surprise for anyone who knows me well — for joy not long ago when the company I work for, Bluebird Bio, received regulatory approval in Europe for Zynteglo, our first gene therapy. It marked a turning point not only for people with transfusion-dependent beta thalassemia, who could see potentially curative benefits, but also for the researchers who, against the odds, poured in blood, sweat, and tears to make hope a reality.
It crushes me when people who could benefit greatly from a cutting-edge therapy
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