When one shot can rewrite a person’s biology, our old math breaks.
Gene therapies don’t manage symptoms — they rewrite destiny. Yet we still judge them by outdated cost metrics.
The Sticker Shock
Some of the world’s most expensive medicines are also the most transformative:
Therapy/ Condition/ Price (USD, one-time)
Lenmeldy – Metachromatic leukodystrophy $4.25M
Hemgenix / Beqvez – Hemophilia B$3.5M
Lyfgenia – Sickle cell disease $3.1M
Zynteglo – β-Thalassemia $2.8M
Casgevy – CRISPR for sickle cell $2.2M
Zolgensma – Spinal muscular atrophy $2.1M
Luxturna – Inherited blindness $0.85M
A $2M therapy sounds outrageous — until you realize it can replace a lifetime of medical costs and suffering.
The Math of a Lifetime
Economists use QALYs (Quality-Adjusted Life Years) to value health.
A fair trade is roughly $150,000 per QALY.
A baby receiving Zolgensma might gain 20 healthy years:
(20 × $150k) − $2.1M = +$900,000 net benefit.
That’s not wasteful spending — that’s smart investment.
Early treatment multiplies returns.
Lenmeldy or Zolgensma given before symptoms can save decades of ability, learning, and participation in life — compounding value far beyond their price tag.
Our Metrics Are Too Small
Gene therapies expose a moral blind spot: we measure today’s budgets, not lifetimes gained.
We need metrics that:
Count decades, not quarters.
Tie payment to outcomes, not dosage.
Include productivity, caregiving, and dignity as part of value.
Because a life restored isn’t a cost center — it’s a capital gain.
A Call to Scale
The question isn’t “How can we afford this?”
It’s “How much longer can we afford to think small?”
Gene therapies challenge us to evolve our math —
to measure not just medicine, but meaning, in lifetimes.