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Freakonomics, M.D.

72. What’s Stopping Us From Curing Rare Diseases?

Freakonomics, M.D.

Freakonomics Radio + Stitcher

Society & Culture, Science

4.81.1K Ratings

🗓️ 10 February 2023

⏱️ 32 minutes

🧾️ Download transcript

Summary

Breakthroughs in biotech that seem like science fiction are becoming reality. Why aren’t more patients benefiting from them?

Transcript

Click on a timestamp to play from that location

0:00.0

I got an email from a parent of a child who is going progressively blind.

0:10.7

This parent writes to me and says, look, my child is an amazing student and she's doing

0:15.4

so well, but she's going to lose vision.

0:18.8

It's going to happen.

0:19.8

We don't know when.

0:20.8

Can you stop it?

0:22.5

Every day, Dr. Feeder Urnauf's inbox is flooded with emails like that one.

0:27.9

They put him in a difficult position because he has the technology to stop it.

0:34.2

Feodor is a professor at UC Berkeley and a leading researcher in the field of genomic therapies.

0:40.6

He develops medications that change people's DNA to cure genetic diseases like the one

0:46.9

described in that email.

0:49.1

We're not just sitting here hand-drinking, but the fault that's in our stars.

0:53.6

We can actually fly to the stars and touch them and manipulate them.

0:57.0

But having the ability to do something and actually doing it are two very different things.

1:07.0

Medicine has always suffered from a problem called the no-do gap.

1:11.5

It's the difference between what we actually do for our patients and what we could do, given

1:16.6

all that we know.

1:18.4

Breakthroughs and biomedicine are allowing doctors to do things they could never do before.

1:24.0

But sometimes these advances don't fit into our financial or regulatory systems.

1:30.1

That means it can take a long time for patients to actually benefit, time that many of them

1:36.1

don't have to spare.

1:38.2

The National Institutes of Health invests more than $40 billion in biomedical research

...

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