The Download: the world’s most expensive drug, and New York City’s e-bike plan
This is today’s edition of The Download, our weekday newsletter that provides a daily dose of what’s going on in the world of technology.
There is a new most expensive drug in the world. Price tag: $4.25 million
The news: There is a new most expensive drug ever—a gene therapy that costs as much as a Brooklyn brownstone or a Miami mansion, and more than the average person will earn in a lifetime. Lenmeldy is a gene treatment for metachromatic leukodystrophy (MLD) and was approved in the US on Monday. Its maker, Orchard Therapeutics, says the $4.25 million wholesale cost reflects the value the treatment has for patients and families.
Why it matters: MLD is a nerve disorder that strikes toddlers, quickly robbing them of their ability to speak and walk. Around half die, the others live on in a vegetative state. But it’s incredibly rare, affecting only around 40 kids a year in the US. The extreme rarity of such diseases is what’s behind the soaring price-tags of new gene therapies, and why selling the newest DNA treatment could be a shaky business. Read the full story.
—Antonio Regalado
New York City’s plan to stop e-bike battery fires
Walk just a few blocks in New York City and you’ll likely spot an electric bike zipping by. They have become increasingly popular in recent years, especially among delivery drivers. But the e-bike influx has caused a wave of fires sparked by their batteries, some of them deadly.
Now, the city wants to fight those fires with battery swapping. A pilot program will provide a small number of delivery drivers with alternative options to power up their e-bikes, including swapping stations that supply fully charged batteries on demand.
Proponents say the program could lay the groundwork for a new mode of powering small electric vehicles in the city, one that’s convenient and could reduce the risk of fires. But the road to fire safety will likely be long and winding given the sheer number of batteries we’re integrating into our daily lives, in e-bikes and beyond. Read the full story.
—Casey Crownhart
To learn more about New York City’s battery swapping ambitions, check out the latest edition of The Spark, MIT Technology Review’s weekly climate and energy newsletter. Sign up to receive it in your inbox every Wednesday.
The must-reads
I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology.
1 Reddit is set to go public today
Its vocal users have wreaked havoc on Wall Street in the past. Will they again? (Bloomberg $)
+ Redditors are understandably wary of what the future could hold. (WP $)
+ That future is increasingly looking like it’ll involve a lot of AI. (The Information $)
+ It’s one of the few online spaces that still fosters community. (NYT $)
2 Neuralink shared a video of its first patient playing games with his brain implant
Noland Arbaugh, who is quadriplegic, called the surgical procedure “super easy.” (The Verge)
+ But he also acknowledged that the chip wasn’t perfect. (Insider $)
+ Elon Musk wants more bandwidth between people and machines. Do we need it? (MIT Technology Review)
3 Russian disinformation campaigns are rippling across Europe
Its deepfake videos are designed to erode public trust ahead of the European parliament elections in June. (FT $)
+ Eric Schmidt has a 6-point plan for fighting election misinformation. (MIT Technology Review)
4 The ‘room-temperature superconductor’ physicist engaged in research misconduct
At least four papers co-written by Ranga Dias have now been retracted by the journals that published them. (WSJ $)
5 The US government has awarded its biggest chip grant to date
Intel is the lucky recipient of $8.5 billion to build and expand its US facilities. (NYT $)
+ Intel’s planning to spend an eye watering $100 billion in total. (Reuters)
6 A record number of people died trying to enter to US in 2022
Surveillance has a body count. (The Verge)
+ The new US border wall is an app. (MIT Technology Review)
7 Wherever you go, you’re being tracked across the web
But you might not realize just how extensive that tracking really is. (Wired $)
8 Poverty porn is YouTube’s latest fixation
It treats deprivation as depressing shock-content. (Vox)
9 China is betting on these spacecraft to collect moon samples
While one has already launched, another four are set to follow. (IEEE Spectrum)
10 Fitbit’s future is looking increasingly uncertain
Die-hard fans are losing patience with its owner Google’s recent changes. (Ars Technica)
Quote of the day
“I can’t wait to short the s*** outta this!”
—A Reddit user reacts to the news of the company’s IPO on the infamous r/wallstreetbets Subreddit, Vox reports.
The big story
Running Tide is facing scientist departures and growing concerns over seaweed sinking for carbon removal
June 2022
Running Tide, an aquaculture company based in Portland, Maine, hopes to set tens of thousands of tiny floating kelp farms adrift in the North Atlantic. The idea is that the fast-growing macroalgae will eventually sink to the ocean floor, storing away thousands of tons of carbon dioxide in the process.
The company has raised millions in venture funding and gained widespread media attention. But it struggled to grow kelp along rope lines in the open ocean during initial attempts last year and has lost a string of scientists in recent months, sources with knowledge of the matter tell MIT Technology Review. What happens next? Read the full story.
—James Temple
We can still have nice things
A place for comfort, fun and distraction to brighten up your day. (Got any ideas? Drop me a line or tweet ’em at me.)
+ Aww, this duck is absolutely adorable 
+ Hiking in India seems a pretty worthwhile way to spend your time.
+ Kim Gordon and Chloe Sevigny: two people who know a thing or two about being cool.
+ These behind the scenes shots of A Streetcar Named Desire are very cool.
