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.
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