Lindsey

by Debbie Cenziper, ProPublica, and Michael D. Sallah, Pittsburgh Post-Gazette

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Reeling from one of the most catastrophic recalls in decades, Philips Respironics said it will stop selling sleep apnea machines and other respiratory devices in the United States under a settlement with the federal government that will all but end the company’s reign as one of the top makers of breathing machines in the country.

The agreement, announced by Philips early Monday, comes more than two years after the company pulled millions of its popular breathing devices off the shelves after admitting that an industrial foam fitted in the machines to reduce noise could break apart and release potentially toxic particles and fumes into the masks worn by patients.

It could be years before Philips can resume sales of the devices, made in two factories outside Pittsburgh. The company said all the conditions of the multiyear consent decree — negotiated in the wake of the recall with the Department of Justice on behalf of the Food and Drug Administration — must be met first.

The move by a company that aggressively promoted its machines in ad campaigns and health conferences — in one case with the help of an Elvis impersonator — follows relentless criticism about the safety of the machines.

A ProPublica and Pittsburgh Post-Gazette investigation found the company held back thousands of complaints about the crumbling foam for more than a decade before warning customers about the dangers. Those using the machines included some of the most fragile people in the country, including infants, the elderly, veterans and patients with chronic conditions.

“It’s about time,” said Richard Callender, a former mayor in Pennsylvania who spent years using one of the recalled machines. “How many people have to suffer and get sick and die?”

Philips said the agreement includes other requirements the company must meet before it can start selling the machines again, including the marquee DreamStation 2, a continuous positive airway pressure, or CPAP, device heralded by Philips when it was unveiled in 2021 for the treatment of sleep apnea. The settlement, which is still being finalized, has to be approved by a court and has not yet been released by the government.

The FDA said it could not comment until the agreement is finalized and filed with the court. The DOJ could not be immediately reached for comment.

It remains unclear how the halt in sales will impact patients and doctors. The company’s U.S. market share for sleep apnea devices in 2020 was about 37% — behind only one competitor, medical device maker ResMed, according to an analysis by iData Research. Philips has dominated the market in ventilator sales, the data shows.

One global market report on Monday referred to the agreement as “very punitive” and noted, “It will be very difficult for Philips to recover its U.S Respironics market position.”

After the announcement, the company’s stock prices plunged by 7% in early trading.

Philips did not address the safety of the recalled devices in its announcement, but the company has previously said that new testing shows the foam causes no “appreciable harm” to patients. The FDA has challenged those claims, saying the company’s tests are not “adequate.”

The settlement comes just weeks after federal lawmakers called for an immediate criminal probe of Philips by the DOJ, and the Government Accountability Office, the investigative arm of Congress, said it will launch an inquiry of the FDA’s oversight of medical device recalls for the first time in years.

ProPublica and the Post-Gazette identified thousands of reported cases of cancer, respiratory illnesses and liver and kidney conditions among users of the recalled machines, as well as more than 370 reports of deaths.

The news organizations found that scientists inside Philips repeatedly raised concerns about the foam and that the company’s own testing called into question its safety claims.

The news organizations also reported that a new and different foam used in the DreamStation 2 and millions of other replacement machines sent out by Philips in the wake of the recall was found to emit dangerous chemicals as well, including formaldehyde, a known carcinogen. The company has said the new foam is safe, but scientists involved in the testing have again raised alarms and the FDA has said additional safety tests are still needed.

In its announcement, the company said it would provide ongoing service and parts for machines already in the hands of doctors and patients and continue selling its devices outside the United States subject to requirements in the agreement.

“Resolving the consequences of the Respironics recall for our patients and customers is a key focus area and I acknowledge and apologize for the distress and concern caused,” said Roy Jakobs, CEO of parent company Royal Philips. “We are fully committed to complying with the consent decree, which is an important step and provides a clear path forward.”

The announcement was the latest in a series of developments at Philips since the recall prompted a global health emergency that sent millions of patients scrambling to find replacement machines and assess the risk of long term exposure.

Philips has discontinued some of the recalled devices, including ventilators and, just last week, the widely promoted DreamStation Go, a portable CPAP.

In an online update and email to U.S. customers, Philips said the decision to pull the devices off the market in the United States was a “strategic” choice that “streamlined” its portfolio. The email reignited anger and frustration among patients and doctors.

“They used to be one of the most respected industry leaders,” said Dr. Radhika Breaden, a sleep medicine specialist in Oregon. “They have lost the trust of many of our sleep patients and many professionals in the sleep field.”

Michael Korsh of the Pittsburgh Post-Gazette contributed reporting.

Update, Jan. 29, 2024: This story has been updated with additional information provided by the FDA.

For the second time in just over a year, Popeyes has mysteriously gone dark for several weeks at Westfield Montgomery mall. Last time, when the restaurant finally reopened, employees vaguely blamed the closing on “the kitchen” and “the fryer.” This time, we’re hearing the departure will be permanent. Meanwhile: Just around the corner, another New Orleans-style fast food chain is on the way to the Dining Terrace. Kelly’s Cajun Grill, specializing in bourbon chicken, is taking over the space next to Panda Express.

The post Popeyes goes dark, Cajun food on the way to the mall appeared first on Store Reporter.

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The Fifth Circuit has spent years harassing a civil rights activist, and they gutted much of the First Amendment in the process.

A renegade federal appeals court — one dominated by MAGA-aligned judges who routinely read the law in ways that even the current, very conservative Supreme Court finds untenable — has spent the last half-decade harassing DeRay Mckesson, a prominent civil rights activist and an organizer within the Black Lives Matter movement

As part of this crusade, two of the Fifth Circuit’s judges effectively eliminated the First Amendment right to organize a protest in a case known as Doe v. Mckesson.

Mckesson’s case has already been up to the Supreme Court once, and the justices strongly hinted in a 2020 opinion that the Fifth Circuit’s attacks on Mckesson’s First Amendment rights should end — labeling this case “fraught with implications for First Amendment rights.” But the Fifth Circuit did not take the hint, issuing a new opinion last July reaffirming its attack on First Amendment-protected political protests.

Now the case is before the Supreme Court again, and Mckesson’s lawyers want the justices to restore the First Amendment as fast as they possibly can.

JC Olivera/Getty Images

In 2016, Mckesson helped organize a protest near Baton Rouge’s police department building, following the fatal police shooting of Alton Sterling in that same Louisiana city. At some point during that protest, an unknown individual threw a rock or some other hard object at a police officer, identified in court documents by the pseudonym “Officer John Doe.”

Sadly, the object hit Doe and allegedly caused “injuries to his teeth, jaw, brain, and head, along with other compensable losses.”

There is no excuse for throwing a rock at another human being, and whoever did so should be held responsible for their illegal act, including serious criminal charges. But even Judge Jennifer Elrod, the author of the Fifth Circuit’s most recent opinion targeting Mckesson, admits that “it is clear that Mckesson did not throw the heavy object that injured Doe.”

Nevertheless, Doe sued Mckesson, claiming that, as the organizer of the protest where this injury occurred, Mckesson should be liable for the illegal action of an unidentified protest attendee. But that is simply not how the First Amendment works. The Supreme Court held in NAACP v. Claiborne Hardware (1982) that “civil liability may not be imposed merely because an individual belonged to a group, some members of which committed acts of violence.”

It should be obvious why protest leaders must not be held legally responsible for the actions of random protest attendees. No one will ever organize a political protest if they know that they could face financially devastating liability if a reckless or violent individual happens to show up.

Indeed, as Judge Don Willett, a Fifth Circuit judge who dissented from Elrod’s opinion, pointed out, Elrod’s approach could potentially force protest organizers to pay for “the unlawful acts of counter-protesters and agitators” who show up for the very purpose of undermining the protest organizer’s political goals. Under Elrod’s opinion, Mckesson could be held liable if the unknown rock-thrower turns out to be a member of the Ku Klux Klan who showed up for the very purpose of undermining the Black Lives Matter movement by associating them with violence.

In their petition to the Supreme Court, Mckesson’s attorneys make an audacious ask claiming that Elrod’s “decision is so ‘flatly contrary to this Court’s controlling precedent’ to be appropriate for summary reversal.”

A “summary reversal” is the judicial equivalent of a spanking. It means that the lower court’s decision was so erroneous that the justices decided to skip a full briefing or an oral argument in a case, and issue a permanent order overturning that lower court’s decision.

This process is rarely used, and it is distinct from the temporary orders the Court frequently hands down on its so-called shadow docket. The Supreme Court typically requires six justices to agree before summarily reversing another court’s decision.

Nevertheless, such a spanking is warranted in this case. Elrod’s opinion flouts exceedingly well-established First Amendment law. And it does so in a way that would make organized mass protests impossible, because anyone who tried to organize one would risk bankruptcy.

The Fifth Circuit’s Mckesson decision openly defies the First Amendment and the Supreme Court

To understand just how ridiculous Elrod’s decision is, and how egregiously she defies the Supreme Court’s caselaw, it’s helpful to start with the facts of the Claiborne case.

Like Mckesson, Claiborne involved a civil rights activist who organized a protest that allegedly included some violent individuals. In 1966, Charles Evers was the field secretary of the Mississippi chapter of the NAACP. In that role, he was the principal organizer of a boycott against white merchants in Claiborne County.

The Mississippi Supreme Court claimed that some of the individuals who joined this boycott also “engaged in acts of physical force and violence against the persons and property of certain customers and prospective customers” of these white businesses. Evers, meanwhile, allegedly did far more to encourage violence than DeRay Mckesson is accused of in his case. He allegedly gave a speech to potential customers at these stores, where he said that “if we catch any of you going in any of them racist stores, we’re gonna break your damn neck.”

The Supreme Court nonetheless held that this “emotionally charged rhetoric ... did not transcend the bounds of protected speech.” Claiborne also warned that courts must show “extreme care” before imposing liability on a political figure of any kind.

That said, the Court’s decision also listed three limited circumstances when a protest leader may be held liable for the violent actions of a protest participant:

There are three separate theories that might justify holding Evers liable for the unlawful conduct of others. First, a finding that he authorized, directed, or ratified specific tortious activity would justify holding him responsible for the consequences of that activity. Second, a finding that his public speeches were likely to incite lawless action could justify holding him liable for unlawful conduct that in fact followed within a reasonable period. Third, the speeches might be taken as evidence that Evers gave other specific instructions to carry out violent acts or threats.

None of these circumstances are present Mckesson. To the contrary, the Fifth Circuit admitted in an earlier decision in this very case that Officer Doe “has not pled facts that would allow a jury to conclude that Mckesson colluded with the unknown assailant to attack Officer Doe, knew of the attack and ratified it, or agreed with other named persons that attacking the police was one of the goals of the demonstration.”

So how on earth did Elrod arrive at the conclusion that Mckesson could be held liable for the actions of an unknown protest attendee? For starters, she claimed that her court could just add new items to the list of three circumstances that could justify such liability in her Mckesson opinion. According to Elrod, “nothing in Claiborne suggests that the three theories identified above are the only proper bases for imposing tort liability on a protest leader.”

This is, to put it mildly, a very unusual way to read a Supreme Court opinion that held that threats to break someone’s neck can be First Amendment-protected speech, which calls for “extreme care” before targeting protest organizers, and which laid out only three very specific circumstances that “might justify” an exception. Elrod cites no other court decision that has ever read Claiborne in such a counterintuitive way.

Then, after giving herself the power to invent new exceptions to the First Amendment, Elrod writes that this amendment does not apply “where a defendant creates unreasonably dangerous conditions, and where his creation of those conditions causes a plaintiff to sustain injuries.”

And what are the “dangerous conditions” created by Mckesson? Mckesson “organized the protest to begin in front of the police station, obstructing access to the building.” He did not “dissuade” protesters who allegedly stole water bottles from a grocery store. And he “led the assembled protest onto a public highway, in violation of Louisiana criminal law.”

Seriously, she said that the First Amendment begins to fade the minute a protest occupies a street.

William Lovelace/Getty Images

It’s hard to imagine a more lawless, unpersuasive, and historically ignorant decision than the one Elrod put her name on in the Mckesson case. And if the Supreme Court can’t find the votes to reverse that decision, the right to engage in mass protest will become meaningless.

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The New York Times v. OpenAI, explained.

If you’re old enough to remember watching the hit kid’s show Animaniacs, you probably remember Napster, too. The peer-to-peer file-sharing site, which made it easy to download music for free in an era before Spotify and Apple Music, took college campuses by storm in the late 1990s. This did not escape the notice of the record companies, and in 2001, a federal court ruled that Napster was liable for copyright infringement. The content producers fought back against the technology platform and won.

But that was 2001 — before the iPhone, before YouTube, and before generative AI. This generation’s big copyright battle is pitting journalists against artificially intelligent software that has learned from and can regurgitate their reporting.

Late last year, the New York Times sued OpenAI and Microsoft, alleging that the companies are stealing its copyrighted content to train their large language models and then profiting off of it. In a point-by-point rebuttal to the lawsuit’s accusations, OpenAI claimed no wrongdoing. Meanwhile, the Senate Judiciary Subcommittee on Privacy, Technology, and Law held a hearing in which news executives implored lawmakers to force AI companies to pay publishers for using their content.

Depending on who you ask, what’s at stake is either the future of the news business, the future of copyright law, the future of innovation, or, specifically, the future of OpenAI and other generative AI companies. Or all of the above.

Ideally, Congress would step in to settle the debate, but as James Grimmelmann, a professor of digital and information law at Cornell Law School, told me: “Congress does not like to legislate on copyright unless there’s a consensus of most of the players in the room — and there’s not anything resembling that consensus right now. So Congress may hold hearings and talk about it, but we’re really far from any legislative action.”

So which is it? Advocates of technological innovation would say that AI technology is full of promise and we’d better not stifle that while it’s in the early days of development. Media companies would say that even exciting technology companies need to pay when they use copyrighted content, and if we give AI a free pass, journalism as we know it could eventually cease to exist.

The consensus of casual observers and legal experts alike is that this New York Times lawsuit is a big deal. Not only does the Times appear to have a solid case, but OpenAI has a lot to lose — perhaps its very existence.

The case against OpenAI, briefly explained

If you ask ChatGPT a question about, say, the fall of the Berlin Wall, there’s a good chance some of the information in the answer has been culled from New York Times articles. That’s because the large language model, or LLM, that powers ChatGPT has been trained on over 500 gigabytes of data, including newspaper archives. Generative AI tools only work because this training data helps them know how to effectively respond to prompts. In other words, copyrighted data, in part, is what makes this new technology powerful and what makes OpenAI such a valuable company.

The New York Times claims that OpenAI trained its model with copyrighted Times content and did not pay proper licensing fees. That, the lawsuit says, enables OpenAI to “compete with and closely mimic” the New York Times, perhaps by summing up a news story based on Times reporting or summing up a product recommendation based on Wirecutter reviews.

Even worse is what the lawsuit calls “regurgitation,” which is when OpenAI spits out text that matches Times articles verbatim. The Times provides 100 examples of such “regurgitation” in the lawsuit. In its rebuttal, OpenAI said that regurgitation is a “rare bug” that the company is “working to drive to zero.” It also claims that the Times “intentionally manipulated prompts” to get this to happen and “cherry-picked their examples from many attempts.”

But at the end of the day, the New York Times argues that OpenAI is making money off of content and costing the newspaper “billions of dollars in statutory and actual damages.” By one estimate, given the millions of articles potentially implicated and the cost per instance of copying, the New York Times might be looking for $450 billion in damages.

OpenAI has a clear solution to this conflict: Pay the copyright owners upfront. The company has already announced licensing deals with folks like the Associated Press and Axel Springer. OpenAI also claims that it was negotiating a deal with the New York Times right before the newspaper filed its lawsuit.

Just how much OpenAI is willing to pay news outlets is unclear. A January 4 report in the Information said that OpenAI has offered some media firms “as little as between $1 million and $5 million to license their articles for use in training its large language models,” which seems like a small amount of money to OpenAI, currently aiming for a valuation as high as $100 billion. But the mounting lawsuits, should they go against the company, could be far more expensive than paying heftier licensing fees.

The New York Times is also not the only party suing OpenAI and other tech companies over copyright infringement. A growing list of authors and entertainers have been filing lawsuits since ChatGPT made its splashy debut in the fall of 2022, accusing these companies of copying their works in order to train their models. The copyright holders filing these lawsuits extend well beyond writers, too. Developers have sued OpenAI and Microsoft for allegedly stealing software code, while Getty Images is embroiled in a lawsuit against Stability AI, the makers of image-generating model Stable Diffusion, over its copyrighted photos.

“When you’re talking about copyright and you get statutory damages,” said Corynne McSherry, legal director at the Electronic Frontier Foundation, “if you lose, the downside and the financial risk is massive.”

The case for innovation

While it’s easy to compare the Times case to the Napster one, the better precedent involves the VCR, according to McSherry.

In 1984, a years-long copyright case between Sony and Universal Studios over the practice of using VCRs to record TV shows made it all the way to the United States Supreme Court. The studio alleged that Sony’s Betamax video tapes could be used for copyright infringement, while Sony’s lawyers argued that taping shows was fair use, which is the doctrine that allows copyrighted material to be reused without permission or payment.

Sony won. The judge’s decision, which has never been overturned, said that if machines, including the VCR, have non-infringing uses then the company that makes them can’t be held liable if customers use them to infringe upon copyrights.

The entertainment industry was forever changed by this case. The VCR let people watch whatever was broadcast on TV whenever they wanted, and in just a few years, Hollywood studios actually ended up seeing their profits grow in the VCR era. The machine got people more excited about watching movies, and they watched more of them, both at home and in theaters.

“If you have to go to copyright owners for permission for technological innovation, you’re going to get a lot less innovation,” McSherry told Vox.

That in mind, there’s one more copyright lawsuit worth looking at: the Google Books case. In 2004, Google started scanning books, including copyrighted works, so that “snippets” of their text would show up in search results. It partnered with libraries at places like Harvard, Stanford, and the University of Michigan, as well as magazines, like New York Magazine and Popular Mechanics, that wanted their archives digitized.

Then came the lawsuits, including a 2005 class action suit from the Authors Guild. The authors cried copyright infringement, and Google claimed that making books searchable amounted to fair use. As Judge Denny Chin said in a 2013 decision dismissing the authors’ lawsuit, Google Books is transformative because, thanks to the tool, “words in books are being used in a way they have not been used before.” It took about a decade, but Google eventually won, and Google Books is now legal.

Like Sony and Napster before it, the Google Books case is ultimately about the battle between new technology platforms and copyright holders. It also raises the question of innovation. Is it possible that giving copyright holders too much power could stifle technological progress?

In that 2013 decision, Judge Chin said its technology “advances the progress of the arts and sciences, while maintaining respectful consideration for the rights of authors and other creative individuals, and without adversely impacting the rights of copyright holders.” And a 2023 economics study of the effects of Google Books found that “digitization significantly boosts the demand for physical versions” and “allows independent publishers to introduce new editions for existing books, further increasing sales.” So consider that another point in favor of giving tech platforms room to innovate.

Few would disagree that technological progress has shaped the media business since the invention of the printing press. That’s basically why the earliest copyright laws were written over 300 years ago: Technology made copying easier, and authors needed some way to protect their intellectual property.

But AI is a bigger leap forward, technologically speaking, than the VCR, Napster, and Google Books combined. We don’t know yet, but AI seems destined to transform our understanding of copyright and how content creators get paid for their work. It will take a while, too. A ruling in the New York Times’s case against OpenAI will take years, and even then, questions will remain.

“I think generative AI could be as transformational for copyright as the printing press,” said Grimmelmann, the Cornell law professor. “But that will probably take a little bit longer to play out.”

A version of this story was also published in the Vox Technology newsletter. Sign up here so you don’t miss the next one!

You don’t just vote for Trump. You stan him.

It’s a common observation that modern-day politics increasingly resembles fandom: Both feature communities created around and united by passion, and both are often heavily fixated on a single public figure. Many pundits are now calling right-wing voters “the Trump fandom,” as though there’s little difference between a Trumpist who flocks to a political rally and a member of the Beyhive snapping up seats to Coachella.

Drawing general parallels between the two movements can seem easy, even simplistic, but when we look closer, what we find are mutually thorny, mutually complex ideological ecosystems with telling overlap. In both subcultures, the rise of social media echo chambers has fomented toxicity, extremism, and delusional thinking. For instance, you may not think there’s any link between QAnon and the belief that this Chinese actor is a hologram, but they both arise from the same basic problems: disinformation and zealotry serving to distort and fracture our shared sense of reality, all in the name of what devotees believe to be a higher cause.

Fandom and politics both depend on big shared narratives

Passionate enthusiasts have existed throughout human history, but fans who identify as “part of fandom” move within larger communities of other actively engaged fans. The word “fan” came into popular use in the late 1880s, with “fandom” surfacing around 1903. The concept flourished in niche geek and sports communities throughout the 20th century, and finally found its way into the mainstream in the aughts and ’10s thanks to the rise of the internet.

While fandom was evolving online in the 2000s, organic political movements were growing more commonplace, with very similar dynamics. At their core, fandom and politics both require emotion, with all the intensity that implies. Fandoms were collectives of people drawn together by their emotional attachment to specific sports teams, creatives, or works of media. Grassroots political movements of the aughts, from the Tea Party to Occupy Wall Street, were localized collectives initially drawn together by a shared narrative of what they wanted their country to become.

That communal narrative is crucial connective tissue between politics and fandom; it unites people around not just a shared sense of identity, but a shared story and the idea that they’re building that story together. These narratives aren’t just entertainment. To their proponents, they have a higher moral purpose, whether it’s “draining the swamp,” rooting for your favorite characters in a series to get together, or freeing Taylor Swift from the oppression of the closet. Big fandom narratives often segue into big political ones: Several fandom projects of the early internet spawned offshoot social and political movements, like Fandom Forward, which began as the Harry Potter Alliance, and Project for Awesome, an offshoot of the Vlogbrothers fandom. Both groups encourage fans toward social change. A single piece of Harry Potter fanfiction is arguably responsible for popularizing the Effective Altruism movement.

Trump’s political rise coincides with a specific substrain of intense celebrity fandom that emerged in the new millennium. The “stan,” sometimes referred to collectively as “standom,” is an ironic term borrowed from Eminem’s 2000 song “Stan,” about a stalker fan whose obsession goes too far. The concept of “stanning” was hugely shaped by Twitter’s ability to allow fans to follow their faves in real time, commune with other fans, and even talk directly to the creators they stanned. It hardly seems coincidental that during the era when celebrities and pop stars became more immediately interactive with their fanbases, Trump successfully styled himself not as a politician, but as a celebrity who deigned to do politics just to satisfy his long-suffering fans.

By pretending that he didn’t need politics but politics needed him, Trump established the idea that his political participation was not self-serving, but rather a conduit for the frustrations of his followers. From the outset, he presented himself as a vessel for their beliefs. As one Trump supporter recently told MSNBC’s Garrett Haake, “When Trump is facing all these things, he’s doing it for us in our place.”

But the idea of Trump as a conduit works both ways. If you wanted to see political change, you couldn’t just vote for Trump; you had to transfer your emotional investment from politics at large onto him individually. You had to stan him.

When stans call themselves “stans,” it’s a wryly self-deprecating label that implies plenty of self-awareness on the fans’ parts about the tricky relationship they have with their idols. It also predicts the slippery slope that can result when fans’ investment in their faves gets too intense. Increasingly, however, there are fewer self-aware stopgaps in modern celebrity fandom, and, as January 6 taught us, even fewer in politics.

Our emotions increasingly shape how we view reality and what we’re willing to do to preserve that view

Applying the concept of a shared narrative to political activism imbues that activism with all the heady intoxication of a fantasy role-playing game, whether it’s a fantasy of progress or a fantasy of extremism. In his recently republished 2007 book Dream: Reimagining Progressive Politics in an Age of Fantasy (now retitled Dream or Nightmare), author Stephen Duncombe observed that Trump won the 2016 election not based on facts — he lied often — but upon his ability to create fantasy masked as truth. “Facts, it seems, are not things that are verifiably true or false, merely components in a story,” Duncombe notes. “Over the past decade, right-wing populists from Israel to India, all throughout Europe and the UK, have been inventing facts to fill in fantasies of national greatness, and imminent destruction, in their rise to power.”

This distortion of reality is partly inadvertent slippage. After all, when all your friends are playing the RPG with you, it can be hard to re-enter reality. And when all your friends are creating the narrative with you, it can be hard to remember what parts are real and what parts you constructed together.

The narrative predetermines not only what information you receive, but how you interpret it and order it within the larger story. As Duncombe writes, “We understand our world less through reasoned deliberation of facts, and more through stories and symbols and metaphors.” Received in a community of devotees, such stories and symbols often morph into esoteric codes only true believers can see, from “Q drops” to signs that Louis Tomlinson’s baby is fake. And as with intensely held religious beliefs, such communities tend to double down on their beliefs once challenged or proven inaccurate rather than rethink them. In fandom communities where this happens, we see groups collectively rejecting a more measured version of reality in favor of intense conspiracy theories to support their big narratives, again and again and again and again and again.

In both fandom and politics, these distortions are often also intentionally exacerbated by community leaders. Influential members can manipulate their followers by deliberately twisting or omitting facts to suit the narrative they prefer or the narrative that’s most advantageous to their larger agenda. Their role as a translator of reality to their followers can’t be overstated.

Media researcher Sarah Banet-Weiser, in the recently published Post-Truth, Fake News and Democracy: Mapping the Politics of Falsehood, observes that while it’s common to worry we’ve entered a fractured, “post-truth” era, the idea of “truth” itself has always been highly contextual. Moreover, truth in various contexts relies on who’s telling it: “It [depends] on the assumption that certain actors tell the truth, and that these actors have been authorized with the mantle of veracity in their understandings of the world and of themselves.”

When we’re emotionally invested not only in the narrative being bolstered by the truth-teller but in the chosen truth-teller themselves, it becomes even harder to extricate an “objective” version of reality from the version they’re dispensing because the stakes feel so high. These believers aren’t above engaging in what internet researcher Alice Marwick has termed “morally motivated networked harassment”: the simple yet profound concept that being part of an ideologically driven community allows believers to justify even the most toxic behaviors, even if their ideology is unusual and a bystander wouldn’t understand their motivations or goals as moralistic. Left to themselves, most of the people who sieged the Capitol on January 6 would probably never have been instigators; as part of a larger collective being egged on by their leader, however, they came to feel fully justified even in acts as extreme as insurrection.

We project our own symbols onto celebrity personas — even to the point of religious idolatry

While Trump’s stage is the political arena, his aims and tools are about his celebrity, not his politics. “Trump was not using tools of entertainment to appear a better politician,” Duncombe writes. “He was using politics as a better stage for his performance as an entertainer.” You might wonder what celebrity qualities Trump has that allow him to influence his followers to this extent; after all, he’s no Beyoncé. But, as Trump himself is extremely aware, he doesn’t have to be — he only has to encourage his followers to make him into whatever they want him to be.

The public figure’s persona is a collectively created construct. It’s built by the celebrity and what they present to the media and the public, and then built by the media and the public and how they interpret and interact with the famous person. Once fans have created a personal parasocial relationship with their celebrity of choice, they will project whatever positive attributes they want onto that celebrity’s persona — even if they don’t align with reality and even if they’re internally contradictory.

The secret of Trump’s following isn’t that Trump unlocked the be-all and end-all of political campaigning, but rather that he understands how his public persona works. From the outset, he encouraged his followers to project their own desires and fantasies onto him. “Every day I wake up determined to deliver for the people,” he said in his party nomination acceptance speech in 2016. “I am your voice.”

While some stars offend their fans by refusing to play into their narratives — see, for example, Taylor Swift battling the gaylors — Trump remains unflappable in the face of any and all interpretations of his persona. By enabling his fans to project their anxieties and hopes onto him, Trump inflated his public persona to a degree that has become completely divorced from the man himself and completely bulletproof. “Trump is our David and our Goliath,” an Iowa voter recently told the New York Times. Not even Beyoncé has range like that.

This level of idolatry seems to have shifted Trump’s fandom beyond relatively normal parasocial relationships. Trump lost the 2016 Iowa caucus to Ted Cruz, largely because Cruz courted evangelical voters who were uneasy about Trump’s extreme nationalist politics. In 2024, after he handily won the same state, columnists like Amanda Marcotte and Sarah Posner pointed out that he seems to have usurped the role once held by leaders of the religious right to become a religious idol himself.

This certainly wouldn’t be the first time a celebrity has been compared to a religious figure, but the existential and blatantly fascist threat to democracy presented by this development can’t be overstated. Trump already holds sway over his followers’ fantasies, and he already determines how (or whether) they receive facts and information. It’s not beyond the realm of possibility that portrayals of Trump as a near-deity will fuel an even sharper divide — an ever-widening gap between how his supporters view reality, America, and his place in it, and what the rest of us see and experience.

Field drug tests often seem to be more a triumph of imagination than a triumph of science. They’re cheap. Some popular tests run less than $3/per. That’s the literal selling point. When in doubt, a cop can get probable cause by grabbing a substance, dumping it into a field test, and deciding whatever results are generated are evidence of guilt.

It rarely is. Sure, if you run enough tests, you’re bound to have some of these field tests confirmed by lab tests that are far more precise and less likely to be interpreted subjectively by the person performing the test. (Theoretically. There’s plenty of evidence out there showing lab drug tests can be just as faulty as field drug tests, although in these cases, the problem is usually the person performing the testing [or not!] than the test itself.)

Cheap, fast, and easy. And wrong. So very very often wrong. Field drug tests have labeled everything from bird poop (on a car’s hood!) to donut crumbs to honey to the ashes of a deceased loved one as contraband, resulting in the immediate arrest of people not actually in possession of anything illegal.

This is just what’s been observed by those challenging these results in court during criminal trials or filing civil rights lawsuits following wrongful arrests. It’s happened often enough that even a few courts are taking notice, in some cases refusing to accept plea deals predicated on nothing more than field drug tests results.

Data on field drug tests is difficult to obtain. Cops are in no hurry to turn this information over and the patchwork of public records laws across the nation often allows law enforcement to refuse disclosure simply by stating the results are relevant to a criminal investigation (even if the investigation has long since been closed).

What data can be obtained has been collected and parsed by the Quattrone Center for Fair Administration of Justice at the University of Pennsylvania. What’s long been assumed based on mainly anecdotal evidence now has at least some scientific backing: field drug tests aren’t worth what we’re paying for them, even if it is only $3/per. According to the Center’s report [PDF], nearly one third of the money spent on field drug tests is misspent. (h/t C.J. Ciaramella at Reason)

Utilizing a nationwide survey of agencies, the report offers national estimates on the frequency of test usage, finding that each year approximately 773,000 drug-related arrests involve the use of presumptive tests. Using the survey data and national estimates of drug arrests, this report examines the impact of the tests on wrongful arrests, racial disparities in their use, and their subsequent impact on drug possession prosecutions and dispositions.

Although the true error rate of these tests remains unknown, estimates based on the imperfect data that are available suggest that around 30,000 arrests each year involve people who do not possess illegal substances but who are nonetheless falsely implicated by color-based presumptive tests.

Not great. Not even good. Not even close to good. I don’t know where it’s acceptable to rack up a false arrest rate of nearly 4%, but America shouldn’t be one of those places. I realize it’s only probable cause at the point of arrest rather than the courtroom standard of “beyond a reasonable doubt.” But 30,000 bogus arrests a year from a single cause — field drug tests — is unacceptable.

Here’s how that works out in the greater scheme of things, in terms of criminal justice:

The use of presumptive field tests in drug arrests is one of the largest, if not the
largest, known contributing factor to wrongful arrests and convictions in the United States.

It’s not just arrests. It’s also convictions. And those convictions aren’t happening in bench trials or jury trials. They’re plea agreements where people weigh their options and decide that the best option is to “admit” to a crime they haven’t committed rather than subject themselves to indefinite detention and the full weight of prosecutorial forces that love to punish people for insisting on their innocence and/or seek to have their rights respected.

The whole system is stacked against defendants, beginning with the tests that cops treat as actual probable cause when they realistically should be considered nothing more than a hunch. This is the depressing reality of criminal justice in the United States when it comes to field drug tests and people falsely accused by faulty tests.

In our survey, 89% of prosecutors reported that guilty pleas are permitted without confirmatory testing (i.e., follow-up testing by a lab to verify that a field test “positive” result accurately detected an illegal drug).

67% of drug labs in the U.S. report that they are not asked to review samples when there are plea agreements, and 24% do not receive samples for confirmatory testing when there are field test results available.

Even when labs receive samples, 46% report that they will not conduct a confirmatory test if there has been a guilty plea, and 8% report that they will not retest if there has been a presumptive identification

This isn’t justice. This isn’t even a polite hat tip in the direction of justice. This is railroading, aided and abetted by drug labs beholden to cops and almost as disinterested in what happens to people facing criminal charges possibly predicated on incorrect test results. On the law enforcement side, the fact is no one cares and no one cares that no one cares. Courts are the last hope, and even most of those are more than willing to clear dockets quickly and easily by signing off on any plea deal placed in front of them.

As the report notes, it’s not as though cops and prosecutors aren’t aware of the limitations of field drug tests. It’s that they don’t care. All tests come packaged with plenty of verbiage stating how any field test should be verified with a lab test, how dozens of legal substances can trigger false positives, and how tests can be rendered useless by exposure to UV light or elevated temperatures.

But none of that is legally binding. It’s not like improper use results in a voided warranty. It’s not like field drug test makers are going to stop selling to cops just because cops ignore every single instruction printed on the package. Again, this is up to the courts. And low level courts that handle a large percentage of possession cases aren’t going to increase their own workload by forcing prosecutors to verify tests or refuse plea deals based on nothing more than what a cop claimed to have observed while misusing a cheap test prone to false positives.

It’s not that better field drug test tech doesn’t exist. It does. Portable Raman spectrometers, which are capable of producing results comparable to lab equipment (at least according to the Scientific Working Group for the Analysis of Seized Drugs), very few law enforcement agencies are going to trade in cheap drug tests they can buy in bulk with actually accurate testing equipment than can cost up to $20,000 per device.

As the report states, the 30,000 wrongful arrests is an extreme undercount. Its survey managed to only find 93 law enforcement agencies willing to discuss field drug test use and only 82 of those actually provided enough information to warrant being included in this report.

Of the few that did respond, there’s even more bad news. This is quite the pair of sentences:

Twelve agencies recently stopped using the tests due to concerns about fentanyl exposure (i.e., a belief that physical contact with fentanyl is, by itself, dangerous for the officer), and two agencies reported that the tests were an unnecessary expense as suspects were arrested and charged regardless of the test outcome.

Did you get all of that? Twelve agencies have gone full fainting goat and two agencies flat out admitted they arrested people whether or not the tests indicated illegal substances. And if arrest is the inevitable outcome, why blow money on field drug tests?

There’s nothing positive in this report, other than the recommendations it suggests, like refusing plea deals backed by nothing but field tests and ensuring all field tests are verified by lab testing. But if very little of this is happening yet, it’s hard to believe there will be widespread adoption in the future. So, we’ll just get what we’ve been getting for years: tens of thousands of bogus arrests every year — arrests that will be touted by those performing them as indicative of their tireless service to the War on Drugs. The reality, however, will be tens of thousands of destroyed lives and violated rights by tests so questionable they should never have been considered evidence of anything.

You can find Asian restaurants in most places in the United States, but the type of Asian food choices varies. For Pew Research, Sona Shah and Regina Widjaya mapped the distributions of eight major cuisines.

Whenever I’m in a new place, I like to check out the Chinese restaurants, because they’re everywhere. It’s fun to taste the area’s version of universal Chinese dishes. I’ve been to Queens. Now I’m curious about Portsmouth City and Whitman.

Tags: Asian, Pew Research, restaurant

How many Metro stations did you visit last year? How many trips did you make on rail, how many did you make on buses, and how many miles did you travel in total? How much carbon did you save? Previously, your answer may have been, “Why are you asking me about this, Washingtonian magazine?” But […]

The post Metro Launches a Spotify Wrapped–Like Feature first appeared on Washingtonian.

Imagine you have a choice between two meals. The first is pizza, served in a delivery box, the same delicious pie you’ve been eating without incident your whole life. And the second? It’s, uh, something. An off-brand Powerbar, maybe? Definitely processed. An indeterminate meal-like substance. Doesn’t smell terrible. Probably tastes fine. But still. Oh, and […]

The post This Is Why the Rats Are Winning in DC first appeared on Washingtonian.

Earth got its hottest year on record in 2023. Based on data from Berkeley Earth, John Muyskens and Niko Kommenda, for The Washington Post, focused on the geographic areas that experienced the biggest jumps.

The Post has mapped the regions that saw the largest temperature anomalies in 2023 — places that have warmed so fast that the climate is already testing the limits of human infrastructure and the ability of the natural world to cope.

Tags: climate change, global warming, Washington Post

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If you’re traveling to a new city, it can be tricky to figure out where things are and what the places are like. However, if you had a tool that set the context of the new city in terms of the neighborhoods in a city you know, you might get a better feel for the new city. Raymond Kennedy made an app (that appears to rely heavily on the OpenAI API) that lets you search the unfamiliar city against the familiar. [via Waxy]

Tags: AI, Raymond Kennedy, travel

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This was a hard year. But these 10 news stories remind us a better future is possible.

I’m not going to lie to you: 2023 was an ugly year. War rages in Gaza, Ukraine, and Sudan, with millions displaced, injured, or dead. On top of global strife, AI-fueled misinformation runs rampant, we’re barreling past climate goals, and abortion access dwindles.

But when the world is mired in horrible things, it’s important to imagine a better future; without hope, new solutions wouldn’t be possible. In 2023, despite everything, there were moments when that hope actualized into meaningful wins.

From the Supreme Court upholding America’s toughest animal cruelty law to new developments in curing sickle cell disease, 2023 saw progress across policy and scientific research that will help shape well-being for humans and animals alike for years to come. Here are 10 breakthroughs in 2023 that help remind us that a better future is worth fighting for. —Izzie Ramirez

The economy started undoing 40 years of rising inequality

Among the many surprises of the post-pandemic economy was a deep reversal in long-running trends of wage inequality. Over the last three years, an unusually tight labor market has undone an estimated 38 percent of the wage inequality between poor and wealthy workers that shot up between 1980 and 2019. Researchers dubbed this “the unexpected compression.”

Young workers without college degrees benefited the most. That’s especially good news given the ongoing debates around “deaths of despair,” where economists are trying to figure out how to counter the rising mortality rates from heart disease and drug overdose among Americans with the least education. The boosted wages were concentrated among workers who changed jobs. Low-wage workers tend to raise their pay faster by switching jobs than by staying put, but the costs of leaving a bad and low-paying job, especially with the relatively weak American safety net, often keep workers in place.

Toward the end of 2023, the wage compression looked to be cooling off, but not reversing. To be clear, inequality remains a defining feature of the American economy, evidenced by calling its reduction an “unexpected” compression. The Biden White House is pushing some ideas that could help solidify these trends, like banning noncompete agreements or boosting workers’ bargaining power. With a few structural changes and a bit of luck, 2024 could build on these trends, transforming our expectations so that reducing inequality becomes the norm. —Oshan Jarow

After completing phase 3 trials, psychedelic-assisted therapy seeks FDA approval

In September, MAPS Public Benefit Corporation (BPC) — a company developing prescription psychedelics — published positive results from their second phase 3 clinical trial on MDMA-assisted therapy for PTSD. (Phase 3 trials feature thousands of patients, and are mostly randomized and blinded.) CEO Amy Emerson stated that these results, published in Nature Medicine, were the last hurdle before applying for FDA approval of MDMA-assisted therapy.

For decades, new and effective treatments for mental illnesses like PTSD, depression, and anxiety have been scant. Over the same period, a resurgence in clinical research on psychedelics has been amassing evidence of their potential for treating precisely these conditions (the potential benefits of psychedelics extend beyond therapy, but that’s another story).

The Multidisciplinary Association for Psychedelic Studies (MAPS), the nonprofit that owns MAPS PBC, has been patiently working toward FDA approval of MDMA therapy since its founding in 1986. This most recent randomized study included 104 participants who’ve lived with PTSD for an average of 16 years. Participants were split into a treatment group that received MDMA plus three monthly therapy sessions, and a placebo group that received extended therapy sessions but no MDMA.

86.5 percent of the treatment group experienced measurable benefits, and 71.2 percent no longer met the criteria for a PTSD diagnosis. The therapy-only group still experienced significant benefits, but less so: 69 percent recorded clinically significant improvements, with 47.6 percent no longer meeting PTSD criteria.

In December, MAPS PBC officially filed its application to the FDA, concluding a nearly 40-year effort. The approval of MDMA-assisted therapy would mark a watershed moment in the world of mental health, and likely pave the way for other psychedelic drugs, like psilocybin, to follow. —OJ

It’s another year of massive progress in developing and deploying vaccines

This past year saw a wave of progress in vaccines and treatments for malaria (a disease that still kills about half a million people in Africa each year), tuberculosis (that killed 1.3 million people in 2022), and respiratory syncytial virus, or RSV (the leading cause of infant hospitalization in the US and the killer of over 100,000 children worldwide in 2019).

In October 2021, the World Health Organization (WHO) recommended its first-ever malaria vaccine, RTS,S. In July 2023, the WHO, Unicef, and Gavi (a global vaccine alliance) committed to delivering 18 million doses of RTS,S across 12 African countries over the next two years. Then, this October, the WHO recommended a new and improved R21 malaria vaccine with an efficacy of 75 percent that can be maintained with booster shots.

On the tuberculosis front, there hasn’t been a new vaccine in over a century, but a promising option, the M72 vaccine, is entering its final phase of clinical trials. And more are in the works. The advent of mRNA vaccines for Covid-19 has inspired similar efforts to develop mRNA vaccines for TB, too.

And in July, the FDA approved a new preventative treatment for RSV. The only approved antiviral treatment for RSV before that was a monoclonal antibody developed in 1998 called palivizumab, a monthly treatment that was expensive, approved only for certain at-risk infants, and reduced infant hospitalizations by about 58 percent. The new treatment, Beyfortus, offers a number of upgrades. It’s approved for all infants up to 24 months, not just those at high risk. Its efficacy in reducing not just hospitalizations but all doctors’ visits is up to 70 percent as compared to placebo. And immunity lasts five months, enough to cover the full RSV fall season. As with the others, more promising treatments are already in the works. —OJ

Mexico decriminalizes abortion

Latin America’s abortion rights movement — colloquially called the “Green Wave” after the verdant scarves Argentine activists wore in the late 2010s — notched another win this year.

In September, Mexico’s Supreme Court eliminated all criminal penalties at the federal level for people seeking abortions. The ruling will require all federal health institutions to offer abortion to anyone who requests it. As my colleague Nicole Narea explains, states will have to change their laws to comply, new clinical standards and guidelines will have to be rolled out, and the public will have to be educated on their newfound right to an abortion and how they can access it. It’s a big shift, one that will have cascading effects for years to come.

Mexico’s decriminalization of abortion fits in a wider discussion around femicide and women’s rights across all of Latin America. Thanks to the Green Wave stemming from the 2015 Ni Una Menos (Not One Woman Less) protests, Argentine lawmakers voted to legalize the procedure in 2020, Colombia’s highest court decriminalized abortion in 2022, and Ecuadorian lawmakers made abortion legal in cases of rape in 2022. There’s still progress to be made, but considering the US backslide, Mexico’s shift comes at an opportune time. —IR

Bangladesh gets the lead out of turmeric

We all know lead isn’t good for you, but its true deadliness can often be overlooked. Lead poisoning contributes to as many as 5.5 million premature deaths a year — more than HIV, malaria, and car accidents combined.

In poorer countries, lead remains ever-present, but Bangladesh has a story of success where scientists, advocates, and government officials worked together to lower lead exposure levels.

Despite phasing out leaded gasoline in the 1990s, high blood lead levels continued to be a problem in Bangladesh. When researchers Stephen Luby and Jenny Forsyth tried to isolate the source in 2019, it turned out to be a surprising one: turmeric, a spice commonly used for cooking, was frequently adulterated with lead.

With this in mind, the Bangladeshi government and other stakeholders launched an education campaign to warn people about the dangers of lead. Once producers had been warned that lead adulteration was illegal, the government’s Food Safety Authority followed up with raids and fines to those who were caught.

A 2023 paper found that these efforts appear to have eliminated lead contamination in turmeric outright in Bangladesh. “The proportion of market turmeric samples containing detectable lead decreased from 47 percent pre-intervention in 2019 to 0 percent in 2021,” the study found. And blood lead levels dropped in the affected populations, too. —IR

The Supreme Court upheld America’s strongest animal welfare law

In 2018, Californians voted to pass Proposition 12, a law requiring that much of the eggs, pork, and veal sold in the state come from animals given more space on factory farms — essentially cage-free conditions. The change is incremental, as cage-free farming is still pretty terrible for the animals, but it represents progress on a massive scale: Californians buy about 12 percent of the US meat and egg supply. (Disclosure: From 2012 to 2017, I worked at the Humane Society of the United States, which led the effort to pass Prop 12.)

It was the biggest legislative victory yet for the farm animal welfare movement, reducing the suffering of more animals than any other US law. But this year, the Supreme Court came close to striking it down.

After Prop 12 passed in 2018, pork producers sued the state to repeal the part that covers pork. The case went all the way to the Supreme Court, and I anticipated the business-friendly conservative majority would side with the pork producers. They didn’t. The court upheld Prop 12 in a 5-4 decision.

The vote guarantees that the 700,000 or so breeding pigs raised for California’s pork supply won’t be confined in cages so small they can’t even turn around in a circle for virtually their entire lives. It also protects a number of similar laws animal advocates have helped pass since the early 2000s, ensuring millions of animals don’t go back into cages. —Kenny Torrella

You can now buy slaughter-free meat

Almost a century ago, Winston Churchill predicted that eventually humans would grow meat directly from animal cells, rather than raising animals on farms. It wasn’t until 2015 that a company, Upside Foods, was launched to give it a shot.

This summer, eight years after its founding, the startup sold its first “cell-cultivated” product — chicken grown from animal cells, no slaughter required — at an upscale restaurant in San Francisco, after the US Department of Agriculture gave final approval. Another startup, GOOD Meat, gained final regulatory approval on the same day and is selling its cell-cultivated chicken at a José Andrés restaurant in Washington, DC.

Each company is serving up very limited quantities of meat, so it’s nowhere near coming close to displacing conventional meat. The two startups, and the other 150 or so cell-cultivated meat companies around the world, have a long way to go to scale up their technology and bring prices down to compete with farmed meat. It’s far from certain they’ll ever get there. But it’s promising that, in under a decade, the nascent field has made major technological and political strides in the attempt to transform the inefficient, inhumane, and unsustainable factory farming system. —KT

Governments around the world are investing in a meat-free future

Animal farming accounts for around 15 to 20 percent of global greenhouse gas emissions, yet governments have invested only about $1 billion since 2020 in developing meat alternatives, and very few policymakers have proposed initiatives to help humanity cut back on its meat consumption. By comparison, governments have invested $1.2 trillion since 2020 to scale up clean energy.

The lack of attention to making food production more sustainable is starting to change, and some big developments occurred this year.

Most notably, the government of Denmark invested nearly $100 million into a fund to help farmers grow more plant-based foods and companies develop meat- and dairy-alternative products. It also launched the world’s first “action plan” to guide new plant-based food initiatives, like training chefs to cook plant-based meals, reforming agricultural subsidies, and increasing exports of Danish plant-based food products. South Korea announced a similar plan this year too, while German policymakers are putting 38 million Euros toward building up the country’s plant-based industry sector and helping farmers transition to growing plant-based foods amid falling meat production and consumption.

Canada announced a renewal of $110 million into its multi-year program for plant-based food R&D and investments in plant-based companies, while Catalonia, the UK, and other countries also put down money this year to develop alternative proteins.

Much more is needed, and fast, but increasingly, policymakers are grasping the necessity of transforming food systems in order to meet critical climate goals. —KT

Europe is quickly phasing out the ugly practice of “male chick culling”

Each year, the global egg industry hatches 6.5 billion male chicks, but because they can’t lay eggs and they don’t grow big or fast enough to be efficiently raised for meat, they’re economically useless to the industry. So they’re killed hours after hatching, and in horrifying ways: ground up or burned alive, gassed with carbon dioxide, or suffocated in trash bags.

In the last five years, however, scientists have begun to commercialize technologies to identify the sex of a chick while still in the egg, enabling egg hatcheries to destroy the eggs before the males hatch. The first machine came online in Europe in 2018, and the technology is now being adopted by European egg companies at a rapid pace.

According to the animal welfare organization Innovate Animal Ag, at the end of September 2023, 15 percent — or 56 million — of Europe’s 389 million egg-laying hens came from hatcheries that use this technology. That percentage is expected to further rise in the years ahead as several more egg-scanning machines will come online soon.

In the realm of animal farming, technology is often deployed in ways that hurt animals, like breeding them to grow bigger and faster while sacrificing their health and welfare. But here, it’s used to end one of the industry’s cruelest practices. I hope we’ll see even more technologies used for good in the food and farming sectors in the years ahead. —KT

The FDA has approved the first-ever gene editing treatment for use in humans, offering a cure for sickle cell disease

In December, the Food and Drug Administration approved the first-ever therapy using CRISPR gene editing technology for patients 12 and older, offering a potential cure for sickle cell disease (SCD). The disease affects 100,000 people in the US and millions more abroad. Prior to the approval, the only cure for SCD was a bone marrow transplant, a procedure that requires a compatible donor, and kills 5 to 20 percent of patients.

SCD is a collection of inherited blood disorders where a mutation in hemoglobin, a protein found in red blood cells, shapes them into crescents (”sickles”) that restrict blood flow and limit oxygen delivery across the body’s tissues, causing severe pain and organ damage.

The new therapy, under the brand name Casgevy, uses CRISPR like a molecular pair of scissors. It edits a specific portion of a patient’s DNA to make bone marrow cells produce more fetal hemoglobin, which boosts oxygen delivery. In clinical trials, 29 of 31 patients who received treatment were cured of the events that cause pain and organ damage. A second therapy was also approved, Lyfgenia, which adds to a patient’s DNA the functional hemoglobin genes that are resistant to sickling.

As with many novel therapies that rely on frontier technology, the treatment will be expensive, time-consuming, and unavailable to the majority of those in need. At least at first. Roughly three-quarters of those living with sickle cell disease are concentrated in sub-Saharan Africa. And with price tags of $2.2 million for Casgevy and $3.1 million for Lyfgenia, they remain a pipe dream for most (though racking up payments across a lifetime of SCD is also expensive, averaging about $1.7 million for those with insurance).

Still, the news of a cure is providing hope to millions who live with severe chronic pain, and the question of how to expand accessibility is already at the forefront of many doctors’ minds. Clearing the major hurdle of getting the first-ever gene editing therapy approved for use in humans will allow experts to turn their attention to the question of how to make the treatment available for the millions of people with SCD whose lives could be dramatically improved by it. —OJ

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