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A mother's loss launches a global effort to fight antibiotic resistance

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A mother's loss launches a global effort to fight antibiotic resistance

In November 2017, days after her daughter Mallory Smith died from a drug-resistant infection at the age of 25, Diane Shader Smith typed a password into Mallory’s laptop.

At this point, keeping myself alive is a full-fledged mission, enlisting all of my energy and hours every day. I need to fight the chronic deadly resistant bacteria eating away at my fragile, scarred lungs. Fight the billions of bacteria overtaking my lungs and clear out the mucus so I don’t feel like I’m breathing through a straw with a boulder weighing on my chest.

— Mallory Smith, Oct. 16, 2014

Her daughter gave it to her before undergoing double-lung transplant surgery, with instructions to share any writing that could help others if she didn’t survive.

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Had this idea today that I wanted to write down before it leaves my mind or I stop feeling inspired or I forget it or something inside me tells me it’s not possible. I want to start an online media source (podcast? website?) that tells the stories of people who have struggled with something in their life and found hope somewhere.

— Mallory Smith, July 20, 2015

The transplant was successful, but Burkholderia cepacia — an antibiotic-resistant bacterial strain that first colonized her system when she was 12 — took hold. After a lifetime with cystic fibrosis, and 13 years battling an unconquerable infection, Mallory’s body could take no more.

Cepacia has taken over, and it’s time to figure out a transplant option. I realize I want to write my story.

— Mallory Smith, July 29, 2016

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In the haze of grief and pain, Shader Smith found herself looking through 2,500 pages of a journal her daughter had kept since high school. It chronicled Mallory’s hopes and triumphs as an ebullient, athletic student at Beverly Hills High School and Stanford University, and her private despair as bacteria ravaged her systems and sapped her considerable strength.

In the years since, the journal has become a source of solace for Shader Smith as she has traveled the globe speaking about the growing threat of antimicrobial resistance. It is also now the inspiration for two new projects she hopes will spark greater understanding of the public health crisis that ended her daughter’s life prematurely and could claim millions more.

“Diary Of A Dying Girl” excerpts Mallory Smith’s own writings, which chronicle her 13-year battle against an antibiotic-resistant lung infection.

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(Genaro Molina / Los Angeles Times)

On Tuesday, Random House published “Diary of a Dying Girl,” a selection of Mallory’s journal entries. The same day saw the launch of the Global AMR Diary, a website collecting the worldwide stories of people battling pathogens that can’t be defeated by our current pharmaceutical arsenal.

An estimated 35,000 people die in the U.S. each year from drug-resistant infections, according to the U.S. Centers for Disease Control and Prevention. Worldwide, antimicrobial resistance kills an estimated 1.27 million people directly every year and contributes to the deaths of millions more.

Despite the mounting toll — and the prospect of an eventual surge in superbug fatalities — the development of new antibiotics has stagnated.

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Shader Smith is acutely aware of what we stand to lose when medicine can no longer save us.

“I don’t want to live in a post-antibiotic world,” Shader Smith said. “Until people understand what’s at stake, they’re not going to care. My daughter died from this. So I care deeply.”

Over the last 50 years, opportunistic pathogens have evolved defenses faster than humans can develop drugs to combat them.

Misuse of antibiotics has played a large part in this imbalance. Bugs that survive antibiotic exposure pass on their resistant traits, leading to hardier strains.

Crucial as they are, antibiotics don’t have the same financial incentives for developers that other drugs do. They aren’t meant to be taken over the long term, as are medications for chronic conditions such as diabetes or high blood pressure. The most powerful ones have to be used as rarely as possible, to give bacteria fewer opportunities to develop resistances.

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“The public does not understand [the] scope of the problem. Antimicrobial resistance truly is one of the leading public health threats of our time,” said Emily Wheeler, director of infectious disease policy at the Biotechnology Innovation Organization. “The pipeline for antibiotics today is already inadequate to address the threats that we know about, without even considering the continuous evolution of these bugs as the years go on.”

Despite the global nature of the threat, Shader Smith said, the response from public health officials is curiously disjointed.

For one, no one can agree on a single name for the problem, she said. Different agencies address the issue with an “alphabet soup” of acronyms: the World Health Organization uses AMR as shorthand for antimicrobial resistance, while the CDC prefers AR. Medical journals, doctors and the media refer alternately to multidrug resistance (MDR), drug-resistant infections (DRI) and superbugs.

“It doesn’t matter what you call it. We just have to all call it the same thing,” said Shader Smith, who works as a publicist and marketing consultant.

Since Mallory’s death, Shader Smith has made it her mission to get the people and organizations working on antimicrobial resistance to talk to one another. For the Global AMR Diary, she enlisted the help of a dozen agencies working on the issue, including the CDC, WHO, the European Center for Disease Prevention and Control (the European Union’s equivalent of the CDC), the Biotechnology Innovation Organization and others.

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Antimicrobial resistance can “feel abstract given the scale of the problem,” said John Alter, head of external affairs of the AMR Action Fund, one of the organizations involved with the project. “To know there are millions of families at this very moment going through struggles similar to what Mallory experienced is simply unacceptable,” he said.

“Not only does this firsthand experience help others who might be going through something similar, but it also reminds those tasked with creating solutions and care who they are working for. They aren’t just test tubes or charts,” said Thomas Heymann, chief executive of Sepsis Alliance, another contributor.

The stories in the online diary are often harrowing. A 25-year-old pharmacist in Athens had to put her cancer treatment on hold when an extremely resistant strain of Klebsiella attacked. A veterinarian in Kenya suffered permanent disability after contracting resistant bacteria after hip surgery. Around the world, routine outpatient procedures and illnesses have rapidly become life-threatening when opportunistic bugs take hold.

Mallory was 12 when her doctor called to confirm that her cultures were positive for an extremely resistant strain of cepacia, a form of bacteria found widely in soil and water. The pathogen can be deadly to people with underlying conditions such as cystic fibrosis, a genetic disorder that impairs the cells’ ability to effectively flush mucus from the lungs and other body systems.

Life expectancies for people with cystic fibrosis have grown since Mallory’s diagnosis in 1995, with many people of them living into their 40s and beyond. The cepacia curtailed that possibility for her.

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“This is all we’re ever going to have,” Mallory wrote in June 2011, at the end of her freshman year at Stanford, “so if you’re not actively pursuing happiness then you’re insane. And I don’t think I would have this perspective if I didn’t have resistant bacteria that will likely kill me.”

Flowers, a turtle sculpture and a picture of a woman are in a wall nook.
A photo of a man and woman, with a quote above it saying: "I want every girl to know that her voice can change the world."

A shrine to Mallory Smith. She fought a drug-resistant bacteria from age 12 to 25, all through high school, then at Stanford. (Genaro Molina / Los Angeles Times)

Mallory’s intuition that her journal could be valuable to others was prescient. “People can easily understand and relate to actual experiences,” said Michael Craig, director of the CDC’s Antimicrobial Resistance Coordination and Strategy Unit. “The Global AMR Diary takes this approach and expands on it with a global lens — increasing the potential to get these critical messages to more people around the world.”

An earlier version of Mallory’s diaries was published in 2019 as “Salt in My Soul: An Unfinished Life.” The new book includes entries that Shader Smith said she wasn’t ready to grapple with in the immediate aftermath of Mallory’s passing: ones addressing depression and private despair, concerns about relationships and body image issues complicated by chronic illness.

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It also includes a coda about phage therapy, a promising advance against AMR.

As cepacia overwhelmed Mallory’s system in the weeks after her transplant, her family secured an experimental dose of phage therapy. Widely used to treat infection before the advent of antibiotics, phages are viruses that destroy specific bacteria. The treatment arrived too late to save Mallory’s life, Shader Smith writes in a last chapter of the book, but her autopsy revealed that the phages had started to work as intended.

The systems that bring new drugs to patients move slowly, Shader Smith said, and “Mallory might have been saved if they had moved faster.” Her mission now is to make sure that they do.

“Mallory died six years ago. Six years is a long time, day in and day out,” she said. “And I’ve never taken my foot off the pedal.”

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Diablo Canyon clears last California permit hurdle to keep running

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Diablo Canyon clears last California permit hurdle to keep running

Central Coast Water authorities approved waste discharge permits for Diablo Canyon nuclear plant Thursday, making it nearly certain it will remain running through 2030, and potentially through 2045.

The Pacific Gas & Electric-owned plant was originally supposed to shut down in 2025, but lawmakers extended that deadline by five years in 2022, fearing power shortages if a plant that provides about 9 percent the state’s electricity were to shut off.

In December, Diablo Canyon received a key permit from the California Coastal Commission through an agreement that involved PG&E giving up about 12,000 acres of nearby land for conservation in exchange for the loss of marine life caused by the plant’s operations.

Today’s 6-0 vote by the Central Coast Regional Water Board approved PG&E’s plans to limit discharges of pollutants into the water and continue to run its “once-through cooling system.” The cooling technology flushes ocean water through the plant to absorb heat and discharges it, killing what the Coastal Commission estimated to be two billion fish each year.

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The board also granted the plant a certification under the Clean Water Act, the last state regulatory hurdle the facility needed to clear before the federal Nuclear Regulatory Commission (NRC) is allowed to renew its permit through 2045.

The new regional water board permit made several changes since the last one was issued in 1990. One was a first-time limit on the chemical tributyltin-10, a toxic, internationally-banned compound added to paint to prevent organisms from growing on ship hulls.

Additional changes stemmed from a 2025 Supreme Court ruling that said if pollutant permits like this one impose specific water quality requirements, they must also specify how to meet them.

The plant’s biggest water quality impact is the heated water it discharges into the ocean, and that part of the permit remains unchanged. Radioactive waste from the plant is regulated not by the state but by the NRC.

California state law only allows the plant to remain open to 2030, but some lawmakers and regulators have already expressed interest in another extension given growing electricity demand and the plant’s role in providing carbon-free power to the grid.

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Some board members raised concerns about granting a certification that would allow the NRC to reauthorize the plant’s permits through 2045.

“There’s every reason to think the California entities responsible for making the decision about continuing operation, namely the California [Independent System Operator] and the Energy Commission, all of them are sort of leaning toward continuing to operate this facility,” said boardmember Dominic Roques. “I’d like us to be consistent with state law at least, and imply that we are consistent with ending operation at five years.”

Other board members noted that regulators could revisit the permits in five years or sooner if state and federal laws changes, and the board ultimately approved the permit.

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Deadly bird flu found in California elephant seals for the first time

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Deadly bird flu found in California elephant seals for the first time

The H5N1 bird flu virus that devastated South American elephant seal populations has been confirmed in seals at California’s Año Nuevo State Park, researchers from UC Davis and UC Santa Cruz announced Wednesday.

The virus has ravaged wild, commercial and domestic animals across the globe and was found last week in seven weaned pups. The confirmation came from the U.S. Department of Agriculture’s National Veterinary Services Laboratory in Ames, Iowa.

“This is exceptionally rapid detection of an outbreak in free-ranging marine mammals,” said Professor Christine Johnson, director of the Institute for Pandemic Insights at UC Davis’ Weill School of Veterinary Medicine. “We have most likely identified the very first cases here because of coordinated teams that have been on high alert with active surveillance for this disease for some time.”

Since last week, when researchers began noticing neurological and respoiratory signs of the disease in some animals, 30 seals have died, said Roxanne Beltran, a professor of ecology and evolutionary biology at UC Santa Cruz. Twenty-nine were weaned pups and the other was an adult male. The team has so far confirmed the virus in only seven of the dead pups.

Infected animals often have tremors convulsions, seizures and muscle weakness, Johnson said.

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Beltran said teams from UC Santa Cruz, UC Davis and California State Parks monitor the animals 260 days of the year, “including every day from December 15 to March 1” when the animals typically come ashore to breed, give birth and nurse.

The concerning behavior and deaths were first noticed Feb. 19.

“This is one of the most well-studied elephant seal colonies on the planet,” she said. “We know the seals so well that it’s very obvious to us when something is abnormal. And so my team was out that morning and we observed abnormal behaviors in seals and increased mortality that we had not seen the day before in those exact same locations. So we were very confident that we caught the beginning of this outbreak.”

In late 2022, the virus decimated southern elephant seal populations in South America and several sub-Antarctic Islands. At some colonies in Argentina, 97% of pups died, while on South Georgia Island, researchers reported a 47% decline in breeding females between 2022 and 2024. Researchers believe tens of thousands of animals died.

More than 30,000 sea lions in Peru and Chile died between 2022 and 2024. In Argentina, roughly 1,300 sea lions and fur seals perished.

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At the time, researchers were not sure why northern Pacific populations were not infected, but suspected previous or milder strains of the virus conferred some immunity.

The virus is better known in the U.S. for sweeping through the nation’s dairy herds, where it infected dozens of dairy workers, millions of cows and thousands of wild, feral and domestic mammals. It’s also been found in wild birds and killed millions of commercial chickens, geese and ducks.

Two Americans have died from the virus since 2024, and 71 have been infected. The vast majority were dairy or commercial poultry workers. One death was that of a Louisiana man who had underlying conditions and was believed to have been exposed via backyard poultry or wild birds.

Scientists at UC Santa Cruz and UC Davis increased their surveillance of the elephant seals in Año Nuevo in recent years. The catastrophic effect of the disease prompted worry that it would spread to California elephant seals, said Beltran, whose lab leads UC Santa Cruz’s northern elephant seal research program at Año Nuevo.

Johnson, the UC Davis researcher, said the team has been working with stranding networks across the Pacific region for several years — sampling the tissue of birds, elephant seals and other marine mammals. They have not seen the virus in other California marine mammals. Two previous outbreaks of bird flu in U.S. marine mammals occurred in Maine in 2022 and Washington in 2023, affecting gray and harbor seals.

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The virus in the animals has not yet been fully sequenced, so it’s unclear how the animals were exposed.

“We think the transmission is actually from dead and dying sea birds” living among the sea lions, Johnson said. “But we’ll certainly be investigating if there’s any mammal-to-mammal transmission.”

Genetic sequencing from southern elephant seal populations in Argentina suggested that version of the virus had acquired mutations that allowed it to pass between mammals.

The H5N1 virus was first detected in geese in China in 1996. Since then it has spread across the globe, reaching North America in 2021. The only continent where it has not been detected is Oceania.

Año Nuevo State Park, just north of Santa Cruz, is home to a colony of some 5,000 elephant seals during the winter breeding season. About 1,350 seals were on the beach when the outbreak began. Other large California colonies are located at Piedras Blancas and Point Reyes National Sea Shore. Most of those animals — roughly 900 — are weaned pups.

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It’s “important to keep this in context. So far, avian influenza has affected only a small proportion of the weaned at this time, and there are still thousands of apparently healthy animals in the population,” Beltran said in a press conference.

Public access to the park has been closed and guided elephant seal tours canceled.

Health and wildlife officials urge beachgoers to keep a safe distance from wildlife and keep dogs leashed because the virus is contagious.

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When slowing down can save a life: Training L.A. law enforcement to understand autism

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When slowing down can save a life: Training L.A. law enforcement to understand autism

Kate Movius moved among a roomful of Los Angeles County sheriff’s deputies, passing out a pop trivia quiz and paper prism glasses.

She told them to put on the vision-distorting glasses, and to write with their nondominant hand. As they filled out the tests, Movius moved about the City of Industry classroom pounding abruptly on tables. Then came the cowbell. An aide flashed the overhead lights on and off at random. The goal was to help the deputies understand the feeling of sensory overwhelm, which many autistic people experience when incoming stimulation exceeds their capacity to process.

“So what can you do to assist somebody, or de-escalate somebody, or get information from someone who suffers from a sensory disorder?” Movius asked the rattled crowd afterward. “We can minimize sensory input. … That might be the difference between them being able to stay calm and them taking off.”

Movius, founder of the consultancy Autism Interaction Solutions, is one of a growing number of people around the U.S. working to teach law enforcement agencies to recognize autistic behaviors and ensure that encounters between neurodevelopmentally disabled people and law enforcement end safely.

She and City of Industry Mayor Cory Moss later passed out bags filled with tools donated by the city to aid interactions: a pair of noise-damping headphones to decrease auditory input, a whiteboard, a set of communication cards with words and images to point to, fidget toys to calm and distract.

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“The thing about autistic behavior when it comes to law enforcement is a lot of it may look suspicious, and a lot of it may feel very disrespectful,” said Movius, who is also the parent of an autistic 25-year-old man. Responding officers, she said, “are not coming in thinking, ‘Could this be a developmentally disabled person?’ I would love for them to have that in the back of their minds.”

A sheriff’s deputy reads a pamphlet on autism during the training program.

(Genaro Molina / Los Angeles Times)

Autism spectrum disorder is a developmental condition that manifests differently in nearly every person who has it. Symptoms cluster around difficulties in communication, social interaction and sensory processing.

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An autistic person stopped by police might hold the officer’s gaze intensely or not look at them at all. They may repeat a phrase from a movie, repeat the officer’s question or temporarily lose their ability to speak. They might flee.

All are common involuntary responses for an autistic person in a stressful situation, which a sudden encounter with law enforcement almost invariably is. To someone unfamiliar with the condition, all could be mistaken for intoxication, defiance or guilt.

Autism rates in the U.S. have increased nearly fivefold since the Centers for Disease Control began tracking diagnoses in 2000, a rise experts attribute to broadening diagnostic criteria and better efforts to identify children who have the condition.

The CDC now estimates that 1 in 31 U.S. 8-year-olds is autistic. In California, the rate is closer to 1 in 22 children.

As diverse as the autistic population is, people across the spectrum are more likely to be stopped by law enforcement than neurotypical peers.

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About 15% of all people in the U.S. ages 18 to 24 have been stopped by police at some point in their lives, according to federal data. While the government doesn’t track encounters for disabled people specifically, a separate study found that 20% of autistic people ages 21 to 25 have been stopped, often after a report or officer observation of a person behaving unusually.

Some of these encounters have ended in tragedy.

In 2021, Los Angeles County sheriff’s deputies shot and permanently paralyzed a deaf autistic man after family members called 911 for help getting him to a hospital.

Isaias Cervantes, 25, had become distressed about a shopping trip and started pushing his mother, his family’s attorney said at the time. He resisted as two deputies attempted to handcuff him and one of the deputies shot him, according to a county report.

In 2024, Ryan Gainer’s family called 911 for support when the 15-year-old became agitated. Responding San Bernardino County sheriff‘s deputies shot and killed him outside his Apple Valley home.

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Last year, police in Pocatello, Idaho, shot Victor Perez, 17, through a chain-link fence after the nonspeaking teenager did not heed their shouted commands. He died from his injuries in April.

Autism Interaction Solutions program in the City of Industry.

Sheriff’s deputies take a trivia quiz using their non-writing hands, while wearing vision-distorting glasses, as Kate Movius, standing left, and Industry Mayor Cory Moss, right, ring cowbells. The idea was to help them understand the sensory overwhelm some autistic people experience.

(Genaro Molina / Los Angeles Times)

As early as 2001, the FBI published a bulletin on police officers’ need to adjust their approach when interacting with autistic people.

“Officers should not interpret an autistic individual’s failure to respond to orders or questions as a lack of cooperation or as a reason for increased force,” the bulletin stated. “They also need to recognize that individuals with autism often confess to crimes that they did not commit or may respond to the last choice in a sequence presented in a question.”

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But a review of multiple studies last year by Chapman University researchers found that while up to 60% of officers have been on a call involving an autistic person, only 5% to 40% had received any training on autism.

In response, universities, nonprofits and private consultants across the U.S. have developed curricula for law enforcement on how to recognize autistic behaviors and adapt accordingly.

The primary goal, Movius told deputies at November’s training session, is to slow interactions down to the greatest extent possible. Many autistic people require additional time to process auditory input and verbal responses, particularly in unfamiliar circumstances.

If at all possible, Movius said, wait 20 seconds for a response after asking a question. It may feel unnaturally long, she acknowledged. But every additional question or instruction fired in that time — what’s your name? Did you hear me? Look at me. What’s your name? — just decreases the likelihood that a person struggling to process will be able to respond at all.

Moss’ son, Brayden, then 17, was one of several teenagers and young adults with autism who spoke or wrote statements to be read to the deputies. The diversity of their speech patterns and physical mannerisms showed the breadth of the spectrum. Some were fluently verbal, while others communicated through signs and notes.

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“This population is so diverse. It is so complicated. But if there’s anything that we can show [deputies] in here that will make them stop and think, ‘Hey, what if this is autism?’ … it is saving lives,” Moss said.

Cory Moss and Kate Movius hug

Mayor Cory Moss, left, and Kate Movius hug at the end of the training program last November. Movius started Autism Interaction Solutions after her son was born with profound autism.

(Genaro Molina / Los Angeles Times)

Some disability advocates cautioned that it takes more than isolated training sessions to ensure encounters end safely.

Judy Mark, co-founder and president of the nonprofit Disability Voices United, says she trained thousands of officers on safe autism interactions but stopped after Cervantes’ shooting. She now urges families concerned about an autistic child’s safety to call an ambulance rather than law enforcement.

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“I have significant concern about these training sessions,” Mark said. “People get comfort from it, and the Sheriff’s Department can check the box.”

While not a panacea, supporters argue that a brief course is better than no preparation at all. Some years ago, Movius received a letter from a man whose profoundly autistic son slipped away as the family loaded their car at the beach. He opened the unlocked door of a police vehicle, climbed into the back and began to flail in distress.

Though surprised, the officer seated at the wheel de-escalated the situation and helped the young man find his family, the father wrote to Movius. He had just been to her training.

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