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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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After bold pledge, EPA shelves microplastics testing in U.S. drinking water

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After bold pledge, EPA shelves microplastics testing in U.S. drinking water

For the next five years, the Environmental Protection Agency has indicated it will not require public water utilities to test for microplastics or pharmaceuticals in drinking water, according to a proposed rule published in the Federal Register.

On Friday, the EPA submitted a list of chemicals it plans to test for under the Unregulated Contaminant Monitoring Rule, a mandatory testing program used to collect information about concerning chemicals in drinking water that could be harming human health. It did not include microplastics or pharmaceuticals.

The omissions come after announcements by EPA Administrator Lee Zeldin earlier this year that his agency was designating microplastics and pharmaceuticals priority contaminants for testing.

“This is a direct response to the concern of millions of Americans who have long demanded answers about what they and their families are drinking every day,” he said at an April news conference with Health and Human Secretary Robert F. Kennedy Jr. at EPA headquarters.

Zeldin’s announcement was seen at the time as a move to placate the increasingly disgruntled Make America Healthy Again contingent of Trump supporters.

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Now the agency says it has no validated or standardized method to test for the plastic particles in drinking water, and wouldn’t be able to develop one before December, when testing is required to begin.

Among the 33 chemicals the EPA will require water utilities to test for are seven PFAS, or forever chemicals, and three pesticide residues.

It will be five years before the EPA proposes another list.

The EPA did not respond to a request for comment.

The agency noted in its proposed rule that it will collaborate with other federal agencies to “evaluate risks and exposures” of microplastics for future monitoring.

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Environmentalists reacted with frustration and resignation. They pointed out that the European Union has developed methods to test for the tiny plastic particles, which have been found in people’s blood, brains and lung tissue. California has one in the works.

“The California water board has spent a lot of time and money on how to measure in drinking water,” said Judith Enck, a former EPA regional administrator and president of the anti-plastic environmental group Beyond Plastics. “EPA should give them a call.”

California was required by a 2018 state law to establish a protocol for local water utilities to test for the particles in drinking water. The state has not yet begun reporting its results, but protocols were established in 2021. Blair Robertson, a spokesman for the State Water Resources Control Board, said it’s not “a fully validated, end-to-end regulatory method” yet.

At the April meeting, Zeldin announced that he would place microplastics on what is known as the Contaminant Candidate List, which acts as a preliminary “watch list” of unregulated, priority contaminants in drinking water. Like the mandatory monitoring list, it is updated only every five years. The most recent list was published on April 2 — the day he made his announcement.

“Americans have been ignored as they sound the alarm about plastics in their drinking water,” Zeldin said during the announcement. “That ends today by placing microplastics on the contaminant candidate list for the first time ever. EPA will follow the science, will pursue answers and will hold ourselves to the highest standards to protect the health of Americans.”

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There appears to be no clear association between these two lists, although the contaminant list is supposed to inform the monitoring list. Seventy-five chemicals and four chemical groups (microplastics, pharmaceuticals, PFAS chemicals, and disinfection byproducts) were listed on the 2026 contaminant list. Only seven of those chemicals were also on the proposed monitoring list (as well as seven PFAS chemicals).

When Zeldin announced microplastics as “‘a priority contaminant for regulation,’ and called it ‘a historic action on microplastics,’ he made it seem like the administration was going to take microplastics seriously,” said Mary Grant, water policy director for the environmental group Food & Water Watch.

“By not including them, they made it clear they don’t actually have plans to immediately address this crisis by getting the real-world monitoring data that we need right now to really start correcting ourselves,” she said.

Craig Davis, senior director of plastics chemistry at the American Chemistry Councilthe nation’s largest trade group for chemical companies — said that while his organization supports microplastic research, it also agrees with the EPA’s decision not to include them in the monitoring list.

“National drinking water monitoring should be based on validated, standardized methods that can produce reliable and comparable data,” said Davis in a statement. He said “limited” national monitoring resources should be focused where data can produce “actionable public health information.”

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The public has 60 days to comment once the plan is published in the Federal Register.

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Hospital visits for smoke inhalation spiked during Boyle Heights warehouse fire

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Hospital visits for smoke inhalation spiked during Boyle Heights warehouse fire

The number of Angelenos who went to the hospital with throat pain and concerns about smoke inhalation spiked as a fire burned through the massive Lineage cold storage warehouse in Boyle Heights this month, The Times has learned.

The blaze burned for eight days beginning June 17 and involved solar panels, insulation foam and other industrial materials.

During that time, more than three times as many people went to emergency departments within 10 miles of the warehouse mentioning the fire or smoke inhalation compared with the two weeks prior, according to data from the Los Angeles County Department of Public Health obtained through a public records request.

The agency also noted a near doubling of patients mentioning throat pain within five miles of the fire June 21 — 1.9 times the baseline levels.

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Usually, fewer than 50 people go to the emergency room each day for throat pain, and fewer than 20 people for smoke inhalation, the department said.

The hospitalization data was tracked through the department’s syndromic surveillance project, which monitors trends in what people report when they come to emergency departments in L.A. County, as well as diagnosis codes noted by providers. The system is not as comprehensive as full patient health records, and clinicians may not always include key words about “fire,” “smoke” or other circumstantial information in their diagnoses, the public health department said.

As such, it “cannot capture the true number of [emergency department] visits related to symptoms from the fire and likely underestimates the true burden of fire related symptoms,” the department said.

Perhaps unexpectedly, the department said it did not note a substantial increase in asthma, acute respiratory symptoms or chronic obstructive pulmonary disease-related emergency department visits during the fire.

But even these preliminary findings are concerning, experts said. The fire is believed to have started on the solar array on the roof of the 500,000 square-foot building, which housed 85 million pounds of frozen food. It then reached an ammonia line, prompting two brief shelter-in-place orders for nearby residents.

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Over the next week, the fire continued to burn through dense insulation foam within the building’s walls and other unknown industrial materials, blanketing much of L.A. in acrid smoke. Residents in downtown L.A., northeast L.A., Burbank, the San Gabriel Valley and many other parts of the city and county reported seeing and smelling the fumes.

The South Coast Air Quality Management District issued multiple warnings about unhealthy levels of PM 2.5, or fine particulate matter. The city and county opened two smoke respite shelters in the immediate area so that people could breath cleaner air.

It is still unclear what exactly was in the smoke that people breathed in. Industrial fires release far more materials than the burned wood smoke that is emitted during wildfires.

“The makeup of the smoke can include toxic chemicals, fine particles and other serious risks to lung health depending on fire conditions and what is burned,” Will Barrett, assistant vice president for nationwide clean air policy at the American Lung Assn., said as the fire was burning. Children and elderly people are particularly at risk.

David Eisenman, director of the UCLA Center for Public Health and Disasters, said urban industrial fires also can represent a hazard that standard PM 2.5 warnings don’t always address. Those advisories are “blunt instruments” that don’t adequately capture emissions from burning man-made goods — or convey that the source of pollution may include burning batteries or toxic refrigerants, he said.

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The fact that initial numbers don’t show a spike in asthma attacks is “somewhat reassuring,” Eisenman said. But “people may have gone to their primary care doctors, which this would not capture. This data deserves follow up.”

The air district and the U.S. Environmental Protection Agency deployed air monitors to assess particulate matter, airborne toxic metals and other harmful compounds during the early days of the blaze. The air district said it didn’t find significant levels of air toxics during the first two days of the fire, although it did record significantly elevated concentrations of particulate matter within the plume downwind.

Some of the measurements it took with mobile monitors, which are five-minute snapshots, also showed increased bromine and chlorine, which often are found when buildings burn and were at levels “below short-term health-based exposure thresholds,” the air district said. It began continuous PM 2.5. monitoring at two nearby elementary schools on the third day.

The L.A. Fire Department said it detected low-levels of toxic hydrogen fluoride on the second day of the fire, which can be a byproduct of burning lithium-ion batteries.

Lineage, the tenant-operator of the warehouse, said no concentrations of ammonia were detected in the air at any time.

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“There’s no doubt this fire has had a huge impact on the local community, and we are committed to showing up in every way we can,” company officials wrote in a statement last week. They said Lineage worked closely with the Fire Department during the blaze and delivered masks, air purifiers and other supplies to the community, and will work to ensure the fastest cleanup possible.

The long-term health effects of the fire and its smoke probably won’t be known unless researchers conduct a follow-up study, said Eisenman of UCLA.

For example, there may have been delayed pulmonary effects from the hydrogen fluoride and burning insulation foam that — when combined with the elevated PM 2.5 levels in a dense urban environment — produced health effects that didn’t show up in the emergency room data.

“They will show up in increased primary care office visits and exacerbations of chronic disease over the next few weeks,” he said. “So from a public health standpoint, this fire is not over.”

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Water from Boyle Heights warehouse fire carries foam into L.A. River, sparks testing

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Water from Boyle Heights warehouse fire carries foam into L.A. River, sparks testing

All the water unleashed onto the warehouse fire in Boyle Heights — some of it 480 gallons at a time by helicopter — had to end up somewhere.

That somewhere is the Los Angeles River.

Los Angeles Fire Department crews ripped through 50-foot walls filled with foam insulation to get to the building’s steel skeleton and its storage racks.

Charred chunks of foam have been floating from the burn site, partially blocking storm drains. Now organizers from East Yard Communities for Environmental Justice are teaming up with scientists from UCLA and Columbia University to find out more about what’s in the runoff.

“The community here is really interested in knowing, ‘Are there any contaminants that are potentially making their way down to the L.A. River?’” said Yoshira “Yoshi” Ornelas Van Horne, UCLA assistant professor in environmental health sciences. “We really can’t answer that unless we actually have measures and samples analyzed.”

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Water samples collected directly from the warehouse fire runoff have been shipped to Columbia‘s Multi-Element Trace Analysis Laboratory in New York, which has a spectrometer that can identify trace levels of elements. The lab also has relationships with researchers in Southern California.

1

2 Casey Cooper holds a water sample.

1. Emmanuel Carrera Ruedas, left, and Casey Cooper prep containers to take water samples from the L.A. River. 2. Casey Cooper holds a water sample. (Christina House / Los Angeles Times)

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The data will then come back to UCLA for analysis. For now, the scientists and community advocates only have the money to test for copper, lead and arsenic, Ornelas Van Horne said. Residents have expressed interest in testing for more contaminants.

As the water from the firefighting efforts trickles through the warehouse in rivulets, it forms a stream at the corner of S. Indiana and Noakes streets, that gushed into the storm drain. On a recent visit, the water traversed a smoky 10-foot canyon of charred foam and twisted wall panels on its way to the drain.

From there, the water flows to the L.A. River. Despite the fact that its concrete design is intended to whisk water out of the city as fast as possible, life stubbornly persists in the river and nearby. Recreational swimming is not permitted, yet anglers fishing for tilapia, largemouth bass and carp are a common sight along the rocky sides of the soft-bottom areas.

The L.A. River, and all it carries with it, meets the ocean in Long Beach.

The L.A. County Public Works Department said it has deployed three containment booms — floating barriers — on the L.A. River, and is continuing to monitor the water as it makes its way to the ocean.

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Emmanuel Carrera Ruedas takes a water sample.

Emmanuel Carrera Ruedas takes a water sample.

(Christina House / Los Angeles Times)

Before it gets there, the river passes through the Dominguez wetlands, where Public Works is removing some number of dead fish. The wetland has absorbed toxic runoff from a warehouse fire before, resulting in a fish die-off.

“For so long, the L.A. River has been used as a dumping ground for all kinds of chemicals,” said Emmanuel Carrera Ruedas, a community scientist and member of East Yard Communities for Environmental Justice.

Pollution has plagued the L.A. River, but it does have allies. In the 1980s, the Friends of the LA River pushed to address street runoff and trash that had made the water body infamous. Significant progress from advocacy and government initiatives improved water conditions, but these efforts have not been equally distributed.

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Carrera said the samples represent “proof of what’s actually going on, and accountability, too, for the city, of not just what’s happening in our air, but what’s actually happening in our waterways.”

The first samples for the project were taken last Friday, the second day of the fire.

They were the first of 20 samples the research groups have agreed to test at no cost to see if any exceed regulatory standards and could pose a risk to people nearby.

The warehouse fire represents the latest environmental disaster for people in Boyle Heights and East L.A. Just four weeks ago, a telecommunications crew accidentally struck one of the many oil pipelines beneath the L.A. area, spilling 25,000 gallons of crude oil near Eastern and Cesar Chavez avenues — including into storm drains feeding to the L.A. River.

“I think it really is difficult to see disaster after disaster hit the communities here, with not a lot of talk about how we can move through these disasters together,” said Casey Cooper, a volunteer community scientist involved in the sampling. They were inspired, they said, by the response of neighbors, and how people were supporting one another.

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Results from the laboratory analysis could be back to Ornelas Van Horne within a month.

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