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'I don't want him to go': An autistic teen and his family face stark choices

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'I don't want him to go': An autistic teen and his family face stark choices

Christine LyBurtus was aching and fearful of what might happen when her 13-year-old son returned home.

Noah had been sent to Children’s Hospital of Orange County for a psychiatric hold lasting up to 72 hours after he punched at walls, flipped over a table, ripped out a chunk of his mother’s hair and tried to break a car window.

“There’s nothing else to call it except a psychotic episode,” LyBurtus said.

The clock was ticking on that August day in 2022. The single mother wanted help to prevent such an episode from happening again, maybe with a different medication. Hospital staff were waiting for a psychiatric bed, possibly at another hospital with a dedicated unit for patients with autism or other developmental disabilities.

But as the hours ran out on the hold, it became clear that wasn’t happening. LyBurtus brought Noah home to their Fullerton apartment.

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“When he came back home, it kind of broke my heart,” said his sister, Karissa, who is two years older. “He looked like, ‘What the heck did you guys put me into?’”

Christine LyBurtus makes a snack for Noah.

(Allen J. Schaben / Los Angeles Times)

The next night, Noah was back in the ER after smashing a television and attacking his mother. This time, he was transferred to a different hospital for three weeks, prescribed medications for psychosis, and then sent to a residential facility in Garden Grove.

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LyBurtus said she was told it would be a stopgap measure — just for three weeks — until she could line up more help at home. But when she phoned to ask about visiting her son, LyBurtus said she was told she couldn’t see him for a month.

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“He lives here now,” someone told her, she said, and the staff needed time to “break him in.”

LyBurtus felt like she was being pushed to give up her son, instead of getting the help her family needed. She insisted on bringing him home.

::

Autism is a developmental condition that can shape how people think, communicate, move and process sensory information. When Noah was 3, a doctor noted he was a “very cute little boy” who played alone, rocked back and forth, and sometimes bit himself. Noah’s eye contact was “fleeting.” He could speak about 20 words, but often cried or pulled his mother’s hand to communicate.

The physician summed up his behavior as “characteristic of a DSM-IV diagnosis of autistic disorder.”

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When he was in elementary school, LyBurtus stopped working full time outside the home and enrolled in a state program that paid her as his caregiver. She relies on Medi-Cal for his medical care, and much of his schooling has been in Orange County-run programs for children with moderate to severe disabilities.

Noah does not speak but sometimes uses pictures, an app on a tablet, or some sign language to communicate. When a reporter visited their home last year, Noah bobbed his head and shoulders as he listened to music on his iPad. He flapped his hands as LyBurtus made him a peanut-butter-and-banana smoothie, and then dutifully followed her instructions to chuck the peel and put the almond milk away. It was a good day, LyBurtus said with relief.

But on other days, LyBurtus said her son could be rigid; his demands, unpredictable. “Some days he’s fixated on having three pairs of pants on … Some days he wants to take seven showers. The next day, I can’t get him to take showers.”

Christine LyBurtus greets son Noah as he arrives home on a bus

Christine LyBurtus greets Noah as he arrives home from school.

(Allen J. Schaben / Los Angeles Times)

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When frustrated, Noah might erupt, banging his head against walls and trying to jump out the windows of their apartment. He had kicked and bitten his mother when she tried to redirect him. In the worst instances, LyBurtus had resorted to hiding in the bathroom — her “safe room” — and urged Karissa to lock herself in the bedroom.

As Noah grew taller and stronger, LyBurtus stripped bare the walls of her apartment to try to make it safe, installed shatterproof windows and removed a knob from a closet door to prevent Noah from using it as a foothold to scale over the top of the closet door. She made sure to flag her address for the Fullerton Police Department so it knew her son was developmentally disabled.

“I’m just so grateful that my son never got shot,” LyBurtus said.

Each of the 911 calls was the start of a Sisyphean routine. Noah “has been challenging to place in [a] mental health facility due to behavioral care needs with severe autism,” a doctor wrote when he was back at Children’s Hospital of Orange County yet again.

Noah leaps into the air while inside his home in Fullerton

Noah leaps into the air inside his Fullerton home. At left is Terrence Morris, one of Noah’s caregivers.

(Mel Melcon / Los Angeles Times)

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As the family tried to get through each crisis, LyBurtus was also facing a common struggle among parents of California children with disabilities: not getting the help they were supposed to receive from the state.

LyBurtus was getting assistance through a local regional center, one of the nonprofit agencies contracted by the California Department of Developmental Services. She said she’d been authorized to receive 40 hours weekly of respite care — meant to relieve families of children with disabilities for short periods — but was sometimes receiving only 12 to 16 hours.

She was also supposed to have two workers at a time, LyBurtus said, but caregivers were so scarce that she was scheduling one at a time in order to cover as many hours as she could.

In the meantime, Noah wasn’t sleeping and she was going through so much laundry detergent and quarters that her grocery budget was drained. At one point, she wanted to go to a food bank, but there would be no one to watch him.

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“I could not be anymore tired and frustrated!!!!” she wrote to her regional center coordinator. “Is the only way Noah is going to get help [is] if I abandoned him and surrender him to the State!?!?”

Christine LyBurtus

Christine LyBurtus said she’s struggled to find the right care for Noah.

(Allen J. Schaben / Los Angeles Times)

::

Across the country, surging numbers of young people have landed in emergency rooms in the throes of a mental health crisis amid a shortage of needed care. Children in need of psychiatric care are routinely held in emergency departments for hours or even days. Even amid COVID, as people tried to avoid emergency rooms, mental health-related visits continued to rise among teens in 2021 and 2022.

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Among those hit hardest by the crisis are autistic youth, who turn up in emergency rooms at higher rates than other kids — and are much more likely to do so for psychiatric issues. Many have overlapping conditions such as anxiety, and researchers have also found they face a higher risk of abuse and trauma.

“We’re a misunderstood, marginalized population of people” at higher risk of suicide, Lisa Morgan, founder of the Autism and Suicide Prevention Workgroup, said at a national meeting.

Yet the available assistance is “not designed for us.”

According to the National Autism Indicators Report, more than half of parents of autistic youth who were surveyed had trouble getting the mental health services their autistic kids needed, with 22% saying it was “very difficult” or “impossible.” A report commissioned by L.A. County found autistic youth were especially likely to languish in ERs amid few options for ongoing psychiatric treatment.

 Karissa left, interacts with brother Noah on a couch

Karissa interacts with her brother, Noah, as he watches a video after school.

(Allen J. Schaben / Los Angeles Times)

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In decades past, many psychiatrists were unwilling to diagnose mental health disorders in autistic people, believing “it was either part of the autism or for other reasons it was undiagnosable,” said Jessica Rast, an assistant research professor affiliated with the A.J. Drexel Autism Institute. Much more is now known about both autism and mental health treatment, but experts say the two fields aren’t consistently linked in practice.

Mental health providers may focus on an autism diagnosis for a prospective patient and say, “‘Well, that’s not in our wheelhouse. We’re treating things like depression or anxiety,’” said Brenna Maddox, assistant professor of psychiatry at the University of North Carolina School of Medicine.

Yet patients or their families “weren’t asking for autism treatment. They were asking for depression or anxiety or other mental health treatment,” Maddox said.

In the meantime, the system that serves children with developmental disabilities has faltered.

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“Never have I seen that we can’t staff the needed things on so many cases,” Larry Landauer, executive director of the Regional Center of Orange County, said last year. Statewide, “there’s thousands and thousands of cases that are struggling.”

“If I’m a respite worker and I get called on to provide help to families … who am I going to select?” Landauer asked. “The [person] that watches TV and plays on his iPad and I just sit and monitor him? Or do I take someone that is significantly behaviorally challenged — that pulls my hair, that scares me all the time, that tries to run out the door? … Those are the ones getting left out.”

::

The fall and winter of 2022 were so trying that LyBurtus eventually took matters into her own hands. Noah bit his mother and smashed a bathroom window and tried to climb out before the Fullerton Fire Department arrived. Weeks later, LyBurtus had to dial 911 again after he bit his sister’s finger badly enough to draw blood.

Caregiver Terrence Morris, left, keeps a watchful eye on Noah

Caregiver Terrence Morris, left, keeps a watchful eye on Noah.

(Mel Melcon / Los Angeles Times)

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He ended up in a hold at Children’s Hospital of Orange County, which searched for another facility that might help him, but “all placement options declined patient placement,” according to his medical records.

Noah was again sent home with his mother, but the next day, he was back at Children’s Hospital of Orange County after slamming his head against a tile floor.

LyBurtus, frantic and bruised, made call after call and finally used her credit card to pay for an ambulance to take him to UCLA Resnick Neuropsychiatric Hospital, where he was admitted.

Week by week, psychiatrists there said Noah seemed to be making some strides as they adjusted his alphabet soup of medications. But hospital staff struggled to understand what would set him off.

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Once, while playing cards, Noah suddenly started knocking the cards off the table and struck another patient in the face. Another day, he appeared suddenly to be frightened after using the bathroom, and then charged at a computer plugged in nearby.

But there were also days when he danced to a Michael Jackson song, or played Giant Jenga outside on the deck. One day, a doctor wrote, “He made eye contact for a few seconds. I waved to him, and he looked at his hand, as though he was wondering what to do with it in return.”

Christine LyBurtus washes the face of son Noah

Christine LyBurtus washes her son’s face. When Noah was 3, a doctor noted he was a “very cute little boy” who played alone, rocked back and forth, and sometimes bit himself.

(Mel Melcon / Los Angeles Times)

LyBurtus was straining to find more help at home so UCLA held off on discharging him, but at the end of January 2023 Noah was sent home. With no changes in medication planned, “and the strong possibility that Noah grew tired of the inpatient setting, the ward no longer was deemed therapeutic or necessary,” a doctor wrote.

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Less than a month later, he was back in the emergency room at Children’s Hospital of Orange County after biting and attacking his mother.

A psychiatrist at the pediatric hospital wrote that because he had limited ability to communicate, another round of psychiatric hospitalization would do little unless it was specialized for “individuals with neurodevelopmental needs.” When the 72-hour hold at children’s hospital ran out, LyBurtus asked for an ambulance to take Noah home, fearful of driving him herself.

In May, the month Noah turned 14, LyBurtus heard the regional center had found a place for Noah: a four-bed facility in Rio Linda, a tiny town near Sacramento that she’d never heard of. He could live there for more than a year, she was told, and then hopefully return home with the right support.

Christine LyBurtus shows photographs to son Noah

Christine LyBurtus shows photographs to Noah.

(Mel Melcon / Los Angeles Times)

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But LyBurtus fretted about what she would do if something happened to him so far away. She felt, she said, like she had failed her child. Months passed as they waited for a spot there; LyBurtus said she was told they were trying to hire the needed staff.

“I don’t want him to go,” she said, “but I don’t want to continue going on the way that we’re going on.”

Then in August, LyBurtus was told the regional center had found a spot at a facility much closer to home: the state-run South STAR facility in Costa Mesa, about 20 miles from their apartment. Noah would occupy one of only 15 STAR beds across the state for developmentally disabled adolescents in “acute crisis.”

On a bright September morning, LyBurtus pulled up at an unassuming gray house with a “Home Sweet Home” sign by the door. The three teens living there were gone for the morning while an administrator and South STAR program director Kim Hamilton-Royse showed LyBurtus around the house.

Minutes into the tour, LyBurtus found herself crying. Hamilton-Royse stopped her explanation of the daily schedule. “I know this is super hard for you,” she said gently.

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But LyBurtus brightened at the sight of the sensory room outfitted with crash pads and a mesmerizing, colorful cylinder of bubbling water. Hamilton-Royse pointed out a vibrating chair and added that they had a projector that would fill the room with illuminated stars.

LyBurtus took photos on her smartphone to show Noah. “You’re not going to be able to get him out of here,” she said.

As they rounded the rest of the house — bedrooms with dressers secured to the wall, a living room with paintings of sailboats, a fish tank — Hamilton-Royse asked if LyBurtus felt any better.

Christine LyBurtus reacts while boxing up items for son Noah

Christine LyBurtus reacts while boxing up items for Noah’s move.

(Mel Melcon / Los Angeles Times)

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“I do,” she said. “I just hope that he can behave.”

Hamilton-Royse reassured her that South STAR had never kicked anyone out. “And we’ve had some really challenging folks,” she said.

“I promise you we’ll take very good care of him.”

As she returned to her car, LyBurtus took a deep breath. “It’s hard not to feel like I’m betraying him,” she said, her voice shaking. “But I can’t keep living like this, you know?”

1

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Christine Lyburtus visiting a care facility

2 Christine LyBurtus in a hallway of a care facility

3 Christine LyBurtus standing at the front gate of a residential care facility

1. Christine Lyburtus tours a residential care facility in Costa Mesa, about 20 minutes from her home. (Irfan Khan / Los Angeles Times) 2. At the South STAR facility, LyBurtus was told, Noah would occupy one of only 15 STAR beds across the state for developmentally disabled adolescents in “acute crisis.” (Irfan Khan / Los Angeles Times) 3. “I just hope that he can behave,” LyBurtus said of son Noah. (Irfan Khan / Los Angeles Times)

Three days later, Noah went back to the Children’s Hospital of Orange County on another psychiatric hold. He came home, then was back in the emergency department a week and a half later.

::

The October night before Noah left home, LyBurtus had brought home sushi for him, one of his favorite foods. He fell asleep around 6:30 p.m, and woke up again at 1 a.m. LyBurtus gave him his medication and as he drifted back to sleep, his mother held him, enjoying the peace.

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When he woke up in the morning, she could tell he knew something was up. His clothes had been packed. She’d already shown him photos of the Costa Mesa home and told him, “This is where you’re going. I’m still your mom. I’m still going to go and see you.”

Noah, 14, embraces his mother Christine LyBurtus

Noah embraces his mother shortly before he was picked up and driven to a residential care facility in Costa Mesa.

(Mel Melcon / Los Angeles Times)

When the black SUV arrived, LyBurtus offered Oreos to coax him into the unfamiliar car. She followed the SUV in her car, staying far enough behind to avoid having Noah see her when he arrived. LyBurtus had been told it would ease the transition.

Back at home, she sank into the bathtub, utterly spent. “I’m going to have to just go with trusting this process as much as I can,” she said, “because I don’t have another choice right now.”

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The next day, she met with the South STAR staff to tell them more about Noah. What he likes to eat. What triggers him. His favorite things to do. The Costa Mesa home called whenever staff had physically restrained Noah, but when a weekend passed without a call, she felt some relief.

Lyburtus smiled at the photos and videos sent home: putting together an elaborate stacking toy, washing dishes. It felt like things were going well, LyBurtus said. The staff had scaled back the amount of psychiatric medication he was taking.

But more than a month later, when she first went to visit Noah, he excitedly took her to the front door, as if to say, “Let’s go,” she recalled. She gently told him she was just visiting.

Christine LyBurtus is comforted by Schahara Zad, left, and Terrence Morris, caregivers for her son Noah

Christine LyBurtus is comforted by caregivers Schahara Zad, left, and Terrence Morris after Noah moved into his residential care facility.

(Mel Melcon / Los Angeles Times)

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He led her to the side door instead. She steered him away again. They stepped into the courtyard, and Noah immediately went to the gate to exit.

LyBurtus fell into a funk. As she worried about Noah, she was also figuring out how to make ends meet. With Noah in the Costa Mesa home, Lyburtus was no longer being paid more than $4,000 a month as his caregiver, her sole source of income for years. She tried a number of jobs but ultimately found the work that suited her: caregiving for an elderly woman and children with disabilities.

Her second and third visits with Noah were easier. She snapped photos — Mother and son nestled together on the couch. Noah touching her forehead.

The STAR program runs up to 13 months. As time passed, the regional center had started talking to her about where Noah would go next. LyBurtus was startled.

Wasn’t the plan for him to come home, she asked?

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Christine Lyburtus, left, is briefed by  Kim Hamilton-Royse while touring a residential care facility

Christine LyBurtus, left, is briefed by Kim Hamilton-Royse while touring a residential care facility for her son.

(Irfan Khan/Los Angeles Times)

That was still on the table, LyBurtus said she was told. But if he wasn’t ready, they didn’t want to wait until the last minute to find somewhere else for Noah, who turned 15 in May.

LyBurtus wanted to block out the idea of him going to another facility.

“I never want to live the way we were living again,” she said.

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“But is that worse than him being hours away? I don’t know.”

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Science

An industrial chemical is showing up in fentanyl in the U.S., troubling scientists

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An industrial chemical is showing up in fentanyl in the U.S., troubling scientists

An industrial chemical used in plastic products has been cropping up in illegal drugs from California to Maine, a sudden and puzzling shift in the drug supply that has alarmed health researchers.

Its name is bis(2,2,6,6-tetramethyl-4-piperidyl) sebacate, commonly abbreviated as BTMPS. The chemical is used in plastic for protection against ultraviolet rays, as well as for other commercial uses.

In an analysis released Monday, researchers from UCLA, the National Institute of Standards and Technology (NIST) and other academic institutions and harm reduction groups collected and tested more than 170 samples of drugs that had been sold as fentanyl in Los Angeles and Philadelphia this summer. They found roughly a quarter of the drugs contained BTMPS.

Researchers called it the most sudden change in the U.S. illegal drug supply in recent history, based on chemical prevalence. They found that BTMPS sometimes dramatically exceeded the amount of fentanyl in drug samples and, in some cases, had made up more than a third of the drug sample.

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It was also a growing presence in fentanyl over the summer: In June, none of the L.A. fentanyl samples tested by the team contained BTMPS, the analysis found. By August, it was detected in 41% of them.

“This is effectively unprecedented,” said Morgan Godvin, one of the authors of the study and project director for Drug Checking Los Angeles, a UCLA project that works in partnership with the L.A. County Department of Public Health to analyze illicit drugs.

“We have no idea just how many people have been exposed,” Godvin said, but if the high prevalence among drug samples tested so far is any indication, “that translates to tens of thousands of fentanyl users being exposed to BTEMPS, sometimes at very high volume.”

The findings were publicly released as a preprint — research that has not been peer reviewed — on the website of Drug Checking Los Angeles and have been submitted to medRxiv, a website where scientists share preliminary findings.

BTMPS has been studied in rats for its potential to reduce withdrawal symptoms from morphine and affect nicotine use, but it can be toxic and even deadly to rodents at sufficient doses, and health researchers say there is an urgent need for more studies on its effects on the human body.

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The PubChem database lists a number of possible hazards associated with BTMPS, including skin irritation and eye damage. Godvin was alarmed by animal studies indicating dangers from inhaling BTMPS — such as tremors and shortness of breath — because smoking is now common in L.A. among people who use fentanyl.

People who use drugs have said that BTMPS can smell like bug spray or plastic and have reported blurred vision, nausea and coughing after ingesting it. One told researchers that “it smelled so bad I could barely smoke it.” The UCLA and NIST researchers warned that “with such a sudden and sustained prevalence in the drug supply, users are at risk of repeated, ongoing exposures, which may compound health effects.”

A 35-year-old man in Los Angeles said that in recent months, he had noticed a rubbery or synthetic taste in the fentanyl he used. “I was asking my friend that I buy from, ‘What the hell is this?’” said the man, who requested anonymity to speak about his drug use.

When he took samples that were supposed to be fentanyl to Drug Checking Los Angeles to analyze, he learned that some contained the strange chemical. The 35-year-old said he now tries to avoid BTMPS, but “a lot of people are just trying to get anything to keep from being sick” from opioid withdrawal.

Whatever clandestine labs are doing, he said, “we’re the guinea pigs.”

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L.A. and Philadelphia are far from the only places where the chemical has popped up: The team also detected BTMPS in trace amounts of drugs left behind on drug paraphernalia from other locations, including Delaware, Maryland and Nevada.

As of last week, a University of North Carolina program that tests drug samples from across the country had also found BTMPS in more than 200 samples from a dozen states stretching from the West Coast to Maine. UNC senior scientist Nabarun Dasgupta said the chemical began showing up in drug samples that it tested this summer, most often mingled with fentanyl, both in powder form and in fake pills.

Alex Krotulski, a director at the nonprofit Center for Forensic Science Research and Education in Pennsylvania, said the amount of BTMPS found in drug samples it has tested varies dramatically — sometimes making up a small amount, sometimes amounting to the “primary component” in the sample.

Unlike other adulterants added to fentanyl for their psychoactive effects, “it’s not like it’s something that you go out and you use a bunch of to get high,” Krotulski said. The UCLA and NIST team found that people who use drugs rated samples high in BTMPS as “bunk” — low in quality — and broadly saw it as “highly undesirable.”

Yet another oddity is that BTMPS has not followed a familiar path for new drugs in the U.S. Instead of showing up in one area and spreading to others, “this one has hit all at once across the U.S. within a two-week period,” said Tara Stamos-Buesig, founder and chief executive of the Harm Reduction Coalition of San Diego.

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Stamos-Buesig, whose group helps analyze the contents of illegal drugs in San Diego to inform and protect people, said that “I’ve told people for a while — we can’t hyper-focus on fentanyl” as if it were the only threat.

“There’s a lot of other stuff coming on board,” Stamos-Buesig said.

The UCLA and NIST analysis suggested one possible scenario: Illegal drug manufacturers might be adding BTMPS to fentanyl precursors or to the final product “at a high level in the supply chain,” possibly to stabilize them from degrading from light or heat exposure as illicit drugs are made, stored and transported, they wrote.

UCLA assistant professor Chelsea Shover added that the team had found BTMPS for sale on online platforms like Amazon and Alibaba with similar wording to what Chinese chemical companies had used in the past to market to fentanyl producers, with sellers touting their “experience getting through Mexican customs.”

“This is clearly implying that this is to be used to make illicit drugs,” Shover said. “It’s stuff you wouldn’t expect to see if it was just selling an industrial chemical in a standard way.”

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As it stands, there is no test strip that can quickly detect BTMPS as there is for fentanyl. Nor is the chemical routinely tested for by doctors or medical examiners, which means that if someone has been harmed by BTMPS they took accidentally, “clinicians would have no way of knowing,” the UCLA and NIST team wrote.

The UNC Street Drug Analysis Lab likewise said that much remains unknown at this point, including whether BTMPS poses an overdose risk, although the lab cautions that “EVERY substance at some volume will be toxic.”

Dasgupta said the detection of BTMPS represents the first example of the burgeoning network of drug checking programs working together to find a substance “before any health authorities or any law enforcement did.” Godvin said that “just a few years ago, we wouldn’t have even known about this” and urged Angelenos to get drugs analyzed through Drug Checking Los Angeles if they are able.

In a drug supply already riddled with threats like fentanyl and the animal tranquilizer xylazine, “this gives us a whole other thing to worry about,” Godvin said.

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How AI can help researchers make esophageal cancer less deadly

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How AI can help researchers make esophageal cancer less deadly

Approximately 600 times a day, the esophagus ferries whatever is in your mouth down to your stomach. It’s usually a one-way route, but sometimes acid escapes the stomach and travels back up. That can damage the cells lining the esophagus, prompting them to grow back with genetic mistakes.

About 22,370 times a year in the United States, those mistakes culminate in cancer.

Esophageal cancer can be cured if it’s discovered and treated before it burrows in deep or spreads to other organs. But that’s rarely the case.

“The way this usually goes is a patient has had reflux symptoms for many years, they’ve taken Tums or something, and then all of a sudden they have difficulty swallowing so they come to the ER,” said Dr. Allon Kahn, a gastroenterologist and associate professor of medicine at the Mayo Clinic in Arizona. That’s when doctors discover a tumor that has grown into the walls of the esophagus, and likely beyond.

“At that point,” Kahn said, “it’s incurable.”

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This is why only about 20% of Americans with esophageal cancer are still alive five years after their diagnosis. To improve on that figure, doctors say they don’t necessarily need better medicines. What they need are better ways to find the cancer while it’s still in its earliest, highly treatable stages.

And to do that, they need a breakthrough in screening for the disease.

“The concept of screening is to find dangerous things before they do dangerous things,” said Dr. Daniel Boffa, chief of thoracic surgery at Yale.

It works for diseases like breast, lung and colon cancer. In those cases, there’s a clear progression of steps that leads to cancer — and only to cancer.

But that doesn’t seem to be the case with esophageal cancer.

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“We don’t really know who to screen, how often to screen, and what is the thing that we can see that will tell us, ‘This person is going to develop a dangerous cancer,’” Boffa said.

He likened the situation to the difficulty of forecasting a tornado.

“Most tornadoes happen when conditions are favorable for a tornado,” he said. “But most of the time that conditions are favorable for a tornado, there’s not a tornado. And a lot of the time, tornadoes happen outside of those conditions.”

Another complicating factor is that cases of esophageal cancer are rare, accounting for about 1% of all cancers diagnosed in the U.S.

Picture the 100,000 college football fans packed into Michigan Stadium in Ann Arbor on a game day, said Dr. Joel Rubenstein, a research scientist based 3 miles away at the Lt. Col. Charles S. Kettles VA Medical Center and a gastroenterologist at the University of Michigan. Then picture yourself having to figure out which four of those fans will develop esophageal cancer this year.

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Screening someone for esophageal cancer is not a trivial procedure.

The standard method involves inserting an endoscope — a flexible tube with a camera on one end — into a patient’s throat and threading it down to the stomach. The camera allows doctors to inspect the esophagus up close and check for abnormal cells that could become cancerous.

A probe protrudes from the instrument channel of an endoscope used to diagnose esophageal cancer.

(Cover Images via AP Images)

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The tube also serves as a conduit for tools that can collect tissue samples, which can be sent to a pathology lab for diagnostic analysis. If a doctor sees a growth that looks like early-stage cancer, it can be removed on the spot.

It sounds straightforward, but patients must be sedated for the procedure, which means they lose a day of work. Endoscopy is also expensive, and there’s a shortage of doctors who can do it.

“We’re only catching 7% of cancers through endoscopy,” Kahn said. “We’ve got to find a way to increase that number.”

In the U.S., the most common form of the cancer begins at the base of the esophagus. The cells there aren’t built to withstand exposure to stomach acid, so in people with chronic acid reflux, they sometimes adapt by becoming more like intestinal tissue. That condition is called Barrett’s esophagus, and about 5% of U.S. adults have it.

“If that’s all that was, we’d say, ‘That’s great,’” Kahn said. “But unfortunately, when it makes that change in cell type, there are genetic changes that predispose a patient to cancer.”

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About 0.3% of people with Barrett’s esophagus develop esophageal cancer each year, said Dr. Sachin Wani, a gastroenterologist and professor at the University of Colorado School of Medicine. And compared to people without Barrett’s, they are roughly nine times more likely to die of esophageal cancer.

That means screening for Barrett’s is tantamount to screening for esophageal cancer.

Doctors largely agree on a core group of risk factors, including chronic gastroesophageal reflux disease, smoking and carrying extra pounds in the abdomen. Other risk factors include being at least 50 years old, male, white and having a family history of either Barrett’s or esophageal cancer.

There is less agreement about how many risk factors a person must have to justify screening.

Based on recommendations from the American College of Gastroenterology, more than 31 million people are eligible for screening. Guidelines from the American Society for Gastrointestinal Endoscopy raise that figure to 52 million, and the American Gastroenterological Assn.’s advice expands it to 120 million, said Dr. Gary Falk, a gastroenterologist and professor of medicine emeritus at the University of Pennsylvania’s Perelman School of Medicine.

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All of these recommendations leave room for improvement. Only 50% to 60% of people who meet screening requirements actually have Barrett’s, said Dr. Prasad Iyer, the chair of gastroenterology at the Mayo Clinic in Arizona.

“The screening criteria are not accurate enough,” he said.

Indeed, at least 90% of people who have risk factors for Barrett’s don’t actually have the condition, Iyer said. That includes the vast majority of people with acid reflux.

So doctors are turning to artificial intelligence to identify additional characteristics that can improve their ability to identify those most likely to have Barrett’s and esophageal cancer.

“Everyone in medicine is looking at AI,” Falk said. “We think it’s going to revolutionize things.”

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Iyer and his colleagues are developing an AI tool that scours the electronic medical records of Mayo Clinic patients to find those who should be screened for Barrett’s. The tool considers more than 7,500 distinct data points, including past medical procedures, lab test results, prescriptions and more. (Among the surprises: A patient’s triglycerides and electrolytes had predictive value.)

“This is probably something a human would not be able to do efficiently,” Iyer said.

In tests, the overall accuracy of both tools was 84%. While those are substantial improvements, the team would like to bump that up to 90% before they are rolled out in the clinic, Iyer said.

Rubenstein and his colleagues in Michigan created something similar, using machine learning techniques to analyze the health records of VA patients across the country. Their tool also performed better than the official guidelines of medical societies, with an accuracy of 77%. Now the team is working to refine its threshold for screening by adding cost-effectiveness to the mix.

Once in use, tools like these could lighten the load of overburdened primary care doctors, who aren’t necessarily up to date on the latest screening guidelines and refer fewer than half of their eligible patients for testing.

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“It will flag a patient and say, ‘This patient should be screened,’ or, ‘This patient should not be screened,’” Iyer said. “That’s what the future really needs.”

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Just out of high school and blockading the door to JD Vance's office

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Just out of high school and blockading the door to JD Vance's office

When Camp Hess Kramer burned down in 2018, I cried. My family had gone to the summer camp for generations. My grandma won the “best camper” award in the same dining hall where I tried soda for the first time. Overnight, it was gone. The place I grew up, once ringing with songs and laughter, had mutated into a black abyss strewn with the wiry corpses of oak trees.

It was one of the worst fire seasons in California history. Entire towns and many lives were lost.

In 2020, when COVID hit, I was just about to finish middle school. Instead of playing Magic: The Gathering with my friends in the hallways, I stared into my computer screen consuming information about the climate crisis. Feelings of terror morphed into anger. Decades of warning signs had been ignored because big oil was buying out politicians. These disasters were preventable; Hess Kramer didn’t have to burn.

Horses are tied to a pole near a lifeguard station on a beach lighted by the orange glow of a fire.

Evacuated horses on a beach in Malibu in 2018 as the Woolsey fire heads seaward. At least 670 structures were destroyed inside the Malibu city limits.

(Los Angeles Times)

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So, I signed up for every climate organization I could find online. My first meeting with the Sunrise Movement’s new Los Angeles youth hub was filled with the intimidating faces of high school seniors. I saw the gleam in their eyes as they talked about a future where everyone had a right to clean air, clean water, and good and meaningful jobs. They led protests and created spreadsheets and cold-called people — things I had no idea how to do.

I was 15 when Sunrise asked me to help lead the local portion of a campaign for a national Civilian Climate Corps. The idea was to push the federal government to create a program employing young people in good-paying jobs fighting the climate crisis.

Soon I was planning a sit-in at Sen. Dianne Feinstein’s Los Angeles office. It was 2021. We slept on the sidewalk for two nights until Feinstein agreed to support the program. Then we demanded a Zoom meeting with Sen. Alex Padilla to get his support too. Around the country for many years, our movement continued to push for a Civilian Climate Corps. In June, the first cohort of 9,000 young people were sworn in by the White House.

But fire season is here, and the places I love are still in danger and my future is still uncertain. We could be looking at four years with a presidential administration that is in the pocket of fossil fuel billionaires.

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A helicopter flies with towering smoke plumes on the horizon.

A helicopter flies with a load of water heads to the Bootleg fire near Bly, Ore., in 2021.

(Payton Bruni / AFP / Getty Images)

On July 29, eight of us blockaded the wooden door of JD Vance’s Senate office in Washington. Many more Sunrisers lined the marble hallways. Young people from all walks of life sang in unison: “I went up to JD Vance and I took back my humanity/ Ain’t nobody gonna walk all over me.”

In 2020, Vance, now a potential vice president, asserted that climate change was a threat. Yet after receiving nearly $300,000 from the fossil fuel industry during his 2022 Senate campaign, Vance seems to no longer believe this crisis is human-made.

Police began shoving their way through the crowd toward the door. Handcuffs dangled by their side. I wanted to run, but as the police gave their third warning, I remembered why I was here: An image of Camp Hess Kramer flashed through my head.

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I was taken outside with my hands behind my back. I was told I was under arrest, alone in a sea of blue uniforms, but in the distance I heard 150 Sunrisers break out into another song. I could just make out the words. “Where you go, I will go, Simon. Where you go, I will go.”

Simon Aron is a freshman at Brown University, where he plans to continue his activism.

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