By Corinne Purtill, Los Angeles Times

LOS ANGELES — 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.

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.

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.

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. (Genaro Molina/Los Angeles Times/TNS)

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.

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.”

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/TNS)

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.

“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.

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/TNS)

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.

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.

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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.

“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.”

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.

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.”

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

By Emily Alpert Reyes, Los Angeles Times

Kori Thompson had long wrestled with the idea of having a child.

The 24-year-old worried about the world a kid would face as climate change overtook the globe, fearing the environmental devastation and economic strain that could follow. He had been thinking about getting a vasectomy ever since he learned about the sterilization procedure from a television show.

But “the thing that actually triggered it was the court decision,” Thompson said.

After the Supreme Court overturned Roe v. Wade nearly two years ago, paving the way for states to usher in new restrictions on abortion, doctors started seeing more young adults seeking vasectomies or getting their tubes tied, emerging research has found.

An analysis by University of Utah researchers, released as an abstract in the Journal of Urology, found that after Dobbs v. Jackson Women’s Health Organization, a rising share of vasectomy patients were under the age of 30.

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That percentage went from 6.2% to 9.8% after the Supreme Court decision, based on their analysis of a national database that includes hundreds of millions of patients.

Among the young patients who pursued the procedure is Thompson, who decided to get a vasectomy in the aftermath of the court ruling. In Georgia where he lives, abortion is illegal roughly six weeks into a pregnancy — a point before some people may learn that they are pregnant.

“If it’s effectively illegal,” Thompson said, “then I felt that this was necessary.” His girlfriend also disliked the effects of hormonal birth control, “so now I’ve decided to go on permanent birth control. It’s way easier.”

The University of Utah researchers found that before the Supreme Court ruling, vasectomy rates were consistently higher in states categorized as “hostile” or “illegal” for abortion by the Center for Reproductive Rights, compared to states that were not as restrictive. The same was true after the ruling.

Yet researchers also found an overall uptick in vasectomy rates after the Dobbs decision — both in states where abortion is heavily restricted and those where it is not.

In California, where state leaders have vowed to protect abortion rights, the rate of men getting vasectomies rose after the court decision, from roughly 7 to 13 per 100,000 potential patients, the Utah team found.

“We’re just seeing an overall increase in vasectomies — regardless of political climate” in each state, said Dr. Jessica Schardein, a urologist at the University of Utah. Schardein said the Supreme Court ruling and increased marketing for vasectomies may have gotten more people thinking about the procedure.

“People in general, even if they don’t have a uterus, are taking responsibility for their reproductive health,” Schardein said.

Her team also examined tubal sterilizations — a medical procedure often called “getting your tubes tied,” performed on the fallopian tubes connected to the uterus — and found that after the court decision, there was an increase in the percentage of patients ages 18 to 30 among those undergoing the procedure.

“People in general, even if they don’t have a uterus, are taking responsibility for their reproductive health.” —Dr. Jessica Schardein, University of Utah urologist 

In Riverside County, Jacob Snow decided to get a vasectomy after the birth of his third child, concluding it was a safer option than his wife had for sterilization. “There’s no reason why all the blame and stress and trying to stop a pregnancy should be placed on the female when I can stop it at my end,” the 28-year-old said.

Even though Snow was already a parent, the doctor balked because of his age, he said. “They said I might change my mind in the future,” Snow recalled. “They flat out just refused.”

Vasectomies are intended to be permanent. The surgery may be able to be reversed with other procedures, but physicians caution that doing so is not a guaranteed option.

Snow ultimately found another doctor to do the procedure. Besides the pushback from the first physician, Snow said some men have been aghast when he tells them he had a vasectomy, saying it would make them feel like less of a man. But Snow said he doesn’t “feel that reproducing is how I need to prove that I’m a man.”

The University of Utah findings, presented at the annual meeting of the American Urological Assn., have been echoed in other recent research.

Last month, researchers from the University of Pittsburgh School of Public Health and Boston University published findings in JAMA Health Forum showing “an abrupt increase” in vasectomies and tube tying following Dobbs, with a sharper increase in tubal ligation.

The difference “likely reflects the fact that young women are overwhelmingly responsible for preventing pregnancy and disproportionately experience the health, social and economic consequences of abortion bans,” University of Pittsburgh assistant professor Jacqueline Ellison said in a statement.

Another analysis in the Journal of Urology that included multiple medical centers around the country — including UCLA — found that after the Dobbs decision, the typical patient seeking a vasectomy was younger than before. Researchers also found that an increased share were childless.

There was also a rise in the number of patients consulting doctors about the medical procedure, said Dr. Kara Watts, a urologist at Montefiore Medical Center in New York City — and longer waits to get the surgery after a consultation. If wait times weren’t an issue, Watts said, “the numbers would probably be even more dramatic.”

Researchers detected a similar trend in the UC San Diego health system, where there was a rise in men seeking consultations about vasectomies after the Dobbs decision, as well as increased rates of patients going through with the procedure after their consultations, according to another review presented at the urology meeting.

Even though California has enshrined abortion rights in its state constitution, “I think that vasectomy consultations and completion rates still increased due to the national media coverage on the Supreme Court ruling,” said Dr. Vi Nguyen, one of the authors of the analysis.

And at Ohio State University, urologists surveyed patients about why they chose to get vasectomies and found that after the Dobbs decision, they were more likely to cite concerns about abortion access or say that “they did not want to bring children into the current political climate.”

Other reasons for wanting a vasectomy, such as health concerns, did not change after Dobbs, the survey found. Dr. Jessica Yih, an assistant professor of urology at the Ohio State University, wasn’t surprised.

“Immediately after the Dobbs ruling, many people were extremely concerned about their reproductive rights,” Yih said in an email. “We had a threefold increase in referrals of patients who were wanting to be scheduled to discuss vasectomies and the number of vasectomies performed around this time increased dramatically.”

Abortion has been a sharply contested issue in Ohio, where a law banning abortion after six weeks of pregnancy initially went into effect after the Dobbs ruling. That ban was later put on hold in court, and Ohio voters have since backed protections for abortion access in its state constitution.

“Many patients told us at our clinics that they wanted their vasectomies done as soon as possible due to concerns about restrictions in abortion access,” Yih said.

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

By Judith Graham, KFF Health News

Every day, the scene plays out in hospitals across America: Older men and women lie on gurneys in emergency room corridors moaning or suffering silently as harried medical staff attend to crises.

Even when physicians determine these patients need to be admitted to the hospital, they often wait for hours — sometimes more than a day — in the ER in pain and discomfort, not getting enough food or water, not moving around, not being helped to the bathroom, and not getting the kind of care doctors deem necessary.

“You walk through ER hallways, and they’re lined from end to end with patients on stretchers in various states of distress calling out for help, including a number of older patients,” said Hashem Zikry, an emergency medicine physician at UCLA Health.

Physicians who staff emergency rooms say this problem, known as ER boarding, is as bad as it’s ever been — even worse than during the first years of the COVID-19 pandemic, when hospitals filled with desperately ill patients.

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While boarding can happen to all ER patients, adults 65 and older, who account for nearly 20% of ER visits, are especially vulnerable during long waits for care. Also, seniors may encounter boarding more often than other patients. The best estimates I could find, published in 2019, before the COVID-19 pandemic, suggest that 10% of patients were boarded in ERs before receiving hospital care. About 30% to 50% of these patients were older adults.

“It’s a public health crisis,” said Aisha Terry, an associate professor of emergency medicine at George Washington University School of Medicine and Health Sciences and the president of the board of the American College of Emergency Physicians, which sponsored a summit on boarding in September.

What’s going on? I spoke to almost a dozen doctors and researchers who described the chaotic situation in ERs. They told me staff shortages in hospitals, which affect the number of beds available, are contributing to the crisis. Also, they explained, hospital administrators are setting aside more beds for patients undergoing lucrative surgeries and other procedures, contributing to bottlenecks in ERs and leaving more patients in limbo.

Then, there’s high demand for hospital services, fueled in part by the aging of the U.S. population, and backlogs in discharging patients because of growing problems securing home health care and nursing home care, according to Arjun Venkatesh, chair of emergency medicine at the Yale School of Medicine.

The impact of long ER waits on seniors who are frail, with multiple medical issues, is especially serious. Confined to stretchers, gurneys, or even hard chairs, often without dependable aid from nurses, they’re at risk of losing strength, forgoing essential medications, and experiencing complications such as delirium, according to Saket Saxena, a co-director of the geriatric emergency department at the Cleveland Clinic.

“It’s a public health crisis.” —Aisha Terry, president of the board of the American College of Emergency Physicians

When these patients finally secure a hospital bed, their stays are longer and medical complications more common. And new research finds that the risk of dying in the hospital is significantly higher for older adults when they stay in ERs overnight, as is the risk of adverse events such as falls, infections, bleeding, heart attacks, strokes, and bedsores.

Ellen Danto-Nocton, a geriatrician in Milwaukee, was deeply concerned when an 88-year-old relative with “strokelike symptoms” spent two days in the ER a few years ago. Delirious, immobile, and unable to sleep as alarms outside his bed rang nonstop, the older man spiraled downward before he was moved to a hospital room. “He really needed to be in a less chaotic environment,” Danto-Nocton said.

Several weeks ago, Zikry of UCLA Health helped care for a 70-year-old woman who’d fallen and broken her hip while attending a basketball game. “She was in a corner of our ER for about 16 hours in an immense amount of pain that was very difficult to treat adequately,” he said. ERs are designed to handle crises and stabilize patients, not to “take care of patients who we’ve already decided need to be admitted to the hospital,” he said.

How common is ER boarding and where is it most acute? No one knows, because hospitals aren’t required to report data about boarding publicly. The Centers for Medicare & Medicaid Services retired a measure of boarding in 2021. New national measures of emergency care capacity have been proposed but not yet approved.

“It’s not just the extent of ED boarding that we need to understand. It’s the extent of acute hospital capacity in our communities,” said Venkatesh of Yale, who helped draft the new measures.

In the meantime, some hospital systems are publicizing their plight by highlighting capacity constraints and the need for more hospital beds. Among them is Massachusetts General Hospital in Boston, which announced in January that ER boarding had risen 32% from October 2022 to September 2023. At the end of that period, patients admitted to the hospital spent a median of 14 hours in the ER and 26% spent more than 24 hours.

Maura Kennedy, Mass General’s chief of geriatric emergency medicine, described an 80-something woman with a respiratory infection who languished in the ER for more than 24 hours after physicians decided she needed inpatient hospital care.

“She wasn’t mobilized, she had nothing to cognitively engage her, she hadn’t eaten, and she became increasingly agitated, trying to get off the stretcher and arguing with staff,” Kennedy told me. “After a prolonged hospital stay, she left the hospital more disabled than she was when she came in.”

When I asked ER doctors what older adults could do about these problems, they said boarding is a health system issue that needs health system and policy changes. Still, they had several suggestions.

“Have another person there with you to advocate on your behalf,” said Jesse Pines, chief of clinical innovation at US Acute Care Solutions, the nation’s largest physician-owned emergency medicine practice. And have that person speak up if they feel you’re getting worse or if staffers are missing problems.

Alexander Janke, a clinical instructor of emergency medicine at the University of Michigan, advises people, “Be prepared to wait when you come to an ER” and “bring a medication list and your medications, if you can.”

To stay oriented and reduce the possibility of delirium, “make sure you have your hearing aids and eyeglasses with you,” said Michael Malone, medical director of senior services for Advocate Aurora Health, a 20-hospital system in Wisconsin and northern Illinois. “Whenever possible, try to get up and move around.”

Friends or family caregivers who accompany older adults to the ER should ask to be at their bedside, when possible, and “try to make sure they eat, drink, get to the bathroom, and take routine medications for underlying medical conditions,” Malone said.

Older adults or caregivers who are helping them should try to bring “things that would engage you cognitively: magazines, books … music, anything that you might focus on in a hallway where there isn’t a TV to entertain you,” Kennedy said.

“Experienced patients often show up with eye masks and ear plugs” to help them rest in ERs with nonstop stimulation, said Zikry of UCLA. “Also, bring something to eat and drink in case you can’t get to the cafeteria or it’s a while before staffers bring these to you.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.

©2024 Kaiser Health News. Visit khn.org. Distributed by Tribune Content Agency, LLC.

Napheesa Collier and Kayla McBride each drained a 3-point shot early in the second overtime and the Minnesota Lynx went on to beat Seattle 102-93 late Friday.

Collier led Minnesota with 29 points and nine rebounds, McBride scored 19 points and Alanna Smith recorded 16 points to go with six blocks and five rebounds as the Lynx improved to 2-0 for the first time since 2019.

A steal by McBride on Seattle’s first possession of overtime No. 2 led to Collier scoring from deep for the Lynx. McBride hit from deep the next time Minnesota had the ball for a 6-point lead. McBride scored on a drive and Alanna Smith knocked down another 3 with 1:25 left. Collier then converted a feed from Bridget Carleton to ice it.

What a different final frame of regulation it was for the Lynx.

In Tuesday’s 83-70 win at Seattle, the Lynx used a 17-4 run to start the fourth quarter and cruise to victory.

It appeared a repeat performance was to occur.

Its lead whittled to two, starters Collier and Courtney Williams returned to the game and Minnesota went on an 11-0 run for some breathing room.

McBride drilled a 3, Collier scored on a layup after a steal by Smith and offensive rebounds by Collier and Carleton. Williams followed a 3-point play by Collier with a steal and layup before Carleton added a pair of free throws for a 74-61 lead.

But.

Up by nine with 3:30 left, Smith made a pair of free throws; however, a 3-pointer from Jewell Loyd and a free throw Nneka Ogwumike and two more from Loyd got the Storm within five with 1:18 left.

Minnesota’s lead at 3, the Lynx couldn’t find a quality shot and Collier’s off-balance shot amongst three defenders was off the mark. Loyd was tripped up on a drive with 26 seconds left and the shot was blocked by Smith and went out of bounds. Video review upheld the call that it was Lynx ball.

McBride, maybe the team’s best free-throw shooter, missed a  pair of free throws with 24.1 seconds left and fouled Loyd at the other end. Loyd made all three with 15.6 ticks left.

Williams missed a jumper for Minnesota, and out of a time out, Loyd did the same for Seattle and the 7,208 in attendance had a free 5 minutes of action.

Minnesota had chance to win the game in the first overtime, but Collier’s second free throw with 2.7 seconds rimmed out forcing another overtime period. Neither team led by more than two points in the first overtime.

Seattle turned the ball over 25 times, resulting in 35 Lynx points. Not that Minnesota can brag because it turned the ball over 27 times, but Seattle only netted 22 points off those miscues.

Minnesota shot 44.3% and was 13 for 30 from outside the arc, including Alissa Pili’s first career points when the team’s top draft pick swished home a shot from the right corner.

Miller arced a rainbow 3 to start the second quarter. Sika Koné made a steal in the defensive end before putting back a Miller miss at the other end for a 27-16 lead. Koné played her first game with Minnesota, arriving earlier in the week after finishing her season in Spain. She finished with two points and five rebounds in three first-half minutes.

McBride capped a 20-4 run with a four-point play midway through the second for a 36-20 Lynx lead. However, Seattle scored the next 11 points, aided by four Minnesota turnovers to get within five.