An estimated one in nine adult women struggle with an abnormal and painful fat buildup in the lower body — and no amount of diet or exercise can help.

Lipedema, a relatively common but often overlooked disease, causes fat to accumulate in the lower part of the body, primarily the butt, thighs and calves. 

For many women, like Molly Friar, an event planner in Sacramento, California, it can cause debilitating pain and impaired mobility.

In an effort to raise awareness of this condition, Friar, 53, spoke with Fox News Digital about her long journey to diagnosis — and what she calls her newfound "freedom."

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Friar was just 11 years old when she started to notice that her body was different than everyone else’s, she said during a phone interview.

"The lipedema itself is governed by hormone changes, so that's when things really took off for me," she said. "My legs were different from every other girl in my class, and I started to get a bit of a stomach in my lower abdomen."

It was puzzling for Friar, who was very fit and athletic. 

She played soccer, basketball and softball, and was also a cheerleader — yet no matter how active she was or how carefully she ate, her lower body carried an abnormal amount of fat.

"Somehow my legs and stomach were always disproportionately bigger than everybody else's," she said.

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Adding complexity to the situation, Friar is adopted — so she had no context that might have predicted this genetic condition.

"I don't have pictures of my family to look at, to see a grandmother or an aunt or other women in my life that were affected by it," she said.

Friar felt "completely out of place," she said, as everyone else in her family was "super skinny" and she was not.

Friar was just 12 years old when her parents put her on a Weight Watchers program.

"They felt like that was the best thing they could do to help me," she said. 

Throughout her adolescence and young adulthood, Friar worked out every day, biking to the gym and taking aerobics with all the adults.

"That’s absolutely where I started a battle of shame around my body — something I couldn't control," she said. 

"I would eat less or not eat, and exercise more, and do all the things I could think of to outpace something that I didn't know existed."

She added, "I always felt like there was a person inside of me who was thin and just wanted to get out."

In addition to the body image struggles, Friar’s condition also came with extreme pain.

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Lipedema causes inflammation and extreme bruising — "I would just brush up against something and get a bruise," said Friar.

The activities that were pleasant for other people, like getting a massage during a pedicure, created "excruciating pain" for Friar.

For someone with lipedema, she explained, running a hand over the skin is like touching a rocky beach — "you can feel the nodules like pebbles under the skin."

Other common symptoms include swelling, a feeling of heaviness in the legs and excess fatigue. 

For some patients, the condition can cause difficulty walking, heightened anxiety and depression, joint issues, venous (vein) disease and other complications, according to Cleveland Clinic.

In 2016, when Friar was 45 years old, she lost 50 pounds — but didn’t lose a centimeter in her calves.

She started digging in to figure out what was going on. "I knew something wasn’t right," she said.

In her online research, it wasn’t long before Friar was looking at photos of women with lipedema, with abnormal fat deposits in their lower bodies.

"In that moment, I cried — it was like looking in a mirror," she told Fox News Digital. 

"I felt validated and relieved and ecstatic — I finally had an answer."

But the relief was short-lived, as Friar quickly realized there was no cure for her condition. "It’s something that you have to try to battle for the rest of your life."

There are, however, options to alleviate some symptoms that come with lipedema, as Friar found out when she began seeing her doctor, Jaime S. Schwartz, M.D., in Beverly Hills, California.

A board-certified plastic surgeon and world-renowned lipedema specialist, Schwartz has dedicated much of his career to raising awareness for fat disorders like lipedema.

He launched Total Lipedema Care to help women like Friar.

"Most people will tell you that the lower half of their body just started growing a lot larger than the upper half, usually during puberty," Schwartz told Fox News Digital.

"It doesn't start as pain, but they start seeing physical changes that don’t really make sense."

Lipedema is usually misdiagnosed as morbid obesity, Schwartz noted.

"In the U.S., many doctors tell women, ‘You're fat, you did this to yourself,’" he said.

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But the good news, he said, is that awareness is slowly starting to grow.

"Over the past five years, it's gone from no one knowing about it to a lot of people knowing about it, so it's definitely getting better."

As Schwartz told Friar, he recommends surgery as the best option to relieve lipedema symptoms.

At his practice, Schwartz performs a patented procedure called manual lipedema extraction, which involves a combination of liposuction and the removal of underlying nodules of fat through small incisions.

"When I take the ‘bad tissue’ out, people feel better as soon as the next day," Schwartz said. "That's the only thing that I've seen that works — and I've seen everything that's out there."

Friar ended up having a total of three surgeries — one on the back of her legs, one in the stomach area and one on the front of her legs.

"For me, the surgery was life-changing," Friar said. "I feel it changed the game for me — it extended my life and I gained back probably 75% to 80% of my mobility."

Each surgery required around six weeks of recovery time.

"It isn’t easy, but I would do it 1,000 times over," she said.

One caveat is that some insurance companies have been slow to cover the cost of lipedema surgeries. Friar had to pay out of pocket for the procedures, which can range from $4,000 to $16,000, according to Schwartz's website.

"I was very, very lucky — there are so many women who want the surgery that can't afford it," she said.

In addition to the surgeries, dietary changes have had a big impact on Friar’s quality of life.

"The optimal diet for me is gluten-free and dairy-free, with no added sugars, no processed foods, low salt and very little alcohol," she said.

She also wears medical-grade compression gear at night and lighter-compression leggings during the day.

"It helps alleviate a lot of the inflammation and excess fluid in the body," she said.

Other non-surgical options for relief include exercise and medications or supplements to reduce inflammation.

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As Schwartz told Fox News Digital, Friar’s case was pretty typical of most women’s experiences with lipedema, although he noted her positive mindset.

"A lot of women have had this for so long, and it defeats them emotionally, psychologically and mentally," he said. "But Molly has always had such an amazing outlook and personality."

He added, "Obviously, it's been emotional for her at times, but she never let it defeat her."

Friar said her life now is "like night and day" compared to before.

"Getting a massage for me is now enjoyable," she said through tears. "I can climb to the top of a mountain, and I can walk six miles and not stop."

"It’s like your mobility gets taken away from you, and when you instantly get it back, it's newfound freedom."

Friar’s goal is to increase awareness around this condition, among patients and doctors alike, so other women don’t have to live in shame for years like she did.

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"It’s something we need to be talking about," she said. "It’s such a visual thing, involving our bodies and how we present ourselves to the world, and it’s something we can’t control."

"I'm willing to shout from the rooftops if I can help even one person recognize the symptoms and be able to help themselves."

For many of Schwartz’s patients, he said, the disease has "destroyed their lives."

"They don't go out, they don't socialize, they're afraid to work or wear certain clothes in public," he said.

Some women can't have their grandchildren sit on their lap or can't hold their spouse's hand because it’s too painful, he said. 

"So when they have surgery and they're not in pain, not only do they look different and they're so happy to rediscover their body, but they can even have their dog sit in their lap for the first time," he said.

"It’s a very overwhelming reality for them in a beautiful way," he also said.

It is estimated that around 11% of women are living with lipedema today.

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At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.

Some people even hide AR-15-style assault weapons down their pants legs, he said.

“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”

Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.

Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.

Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.

In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.

“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”

Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.

While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.

Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.

Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.

As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”

The Streets of Oakland

Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.

The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.

On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.

“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”

Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.

When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.

The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.

Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.

“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”

Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.

After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.

Then covid hit.

“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”

With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.

“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”

Shared with permission from The Trace.

Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.

Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.

“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”

Unrest in Oakland

Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.

“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”

One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.

Everyone is blaming someone or something else for the bloodshed.

Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.

The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”

“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.

Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.

The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.

“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.

Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.

City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.

Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.

Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.

“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”

Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.

Oakland Mayor Sheng Thao

A Focus on Schools

Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.

The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.

“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.

By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.

At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.

They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.

“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.

When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.

“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.

Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.

That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.

“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”

The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.

A Better Life

After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.

“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”

When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.

Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.

Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.

Velasquez Lopez said he has bigger goals for himself.

Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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This story can be republished for free (details).

Assisted living centers have become an appealing retirement option for hundreds of thousands of boomers who can no longer live independently, promising a cheerful alternative to the institutional feel of a nursing home.

But their cost is so crushingly high that most Americans can’t afford them.

What to Know About Assisted Living

The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.

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These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. Residents’ bills and price lists from a dozen facilities offer a glimpse of the charges: $12 for a blood pressure check; $50 per injection (more for insulin); $93 a month to order medications from a pharmacy not used by the facility; $315 a month for daily help with an inhaler.

The facilities charge extra to help residents get to the shower, bathroom, or dining room; to deliver meals to their rooms; to have staff check-ins for daily “reassurance” or simply to remind residents when it’s time to eat or take their medication. Some even charge for routine billing of a resident’s insurance for care.

“They say, ‘Your mother forgot one time to take her medications, and so now you’ve got to add this on, and we’re billing you for it,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a nonprofit.

About 850,000 older Americans reside in assisted living facilities, which have become one of the most lucrative branches of the long-term care industry that caters to people 65 and older. Investors, regional companies, and international real estate trusts have jumped in: Half of operators in the business of assisted living earn returns of 20% or more than it costs to run the sites, an industry survey shows. That is far higher than the money made in most other health sectors.

Rents are often rivaled or exceeded by charges for services, which are either packaged in a bundle or levied à la carte. Overall prices have been rising faster than inflation, and rent increases since the start of last year have been higher than at any previous time since at least 2007, according to the National Investment Center for Seniors Housing & Care, which provides data and other information to companies.

There are now 31,000 assisted living facilities nationwide — twice the number of skilled nursing homes. Four of every five facilities are run as for-profits. Members of racial or ethnic minority groups account for only a tenth of residents, even though they make up a quarter of the population of people 65 or older in the United States.

A public opinion survey conducted by KFF found that 83% of adults said it would be impossible or very difficult to pay $60,000 a year for an assisted living facility. Almost half of those surveyed who either lived in a long-term care residence or had a loved one who did encountered unexpected add-on fees for things they assumed were included in the price.

Assisted living is part of a broader affordability crisis in long-term care for the swelling population of older Americans. Over the past decade, the market for long-term care insurance has virtually collapsed, covering just a tiny portion of older people. Home health workers who can help people stay safely in their homes are generally poorly paid and hard to find.

And even older people who can afford an assisted living facility often find their life savings rapidly drained.

Unlike most residents of nursing homes, where care is generally paid for by Medicaid, the federal-state program for the poor and disabled, assisted living residents or their families usually must shoulder the full costs. Most centers require those who can no longer pay to move out.

The industry says its pricing structures pay for increased staffing that helps the more infirm residents and avoids saddling others with costs of services they don’t need.

Prices escalate greatly when a resident develops dementia or other serious illnesses. At one facility in California, the monthly cost of care packages for people with dementia or other cognitive issues increased from $1,325 for those needing the least amount of help to $4,625 as residents’ needs grew.

“It’s profiteering at its worst,” said Mark Bonitz, who explored multiple places in Minnesota for his mother, Elizabeth. “They have a fixed amount of rooms,” he said. “The way you make the most money is you get so many add-ons.” Last year, he moved his mother to a nonprofit center, where she lived until her death in July at age 96.

LaShuan Bethea, executive director of the National Center for Assisted Living, a trade association of owners and operators, said the industry would require financial support from the government and private lenders to bring prices down.

“Assisted living providers are ready and willing to provide more affordable options, especially for a growing elderly population,” Bethea said. “But we need the support of policymakers and other industries.” She said offering affordable assisted living “requires an entirely different business model.”

Others defend the extras as a way to appeal to the waves of boomers who are retiring. “People want choice,” said Beth Burnham Mace, a special adviser for the National Investment Center for Seniors Housing & Care. “If you price it more à la carte, you’re paying for what you actually desire and need.”

Yet residents don’t always get the heightened attention they paid for. Class-action lawsuits have accused several assisted living chains of failing to raise staffing levels to accommodate residents’ needs or of failing to fulfill billed services.

“We still receive many complaints about staffing shortages and services not being provided as promised,” said Aisha Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate. “Some residents have reported to us they called 911 for things like getting in and out of bed.”

‘Can You Find Me a Money Tree?’

Florence Reiners, 94, adores living at the Waters of Excelsior, an upscale assisted living facility in the Minneapolis suburb of Excelsior. The 115-unit building has a theater, a library, a hair salon, and a spacious dining room.

“The windows, the brightness, and the people overall are very cheerful and very friendly,” Reiners, a retired nursing assistant, said. Most important, she was just a floor away from her husband, Donald, 95, a retired water department worker who served in the military after World War II and has severe dementia.

She resisted her children’s pleas to move him to a less expensive facility available to veterans.

Reiners is healthy enough to be on a floor for people who can live independently, so her rent is $3,330 plus $275 for a pendant alarm. When she needs help, she’s billed an exact amount, like a $26.67 charge for the 31 minutes an aide spent helping her to the bathroom one night.

Her husband’s specialty care at the facility cost much more: $6,150 a month on top of $3,825 in rent.

Month by month, their savings, mainly from the sale of their home, and monthly retirement income of $6,600 from Social Security and his municipal pension, dwindled. In three years, their assets and savings dropped to about $300,000 from around $550,000.

Her children warned her that she would run out of money if her health worsened. “She about cried because she doesn’t want to leave her community,” Anne Palm, one of her daughters, said.

In June, they moved Donald Reiners to the VA home across the city. His care there costs $3,900 a month, 60% less than at the Waters. But his wife is not allowed to live at the veterans’ facility.

After nearly 60 years together, she was devastated. When an admissions worker asked her if she had any questions, she answered, “Can you find me a money tree so I don’t have to move him?”

Heidi Elliott, vice president for operations at the Waters, said employees carefully review potential residents’ financial assets with them, and explain how costs can increase over time.

“Oftentimes, our senior living consultants will ask, ‘After you’ve reviewed this, Mr. Smith, how many years do you think Mom is going to be able to, to afford this?’” she said. “And sometimes we lose prospects because they’ve realized, ‘You know what? Nope, we don’t have it.’”

Potential Buyers From the Bahamas

For residents, the median annual price of assisted living has increased 31% faster than inflation, nearly doubling from 2004 to 2021, to $54,000, according to surveys by the insurance firm Genworth. Monthly fees at memory care centers, which specialize in people with dementia and other cognitive issues, can exceed $10,000 in areas where real estate is expensive or the residents’ needs are high.

Diane Lepsig, president of CarePatrol of Bellevue-Eastside, in the Seattle suburbs, which helps place people, said that she has warned those seeking advice that they should expect to pay at least $7,000 a month. “A million dollars in assets really doesn’t last that long,” she said.

Prices rose even faster during the pandemic as wages and supply costs grew. Brookdale Senior Living, one of the nation’s largest assisted living owners and operators, reported to stockholders rate increases that were higher than usual for this year. In its assisted living and memory care division, Brookdale’s revenue per occupied unit rose 9.4% in 2023 from 2022, primarily because of rent increases, financial disclosures show.

In a statement, Brookdale said it worked with prospective residents and their families to explain the pricing and care options available: “These discussions begin in the initial stages of moving in but also continue throughout the span that one lives at a community, especially as their needs change.”

Many assisted living facilities are owned by real estate investment trusts. Their shareholders expect the high returns that are typically gained from housing investments rather than the more marginal profits of the heavily regulated health care sector. Even during the pandemic, earnings remained robust, financial filings show.

Ventas, a publicly traded real estate investment trust, reported earning revenues in the third quarter of this year that were 24% above operating costs from its investments in 576 senior housing properties, which include those run by Atria Senior Living and Sunrise Senior Living.

Ventas said the prices for its services were affordable. “In markets where we operate, on average it costs residents a comparable amount to live in our communities as it does to stay in their own homes and replicate services,” said Molly McEvily, a spokesperson.

In the same period, Welltower, another large real estate investment trust, reported a 24% operating margin from its 883 senior housing properties, which include ones operated by Sunrise‌, Atria, Oakmont Management Group, and Belmont Village.‌ Welltower did not respond‌‌ to requests for comment.

The median operating margin for assisted living facilities in 2021 was 23% if they offered memory care and 20% if they didn’t, according to David Schless, chief executive of the American Seniors Housing Association, a trade group that surveys the industry each year.

Bethea said those returns could be invested back into facilities’ services, technology, and building updates. “This is partly why assisted living also enjoys high customer satisfaction rates,” she said.

Brandon Barnes, an administrator at a family business that owns three small residences in Esko, Minnesota, said he and other small operators had been approached by brokers for companies, including one based in the Bahamas. “I don’t even know how you’d run them from that far away,” he said.

Rating the Cost of a Shower, on a Point Scale

To consistently get such impressive returns, some assisted living facilities have devised sophisticated pricing methods. Each service is assigned points based on an estimate of how much it costs in extra labor, to the minute. When residents arrive, they are evaluated to see what services they need, and the facility adds up the points. The number of points determines which tier of services you require; facilities often have four or five levels of care, each with its own price.

Charles Barker, an 81-year-old retired psychiatrist with Alzheimer’s, moved into Oakmont of Pacific Beach, a memory care facility in San Diego, in November 2020. In the initial estimate, he was assigned 135 points: 5 for mealtime reminders; 12 for shaving and grooming reminders; 18 for help with clothes selection twice a day; 36 to manage medications; and 30 for the attention, prompting, and redirection he would need because of his dementia, according to a copy of his assessment provided by his daughter, Celenie Singley.

Barker’s points fell into the second-lowest of five service levels, with a charge of $2,340 on top of his $7,895 monthly rent.

Singley became distraught over safety issues that she said did not seem as important to Oakmont as its point system. She complained in a May 2021 letter to Courtney Siegel, the company’s chief executive, that she repeatedly found the doors to the facility, located on a busy street, unlocked — a lapse at memory care centers, where secured exits keep people with dementia from wandering away. “Even when it’s expensive, you really don’t know what you’re getting,” she said in an interview.

Singley, 50, moved her father to another memory care unit. Oakmont did not respond to requests for comment.

Other residents and their families brought a class-action lawsuit against Oakmont in 2017 that said the company, an assisted living and memory care provider based in Irvine, California, had not provided enough staffing to meet the needs of residents it identified through its own assessments.

Jane Burton-Whitaker, a plaintiff who moved into Oakmont of Mariner Point in Alameda, California, in 2016, paid $5,795 monthly rent and $270 a month for assistance with her urinary catheter, but sometimes the staff would empty the bag just once a day when it required multiple changes, the lawsuit said.

She paid an additional $153 a month for checks of her “fragile” skin “up to three times a day, but most days staff did not provide any skin checks,” according to the lawsuit. (Skin breakdown is a hazard for older people that can lead to bedsores and infections.) Sometimes it took the staff 45 minutes to respond to her call button, so she left the facility in 2017 out of concern she would not get attention should she have a medical emergency, the lawsuit said.

Oakmont paid $9 million in 2020 to settle the class-action suit and agreed to provide enough staffing, without admitting fault.

Similar cases have been brought against other assisted living companies. In 2021, Aegis Living, a company based in Bellevue, Washington, agreed to a $16 million settlement in a case claiming that its point system — which charged 64 cents per point per day — was “based solely on budget considerations and desired profit margins.” Aegis did not admit fault in the settlement or respond to requests for comment.

When the Money Is Gone

Jon Guckenberg’s rent for a single room in an assisted living cottage in rural Minnesota was $4,140 a month before adding in a raft of other charges.

The facility, New Perspective Cloquet, charged him $500 to reserve a spot and a $2,000 “entrance fee” before he set foot inside two years ago. Each month, he also paid $1,080 for a care plan that helped him cope with bipolar disorder and kidney problems, $750 for meals, and another $750 to make sure he took his daily medications. Cable service in his room was an extra $50 a month.

A year after moving in, Guckenberg, 83, a retired pizza parlor owner, had run through his life’s savings and was put on a state health plan for the poor.

Doug Anderson, a senior vice president at New Perspective, said in a statement that “the cost and complexity of providing care and housing to seniors has increased exponentially due to the pandemic and record-high inflation.”

In one way, Guckenberg has been luckier than most people who run out of money to pay for their care. His residential center accepts Medicaid to cover the health services he receives.

Most states have similar programs, though a resident must be frail enough to qualify for a nursing home before Medicaid will cover the health care costs in an assisted living facility. But enrollment is restricted. In 37 states, people are on waiting lists for months or years.

“We recognize the current system of having residents spend down their assets and then qualify for Medicaid in order to stay in their assisted living home is broken,” said Bethea, with the trade association. “Residents shouldn’t have to impoverish themselves in order to continue receiving assisted living care.”

Only 18% of residential care facilities agree to take Medicaid payments, which tend to be lower than what they charge self-paying clients, according to a federal survey of facilities. And even places that accept Medicaid often limit coverage to a minority of their beds.

For those with some retirement income, Medicaid isn’t free. Nancy Pilger, Guckenberg’s guardian, said that he was able to keep only about $200 of his $2,831 monthly retirement income, with the rest going to paying rent and a portion of his costs covered by the government.

In September, Guckenberg moved to a nearby assisted living building run by a nonprofit. Pilger said the price was the same. But for other residents who have not yet exhausted their assets, Guckenberg’s new home charges $12 a tray for meal delivery to the room; $50 a month to bill a person’s long-term care insurance plan; and $55 for a set of bed rails.

Even after Guckenberg had left New Perspective, however, the company had one more charge for him: a $200 late payment fee for money it said he still owed.

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

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El cansancio y las náuseas de su marido fueron tan intensas que no fue a trabajar por tres días. Pero bebió agua con lima en lugar de ir al médico porque no tienen seguro médico. “A mucha gente le pasa esto”, agregó.

No existen normas federales para proteger a los trabajadores como los García cuando los días son excesivamente calurosos. Y sin el apoyo bipartidista del Congreso, incluso con la atención urgente de la administración Biden, es posible que el alivio no llegue en años.

El presidente Joe Biden encargó en 2021 a la Administración de Seguridad y Salud Ocupacional (OSHA) la elaboración de normas para prevenir los accidentes y las enfermedades causados por el calor.

Pero ese proceso de 46 pasos puede llevar más de una década y podría estancarse si un republicano es elegido presidente en 2024, porque el Partido Republicano se ha opuesto generalmente a las regulaciones de salud laboral en los últimos 20 años.

Estas normas podrían obligar a los empleadores a proporcionar abundante agua potable, descansos y un espacio para refrescarse a la sombra o con aire acondicionado cuando las temperaturas superen un determinado umbral.

El 7 de septiembre, OSHA comenzó reuniones con propietarios de pequeñas empresas para discutir sus propuestas, incluidas las medidas que deberían adoptar las empresas cuando las temperaturas llegan a los 90 grados.

Como este verano se han batido récords de calor, la congresista Judy Chu (demócrata de California) y otros miembros del Congreso han impulsado una legislación que aceleraría el proceso de elaboración de normas de OSHA.

El proyecto de ley lleva el nombre de Asunción Valdivia, una trabajadora agrícola que se desmayó mientras recogía uvas en California en un día de 105 grados en 2004. Su hijo la recogió del campo y Valdivia murió de un golpe de calor en el trayecto a su casa.

“Ya sea en una granja, conduciendo un camión o trabajando en un almacén, los trabajadores como Asunción mantienen nuestro país en funcionamiento mientras soportan algunas de las condiciones más difíciles”, dijo Chu en declaraciones en julio en la que instaba al Congreso a aprobar el proyecto de ley.

Las organizaciones profesionales que representan a los empresarios se han opuesto a las normas, calificándolas de “exageradas”. También afirman que faltan datos que justifiquen regulaciones generales, dada la diversidad de trabajadores y lugares de trabajo, desde restaurantes de comida rápida hasta granjas.

La Cámara de Comercio de Estados Unidos, uno de los grupos de presión más poderosos de Washington, argumentó que tales medidas carecen de sentido “porque cada empleado experimenta el calor de forma diferente”. Además, según la Cámara, normas como los ciclos de trabajo-descanso “amenazan con perjudicar directa y sustancialmente… la productividad de los empleados y, por lo tanto, la viabilidad económica de su empleador”.

“Muchos de los problemas relacionados con el calor no son consecuencia del trabajo agrícola ni de la mala gestión del empresario, sino del moderno estilo de vida de los empleados”, escribió el Consejo Nacional del Algodón en su respuesta a la legislación propuesta.

Por ejemplo, el aire acondicionado hace más difícil que las personas se adapten a un ambiente caluroso después de haber estado en una vivienda o un vehículo fríos, y señaló que “los trabajadores más jóvenes, más acostumbrados a un estilo de vida más sedentario, no pueden aguantar un día trabajando al aire libre”.

La Asociación de Recursos Forestales, que representa a los propietarios de terrenos forestales, la industria maderera y los aserraderos, agregó que “las enfermedades y muertes relacionadas con el calor no figuran entre los riesgos laborales más graves a los que se enfrentan los trabajadores”. Citaron cifras de OSHA: la agencia documentó 789 hospitalizaciones y 54 muertes relacionadas con el calor a través de investigaciones e infracciones de 2018 a 2021.

OSHA admite que sus datos son cuestionables. Ha dicho que sus cifras “sobre enfermedades, accidentes y muertes relacionadas con el calor en el trabajo son probablemente grandes subestimaciones”.

Los accidentes y enfermedades no siempre se registran, las muertes provocadas por las altas temperaturas no siempre se atribuyen al calor, y los daños relacionados con el calor pueden ser acumulativos, provocando infartos, insuficiencia renal y otras dolencias después de que la persona haya abandonado su lugar de trabajo.

El efecto de la temperatura

Para establecer normas, OSHA debe conocer los efectos del calor en los que trabajan en interiores y al aire libre. La justificación es una parte necesaria del proceso, porque las normativas aumentarán los costos para los empresarios que necesiten instalar sistemas de aire acondicionado y ventilación en el interior, y para aquellos cuya productividad pueda bajar si se permite a los que trabajan a la intemperie tomar descansos o reducir las jornadas cuando suban las temperaturas.

Lo ideal sería que los empresarios tomaran medidas para proteger a los trabajadores del calor independientemente de las normas, afirmó Georges Benjamin, director ejecutivo de la Asociación Americana de Salud Pública. “Tenemos que hacer un mejor trabajo para convencer a los empresarios de que hay una compensación entre la eficiencia y los trabajadores enfermos”, dijo.

García y su marido sufrieron los síntomas del golpe de calor: vómitos, náuseas y fatiga. Pero sus casos forman parte de los miles que no se contabilizan cuando la gente no va al hospital ni presenta denuncias por miedo a perder su empleo o estatus migratorio.

Los trabajadores agrícolas están notoriamente subrepresentados en las estadísticas oficiales sobre accidentes y enfermedades laborales, según David Michaels, epidemiólogo de la Universidad George Washington y ex administrador de OSHA.

Investigadores que encuestaron a trabajadores agrícolas de Carolina del Norte y Georgia encontraron que más de un tercio presentaba síntomas de enfermedad por calor durante los veranos analizados, una cifra muy superior a la registrada por OSHA. En particular, el estudio de Georgia reveló que el 34% de los trabajadores agrícolas no tenía descansos regulares, y una cuarta parte no tenía acceso a espacios con sombra.

Incluso los casos en los que los trabajadores son hospitalizados pueden no atribuirse al calor si los médicos no documentan la conexión. Muchos estudios relacionan los accidentes laborales con el estrés térmico, que puede causar fatiga, deshidratación y vértigo.

En un estudio realizado en el estado de Washington, se observó que los trabajadores agrícolas se caían de las escaleras con más frecuencia en junio y julio, unos de los meses más calurosos y húmedos. Y en un informe de 2021, investigadores calcularon que las temperaturas más cálidas causaron aproximadamente 20,000 accidentes laborales al año en California entre 2001 y 2018, según los reclamos de compensación de los trabajadores.

Las lesiones renales por calor también aparecen en la base de datos de OSHA de trabajadores lesionados gravemente en el trabajo, como el caso de un empleado de una planta de procesamiento de carne hospitalizado por deshidratación y lesión renal aguda en un caluroso día de junio en Arkansas.

Sin embargo, la investigación revela que el daño renal provocado por el calor también puede ser gradual. Un estudio de trabajadores de la construcción que estuvieron durante un verano en Arabia Saudita reveló que el 18% presentaba signos de lesión renal, lo que los ponía en riesgo de insuficiencia renal futura.

Además de cuantificar las lesiones y muertes causadas por el calor, OSHA trata de atribuirles un costo para poder calcular el ahorro potencial derivado de la prevención. “Hay que medir las cosas, como ¿cuánto vale una vida?”, afirmó Michaels.

Para los trabajadores y sus familias, el sufrimiento tiene consecuencias de largo alcance que son difíciles de enumerar. Los gastos médicos son más obvios. Por ejemplo, OSHA calcula que el costo directo de la postración por calor (sobrecalentamiento debido a insolación o hipertermia), es de casi $80,000 en costos directos e indirectos por caso.

Si esto parece elevado, hay que pensar en un trabajador de la construcción de Nueva York que perdió el conocimiento en un día caluroso y se cayó de una plataforma, y sufrió una laceración renal, fracturas faciales y varias costillas rotas.

El precio de los golpes de calor

Investigadores también han intentado determinar el costo que supone para los empresarios la pérdida de productividad. El trabajo es menos eficiente cuando suben las temperaturas, y si los trabajadores se ausentan por enfermedad y tienen que ser reemplazados, la producción disminuye mientras se entrena a nuevos trabajadores.

Cullen Page, cocinero de Austin, Texas, y miembro del sindicato Restaurant Workers United, trabaja durante horas frente a un horno de pizza, donde, según dijo, las temperaturas oscilaron entre los 90 y los 100 grados cuando las olas de calor golpeaban la ciudad en agosto.

“Es brutal. Afecta tu forma de pensar. Estás confundido”, dijo. “Me dio un sarpullido por calor que no se me quitaba”. Como hace tanto calor, agregó, el restaurante tiene un alto índice de rotación de empleados. Una campana extractora adecuada sobre los hornos y un mejor aire acondicionado ayudarían, pero los propietarios aún no han hecho las mejoras, dijo.

Via 313, la cadena de pizzerías en la que trabaja Page, no respondió al pedido de comentario.

Page no es el único. Una organización que representa a los empleados de restaurantes, Restaurant Opportunities Centers United, encuestó a miles de trabajadores, muchos de los cuales informaron de condiciones inseguras por el calor: el 24% de los trabajadores de Houston, por ejemplo, y el 37% de los de Philadelphia.

“Los trabajadores estuvieron expuestos a temperaturas de hasta 100 grados después de que se rompieron los aparatos de aire acondicionado y los ventiladores de las cocinas, lo que les dificultaba respirar”, escribió el Sindicato Internacional de Empleados de Servicios, que incluye a trabajadores del sector de comida rápida, en una nota a OSHA. “No hay razón para retrasar más la creación de una norma cuando conocemos la magnitud del problema y sabemos cómo proteger a los trabajadores”, dijeron.

Investigadores del Atlantic Council calculan que Estados Unidos perderá una media de $100,000 millones anuales por la baja de la productividad laboral inducida por el calor a medida que el clima se vuelve más cálido. “A los empresarios les cuesta mucho dinero no proteger a sus trabajadores”, afirmó Juley Fulcher, defensora de salud y  seguridad de los trabajadores de Public Citizen, organización de Washington D.C. que aboga por que el proyecto de ley Asunción Valdivia permita a OSHA promulgar normas el año que viene.

Como modelo, Fulcher sugirió fijarse en California, Maryland, Nevada, Oregon y Washington, los únicos estados con normas que obligan a que todos los trabajadores al aire libre tengan acceso a agua, descanso y sombra.

Aunque las normas no siempre se hacen cumplir, parece que surten efecto. Después de que California instaurara la suya en 2005, se registraron menos accidentes en los reclamos de indemnización de los trabajadores cuando las temperaturas superaban los 85 grados.

Michaels afirmó que OSHA ha demostrado que puede actuar con más rapidez de lo habitual cuando el Congreso se lo permite.

En los primeros días de la epidemia de VIH/SIDA, la agencia aprobó rápidamente normas para evitar que médicos, enfermeras y dentistas se infectaran accidentalmente con agujas. Ahora existe una urgencia similar, dijo. “Dada la crisis climática y la prolongación de los períodos de calor extremo”, señaló, “es imperativo que el Congreso apruebe una legislación que permita a OSHA promulgar rápidamente una norma que salve vidas”.

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The idea seems simple enough.

Preserve all the rituals of smoking: Light up a cigarette, inhale the smoke, including the nasty stuff that can kill you, and exhale. But remove most of the nicotine, the chemical that makes tobacco so darn hard to quit, to help smokers smoke less.

The Food and Drug Administration has been contemplating that strategy for at least six years as one way to make it easier for smokers to cut back, if not quit entirely. Less than two years ago, it authorized 22nd Century Group, a publicly traded plant biotech company based in Buffalo, New York, to advertise its proprietary low-nicotine cigarettes as modified-risk tobacco products.

Now, the first authorized cigarettes with 95% less nicotine than traditional smokes are coming to California, Florida, and Texas in early July, after a year of test-marketing in Illinois and Colorado. It’s part of an aggressive rollout by 22nd Century that, by year’s end, could bring its products to 18 states — markets that together account for more than half of U.S. cigarette sales.

But anti-smoking groups oppose greenlighting 22nd Century’s products. Instead, they urge federal regulators to expand on their original plan of setting a low-nicotine standard for all combustible cigarettes to make them minimally or nonaddictive. They expect the FDA to take the next step in that industrywide regulatory process as early as this fall.

“Unless and until there is a categorywide requirement that nicotine goes down to low, nonaddictive levels, this is not going to make a difference,” said Erika Sward, a spokesperson for the American Lung Association.

Major tobacco companies Altria, R.J. Reynolds, and ITG Brands did not respond to requests for comment.

Cigarette smoking is estimated to cause more than 480,000 deaths a year in the U.S., including from secondhand smoke, and contributes to tobacco use being the leading preventable cause of death nationally. In 2018, then-FDA Commissioner Scott Gottlieb wrote that setting a maximum nicotine level “could result in more than 8 million fewer tobacco-caused deaths through the end of the century – an undeniable public health benefit.”

The FDA reasoned that people would collectively smoke fewer cigarettes and have less exposure to the deadly toxins that are still present in low-nicotine cigarettes.

22nd Century says it used a patent-protected process to control nicotine biosynthesis in the tobacco plant, enabling it to create a pack of cigarettes with about as much nicotine as one Marlboro. It says generally that it uses “modern plant breeding technologies, including genetic engineering, gene-editing, and molecular breeding.”

Keeping 5% of the nicotine is enough to prevent smokers from seeking more to satisfy their craving, said John Miller, president of 22nd Century’s smoking division.

“There’s just enough in there that your brain thinks it’s getting it, but it’s not,” Miller said. “That was really one of the reasons we got to these levels of nicotine, is because you don’t have that additional smoking.”

Miller said the low-nicotine cigarettes can help some smokers cut back or quit, perhaps in conjunction with a nicotine patch or gum, when they’ve tried and failed with other stop-smoking programs.

Campaign for Tobacco-Free Kids President Matthew L. Myers supports the development of an industrywide low-nicotine standard, saying the concept would work only if consumers no longer had the alternative of a higher-nicotine cigarette.

“The concern with a product that’s still addictive, but delivers low levels of nicotine, in fact is that consumers will smoke more, because the evidence shows that somebody who’s addicted will smoke enough to satisfy their craving,” Myers said.

Both the FDA and anti-smoking groups cited studies that found lower levels of nicotine don’t prompt smokers to smoke more to reach the same nicotine levels. But those studies assumed smokers wouldn’t have a high-nicotine alternative, anti-smoking groups and researchers said.

Allowing low-nicotine cigarettes while conventional cigarettes remain available may be a public health detriment if they discourage smokers from quitting entirely or encourage others to start smoking because they think there’s a safe way to experiment with cigarettes, the Campaign for Tobacco-Free Kids and several health associations wrote in a letter urging the FDA to reverse its 22nd Century decision.

22nd Century’s cigarettes are still dangerous, and consumers must substantially cut back or quit smoking to get health advantages. But anti-smoking groups fear many smokers won’t understand that.

“If people are looking at this as a magic bullet and are still continuing their tobacco use, they are not doing anything to change their risk,” said Sward, of the lung association.

Anti-smoking groups particularly object to allowing 22nd Century to market menthol cigarettes even as the FDA is considering outlawing such cigarettes nationwide.

FDA spokesperson Abby Capobianco confirmed that 22nd Century has the only FDA-authorized low-nicotine cigarette but did not respond to requests for comment on the FDA’s plans for regulating nicotine in cigarettes.

California already outlaws menthol flavoring, and Miller said the company won’t challenge that state’s ban and won’t sell its menthol cigarettes in California.

But Miller hopes the company will eventually win an exemption from any federal ban, in part, he said, because more than half of menthol smokers are likely to switch to conventional cigarettes.

“That’s not what the FDA wants to happen,” Miller said. “They need an offramp for these menthol smokers and ours is obviously the natural.”

The company is expanding into California, Florida, and Texas because of the nation-leading size of their smoking populations. It previously announced plans to also begin selling its very low-nicotine, or VLN, cigarettes this year in Arizona, New Mexico, and Utah, and it may move into 10 more states.

The company is prioritizing seven states that offer tax incentives for products the FDA has said reduce tobacco risk, believing its cigarettes will have a price advantage over others in Colorado, Connecticut, Kentucky, Michigan, North Carolina, New Mexico, and Utah. Miller said the company may lobby California lawmakers to add similar incentives as part of the state’s extensive efforts to discourage smoking, which still addicts 10% of its residents.

Miller declined to disclose the company’s market share from the two test states but said sales were above expectations.

“If we can get this to the level of, like, a nonalcoholic beer — you know, 3% to 5% of the category — it’s a game changer,” Miller said. “We know that there’s a latent demand in the market for this product.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.

Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.

Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.

Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.

Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.

En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.

Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.

“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.

Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.

“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.

Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.

Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.

Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.

A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington. 

“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.

Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.

En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.

En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.

Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.

“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”

Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.

Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.

El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.

“Pero no Springfield, Illinois”, bromeó Dempsey.

Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.

Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.

Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.

Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.

El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.

Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.

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Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”

They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.

More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.

Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.

But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”

In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.

Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.

“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.

Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.

“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”

Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.

This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.

While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.

“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”

For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.

A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.

“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”

Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.

Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.

Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.

“But not Springfield, Illinois,” Dempsey quipped.

Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.

But her plans changed as Bailey’s rule stirred fear and confusion.

“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.

She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.

Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.

Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.

On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.

Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.

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

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As hot days become more extreme and common, California education researchers are urging that school districts be required to develop heat plans to keep students safe, just as they have policies for severe storms and active shooters.

A policy brief published last month by the UCLA Luskin Center for Innovation offers a series of recommendations on how education and building codes can help schools become more heat-resilient in the face of global warming. State Sen. Caroline Menjivar, a Democrat, introduced legislation this year requiring schools to have heat plans by 2027, and another bill would make it easier for schools to create more shaded spaces.

“Obviously, the California Education Board wasn’t set up to think about climate change. But now that climate change is a reality, virtually every sector is going to have to think about it,” said V. Kelly Turner, an urban planning associate professor and the director of the Luskin Center.

The center’s recommendations include steps such as setting an indoor temperature limit, documenting the air-conditioning and shade infrastructure of each school, and investing in shade and greenery for play areas. The brief also calls out areas needing more research, such as the safest indoor temperature range.

The best way to keep kids cool is perhaps the most obvious: providing shade, which can reduce the heat stress experienced throughout the day by 25% to 35%, according to the Luskin Center.

That requires reconfiguring playgrounds to make them cooler, said Perry Sheffield, a pediatrician and an environmental medicine researcher at Mount Sinai in New York City. In addition to shade, swapping heat-absorbing materials like asphalt and rubber for grass and wood chips helps cool things down.

“The more we can encourage play as well as physical activity, the healthier our kids are going to be, so figuring out a way to do that safely is really key,” said Sheffield.

On a playground in the San Fernando Valley, Turner said, she once measured 145-degree asphalt and 162-degree rubber — hot enough to cause a third-degree burn in seconds.

California already has millions of dollars of grant funding available for greening schoolyards and increasing tree canopy, such as the Urban and Community Forestry grants through Cal Fire that set a goal to shade at least 30% of school campuses.

To help schools make the best use of funding for extra trees, Turner and her graduate student Morgan Rogers are modeling how increasing the tree canopy to 30% can affect heat stress. They will compare different tree configurations, like dispersed or clustered, and hope to issue recommendations this fall.

Legislators in Sacramento are also looking at amending state building codes to make it easier for schools to install shade structures. Currently, the rules require that an additional 20% of the budget be spent on any new construction or renovation to make an accessible path to the completed project. The bill would add an exception for free-standing shade structures.

Schools would still be required to meet accessibility requirements, but installing a shade structure wouldn’t trigger additional construction. “That’s what we are asking, not to be exempted from those requirements, but to not put the burden on the shade structure,” said Mark Hovatter, chief facilities executive of the Los Angeles Unified School District.

Menjivar said she was excited to see the new UCLA research. Her bill would require the state Department of Education to develop a template for schools to follow in creating their own heat plans, which would have to be completed by 2025 for implementation in 2027. The bill recently passed the state Senate and is now being considered in the Assembly.

Schools outside California are also reckoning with the heat. Researchers at Arizona State University partnered with public health experts and school leaders last spring to develop guidelines for “HeatReady Schools.” The 30 recommendations span topics like school policy (e.g., access to a health professional), the environment (shade coverage on at least half the playground), and training (workshops on identifying heat illness).

The program is working with 35 schools and community centers in Phoenix, with plans to expand to all of Maricopa County by 2026.

Preparing for the warming climate is front of mind for Principal Brad Rumble at Esperanza Elementary School in Los Angeles. The school’s heat-resilience efforts started with filling empty tree wells in front of the campus in 2014. Now, the school boasts a shaded courtyard and a native plant garden, and, courtesy of a grant from the district, more trees are on the way.

“We work together to make sure that our students’ needs are addressed on hot days,” Rumble said. “And, certainly, as more shade becomes available on this campus, we will be able to address those needs even better.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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Some doctors and researchers who are invested in a more individualized approach to finding troublesome tumors are skeptical, raising questions about the data and the reasoning behind the U.S. Preventive Services Task Force’s about-face from its 2016 guidelines.

“The evidence isn’t compelling to start everyone at 40,” said Jeffrey Tice, a professor of medicine at the University of California-San Francisco.

Tice is part of the WISDOM study research team, which aims, in the words of breast cancer surgeon and team leader Laura Esserman, “to test smarter, not test more.” She launched the ongoing study in 2016 with the goal of tailoring screening to a woman’s risk and putting an end to the debate over when to get mammograms.

Advocates of a personalized approach stress the costs of universal screening at 40 — not in dollars, but rather in false-positive results, unnecessary biopsies, overtreatment, and anxiety.

The guidelines come from the federal Department of Health and Human Services’ U.S. Preventive Services Task Force, an independent panel of 16 volunteer medical experts who are charged with helping guide doctors, health insurers, and policymakers. In 2009 and again in 2016, the group put forward the current advisory, which raised the age to start routine mammography from 40 to 50 and urged women from 50 to 74 to get mammograms every two years. Women from 40 to 49 who “place a higher value on the potential benefit than the potential harms” might also seek screening, the task force said.

Now the task force has issued a draft of an update to its guidelines, recommending the screening for all women beginning at age 40.

“This new recommendation will help save lives and prevent more women from dying due to breast cancer,” said Carol Mangione, a professor of medicine and public health at UCLA, who chaired the panel.

But the evidence isn’t clear-cut. Karla Kerlikowske, a professor at UCSF who has been researching mammography since the 1990s, said she didn’t see a difference in the data that would warrant the change. The only way she could explain the new guidelines, she said, was a change in the panel.

“It’s different task force members,” she said. “They interpreted the benefits and harms differently.”

Mangione, however, cited two data points as crucial drivers of the new recommendations: rising breast cancer incidence in younger women and models showing the number of lives screening might save, especially among Black women.

There is no direct evidence that screening women in their 40s will save lives, she said. The number of women who died of breast cancer declined steadily from 1992 to 2020, due in part to earlier detection and better treatment.

But the predictive models the task force built, based on various assumptions rather than actual data, found that expanding mammography to women in their 40s might avert an additional 1.3 deaths per 1,000 in that cohort, Mangione said. Most critically, she said, a new model including only Black women showed 1.8 per 1,000 could be saved.

A 2% annual increase in the number of 40- to 49-year-olds diagnosed with breast cancer in the U.S. from 2016 through 2019 alerted the task force to a concerning trend, she said.

Mangione called that a “really sizable jump.” But Kerlikowske called it “pretty small,” and Tice called it “very modest” — conflicting perceptions that underscore just how much art is involved in the science of preventive health guidelines.

Task force members are appointed by HHS’ Agency for Healthcare Research and Quality and serve four-year terms. The new draft guidelines are open for public comment until June 5. After incorporating feedback, the task force plans to publish its final recommendation in JAMA, the Journal of the American Medical Association.

Nearly 300,000 women will be diagnosed with breast cancer in the U.S. this year, and it will kill more than 43,000, according to National Cancer Institute projections. Expanding screening to include younger women is seen by many as an obvious way to detect cancer earlier and save lives.

But critics of the new guidelines argue there are real trade-offs.

“Why not start at birth?” Steven Woloshin, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, asked rhetorically. “Why not every day?”

“If there were no downsides, that might be reasonable,” he said. “The problem is false positives, which are very scary. The other problem is overdiagnosis.” Some breast tumors are harmless, and the treatment can be worse than the disease, he said.

Tice agreed that overtreatment is an underappreciated problem.

“These cancers would never cause symptoms,” he said, referring to certain kinds of tumors. “Some just regress, shrink, and go away, are just so slow-growing that a woman dies of something else before it causes problems.”

Screening tends to find slow-growing cancers that are less likely to cause symptoms, he said. Conversely, women sometimes discover fast-growing lethal cancers soon after they’ve had clean mammograms.

“Our strong feeling is that one size does not fit all, and that it needs to be personalized,” Tice said.

WISDOM, which stands for “Women Informed to Screen Depending On Measures of risk,” assesses participants’ risk at 40 by reviewing family history and sequencing nine genes. The idea is to start regular mammography immediately for high-risk women while waiting for those at lower risk.

Black women are more likely to get screening mammograms than white women. Yet they are 40% more likely to die of breast cancer and are more likely to be diagnosed with deadly cancers at younger ages.

The task force expects Black women to benefit most from earlier screening, Mangione said.

It’s unclear why Black women are more likely to get the most lethal breast cancers, but research points to disparities in cancer management.

“Black women don’t get follow-up from mammograms as rapidly or appropriate treatment as quickly,” Tice said. “That’s what really drives the discrepancies in mortality.”

Debate also continues on screening for women 75 to 79 years old. The task force chose not to call for routine screening in the older age group because one observational study showed no benefit, Mangione said. But the panel issued an urgent call for research about whether women 75 and older should receive routine mammography.

Modeling suggests screening older women could avert 2.5 deaths per 1,000 women in that age group, more than those saved by expanding screening to younger women, Kerlikowske noted.

“We always say women over 75 should decide together with their clinicians whether to have mammograms based on their preferences, their values, their health history, and their family history,” Mangione said.

Tice, Kerlikowske, and Woloshin argue the same holds true for women in their 40s.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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