“As important as finding the cure to cancer”: Behind the effort to end childhood toxic stress

Getting on their level.
Getting on their level.
Image: Courtesy of the Office of the California Surgeon General
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James is 3 years old and presents with chronic asthma, allergies, and eczema. Lola is five and overweight. Emma is 11 and struggles to focus on her homework, often gets into fights at school, and has trouble sleeping.

These (fictional) children may seem like they have little in common—but that’s because you don’t have all the information. You don’t know, for example, that James’ father has bipolar disorder and misuses his prescription medication. Or that Lola was abused by her aunt. Or that Emma experienced homelessness after her mother died when she was a toddler.

Scientists have known for a long time that those who struggle—from poverty, discrimination, and many forms of insecurity—typically have poorer health than those who don’t. “In every country in the world, poor people get sicker more than people who are economically secure,” says Jack Shonkoff, director of the Center on the Developing Child at Harvard University.

And yet it’s only been in the last 30 years that this knowledge has trickled down into the practice of medicine. An influential study conducted in the 1990s gave this issue a name—adverse childhood experiences, or ACEs—and linked the experience of ACEs with a higher risk of developing health problems like cancer or kidney disease. Quantifying childhood adverse experiences, the study suggested, could help clinicians understand the backstory that leads patients into their office—and figure out how to better treat them.

Now, California is using the science of ACEs at a massive scale to try to help children like James, Lola, and Emma.

On Jan. 1, 2020, the state launched a first-of-its-kind program to screen children who qualify for Medi-Cal, the state’s Medicaid program, for adverse childhood experiences. Under the more than $160 million ACEs Aware initiative, the Office of the California Surgeon General and California Department of Health Care Services developed a training and will pay tens of thousands of Medi-Cal primary care and pediatric providers to screen patients for ACEs, up to three times a year for children, and once a lifetime for adults.

The program, if it works, has the potential to be transformative: There are 7.4 million adults and 5.3 million kids covered by Medi-Cal, roughly half of all children in California. The screening could help clinicians connect children with interventions, resources, and support.

But while experts are generally on board with the science linking ACEs to poor health outcomes, not everyone believes that universal screening is called for. Critics say it diverts resources from the one thing that could truly help: Addressing the fundamental inequalities that disadvantage some children over others. Others worry that screening stigmatizes parents of children who experience ACEs, many of whom are poor parents of color. And some say that widespread screening risks burdening mental health and social services with more patients than they can handle.

California’s initiative is the most ambitious effort of its kind. For Nadine Burke Harris, surgeon general of California and leading advocate for ACEs, it’s the cause of a lifetime. For critics—or, as Burke Harris calls them, naysayers—it’s a well-intentioned mistake.

The science of ACEs

What we know about the impact of adverse childhood experiences dates back to 1998, when two physicians published a paper that showed that children who were abused or grew up in dysfunctional households were more likely to have serious health problems as adults.

Between 1995 and 1997, the researchers mailed a questionnaire to more than 17,000 adults who were members of the Kaiser Health Plan in San Diego, California. It asked whether they had experienced any of 10 forms of household dysfunction, childhood abuse, and neglect—each of them an ACE.

The research team was stunned (pdf). Not only were ACEs common, but they also seemed to have a strong and cumulative effect on human health and well-being. They asked the respondents about their lifestyle habits and medical history, and found that people with four ACEs had a 240% greater risk of contracting hepatitis and were 390% more likely to have chronic obstructive pulmonary disease than those who had zero ACEs. They were also six times more likely to consider themselves an alcoholic and 11 times more likely to have ever injected street drugs.

The study had some important limitations. While it sampled a large number of respondents, they were mostly white (75%) and mostly over the age of 50 (66.3%). It asked people to recall what happened to them in the past, which could introduce bias into their responses. And the questionnaire asked about a very limited set of adverse childhood experiences tied to childhood neglect and household dysfunction, sidestepping problems like discrimination and poverty.

In the 20 years that have passed since the so-called original ACE Study came out, researchers have figured out how early adversity can affect health well into adulthood. It all leads back to the body’s stress response. Stress helps us act when we sense a threat; we breathe faster, taking in more oxygen; our senses are sharpened; and our brains go on alert. That’s all fine when we are lost in the playground and can’t find our parents. But when we face constant and unrelenting stress, from neglect, or abuse, or living among chaos, the response stays activated, and eventually derails normal development.

This is what’s known as toxic stress.

Everyone reacts differently to stress. Many children are naturally more resilient to it, and there are things that can buffer the worst effects of toxic stress on the body, like the love and support of a parent or caregiver. As Megan Gunnar, a child psychologist and head of the Institute of Child Development at the University of Minnesota, previously told Quartz: “When the parent is present and relationship is secure, basically the parent eats the stress: The kid cries, the parent comes, and it doesn’t need to kick in the big biological guns because the parent is the protective system.”

There are also practices known to mitigate some of the effects of stress on the body, like mindfulness and conflict management. But if a child is neglected, abandoned, or separated from their parents—or even worse, abused by them—and if the sources of adversity in their lives are severe, from malnutrition to homelessness to violence, the slow wear-and-tear effect of stress on their bodies and minds could lead to serious health problems in childhood and adulthood.

That, explains Burke Harris, is what an ACE screening is actually doing: not counting the sources of stress in a child’s life, but identifying whether the stressors are negatively impacting that child’s health—what’s known as a toxic stress physiology. The idea is that knowing that a patient may be suffering from this physiology can help a doctor better treat their health condition, whatever it may be.

Towards a solution

When Burke Harris came across the original ACEs study in 2008, a lot of things fell into place. For years, as a pediatrician in a clinic in San Francisco, she had been treating children whose conditions—from asthma to autoimmune disorders to developmental delays—rarely responded to traditional care. The one thing they all had in common was a history of childhood adversity.

About 15 miles away in Oakland, Dayna Long, medical director for the Department of Community Health and Engagement at UCSF Benioff Children’s Hospital, was feeling similarly frustrated. She was filling out prescriptions and giving vaccines, but it wasn’t enough. “If a child is in a situation that is inducing stress, their asthma is going to be more severe,” Long says she realized. “Simply writing a prescription for an inhaler isn’t going to make that inflammation go away.”

Over the next few years, Burke Harris and Long worked to address the socio-economic and emotional needs they believed lurked behind their patients’ health problems. In 2011, Burke Harris opened the Center for Youth Wellness (CYW), a free clinic in Bayview-Hunters Point that served as an innovation lab for her work on ACEs. She collected feedback from the community to improve the questionnaire from the original ACE Study.

She also tested interventions: Patients with an ACE score of four or more and/or health conditions known to be associated with ACEs were referred to a multidisciplinary clinical team who developed and implemented a treatment plan. Families were also offered additional help with their unmet social needs. A report recently published by the Early Intervention Foundation called this model “exemplary.”

Meanwhile, in 2012, Long launched the Family Information & Navigation Desk (FIND) program at the children’s primary care clinic at UCSF Benioff. There, the clinic screened children for unmet basic needs and connected families to community resources. She didn’t think of them as ACEs back then—more like social determinants of health—but she instinctively knew that issues like violence in the home were driving health outcomes. In 2014, she came across the original ACE Study.

Long and Burke Harris finally met in 2014. Burke Harris had convened a meeting of experts on ACEs and toxic stress in Chicago, to discuss creating a national research consortium. Harris’ first memory of Long: She “just got it.”

“With her experience of seeing vulnerable kids in her clinical practice—it was like we had been living parallel lives, seeing the same thing,” recalls Burke Harris.

After that meeting, they formed the Bay Area Research Consortium on Toxic Stress and Health (BARC). Along with Neeta Thakur, assistant professor of medicine at UCSF, Long and Harris formed the lead research team for an effort to design a screening questionnaire for ACEs to be used with kids. All three are women of color, which is not an accident, says Burke Harris: “A lot of biomedical research doesn’t engage communities of color.”

In 2014, Burke Harris’ work on ACEs went mainstream. In a TED Talk that has now been watched by more than 6 million people, she spoke about trauma and its lifelong effects on health. In an interview with TED at the time, she said she was working to develop a treatment for toxic stress. “If we are successful, and I believe that we will be, that will be my legacy.”

In 2017, Thakur, Long, and Harris launched the Pediatric ACEs Screening and Resilience pilot study to test a new 17-item questionnaire (pdf) to identify ACEs. Unlike the questionnaire used in the original ACE Study, their Pediatric ACEs and Related Life-events Screener (PEARLS) encompassed a much broader definition of early adversity—including discrimination, violence in the community, and separation from a caregiver. They tested and validated the PEARLS tool on a group of families and providers in Long’s clinic, incorporating the feedback they received to make sure it was clear and easy to use.

Once they had a well-designed tool, the researchers split 555 children into three groups, and screened two groups for ACEs using different tools while the third didn’t get screened. They had two goals: Figure out how to help kids with high ACE scores, and clarify the biological connection between ACEs and toxic stress. Families of children with an ACE score of 1 or more received one of two interventions: One, based on Long’s FIND model, matched families with community resources, and the other was a monthly mindfulness intervention for kids and families aimed at self-regulating stress. In addition to this, the team collected biomarkers from saliva and blood that could potentially help them diagnose someone with toxic stress physiology.

In the middle of the study, which is in the process of being extended to December 2020, Burke Harris was appointed to serve as California’s first-ever surgeon general. She supported Assembly Bill 340, passed in 2017, which directed the Department of Health Care Services and others to develop tools and protocols for screening children in Medi-Cal for trauma. Later, California governor Gavin Newsom’s state budget allocated funding to reimburse providers who screen children for ACEs using the PEARLS tool, and adults using a separate screening tool. This initiative is called ACEs Aware.

ACEs Awareness  

Dayna Long is tall, with thick black hair and a wide smile that seems to reach every corner of her face. She speaks like she’s always out of breath, in long, academic sentences. She pauses every once in a while to state what is obvious once you meet her—that she went into medicine because she wanted to help people. And she feels like screening for and treating ACEs is the best way to do that.

Almost all of Long’s patients are on Medi-Cal, and now qualify for ACEs screening under the ACEs Aware initiative. She sees them at the primary care clinic at UCSF Benioff Children’s Hospital in Oakland, an unassuming-looking brown brick building in the working-class neighborhood of Temescal. It’s next to a preschool; across the street there’s an acupuncture clinic, a massage parlor, and an insurance company.

The clinic is set up along a narrow corridor to the right of the lobby, past a multi-colored installation of paper butterflies representing migrant children held in detention centers across California. The FIND desk is at the end of the corridor, past several consultation rooms and a waiting area. On the wall, flyers hang on a brown pin board, advertising free legal services and reminding patients to sign up for food benefits under a new state initiative.

Kathy came in for an asthma check-up for her daughter Lily, who is 14. (These are not their real names.)  During their visit, Nitasha Sharma, a FIND coordinator, screened Lily for ACEs, explaining that she didn’t have to fill out the PEARLS questionnaire, but that the clinic hoped she would. She then left the room for about 10 minutes. (If a child is under the age of 12, their caregiver fills it out; if they’re older, they fill it out themselves, though their caregiver is in the room with them.) When they were finished, Sharma ran Lily’s answers into a system that generated her ACE score for Dr. Long, who discussed it with Lily and Kathy and gave them resources about toxic stress.

Through ACEs Aware, doctors are given a tool called the Toxic Stress Risk Assessment Algorithm (pdf, p. 2), which outlines how to screen a child for toxic stress. Armed with a child’s ACE score, clinicians check whether that child has any health conditions known to be associated with ACEs, assess any protective factors, and only then jointly formulate a treatment plan.

If a child has between one and three ACES but no associated health conditions—let’s say their parents got a divorce but they are otherwise healthy—then the clinician would most likely just talk to them and their caregiver about ACEs, toxic stress, and buffering factors. It’s the combination of a high ACE score with an associated health problem and an assessment by the clinician that can lead to a referral for support services.

At the primary care clinic, most patients are referred to the FIND desk, where a team of coordinators like Sharma make recommendations for community resources that meet their needs—anything from local food banks and clothes drives to outdoor time in a regional park. After the family leaves, FIND coordinators will check in every two to four weeks.

“It takes a little bit of pushing,” acknowledges Sharma. Families don’t always want the help, or don’t know how to use the resources they’ve been given. The whole experience can be difficult for them, says Sharma. “It’s pretty intense and it’s pretty intrusive.”

Screening can certainly be unpleasant for families. What parent wants to think that the environment they are providing for their child to grow up in is toxic? “It’s speaking to that risk of kind of pointing the finger, or directing our interest, at the individual with the ACEs,” says Michael Smith, associate medical director of the National Health Service Health Board for Greater Glasgow and Clyde, in Scotland, which recently became the world’s first “ACEs Aware nation” (pdf) outside of the US.

The debate over parents’ emotional reaction to screening raises a deeper question: Does telling stressed-out parents that stress is bad actually help—or could it even harm—their families? 

To screen or not to screen 

Long and Burke Harris say that, on balance, empowering parents with the knowledge that they or their kids may have toxic stress physiology, and giving them some tools to damper its effects, will do more good than harm. But that’s not always true, especially in cases where the caregivers themselves are the sources of stress in their child’s life.

“If the parents are filing it out, and the child is … being abused or under stress or something, how would one really know what’s going on?,” asks Meghan, a 30-year-old mom living in Oakland. She brought her 7-month-old daughter to Long’s clinic for her third postpartum checkup and filled out a PEARLS questionnaire. She also worries about what the screening might do to parents. “For some people, it might be a bit uncomfortable, especially if they themselves had a traumatic childhood. I have a lot of friends who, as kids, were abused in different types of ways, sexually, mentally, verbally.”

The risk of re-traumatizing parents or children is just one of the concerns cited in a recent report by the Early Intervention Foundation, which came out against universal screening for ACEs. It declared that, while screening “could provide some benefits,” “serious questions remain” around the efficacy, acceptability, and accuracy of current methods.

Another major concern surrounding any screening program is what to do for the people who screen positive. “We are still in the very embryonic stage of knowing exactly what we should be doing with people who get screened for childhood adversities,” argues David Finklehor, director of the Crimes against Children Research Center at the University of New Hampshire.

Paula Braveman, director of the UCSF Center on Social Disparities in Health, says that’s her main concern about universal screening for ACEs. “Does the safety net exist to which we can refer people?” she asks. “Because if we’re referring to a safety net that has huge holes in it, we’re kidding ourselves, and we’re just taking up time in the clinical encounter that’s being wasted, making us (the providers) feel that we’re doing our duty by screening, but not making a difference in the end.”

“As physicians … we can screen and we can refer, and we’re taught that in medical school,” says Braveman. “But sometimes we refer to services that are totally inadequate.” Some pediatricians may refer children with high ACE scores to external services, like psychiatrists or developmental specialists. But these are in short supply and high demand, and it’s not clear that there would be enough of them if clinicians across California suddenly started referring new patients.

“We don’t have enough mental health services right now to go around. That’s a real issue,” acknowledges Burke Harris. “But I think the concern is that unless we have a therapist for every single patient who screens positive for ACEs, we can’t screen. And that also is false.” She and Long argue that pediatricians can serve as a resource for families, by talking to them about attachment and about how to build up their own resilience to stress. “What the work is demanding is that we realize that we, as pediatricians, are enough,” says Long.

Even if there were enough mental health specialists to meet the need for them in the large Medi-Cal population, critics say those referrals aren’t innocuous. “Services can do harm at times,” argues John McLennan, a child psychiatrist and associate professor of pediatrics at the University of Calgary in Canada. “It could be medicating, it could be ill-informed psychological interventions. Anything has the potential for positive or negative effects.”

“There’s a big worry here, which I don’t pick up in the US, that we risk medicalizing issues which are actually social and political issues,” warns Smith. He has worked on ACEs policy in Scotland and doesn’t support universal screening. He worries that America’s cultural obsession with metrics and scores could be overshadowing what truly matters—systemic change to benefit vulnerable families.

“There’s lots of health issues in the world that are bad and problematic, but there’s only a few [for which] screening actually makes sense,” explains McLennan. He has co-authored a book chapter arguing that ACEs aren’t one of them.

Next steps

“The goal of screening is prevention,” says Burke Harris. The ideal screening program, she argues, takes advantage of “a window of latency between exposure and onset” to mitigate or even reverse some of the effects of toxic stress with healthier lifestyle habits, like sleep, exercise, nutrition, mindfulness, mental health, and healthy relationships. She and Long are analyzing the data from the PEARLS Study to see whether the interventions they tested in clinic actually did that.

For Burke Harris and her team, ACEs Aware is just the first step. They hope to gather the lessons learned in Medi-Cal clinics across the state and then scale ACEs screening to every clinic in California, and eventually in the United States. Along the way, they’re collecting feedback from clinicians on the ground to improve the way universal screening is done. Clinicians can report issues or adverse events through the California ACEs Learning and Quality Improvement Collaborative.

“We have not been that good at getting screening programs right,” says the University of New Hampshire’s Finklehor, who worries that ACEs Aware is being scaled up too quickly. There’s precedent, like the rollout of the prostate-specific antigen (PSA) blood test in the US and Europe in the 1980s. The test, meant to detect prostate cancer in men, led to high rates of over-identification and over-treatment, with no significant reduction in deaths.

Burke Harris and Long are quick to point out that there’s a benefit to universal screening that often goes unacknowledged: An ACE questionnaire could be the first time many people have ever been asked questions about what they may have gone through as a child during a healthcare visit—or at all.

That, says Braveman, is because “it’s very hard for providers to ask those questions.” For families, there’s shame involved, and fear as well, of having your kids taken away from you, or of being deported if you’re in the country illegally. And most physicians can only spend a few minutes with each family, and may not feel comfortable diving into their past history of abuse or poverty—or may not think they need to.

Physicians are humans after all, and subject to bias like everybody else. “A family may be coming in to see you, and everybody looks middle-class,” says Braveman. “And to admit to you that they’re not adequately feeding their kids; to admit that sometimes, their kids are going hungry; the shame for a parent is huge.”

“There’s a notion among clinicians of like, I’ll recognize it when I see it, or I’ll know which of my patients have experienced ACEs,” echoes Burke Harris. “I guarantee you, you don’t. I guarantee you that your rate of false negative using that as your screening criteria is going to be unacceptably high.”

Long talks about a moment—the moment when, in the course of the PEARLS study, she would talk to parents about their ACE score and their child’s ACE score. It was so often the same. In her clinic, 90% of adults had an ACE score of one or more, and half had a score of four or more, while 80% of children, starting from three months of age, had at least one ACE and 54% had four or more. “There was this moment that happened when the parent would look at their ACE score and then look at their child’s ACE score—this moment of silent recognition, like, oh, I get it. What is happening to me is also happening to my child.”

“Toxic stress is spread from person to person, definitely handed out from caregiver to child,” explains Burke Harris. We know that, especially in the early years, children need consistent care and attention from loving caregivers. But it’s hard to be focused on parenting when you’re wondering where you and your children will sleep tonight, or where your next meal is coming from. “As a parent, they are heroes in the life of their child, and every parent wants the best for their child,” says Long. “How can we actually break that intergenerational transmission of ACEs, which is so apparent when you see the parallel ACE score of that parent to their very young child?”

The intergenerational transmission of trauma is at the heart of this enterprise. Medicine has gotten pretty good at curing single diseases. We have antibiotics for tuberculosis and a vaccine for tetanus. But what if we could figure out a way to treat an individual for toxic stress, and in doing so, treat their children, and their children’s children? That’s a question California is poised to answer.

“When you think about the importance of treating toxic stress and what that means for breaking the intergenerational cycle [of trauma], for me, this effort is just as important as the quest for the cure to cancer,” says Burke Harris.

Long agrees: “Trauma is the public health crisis of our time.”

Read more from our series on Rewiring Childhood. This reporting is part of a series supported by a grant from the Bernard van Leer Foundation. The author’s views are not necessarily those of the Bernard van Leer Foundation.