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What Does a Chatbot Know About Eating Disorders? Users of a Help Line Are About to Find Out

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by Kate Wells, Michigan Radio
Mon, 12 Jun 2023 09:00:00 +0000

For more than 20 years, the National Eating Disorders Association has operated a phone line and online platform for people seeking help for anorexia, bulimia, and other eating disorders. Last year, nearly 70,000 individuals used the help line.

NEDA shuttered that service in May, saying that, in its place, a chatbot called Tessa, designed by eating disorder experts with funding from NEDA, would be deployed.

When NPR aired a report about this last month, Tessa was up and running online. Since then, both the chatbot's page and a NEDA article about Tessa have been taken down. When asked why, NEDA said the bot is being “updated,” and the latest “version of the current program [will be] available soon.”

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Then NEDA announced on May 30 that it was indefinitely disabling Tessa. Patients, families, , and other experts on eating disorders were stunned. The episode has set off a fresh wave of debate as companies turn to artificial intelligence as a possible solution for a mental crisis and treatment shortage.

Paid staffers and volunteers for the NEDA help line said that replacing the service with a chatbot could further isolate the thousands of people who use it when they feel they have nowhere else to turn.

“These young kids … don't feel comfortable coming to their friends or their or anybody about this,” said Katy Meta, a 20-year-old college student who has volunteered for the help line. “A lot of these individuals come on multiple times because they have no other outlet to talk with anybody. … That's all they have, is the chat line.”

The decision is part of a larger trend: Many mental health organizations and companies are struggling to provide services and care in response to a sharp escalation in demand, and some are turning to chatbots and AI, even though clinicians are still trying to figure out how to effectively deploy them, and for what conditions.

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The help line's five staffers formally notified their employer they had formed a union in March. Just a few days later, on a March 31 call, NEDA informed them that they would be laid off in June. NPR and KFF Health News obtained audio of the call. “We will, subject to the terms of our legal responsibilities, [be] beginning to wind down the help line as currently operating,” NEDA board chair Geoff Craddock told them, “with a transition to Tessa, the AI-assisted technology, expected around June 1.”

NEDA's leadership denies the decision had anything to do with the unionization but told NPR and KFF Health News it became necessary because of the covid-19 pandemic, when eating disorders surged and the number of calls, texts, and messages to the help line more than doubled.

The increase in crisis-level calls also raises NEDA's legal liability, managers explained in an email sent March 31 to current and former volunteers, informing them that the help line was ending and that NEDA would “begin to pivot to the expanded use of AI-assisted technology.”

“What has really changed in the landscape are the federal and requirements for mandated for mental and physical health issues (self-harm, suicidality, child abuse),” according to the email, which NPR and KFF Health News obtained. “NEDA is now considered a mandated reporter and that hits our risk profile — changing our training and daily work processes and driving up our insurance premiums. We are not a crisis line; we are a referral center and information provider.”

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Pandemic Created a ‘Perfect Storm' for Eating Disorders

When it was time for a volunteer shift on the help line, Meta usually logged in from her dorm room at Dickinson College in Pennsylvania.

Meta recalled a recent conversation on the help line's messaging platform with a girl who said she was 11. The girl said she had just confessed to her parents that she was struggling with an eating disorder, but the conversation had gone badly.

“The parents said that they ‘didn't believe in eating disorders' and [told their daughter], ‘You just need to eat more. You need to stop doing this,'” Meta recalled. “This individual was also suicidal and exhibited traits of self-harm as well. … It was just really heartbreaking to see.”

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Eating disorders are common, serious, and sometimes fatal illnesses. An estimated 9% of Americans experience an eating disorder during their lifetimes. Eating disorders also have some of the highest mortality rates among mental illnesses, with an estimated toll of more than 10,000 Americans each year.

But after covid hit, closing schools and forcing people into prolonged isolation, crisis calls and messages like the one Meta describes became far more frequent on the help line.

In the U.S., the rate of pediatric hospitalizations and ER visits surged. On the NEDA help line, client volume increased by more than 100% compared with pre-pandemic levels.

“Eating disorders thrive in isolation, so covid and shelter-in-place was a tough time for a lot of folks struggling,” explained Abbie Harper, who has worked as a help line associate.

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Until a few weeks ago, the help line was by just five to six paid staffers and two supervisors, and it depended on a rotating roster of 90-165 volunteers at any given time, according to NEDA.

Yet even after lockdowns ended, NEDA's help line volume remained elevated above pre-pandemic levels, and the cases continued to be clinically severe. Staffers felt overwhelmed, undersupported, and increasingly burned out, and turnover increased, according to multiple interviews.

The help line staff formally notified NEDA that their unionization vote had been certified on March 27. Four days later, they learned their positions were being eliminated.

“Our volunteers are volunteers,” said Lauren Smolar, NEDA's vice president of mission and education. “They're not professionals. They don't have crisis training. And we really can't accept that kind of responsibility.” Instead, she said, people seeking crisis help should be reaching out to resources like 988, a 24/7 suicide and crisis hotline that connects people with trained counselors.

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The surge in volume also meant the help line was unable to respond immediately to 46% of initial contacts, and it could take six to 11 days to respond to messages.

“And that's frankly unacceptable in 2023, for people to have to wait a week or more to receive the information that they need, the specialized treatment options that they need,” Smolar said.

After learning in the March 31 email that the helpline would be phased out, volunteer Faith Fischetti, 22, tried out the chatbot on her own, asking it some of the more frequent questions she gets from users. But her interactions with Tessa were not reassuring: “[The bot] gave links and resources that were completely unrelated” to her questions, she said.

Fischetti's biggest worry is that someone coming to the NEDA site for help will leave because they “feel that they're not understood, and feel that no one is there for them. And that's the most terrifying thing to me.”

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A Chatbot Can Miss Red Flags

Tessa the chatbot was created to help a specific cohort: people with eating disorders who never receive treatment.

Only 20% of people with eating disorders get formal help, according to Ellen Fitzsimmons-Craft, a psychologist and associate professor at Washington University School of Medicine in St. Louis. Her team created Tessa after receiving funding from NEDA in 2018, with the goal of looking for ways technology could help fill the treatment gap.

NEDA said Tessa was supposed to be a “rule-based” chatbot, meaning one that is programmed with a limited set of possible responses. It is not ChatGPT and cannot generate unique answers in response to specific queries. “So she can't go off the rails, so to speak,” Fitzsimmons-Craft said.

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The plan was for Tessa to guide users through an interactive, weeks-long course about body positivity, based on cognitive behavioral therapy tools. Additional content about bingeing, weight concerns, and regular eating was under development but not yet available to users.

There's evidence the AI approach can help. Fitzsimmons-Craft's team did a small study that found college students who interacted with Tessa had significantly greater reductions in “weight/shape concerns” than a control group at three- and six-month follow-ups.

But even the best-intentioned technology can carry risks. Fitzsimmons-Craft's team published a different study looking at ways the chatbot “unexpectedly reinforced harmful behaviors at times.” For example, the chatbot would give users a prompt: “Please take a moment to write about when you felt best about your body?”

Responses included: “When I was underweight and could see my bones.” “I feel best about my body when I ignore it and don't think about it at all.”

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The chatbot seemed to ignore the troubling aspects of such responses — and even to affirm negative thinking — when it would reply: “It is awesome that you can recognize a moment when you felt confident in your skin, let's keep working on making you feel this good more often.”

Researchers were able to troubleshoot some of those issues. But the chatbot still missed red flags, the study found, such as when it asked: “What is a small healthy eating habit goal you would like to set up before you start your next conversation?”

One user replied, “Don't eat.”

“Take a moment to pat yourself on the back for doing this hard work, <>!” the chatbot responded.

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Massachusetts Institute of Technology assistant professor Marzyeh Ghassemi has seen issues like this crop up in her own research developing machine learning to improve health.

Large language models and chatbots will inevitably make mistakes, but “sometimes they tend to be wrong more often for certain groups, like women and minorities,” she said.

If people receive bad advice or instructions from a bot, “people sometimes have a difficulty not listening to it,” Ghassemi added. “I think it sets you up for this really negative outcome … especially for a mental health crisis situation, where people may be at a point where they're not thinking with absolute clarity. It's very important that the information that you give them is correct and is helpful to them.”

And if the value of the live help line was the ability to connect with a real person who deeply understands eating disorders, Ghassemi said, a chatbot can't do that.

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“If people are experiencing a majority of the positive impact of these interactions because the person on understands fundamentally the experience they're going through, and what a struggle it's been, I struggle to understand how a chatbot could be part of that.”

Tessa Goes ‘Off the Rails'

When Sharon Maxwell heard NEDA was promoting Tessa as “a meaningful prevention resource” for those struggling with eating disorders, she wanted to try it out.

Maxwell, based in San Diego, had struggled for years with an eating disorder that began in childhood. She now works as a consultant in the eating disorder field. “Hi, Tessa,” she typed into the online text box. “How do you support folks with eating disorders?”

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Tessa rattled off a list of ideas, including resources for “healthy eating habits.” Alarm bells immediately went off in Maxwell's head. She asked Tessa for details. Before long, the chatbot was giving her tips on losing weight — ones that sounded an awful lot like what she'd been told when she was put on Weight Watchers at age 10.

“The recommendations that Tessa gave me were that I could lose 1 to 2 pounds per week, that I should eat no more than 2,000 calories in a day, that I should have a calorie deficit of 500-1,000 calories per day,” Maxwell said. “All of which might sound benign to the general listener. However, to an individual with an eating disorder, the focus of weight loss really fuels the eating disorder.”

It's really important that you find what healthy snacks you like the most, so if it's not a fruit, try something else!

Tessa, the chatbot

NEDA blamed the chatbot's issues on Cass, the mental health chatbot company that operated Tessa as a free service. Cass had changed Tessa without NEDA's awareness or approval, said NEDA CEO Liz Thompson, enabling the chatbot to generate new answers beyond what Tessa's creators had intended.

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Cass' founder and CEO, Michiel Rauws, said the changes to Tessa were made last year as part of a “systems upgrade,” including an “enhanced question-and-answer feature.” That feature uses generative artificial intelligence — meaning it gives the chatbot the ability to use new data and create new responses.

That change was part of NEDA's contract, Rauws said.

But Thompson disagrees. She told NPR and KFF Health News that “NEDA was never advised of these changes and did not and would not have approved them.”

“The content some testers received relative to diet culture and weight management, [which] can be harmful to those with eating disorders, is against NEDA policy, and would never have been scripted into the chatbot by eating disorders experts,” she said.

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Complaints About Tessa Started Last Year

NEDA was aware of issues with the chatbot months before Maxwell's interactions with Tessa in late May.

In October 2022, NEDA passed along screenshots from Monika Ostroff, executive director of the Multi-Service Eating Disorders Association in Massachusetts. They showed Tessa telling Ostroff to avoid “unhealthy” foods and eat only “healthy” snacks, like fruit.

“It's really important that you find what healthy snacks you like the most, so if it's not a fruit, try something else!” Tessa told Ostroff. “So the next time you're hungry between meals, try to go for that instead of an unhealthy snack like a bag of chips. Think you can do that?”

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Ostroff said this was a clear example of the chatbot encouraging “diet culture” mentality. “That meant that they [NEDA] either wrote these scripts themselves, they got the chatbot and didn't bother to make sure it was safe and didn't test it, or released it and didn't test it,” she said.

The healthy-snack language was quickly removed after Ostroff reported it. But Rauws said that language was part of Tessa's “pre-scripted language, and not related to generative AI.”

Fitzsimmons-Craft said her team didn't write it, that it “was not something our team designed Tessa to offer and that it was not part of the rule-based program we originally designed.”

Then, earlier this year, “a similar happened as another example,” Rauws said.

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“This time it was around our enhanced question-and-answer feature, which leverages a generative model. When we got notified by NEDA that an answer text it provided fell outside their guidelines,” it was addressed right away, he said.

Rauws said he can't provide more details about what this event entailed.

“This is another earlier instance, and not the same instance as over the Memorial Day weekend,” he said via email, referring to Maxwell's interactions with Tessa. “According to our privacy policy, this is related to user data tied to a question posed by a person, so we would have to get approval from that individual first.”

When asked about this event, Thompson said she doesn't know what instance Rauws is referring to.

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Both NEDA and Cass have issued apologies.

Ostroff said that regardless of what went wrong, the impact on someone with an eating disorder is the same. “It doesn't matter if it's rule-based or generative, it's all fat-phobic,” she said. “We have huge populations of people who are harmed by this kind of language every day.”

She also worries about what this might mean for the tens of thousands of people turning to NEDA's help line each year.

Thompson said NEDA still offers numerous resources for people seeking help, including a screening tool and resource map, and is developing new online and in-person programs.

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“We recognize and regret that certain decisions taken by NEDA have disappointed members of the eating disorders community,” she wrote in an emailed statement. “Like all other focused on eating disorders, NEDA's resources are limited and this requires us to make difficult choices. … We always wish we could do more and we remain dedicated to doing better.”

This article is from a partnership that includes Michigan Radio, NPR, and KFF Health News.

By: Kate Wells, Michigan Radio
Title: What Does a Chatbot Know About Eating Disorders? Users of a Help Line Are About to Find Out
Sourced From: kffhealthnews.org/news/article/what-does-a-chatbot-know-about-eating-disorders-users-of-a-help-line-are-about-to-find-out/
Published Date: Mon, 12 Jun 2023 09:00:00 +0000

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Kaiser Health News

KFF Health News’ ‘What the Health?’: Bird Flu Lands as the Next Public Health Challenge

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Thu, 16 May 2024 18:30:00 +0000

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

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Julie Rovner is chief Washington correspondent and host of KFF Health News' weekly health policy news , “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “ Politics and Policy A to Z,” now in its third edition.

Public health are watching with concern since a strain of bird flu spread to dairy cows in at least nine states, and to at least one dairy worker. But in the wake of , many farmers are loath to let in health authorities for testing.

Meanwhile, another large health company — the Catholic hospital chain Ascension — has been targeted by a cyberattack, leading to serious problems at some facilities.

This week's panelists are Julie Rovner of KFF Health News, Rachel Cohrs Zhang of Stat, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

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Panelists

Rachel Cohrs Zhang
Stat News


@rachelcohrs


Read Rachel's stories.

Alice Miranda Ollstein
Politico

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@AliceOllstein


Read Alice's stories.

Sandhya Raman
CQ Roll Call


@SandhyaWrites

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Read Sandhya's stories.

Among the takeaways from this week's episode:

  • Stumbles in the early response to bird flu bear an uncomfortable resemblance to the early days of covid, including the troubles protecting workers who could be exposed to the disease. Notably, the Department of Agriculture benefited from millions in covid relief funds designed to strengthen disease surveillance.
  • Congress is working to extend coverage of telehealth care; the question is, how to pay for it? Lawmakers appear to have settled on a two-year agreement, though more on the extension — including how much it will cost — remains unknown.
  • Speaking of telehealth, a new shows about 20% of medication abortions are supervised via telehealth care. -level restrictions are forcing those in need of care to turn to options farther from home.
  • And new reporting on Medicaid illuminates the number of people falling through the cracks of the health system for low-income and disabled Americans — including how insurance companies benefit from individuals' confusion over whether they have Medicaid coverage at all.

Also this week, Rovner interviews Atul Grover of the Association of American Medical Colleges about its recent analysis showing that graduating medical are avoiding training in states with abortion bans and major restrictions.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: NPR's “Why Writing by Hand Beats Typing for Thinking and Learning,” by Jonathan Lambert.  

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Alice Miranda Ollstein: Time's “‘I Don't Have Faith in Doctors Anymore.' Women Say They Were Pressured Into Long-Term Birth Control,” by Alana Semuels.  

Rachel Cohrs Zhang: Stat's “After Decades Fighting Big Tobacco, Cliff Douglas Now Leads a Foundation Funded by His Former Adversaries,” by Nicholas Florko.  

Sandhya Raman: The Baltimore Banner's “People With Severe Mental Illness Are Stuck in Jail. Montgomery County Is the Epicenter of the Problem,” by Ben Conarck.  

Also mentioned on this week's podcast:

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Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News' “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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Title: KFF Health News' ‘What the Health?': Bird Flu Lands as the Next Public Health
Sourced From: kffhealthnews.org/news/podcast/what-the-health-347-bird-flu-next-public-health-challenge-may-16-2024/
Published Date: Thu, 16 May 2024 18:30:00 +0000

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Kaiser Health News

California’s $12 Billion Medicaid Makeover Banks on Nonprofits’ Buy-In

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Angela Hart
Thu, 16 May 2024 09:00:00 +0000

TURLOCK, Calif. — For much of his young life, Jorge Sanchez regularly gasped for air, at times coughing so violently that he'd almost throw up. His mother whisked him to the emergency room late at night and slept with him to make sure he didn't stop breathing.

“He's had these problems since he was born, and I couldn't figure out what was triggering his asthma,” Fabiola Sandoval said of her son, Jorge, now 4. “It's so hard when your child is hurting. I was willing to try anything.”

In January, community workers visited Sandoval's home in Turlock, a city in California's Central Valley where dust from fruit and nut orchards billows through the air. They scoured Sandoval's home for hazards and explained that harsh cleaning products, air fresheners, and airborne dust and pesticides can trigger an asthma attack.

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The team also provided Sandoval with air purifiers, a special vacuum cleaner that can suck dust out of the air, hypoallergenic mattress covers, and a humidity sensor — goods that retail for hundreds of dollars. Within a few months, Jorge was breathing easier and was able to run and play outside.

The in-home consultation and supplies were paid for by Medi-Cal, California's Medicaid health insurance program for low-income residents. Gov. Gavin Newsom is spearheading an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider, one that relies not only on doctors and nurses, but also community health workers and nonprofit groups that offer dozens of services, delivering healthy meals and helping homeless people pay for housing.

These groups are redefining health care in California as they compete with businesses for a share of the money, and become a new arm of the sprawling Medi-Cal bureaucracy that serves nearly 15 million low-income residents on an annual budget of $158 billion.

But worker shortages, negotiations with health insurance companies, and learning to navigate complex billing and technology have hamstrung the community groups' ability to deliver the new services: Now into the third year of the ambitious five-year experiment, only a small fraction of eligible patients have received benefits.

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“This is still so new, and everyone is just overwhelmed at this point, so it's slow-going,” said Kevin Hamilton, a senior director at the Central California Asthma Collaborative.

The collaborative has served about 3,650 patients, including Sandoval, in eight counties since early 2022, he said. It has years of experience with Medi-Cal patients in the Central Valley and has received about $1.5 million of the new initiative's money.

By contrast, CalOptima Health, Orange County's primary Medi-Cal insurer, is new to offering asthma benefits and has signed up 58 patients so far.

“Asthma services are so difficult to get going” because the nonprofit infrastructure for these services is virtually nonexistent, said Kelly Bruno-Nelson, CalOptima's executive director for Medi-Cal. “We need more community-based organizations on board because they're the ones who can serve a population that nobody wants to deal with.”

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Newsom, a Democrat in his second term, says his signature health care initiative, known as CalAIM, seeks to reduce the cost of caring for the 's sickest and most vulnerable patients, including homeless Californians, foster children, former inmates, and people battling addiction disorders.

In addition to in-home asthma remediation, CalAIM offers 13 broad categories of social services, plus a benefit connecting eligible patients with one-on-one care managers to them obtain anything they need to get healthier, from grocery shopping to finding a job.

The 25 managed-care insurance companies participating in Medi-Cal can choose which services they offer, and contract with community groups to provide them. Insurers have hammered out about 4,300 large and small contracts with nonprofits and businesses.

So far, about 103,000 Medi-Cal patients have received CalAIM services and roughly 160,000 have been assigned personal care managers, according to state data, a sliver of the hundreds of thousands of patients who likely qualify.

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“We're all new to health care, and a lot of this is such a foreign concept,” said Helena Lopez, executive director of A Greater Hope, a nonprofit organization providing social services in Riverside and San Bernardino counties, such as handing out baseball cleats to children to help them be active.

Tiffany Sickler runs Koinonia Family Services, which offers California foster children mental health and other types of care, and even helped a patient pay off parking tickets. But the program is struggling on a shoestring budget.

“If you want to do this, you have to learn all these new systems. It's been a huge learning curve, and very time-consuming and frustrating, especially without adequate funding,” she said.

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Brandon Richards, a Newsom spokesperson, defended CalAIM, saying that it was “on the cutting edge of health care” and that the state was working to increase “awareness of these new services and support.”

For nonprofits and businesses, CalAIM is a money-making — one that top state health hope to make permanent. Health insurers, which receive hefty payments from the state to serve more people and offer new services, share a portion with service providers.

In some places, community groups are competing with national corporations for the new funding, such as Mom's Meals, an Iowa-based company that delivers prepared meals across the United States.

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Mom's Meals has an advantage over neighborhood nonprofit groups because it has long served seniors on Medicare and was able to immediately start offering the CalAIM benefit of home-delivered meals for patients with chronic diseases. But even Mom's Meals isn't reaching everyone who qualifies, because doctors and patients don't always know it's an option, said Catherine Macpherson, the company's chief nutrition officer.

“Utilization is not as high as it should be yet,” she said. “But we were well positioned, because we already had departments to do billing and contracting with health care.”

Middleman companies also have their eye on the billions of CalAIM dollars and are popping up to assist small organizations to go up against established ones like Mom's Meals. For instance, the New York-based Nonprofit Finance Fund is advising homeless service providers how to get more contracts and expand benefits.

Full Circle Health Network, with 70 member organizations, is helping smaller nonprofit groups develop and deliver services primarily for families and foster children. Full Circle has signed a deal with Kaiser Permanente, allowing the health care giant to access its network of community groups.

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“We're allowing organizations to launch these benefits much faster than they've been able to do and to reach more vulnerable people,” said Camille Schraeder, chief executive of Full Circle. “Many of these are grassroots organizations that have the trust and expertise on the ground, but they're new to health care.”

One of the biggest challenges community groups face is hiring workers, who are key to finding eligible patients and persuading them to participate.

Kathryn Phillips, a workforce expert at the California Health Care Foundation, said there isn't enough seed money for community groups to hire workers and pay for new technology platforms. “They bring the trust that is needed, the cultural competency, the diversity of languages,” she said. “But there needs to be more funding and reimbursement to build this workforce.”

Health insurers say they are trying to increase the workforce. For instance, L.A. Care Health Plan, the largest Medi-Cal insurer in California, has given $66 million to community organizations for hiring and other CalAIM needs, said Sameer Amin, the group's chief medical officer.

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“They don't have the staffing to do all this stuff, so we're helping with that all while teaching them how to build up their health care infrastructure,” he said. “Everyone wants a win, but this isn't going to be successful overnight.”

In the Central Valley, Jorge Sanchez is one of the lucky early beneficiaries of CalAIM.

His mother credits the trust she established with community health workers, who spent many hours over multiple visits to teach her how to control her son's asthma.

“I used to love cleaning with bleach” but learned it can trigger breathing problems, Sandoval said.

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Since she implemented the health workers' recommendations, Sandoval has been able to let Jorge sleep alone at night for the first time in four years.

this program and all the things available is amazing,” said Sandoval, as she pointed to the dirty dust cup in her new vacuum cleaner. “Now my son doesn't have as many asthma attacks and he can run around and be a normal kid.”

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

——————————
By: Angela Hart
Title: California's $12 Billion Medicaid Makeover on Nonprofits' Buy-In
Sourced From: kffhealthnews.org//article/newsom-medicaid-12-billion-dollar-makeover-nonprofits-bureacracy-calaim/
Published Date: Thu, 16 May 2024 09:00:00 +0000

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Kaiser Health News

Federal Panel Prescribes New Mental Health Strategy To Curb Maternal Deaths

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Cheryl Platzman Weinstock
Thu, 16 May 2024 09:00:00 +0000

For , call or text the National Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262) or contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.” Spanish-language services are also available.

BRIDGEPORT, Conn. — Milagros Aquino was trying to find a new place to live and had been struggling to get used to new foods after she moved to Bridgeport from Peru with her husband and young son in 2023.

When Aquino, now 31, got pregnant in May 2023, “instantly everything got so much worse than before,” she said. “I was so sad and lying in bed all day. I was really lost and just surviving.”

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Aquino has lots of company.

Perinatal depression affects as many as 20% of women in the United States during pregnancy, the postpartum period, or both, according to studies. In some states, anxiety or depression afflicts nearly a quarter of new mothers or pregnant women.

Many women in the U.S. go untreated because there is no widely deployed system to screen for mental illness in mothers, despite widespread recommendations to do so. Experts say the lack of screening has driven higher rates of mental illness, suicide, and drug overdoses that are now the leading causes of death in the first year after a woman gives birth.

“This is a systemic issue, a medical issue, and a human rights issue,” said Lindsay R. Standeven, a perinatal psychiatrist and the clinical and education director of the Johns Hopkins Reproductive Mental Health Center.

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Standeven said the root causes of the problem include racial and socioeconomic disparities in maternal care and a lack of support for new mothers. She also pointed a finger at a shortage of mental health professionals, insufficient maternal mental health training for providers, and insufficient reimbursement for mental health services. Finally, Standeven said, the problem is exacerbated by the absence of national maternity leave policies, and the access to weapons.

Those factors helped a 105% increase in postpartum depression from 2010 to 2021, according to the American Journal of Obstetrics & Gynecology.

For Aquino, it wasn't until the last weeks of her pregnancy, when she signed up for acupuncture to relieve her stress, that a social worker helped her get care through the Emme Coalition, which connects girls and women with financial help, mental health counseling services, and other resources.

Mothers diagnosed with perinatal depression or anxiety during or after pregnancy are at about three times the risk of suicidal behavior and six times the risk of suicide compared with mothers without a mood disorder, according to recent U.S. and international studies in JAMA Network Open and The BMJ.

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The toll of the maternal mental health crisis is particularly acute in rural communities that have become maternity care deserts, as small hospitals close their labor and delivery units because of plummeting birth rates, or because of financial or staffing issues.

This , the Maternal Mental Health Task Force — co-led by the Office on Women's Health and the Substance Abuse and Mental Health Services Administration and formed in September to respond to the problem — recommended creating maternity care centers that could serve as hubs of integrated care and birthing facilities by building upon the services and personnel already in communities.

The task force will soon determine what portions of the plan will require congressional action and funding to implement and what will be “low-hanging fruit,” said Joy Burkhard, a member of the task force and the executive director of the nonprofit Policy Center for Maternal Mental Health.

Burkhard said equitable access to care is essential. The task force recommended that federal officials identify areas where maternity centers should be placed based on data identifying the underserved. “Rural America,” she said, “is first and foremost.”

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There are shortages of care in “unlikely areas,” Los Angeles County, where some maternity wards have recently closed, said Burkhard. Urban areas that are underserved would also be eligible to get the new centers.

“All that mothers are asking for is maternity care that makes sense. Right now, none of that exists,” she said.

Several pilot programs are designed to help struggling mothers by training and equipping midwives and doulas, people who provide guidance and support to the mothers of newborns.

In Montana, rates of maternal depression before, during, and after pregnancy are higher than the national average. From 2017 to 2020, approximately 15% of mothers experienced postpartum depression and 27% experienced perinatal depression, according to the Montana Pregnancy Risk Assessment Monitoring System. The state had the sixth-highest maternal mortality rate in the country in 2019, when it received a federal grant to begin training doulas.

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To date, the program has trained 108 doulas, many of whom are Native American. Native Americans make up 6.6% of Montana's population. Indigenous people, particularly those in rural areas, have twice the national rate of severe maternal morbidity and mortality compared with white women, according to a study in Obstetrics and Gynecology.

Stephanie Fitch, grant manager at Montana Obstetrics & Maternal Support at Billings Clinic, said training doulas “has the potential to counter systemic barriers that disproportionately impact our tribal communities and improve overall community health.”

Twelve states and Washington, D.C., have Medicaid coverage for doula care, according to the National Health Law Program. They are California, Florida, Maryland, , Michigan, Minnesota, Nevada, New Jersey, Oklahoma, Oregon, Rhode Island, and Virginia. Medicaid pays for about 41% of births in the U.S., according to the Centers for Disease Control and Prevention.

Jacqueline Carrizo, a doula assigned to Aquino through the Emme Coalition, played an important role in Aquino's recovery. Aquino said she couldn't have imagined going through such a “dark time alone.” With Carrizo's support, “I could make it,” she said.

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Genetic and environmental factors, or a past mental health disorder, can increase the risk of depression or anxiety during pregnancy. But mood disorders can happen to anyone.

Teresa Martinez, 30, of Price, Utah, had struggled with anxiety and infertility for years before she conceived her first child. The joy and relief of giving birth to her son in 2012 were short-lived.

Without warning, “a dark cloud came over me,” she said.

Martinez was afraid to tell her husband. “As a woman, you feel so much pressure and you don't want that stigma of not being a good mom,” she said.

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In recent years, programs around the country have started to help recognize mothers' mood disorders and learn how to help them before any harm is done.

One of the most successful is the Massachusetts Child Psychiatry Access Program for Moms, which began a decade ago and has since spread to 29 states. The program, supported by federal and state funding, provides tools and training for physicians and other providers to screen and identify disorders, triage , and offer treatment options.

But the expansion of maternal mental health programs is taking place amid sparse resources in much of rural America. Many programs across the country have run out of money.

The federal task force proposed that fund and create consultation programs similar to the one in Massachusetts, but not to replace the ones already in place, said Burkhard.

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In April, Missouri became the latest state to adopt the Massachusetts model. Women on Medicaid in Missouri are 10 times as likely to die within one year of pregnancy as those with private insurance. From 2018 through 2020, an average of 70 Missouri women died each year while pregnant or within one year of giving birth, according to state government statistics.

Wendy Ell, executive director of the Maternal Health Access Project in Missouri, called her service a “lifesaving resource” that is free and easy to access for any provider in the state who sees patients in the perinatal period.

About 50 health care providers have signed up for Ell's program since it began. Within 30 minutes of a request, the providers can consult over the phone with one of three perinatal psychiatrists. But while the doctors can get help from the psychiatrists, mental health resources for patients are not as readily available.

The task force called for federal funding to train more mental health providers and place them in high-need areas like Missouri. The task force also recommended training and certifying a more diverse workforce of community mental health workers, patient navigators, doulas, and peer support specialists in areas where they are most needed.

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A new voluntary curriculum in reproductive psychiatry is designed to help psychiatry residents, fellows, and mental health practitioners who may have little or no training or education about the management of psychiatric illness in the perinatal period. A small study found that the curriculum significantly improved psychiatrists' ability to treat perinatal women with mental illness, said Standeven, who contributed to the training program and is one of the study's authors.

Nancy Byatt, a perinatal psychiatrist at the University of Massachusetts Chan School of Medicine who led the launch of the Massachusetts Child Psychiatry Access Program for Moms in 2014, said there is still a lot of work to do.

“I think that the most important thing is that we have made a lot of progress and, in that sense, I am kind of hopeful,” Byatt said.

Cheryl Platzman Weinstock's reporting is supported by a grant from the National Institute for Health Care Management Foundation.

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By: Cheryl Platzman Weinstock
Title: Federal Panel Prescribes New Mental Health Strategy To Curb Maternal Deaths
Sourced From: kffhealthnews.org/news/article/postpartum-mental-health-federal-strategy-maternal-deaths/
Published Date: Thu, 16 May 2024 09:00:00 +0000

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