Parents and advocates for kids' mental health say that the ER can't provide appropriate care and that the warehousing of kids in crisis can become an emergency itself.
This article was published on Friday, June 25, 2021 in Kaiser Health News.
One evening in late March, a mom called 911. Her daughter, she said, was threatening to kill herself. EMTs arrived at the home north of Boston, helped calm the 13-year-old, and took her to an emergency room.
Melinda, like a growing number of children during the COVID-19 pandemic, had become increasingly anxious and depressed as she spent more time away from in-person contact at school, church and her singing lessons.
KHN and NPR have agreed to use only the first names of this teenager and her mother, Pam, to avoid having this story trail the family online. Right now in Massachusetts and in many parts of the U.S. and the world, demand for mental healthcare overwhelms supply, creating bottlenecks like Melinda's 17-day saga.
Emergency rooms are not typically places you check in for the night. If you break an arm, it gets set, and you leave. If you have a heart attack, you won't wait long for a hospital bed. But sometimes if your brain is not well, and you end up in an ER, there's a good chance you will get stuck there. Parents and advocates for kids' mental health say that the ER can't provide appropriate care and that the warehousing of kids in crisis can become an emergency itself.
What's known as emergency room boarding of psychiatric patients has risen between 200% and 400% monthly in Massachusetts during the pandemic. The CDC says emergency room visits after suicide attempts among teen girls were up 51% earlier this year as compared with 2019. There are no current nationwide mental health boarding numbers.
"This is really unlike anything we've ever seen before, and it doesn't show any signs of abating," said Lisa Lambert, executive director of Parent/Professional Advocacy League, which pushes for more mental healthcare for children.
Melinda spent her first 10 days in a hospital lecture hall with a dozen other children, on gurneys, separated by curtains because the emergency room had run out of space. At one point, Melinda, who was overwhelmed, tried to escape, was restrained, injected with drugs to calm her and moved to a small, windowless room.
Day 12: Cameras Track Her Movements
I met Melinda in early April, on her 12th day in the ER. Doctors were keeping her there because they were concerned she would harm herself if she left. Many parents report spending weeks with their children in hospital hallways or overflow rooms, in various states of distress, because hospital psychiatric units are full. While demand is up, supply is down. COVID precautions turned double rooms into singles or psych units into COVID units. While those precautions are beginning to ease, demand for beds is not.
Inside her small room, Melinda was disturbed by cameras that tracked her movement, and security guards in the hallways who were there, in part, for her safety.
"It's kinda like prison," she said. "It feels like I'm desperate for help."
"Desperate" is a word both Melinda and Pam use often to describe the prolonged wait for care in a place that feels alien.
"We occasionally hear screaming, yelling, monitors beeping," said Pam. "Even as the parent — it's very scary."
But this experience is not new. This was Melinda's fourth trip to a hospital emergency room since late November. Pam said Melinda spiraled downward after a falling out with a close family member last summer. She has therapists, but some of them changed during the pandemic, the visits were virtual, and she hasn't made good connections between crises.
"Each time, it's the same routine," Pam said. Melinda is rushed to an ER, where she waits. She's admitted to a psych hospital for a week to 10 days and goes home. "It's not enough time."
Pam said each facility has suggested a different diagnosis and adjusted Melinda's medication.
"We've never really gotten a good, true diagnosis as to what's going on with her," Pam said. "She's out of control; she feels out of control in her own skin."
Melinda waited six months for a neuropsychiatric exam to help clarify what she needs. She finally had the exam in May, after being discharged from the psychiatric hospital, but still doesn't have the results. Some psychiatrists say observing a patient's behavior is often a better way to reach a diagnosis.
Lambert, the mental health advocate, said there are delays for every type of psychiatric care — both residential and outpatient.
"We've heard of waits as long as five weeks or more for outpatient therapy," Lambert said. "If your child is saying they don't want to live or don't want to ever get out of bed again, you don't want to wait five weeks."
Day 13: 'The Longer She's Here, the More She's Going to Decline'
As her stay dragged on, Melinda bounced from manic highs to deep emotional lows. The emergency room is a holding area; it isn't set up to offer treatment or psychiatric therapy.
On this day Melinda was agitated.
"I just really want to get out of here," she said in an audio diary she was keeping at the time for this story. "I feel kind of helpless. I miss my pets and my bed and real food." She'd had a panic attack the night before and had to be sedated. Her mom, Pam, wasn't there.
"The longer she's here, the more she's going to decline," Pam recorded in her own audio diary. "She has self-harmed three times since she's been here."
The hospital and its parent network, Beth Israel Lahey Health, declined requests to speak about Melinda's care. But Dr. Nalan Ward, the network's chief medical officer for behavioral health services, hosts a daily call to discuss the best place for inpatient psychiatric treatment for each patient. Some may have unique medical or insurance constraints, she said. Many insurers require prior approval before they'll agree to pay for a placement, and that, too, can add delays.
"It takes a case-by-case approach," said Ward. "It's really hands-on."
Day 14: Increasingly Isolated From School and Friends
For Melinda, the issue keeping her from moving out of the ER and into an effective treatment program could have been her behavior. Pam was told her daughter may be harder to place than children who don't act out. Hospitals equipped to provide inpatient mental healthcare say they look for patients who will be a good fit for their programs and participants. Melinda's chart included the attempted escape as well as some fights while she was housed in the lecture hall.
"She's having behaviors because she has a mental illness, which they're supposed to help her with," Pam said, "but yet they're saying no to her because she's having behaviors."
Secluding Melinda in the ER didn't help, Pam said. "She's, at times, unrecognizable to me. She just is so sure that she's never going to get better."
Melinda described feeling increasingly isolated. She lost touch with friends and most family members. She'd stopped doing schoolwork weeks earlier. The noise and commotion of a 24/7 ER was getting to Melinda.
"I'm not sleeping well," she noted in her diary. "It's tough here. I keep waking up in the middle of the night."
Day 15: Mom Retreats to Her Car to Cry
Boarding is difficult for parents as well. Pam works two jobs, but she visited Melinda every day, bringing a change of clothes, a new book or something special to eat.
"Some days I sit and cry before I get out of the car, just to get it out of my system, so I don't cry in front of her," Pam said in her diary entry that day.
Some hospitals say they can't afford to care for patients with acute mental health problems because insurance reimbursements don't cover costs. Massachusetts is spending $40 million this year on financial incentives to create more inpatient psychiatric care. But emergency rooms are still flooded with psychiatric patients who are in limbo, boarding there.
Day 16: 'I Wish Someone Would Just Understand Me'
"I never thought we'd be here this long," said Pam.
At the nurses' station, Pam was told it could be two more weeks before there would be an opening at an appropriate hospital.
In Massachusetts, Gov. Charlie Baker's administration says it has a plan that will keep children out of ERs and reduce the need for inpatient care by providing more preventive and community-based services. Parents and providers say they are hopeful but question whether there are enough counselors and psychiatrists to staff proposed community clinics, therapy programs and more psychiatric hospital beds.
Meanwhile, in the ER, Melinda was growing listless.
"Life is really hard because things that should be easy for everyone are just hard for me," she said. "When I ask for help, sometimes I picture going to the hospital. Other times I wish someone would just understand me."
Then, in the late evening on Day 16, the family got word that Melinda's wait would soon end.
Day 17: Limbo Ends and Real Treatment Begins
On Day 17, Melinda was taken by ambulance to a Boston-area hospital that had added child psychiatric beds during the pandemic. She was lucky to get a spot. The day she arrived, there were 50 to 60 children on the waiting list.
"That's dramatically higher" than before the pandemic, said Dr. Linsey Koruthu, one of Melinda's doctors and a pediatric psychiatrist at Cambridge Health Alliance. "About double what we would have seen in 2019."
Doctors there adjusted Melinda's medications. She met with a psychiatrist and social worker daily and had group therapy and time for schoolwork, yoga and pet therapy. Hospital staff members met with Melinda and her family. She stayed two weeks, a bit longer than the average stay.
Doctors recommended that Melinda move from inpatient care to a community-based residential treatment program — a bridge between being in the hospital and returning home. But those programs were full and had weeks-long delays. So, Melinda went straight home.
She now has three therapists helping her make the transition and use what she's learned. And as COVID restrictions have begun to ease, some sessions are in person — which Koruthu said should be more effective for Melinda.
Pam said the transition has been rough. Police came to the house once and suggested Melinda go to an ER, but she was able to calm down before it came to that. Melinda has developed an eating disorder.
The first available appointment with a specialist is in August. But, by mid-June, Melinda was able to graduate from middle school, after finishing a backlog of schoolwork.
"If you had asked me two months ago, I would have said I don't think she'll make it," Pam said. "We're getting there."
If you or someone you know are in mental health crisis or may be considering suicide, contact the National Suicide Prevention Lifeline at 1-800-273-8255 (en Español: 1-888-628-9454; for the deaf and hard of hearing: Dial 711 then 1-800-273-8255) or the Crisis Text Line by texting HOME to 741741.
This story is part of a partnership that includes WBUR, NPR and KHN.
A social media post circulating on Facebook and Instagram claims that the World Health Organization recently flipped its policy recommendation about children receiving a COVID-19 vaccine.
"The WORLD HEALTH ORGANIZATION recently reversed its stance on children getting the COVID vaccine. Sorry to all those dumb parents who rushed out to get their 12 year olds vaccinated. Oops you injected your kids with poison and it's no longer recommended. Personally no one should but at least save the children!," the post reads.
A photo posted alongside the caption is a screenshot from the World Health Organization's website, with the words circled in red: "Children should not be vaccinated for the moment."
The screen grab also shows the following paragraph with the words underlined in red: "There is not yet enough evidence on the use of vaccines against COVID-19 in children to make recommendations for children to be vaccinated against COVID-19."
The post was flagged as part of Facebook's efforts to combat false news and misinformation on its news feed. (Read more about PolitiFact's partnership with Facebook.)
Others have been spreading similar messages on social media about this alleged change in the WHO's stance on COVID vaccines for children, including Rep. Marjorie Taylor Greene (R-Ga.). The topic also dominated vaccine-related Google searches on June 22, according to Google Trends data.
Mining the Webpage
The screen grab posted on Instagram was indeed taken directly from the WHO's webpage and the text had not been altered. The purpose of that specific webpage is to give the public advice on who should receive a COVID vaccine.
The webpage stated, "Children should not be vaccinated for the moment."
However, this was not new guidance from the WHO. The organization first posted this guidance on April 8, according to our analysis of the webpage through the Wayback Machine, an internet archive service, and First Draft, a nonprofit group that analyzes misinformation on the web.
When we reached out to the WHO on June 22 to ask officials about the webpage's wording and whether they had reversed their stance, a spokesperson sent the following statement:
"Children and adolescents tend to have milder disease compared to adults, so unless they are part of a group at higher risk of severe COVID-19, it is less urgent to vaccinate them than older people, those with chronic health conditions and health workers.
"More evidence is needed on the use of the different COVID-19 vaccines in children to be able to make general recommendations on vaccinating children against COVID-19.
"WHO's Strategic Advisory Group of Experts (SAGE) has concluded that the Pfizer/BioNTech vaccine is suitable for use by people aged 12 years and above. Children aged between 12 and 15 who are at high risk may be offered this vaccine alongside other priority groups. Vaccine trials for children are ongoing and WHO will update its recommendations when the evidence or epidemiological situation warrants a change in policy.
"It's important for children to continue to have the recommended childhood vaccines."
The WHO updated its webpage June 23, replacing the language "children should not be vaccinated for the moment" with the precise language sent in the statement above.
Jen Kates, director of global health and HIV policy at KFF, said she reached out to a WHO contact who told her this updated language was added to reflect the latest advice from the WHO's June 15 meeting of the Strategic Advisory Group of Experts, which said the Pfizer-BioNTech vaccine can be given to those age 12 and older.
The WHO's Stance
The WHO's chief scientist, Dr. Soumya Swaminathan, explained in a June 11 video why the WHO was not prioritizing COVID vaccines for children.
"So, the reason that today, in June 2021, WHO is saying that vaccinating children is not a priority is because children, though they can get infected with COVID-19 and they can transmit the infection to others, they are at much lower risk of getting severe disease compared to older adults," Swaminathan said. "And that is why, when we started prioritizing people who should get the vaccination when there are limited supplies of vaccines available in the country, we recommend that we start with healthcare workers and front-line workers who are at very high risk of exposure to the infection. Also elderly, the people who have underlying illnesses that make them at high risk to develop severe disease."
Dr. Rachel Vreeman, director of the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai Hospital, confirmed that the statements on the WHO's webpage were focused on whom to prioritize most urgently in getting COVID vaccines.
"They are not saying that children should not be vaccinated against COVID or that the vaccines currently approved for use in children 12 years old and above are not safe," Vreeman wrote in an email. "The WHO is saying that the global priority should be on getting more adults vaccinated, since older adults are at the highest risk of serious complications and death from COVID-19."
"In the face of massive inequities in who has access to COVID-19 vaccines globally, the WHO advises that those at highest risk — older adults — be prioritized first," Vreeman wrote.
Recommendations of COVID Vaccines for Children in the U.S.
It's also important to consider that supplies of the COVID vaccines are no longer limited in the U.S., as they are in other parts of the world. So, having to ration the vaccine for only healthcare workers or those who are older or at higher risk for severe disease does not apply here. Remember, the WHO is a global organization, so its recommendations need to be applicable worldwide.
In the U.S., the Centers for Disease Control and Prevention recommends that everyone age 12 and over receive a COVID vaccine. The Pfizer-BioNTech vaccine has been authorized for emergency use in the U.S. in children ages 12 to 18 and adults of all ages.
"As a pediatrician in the United States, in a setting where the COVID-19 vaccine is widely available, I whole-heartedly recommend that children 12 years old and up receive the COVID-19 vaccination as soon as possible," Vreeman wrote in an email. "The data show that the vaccines are safe and effective for this age group, and we want to prevent the risks that COVID-19 does present to children."
Our Ruling
An Instagram post and other posts across social media falsely claimed that the WHO recently reversed its stance on children receiving a COVID vaccine because the vaccines were "poison" and would be dangerous for children.
The WHO first posted its guidance for children and COVID vaccinations on April 8. That guidance did include the wording, "Children should not be vaccinated for the moment." But that wording was a reflection of the WHO saying that children should not be prioritized for vaccinations over other groups because in many countries supplies of vaccine are limited and healthcare workers, front-line workers, the elderly and those with high-risk medical conditions should have first dibs.
There's no evidence the WHO "reversed" its position on childhood COVID vaccination in the way the viral social media posts allege. The WHO updated its guidance on June 23 to reflect a meeting of one of its scientific advisory groups, which said the Pfizer-BioNTech vaccine could be safely given to children 12 and up. But this came after those misleading posts first appeared.
Email interview with Dr. Rachel Vreeman, director of the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, June 22, 2021
Email interview with Jen Kates, director of global health and HIV policy at KFF, June 22, 2021
Email exchange with World Health Organization Media Relations, June 22, 2021
Millions of older adults are newly motivated to get online and participate in digital offerings after being shut inside, hoping to avoid the virus, for more than a year. But many need assistance and aren't sure where to get it.
Six months ago, Cindy Sanders, 68, bought a computer so she could learn how to email and have Zoom chats with her great-grandchildren.
It's still sitting in a box, unopened.
"I didn't know how to set it up or how to get help," said Sanders, who lives in Philadelphia and has been extremely careful during the coronavirus pandemic.
Like Sanders, millions of older adults are newly motivated to get online and participate in digital offerings after being shut inside, hoping to avoid the virus, for more than a year. But many need assistance and aren't sure where to get it.
A recent survey from AARP, conducted in September and October, highlights the quandary. It found that older adults boosted technology purchases during the pandemic but more than half (54%) said they needed a better grasp of the devices they'd acquired. Nearly 4 in 10 people (37%) admitted they weren't confident about using these technologies.
Sanders, a retired hospital operating room attendant, is among them. "Computers put the fear in me," she told me, "but this pandemic, it's made me realize I have to make a change and get over that."
With a daughter's help, Sanders plans to turn on her new computer and figure out how to use it by consulting materials from Generations on Line. Founded in 1999, the Philadelphia organization specializes in teaching older adults about digital devices and navigating the internet. Sanders recently discovered it through a local publication for seniors.
Before the pandemic, Generations on Line provided free in-person training sessions at senior centers, public housing complexes, libraries and retirement centers. When those programs shut down, it created an online curriculum for smartphones and tablets (www.generationsonline.org/apps) and new tutorials on Zoom and telehealth as well as a "family coaching kit" to help older adults with technology. All are free and available to people across the country.
Demand for Generations on Line's services rose tenfold during the pandemic as many older adults became dangerously isolated and cut off from needed services.
Those who had digital devices and knew how to use them could do all kinds of activities online: connect with family and friends, shop for groceries, order prescriptions, take classes, participate in telehealth sessions and make appointments to get COVID vaccines. Those without were often at a loss — with potentially serious consequences.
"I have never described my work as a matter of life or death before," said Angela Siefer, executive director of the National Digital Inclusion Alliance, an advocacy group for expanding broadband access. "But that's what happened during the pandemic, especially when it came to vaccines."
Other organizations specializing in digital literacy for older adults are similarly seeing a surge of interest. Cyber-Seniors, which pairs older adults with high school or college students who serve as technology mentors, has trained more than 10,000 seniors since April 2020 — three times the average of the past several years. (Services are free and grants and partnerships with government agencies and nonprofit organizations supply funding, as is true for several of the organizations discussed here.)
Older adults using digital devices for the first time can call 1-844-217-3057 and be coached over the phone until they're comfortable pursuing online training. "A lot of organizations are giving out tablets to seniors, which is fantastic, but they don't even know the basics, and that's where we come in," said Brenda Rusnak, Cyber-Seniors' managing director. One-on-one coaching is also available.
Lyla Panichas, 78, who lives in Pawtucket, Rhode Island, got an iPad from Rhode Island's digiAGE program three months ago — among many local technology programs for older adults started during the pandemic. She is getting help from the University of Rhode Island's Cyber-Seniors program, which plans to offer digital training to 200 digiAGE participants in communities hardest hit by COVID-19 by the end of this year.
"The first time my tutor called me, I mean, the kids rattle things off so fast. I said, Wait a minute. You have a little old lady here. Let me keep up with you," Panichas said. "I couldn't keep up and I ended up crying."
Panichas persisted, however, and when her tutor called again the next week she began "being able to grasp things." Now, she plays games online, streams movies and has Zoom get-togethers with her son, in Arizona, and her sister, in Virginia. "It's kind of lifted my fears of being isolated," she told me.
OATS (Older Adults Technology Services) is set to expand the reach of its digital literacy programs significantly after a recent affiliation with AARP. It runs a national hotline for people seeking technical support, 1-920-666-1959, and operates Senior Planet technology training centers in six cities (New York; Denver; Rockville, Maryland; Plattsburgh, New York; San Antonio, Texas; and Palo Alto, California). All in-person classes converted to digital programming once the pandemic closed down much of the country.
Germaine St. John, 86, a former mayor of Laramie, Wyoming, found an online community of seniors and made dear friends after signing up with Senior Planet Colorado during the pandemic. "I have a great support system here in Laramie, but I was very cautious about going out because I was in the over-80 group," she told me. "I don't know what I would have done without these activities."
Older adults anywhere in the country can take Senior Planet virtual classes for free. (A weekly schedule is available at https://seniorplanet.org/get-involved/online/.) Through its AARP partnership, OATS is offering another set of popular classes at AARP's Virtual Community Center. Tens of thousands of older adults now participate.
An immediate priority is to educate older adults about the government's new $32 billion Emergency Broadband Benefit for low-income individuals, which was funded by a coronavirus relief package and became available last month. That short-term program provides $50 monthly discounts on high-speed internet services and a one-time discount of up to $100 for the purchase of a computer or tablet. But the benefit isn't automatic. People must apply to get funding.
"We are calling on anybody over the age of 50 to try the internet and learn what the value can be," said Thomas Kamber, OATS' executive director. Nearly 22 million seniors don't have access to high-speed internet services, largely because these services are unaffordable or unavailable, according to a January report co-sponsored by OATS and the Humana Foundation, its Aging Connected partner.
Other new ventures are also helping older adults with technology. Candoo Tech, which launched in February 2019, works with seniors directly in 32 states as well as organizations such as libraries, senior centers and retirement centers.
For various fees, Candoo Tech provides technology training by phone or virtually, as-needed support from "tech concierges," advice about what technology to buy and help preparing devices for out-of-the-box use.
"You can give an older adult a device, access to the internet and amazing content, but if they don't have someone showing them what to do, it's going to sit there unused," said Liz Hamburg, Candoo's president and chief executive.
GetSetUp's model relies on older adults to teach skills to their peers in small, interactive classes. It started in February 2020 with a focus on tech training, realizing that "fear of technology" was preventing older adults from exploring "a whole world of experiences online," said Neil Dsouza, founder and chief executive.
For older adults who've never used digital devices, retired teachers serve as tech counselors over the phone. "Someone can call in [1-888-559-1614] and we'll walk them through the whole process of downloading an app, usually Zoom, and taking our classes," Dsouza said. GetSetUp is offering about 80 hours of virtual technology instruction each week.
For more information about tech training for older adults in your area, contact your local library, senior center, department on aging or Area Agency on Aging. Also, each state has a National Assistive Technology Act training center for older adults and people with disabilities. These centers let people borrow devices and offer advice about financial assistance. Some started collecting and distributing used smartphones, tablets and computers during the pandemic.
The pandemic has exacerbated the discrepancies already seen in the country between the wealth and health of Black and Hispanic Americans and those of white Americans.
This article was published on Thursday, June 24, 2021 in Kaiser Health News.
Although James Toussaint has never had COVID, the pandemic is taking a profound toll on his health.
First, the 57-year-old lost his job delivering parts for a New Orleans auto dealership in spring 2020, when the local economy shut down. Then, he fell behind on his rent. Last month, Toussaint was forced out of his apartment when his landlord — who refused to accept federally funded rental assistance — found a loophole in the federal ban on evictions.
Toussaint recently has had trouble controlling his blood pressure. Arthritis in his back and knees prevents him from lifting more than 20 pounds, a huge obstacle for a manual laborer.
Toussaint worries about what will happen when his pandemic unemployment benefits run out, which could happen as early as July 31.
"I've been homeless before," said Toussaint, who found a room to rent nearby after his eviction. "I don't want to be homeless again."
In particular, it will exacerbate the discrepancies already seen in the country between the wealth and health of Black and Hispanic Americans and those of white Americans. Indeed, new research published Wednesday in the BMJ shows just how wide that gap has grown. Life expectancy across the country plummeted by nearly two years from 2018 to 2020, the largest decline since 1943, when American troops were dying in World War II, according to the study. But while white Americans lost 1.36 years, Black Americans lost 3.25 years and Hispanic Americans lost 3.88 years. Given that life expectancy typically varies only by a month or two from year to year, losses of this magnitude are "pretty catastrophic," said Dr. Steven Woolf, a professor at Virginia Commonwealth University and lead author of the study.
Over the two years included in the study, the average loss of life expectancy in the U.S. was nearly nine times greater than the average in 16 other developed nations, whose residents can now expect to live 4.7 years longer than Americans. Compared with their peers in other countries, Americans died not only in greater numbers but at younger ages during this period.
The U.S. mortality rate spiked by nearly 23% in 2020, when there were roughly 522,000 more deaths than normally would be expected. Not all of these deaths were directly attributable to COVID-19. Fatal heart attacks and strokes both increased in 2020, at least partly fueled by delayed treatment or lack of access to medical care, Woolf said. More than 40% of Americans put off treatment during the early months of the pandemic, when hospitals were stretched thin and going into a medical facility seemed risky. Without prompt medical attention, heart attacks can cause congestive heart failure; delaying treatment of strokes raises the risk of long-term disability.
Much of the devastating public health impact during the pandemic can be chalked up to economic disparity. Although stock prices have recovered from last year's decline — and have recently hit all-time highs — many people are still suffering financially, especially Black and Hispanic Americans. In a February report, economic analysts at McKinsey & Co. predicted that, on average, Black and Hispanic workers won't recover their pre-pandemic employment and salaries until 2024. The lowest-paid workers and those with less than a high school education may not recover even by then.
And while federal and state relief programs have cushioned the impact of pandemic job losses, 11.3% of Americans today live in poverty — compared with 10.7% in January 2020. A federal eviction moratorium, which has helped an estimated 2.2 million people remain in their homes, expires June 30. Without protection from evictions, "millions of Americans could fall off the cliff," said Vangela Wade, president and CEO of the Mississippi Center for Justice, a nonprofit advocacy group.
Being evicted erodes a person's health in multiple ways. "Poverty causes a lot of cancer and chronic disease, and this pandemic has caused a lot more poverty," said Dr. Otis Brawley, a professor at Johns Hopkins University who studies health disparities. "The effect of this pandemic on chronic diseases, such as cardiovascular disease and diabetes, will be measured decades from now."
Twenty million adults recently have had trouble putting food on the table. The inability to afford healthy food — which is usually more expensive than salty, starchy fare — can cause both short-term and long-term harm. People with low incomes, for example, are more likely to be hospitalized for low blood sugar toward the end of the month, when they run out of money for food.
"Once the acute phase of this crisis has passed, we will face an enormous wave of death and disability," said Dr. Robert Califf, former commissioner of the Food and Drug Administration, who wrote about post-pandemic health risks in an April editorial in Circulation, a medical journal. "These will be the aftershocks of COVID."
Less Wealth, Poorer Health
American health was poor even before the pandemic, with 60% of the population suffering from a chronic condition, such as obesity, diabetes, high blood pressure or heart failure. These four conditions were associated with nearly two-thirds of hospitalizations from COVID, according to a February study in the Journal of the American Heart Association.
Deaths from some chronic diseases began rising in lower-income Americans in the 1990s, Woolf said. That trend was exacerbated by the Great Recession of 2007-09, which undermined the health not just of those who lost their homes or jobs but the population as a whole. Still, the Great Recession, and its resultant health effects, did not affect all Americans equally. Black people in the U.S. today control less wealth than they did before that recession, while the gap in financial security between Black and white Americans has widened, according to a Nonprofit Quarterly article published last year. And the unemployment rate among Black workers did not recover to pre-recession levels until 2016.
Researchers have developed a better understanding in recent years of how chronic stress — such as that caused by poverty, job loss and homelessness — leads to disease. Unrelenting stress causes inflammation that can damage blood vessels, the heart and other organs.
The stress of the pandemic also has led many people to smoke, drink and gain weight, increasing the risk of chronic disease. Fatal drug overdoses spiked 30% from October 2019 to October 2020.
Jennifer Drury, 40, has struggled with substance abuse, particularly prescription painkillers, since her 20s. She blames the isolation and stress of the pandemic for causing her to relapse — and leading several of her friends to fatally overdose.
"Idle time is not good for addiction," said Drury, who fell behind on rent and was evicted from her previous home. She said drug dealers are never far away, especially at the New Orleans motel where she and her husband are now staying. "Drug dealers don't care about pandemics."
Women Losing Ground
The American Rescue Plan, which provides $1.9 trillion in pandemic relief, was designed to help displaced workers and cut child poverty rates in half. The actual benefits of the law may prove less sweeping.
Many women say they would like to return to work but have no one to take care of their children. Nearly half of child care centers have closed and others have reduced the number of children they serve.
The Federal Reserve Bank of Minneapolis concluded that "economic recovery depends on child care availability." A March report from the National Women's Law Center estimates "women have lost a generation of labor force participation gains," which could leave them and their children financially disadvantaged for years.
Ruth Bermudez is one of millions of women who have left the workforce in the past year. Bermudez, who was laid off from her job as a behavioral health caseworker in New Orleans last year, said her child care needs have prevented her from finding work. The care of her 6-year-old daughter became her full-time job after the pandemic closed schools.
Although her daughter has returned to class, Bermudez said school shutdowns due to COVID outbreaks have been frequent and unpredictable.
"I had to be the teacher, the lunch lady, the school bus driver, all at one time," said Bermudez, 27. "It is exhausting."
Life-Altering Evictions
James Toussaint had just two weeks to find a new place to live after a judge ordered him evicted. His family was unable to take him in.
"I've got family, but everybody has their own issues and problems," said Toussaint, who had to throw away all his clothes and furniture because they had become infested with bedbugs. "Everyone is trying their best to help themselves."
Toussaint is now renting a room in a boarding house with no kitchen and a shared bathroom for $160 a week. He's had to buy cleaning supplies with his own money in order to sanitize the bathroom, which he said is often too dirty to use.
Sharing communal space is often unsanitary and increases the risk of being exposed to the coronavirus, said Emily Benfer, a visiting professor at Wake Forest University School of Law. Even moving in with family poses risks, she said, because it's impossible to isolate or quarantine in crowded homes.
Benfer co-wrote a November study that found COVID infection rates grew twice as high in states that lifted moratoriums on evictions, compared with states that continued to ban them. About 14% of tenants have fallen behind on rent — double the rate before the pandemic.
Toussaint's annual lease expired during the pandemic, leaving him to rent on a month-to-month basis. While some states require landlords to show "just cause" for eviction, Louisiana landlords can evict tenants for any reason once their annual lease has expired.
Property owners have filed for more than 378,000 evictions during the pandemic in just the five states and 29 cities tracked by Princeton University's Eviction Lab. A growing body of evidence shows that eviction is toxic to health, causing immediate and long-term damage that increases the risk of death. Studies show that evicted people are more likely to be in poor general health or have mental health concerns even years later.
"This singular event alters the course of one's life for the worse," Benfer said. "If we don't intervene" to prevent mass evictions when the moratorium ends, "it will be catastrophic for generations to come."
Eviction's harms can be measured at every stage of life:
Evicted adults report worse mental health and are more likely to be hospitalized for a mental health crisis, studies show. They also have higher mortality rates from suicide. Although the causes of addiction are complex, research shows that counties with higher eviction rates have significantly higher rates of drug- and alcohol-related deaths.
People who are evicted often move into substandard housing in neighborhoods with higher crime rates. These homes are sometimes plagued by mold and roaches, lack sufficient heating, or have plumbing that doesn't work. Landlords have no incentive to make repairs for tenants who are behind on their rent, Benfer said. In fact, tenants who request repairs or report safety hazards risk eviction.
Although middle-class Americans take their kitchens for granted — and rely on them to cook healthful meals — more than 1 million homes lack complete kitchens, according to the U.S. Census Bureau.
New Orleans doesn't require that rental units include stoves, said Hannah Adams, also a lawyer with Southeast Louisiana Legal Services. Toussaint's new room is equipped with a microwave and small refrigerator, but no sink, oven or stove. He washes dinner dishes in the bathroom. His landlord doesn't allow residents to have electric hot plates, so most of his meals involve cold cereal, deli sandwiches or meals he can heat in the microwave. His doctor has urged Toussaint, who is borderline diabetic, to lose weight, eat less salt and starch, and stop smoking.
Toussaint, who lived on the street for two years, said he's determined not to return there. He hopes to apply for disability insurance, which would provide him with an income if his arthritis prevents him from finding steady work.
Woolf said he hopes Americans won't forget about the suffering of people like Toussaint as cases of COVID decline. "My worry is that people will feel the crisis is behind us and it's all good," Woolf said. His research connecting four decades of declining economic opportunity with falling life expectancy shows "we are in really big trouble, and that was true before we knew a pandemic was coming."
The pandemic doesn't have to doom a generation of Americans to disease and early death, said Dr. Richard Besser, president and CEO of the Robert Wood Johnson Foundation. By addressing issues such as poverty, racial inequality and the lack of affordable housing, the country can improve American health and reverse the trends that caused communities of color to suffer. "How the pandemic will affect people's future health depends on what we do coming out of this," Besser said. "It will take an intentional effort to make up for the losses that have occurred over the past year."
Biden's efforts — which have been largely overshadowed by other economic and health initiatives — represent an abrupt reversal of the Trump administration's moves to scale back the safety-net program.
This article was published on Thursday, June 24, 2021 in Kaiser Health News.
The Biden administration is quietly engineering a series of expansions to Medicaid that may bolster protections for millions of low-income Americans and bring more people into the program.
Biden's efforts — which have been largely overshadowed by other economic and health initiatives — represent an abrupt reversal of the Trump administration's moves to scale back the safety-net program.
The moves, some of which were funded by the COVID relief bill that passed in March, could further boost Medicaid enrollment — which the pandemic pushed to a record 80.5 million in January, including those served by the related Children's Health Insurance Program. That's up from 70 million before the COVID crisis began. New mothers, inmates and undocumented immigrants are among those who could gain coverage. At the same time, the Biden administration is opening the door to new Medicaid-funded services such as food and housing that the government insurance plan hasn't traditionally offered.
"There is a paradigm change underway," said Jennifer Langer Jacobs, Medicaid director in New Jersey, one of a growing number of states trying to expand home-based Medicaid services to keep enrollees out of nursing homes and other institutions.
"We've had discussions at the federal level in the last 90 days that are completely different from where we've ever been before," Langer Jacobs said.
Taken together, the Medicaid moves represent some of the most substantive shifts in federal health policy undertaken by the new administration.
"They are taking very bold action," said Rutgers University political scientist Frank Thompson, an expert on Medicaid history, noting, in particular, the administration's swift reversal of Trump policies. "There really isn't a precedent."
The Biden administration seems unlikely to achieve what remains the holy grail for Medicaid advocates: getting 12 holdout states, including Texas and Florida, to expand Medicaid coverage to low-income working-age adults through the Affordable Care Act.
And while some recent expansions — including for new mothers — were funded by close to $20 billion in new Medicaid funding in the COVID relief bill Biden signed in March, much of that new money will stop in a few years unless Congress appropriates additional money.
The White House strategy has risks. Medicaid, which swelled after enactment of the 2010 health law, has expanded further during the economic downturn caused by the pandemic. The programs now cost taxpayers more than $600 billion a year. And although the federal government will cover most of the cost of the Biden-backed expansions, surging Medicaid spending is a growing burden on state budgets.
The costs of expansion are a frequent target of conservative critics, including Trump officials like Seema Verma, the former administrator of the Centers for Medicare & Medicaid Services, who frequently argued for enrollment restrictions and derided Medicaid as low-quality coverage.
But even less partisan experts warn that Medicaid, which was created to provide medical care to low-income Americans, can't make up for all the inadequacies in government housing, food and education programs.
"Focusing on the social drivers of health … is critically important in improving the health and well-being of Medicaid beneficiaries. But that doesn't mean that Medicaid can or should be responsible for paying for all of those services," said Matt Salo, head of the National Association of Medicaid Directors, noting that the program's financing "is simply not capable of sustaining those investments."
However, after four years of Trump administration efforts to scale back coverage, Biden and his appointees appear intent on not only restoring federal support for Medicaid, but also boosting the program's reach.
"I think what we learned during the repeal-and-replace debate is just how much people in this country care about the Medicaid program and how it's a lifeline to millions," Biden's new Medicare and Medicaid administrator, Chiquita Brooks-LaSure, told KHN, calling the program a "backbone to our country."
The Biden administration has already withdrawn permission the Trump administration had granted Arkansas and New Hampshire to place work requirements on some Medicaid enrollees.
In April, Biden blocked a multibillion-dollar Trump administration initiative to prop up Texas hospitals that care for uninsured patients, a policy that many critics said effectively discouraged Texas from expanding Medicaid coverage through the Affordable Care Act, often called Obamacare. Texas has the highest uninsured rate in the nation.
The moves have drawn criticism from Republicans, some of whom accuse the new administration of trampling states' rights to run their Medicaid programs as they choose.
"Biden is reasserting a larger federal role and not deferring to states," said Josh Archambault, a senior fellow at the conservative Foundation for Government Accountability.
But Biden's early initiatives have been widely hailed by patient advocates, public health experts and state officials in many blue states.
"It's a breath of fresh air," said Kim Bimestefer, head of Colorado's Department of Healthcare Policy and Financing.
Chuck Ingoglia, head of the National Council for Mental Wellbeing, said: "To be in an environment where people are talking about expanding healthcare access has made an enormous difference."
Mounting evidence shows that expanded Medicaid coverage improves enrollees' health, as surveys and mortality data in recent years have identified greater health improvements in states that expanded Medicaid through the 2010 health law versus states that did not.
In addition to removing Medicaid restrictions imposed by Trump administration officials, the Biden administration has backed a series of expansions to broaden eligibility and add services enrollees can receive.
Biden supported a provision in the COVID relief bill that gives states the option to extend Medicaid to new mothers for up to a year after they give birth. Many experts say such coverage could help reduce the U.S. maternal mortality rate, which is far higher than rates in other wealthy nations.
Several states, including Illinois and New Jersey, had sought permission from the Trump administration for such expanded coverage, but their requests languished.
The COVID relief bill — which passed without Republican support — also provides additional Medicaid money to states to set up mobile crisis services for people facing mental health or substance use emergencies, further broadening Medicaid's reach.
And states will get billions more to expand so-called home and community-based services such as help with cooking, bathing and other basic activities that can prevent Medicaid enrollees from having to be admitted to expensive nursing homes or other institutions.
Perhaps the most far-reaching Medicaid expansions being considered by the Biden administration would push the government health plan into covering services not traditionally considered healthcare, such as housing.
This reflects an emerging consensus among health policy experts that investments in some non-medical services can ultimately save Medicaid money by keeping patients out of the hospital.
In recent years, Medicaid officials in red and blue states — including Arizona, California, Illinois, Maryland and Washington — have begun exploring ways to provide rental assistance to select Medicaid enrollees to prevent medical complications linked to homelessness.
The Trump administration took steps to support similar efforts, clearing Medicare Advantage health plans to offer some enrollees non-medical benefits such as food, housing aid and assistance with utilities.
But state officials across the country said the new administration has signaled more support for both expanding current home-based services and adding new ones.
That has made a big difference, said Kate McEvoy, who directs Connecticut's Medicaid program. "There was a lot of discussion in the Trump administration," she said, "but not the capital to do it."
Other states are looking to the new administration to back efforts to expand Medicaid to inmates with mental health conditions and drug addiction so they can connect more easily to treatment once released.
Kentucky health secretary Eric Friedlander said he is hopeful federal officials will sign off on his state's initiative.
Still other states, such as California, say they are getting a more receptive audience in Washington for proposals to expand coverage to immigrants who are in the country without authorization, a step public health experts say can help improve community health and slow the spread of communicable diseases.
"Covering all Californians is critical to our mission," said Jacey Cooper, director of California's Medicaid program, known as Medi-Cal. "We really feel like the new administration is helping us ensure that everyone has access."
The Trump administration moved to restrict even authorized immigrants' access to the healthcare safety net, including the "public charge" rule that allowed immigration authorities to deny green cards to applicants if they used public programs such as Medicaid. In March, Biden abandoned that rule.
KHN correspondent Julie Rovner contributed to this report.
Texas' refusal to expand Medicaid under the ACA, a shortage of healthcare options and the state's lax strategy toward the pandemic have contributed to a higher death rate at the border.
This article was published on Wednesday, June 23, 2021 in Kaiser Health News.
EL PASO, Texas — Alfredo "Freddy" Valles was an accomplished trumpeter and a beloved music teacher for nearly four decades at one of the city's poorest middle schools.
He was known for buying his students shoes and bow ties for their band concerts, his effortlessly positive demeanor and a suave personal style — "he looked like he stepped out of a different era, the 1950s," said his niece Ruby Montana.
While Valles was singular in life, his death at age 60 in February was part of a devastating statistic: He was one of thousands of deaths in Texas border counties — where coronavirus mortality rates far outpaced state and national averages.
In the state's border communities, including El Paso, not only did people die of COVID-19 at significantly higher rates than elsewhere, but people under age 65 were also more likely to die, according to a KHN-El Paso Matters analysis of COVID death data through January. More than 7,700 people died of COVID in the border area during that period.
In Texas, COVID death rates for border residents younger than 65 were nearly three times the national average for that age group and more than twice the state average. And those ages 18-49 were nearly four times more likely to die than those in the same age range across the U.S.
"This was like a perfect storm," said Heide Castañeda, an anthropology professor at the University of South Florida who studies the health of border residents. She said a higher-than-normal prevalence of underlying health issues combined with high uninsurance rates and flagging access to care likely made the pandemic even more lethal for those living along the border than elsewhere.
That pattern was not as stark in neighboring New Mexico. Border counties there recorded COVID death rates 41% lower than those in Texas, although the New Mexico areas were well above the national average as of January, the KHN-El Paso Matters analysis found. Texas border counties tallied 282 deaths per 100,000, compared with 166 per 100,000 in New Mexico.
That stark divide could be seen even when looking at neighboring El Paso County, Texas, and Doña Ana County, New Mexico. The death rate for residents under 65 was 70% higher in El Paso County.
Health experts said Texas' refusal to expand Medicaid under the Affordable Care Act, a shortage of healthcare options and the state's lax strategy toward the pandemic also contributed to a higher death rate at the border. Texas GOP leaders have opposed Medicaid expansion for a litany of economic and political reasons, though largely because they object to expanding the role or size of government.
"Having no Medicaid expansion and an area that is already underserved by primary care and preventive care set the stage for a serious situation," Castañeda said. "A lot of this is caused by state politics."
Texas was one of the first states to reopen following the nationwide coronavirus shutdown in March and April last year. Last June — even as cases were rising — Gov. Greg Abbott allowed all businesses, including restaurants, to operate at up to 50% capacity, with limited exceptions. And he refused to put any capacity restrictions on churches and other religious facilities or let local governments impose mask requirements.
In November, Texas Attorney General Ken Paxton filed an injunction to stop a lockdown order implemented by the El Paso county judge, the top administrative officer, at a time when El Paso hospitals were so overwhelmed with COVID patients that 10 mobile morgues had to be set up at an area hospital to accommodate the dead.
Unlike Texas, New Mexico expanded Medicaid under the ACA and, as a result, has a much lower uninsured rate than Texas for people under age 65 — 12% compared with Texas' 21%, according to Census figures. And New Mexico had aggressive rules for face masks and public gatherings. Still, that didn't spare New Mexico from the crisis. Outbreaks in and around the Navajo reservation hit hard. Overall, its state death rate exceeded the state rate for Texas, but along the border New Mexico's rates were lower in all age groups.
For some border families, the immense toll of the pandemic meant multiple deaths among loved ones. Ruby Montana lost not only her uncle to COVID in recent months, but also her cousin Julieta "Julie" Apodaca, a former elementary school teacher and speech therapist.
Montana said Valles' death surprised the family. He had been teaching remotely at Guillen Middle School in El Paso's Segundo Barrio neighborhood, an area known as "the other Ellis Island" because of its adjacency to the border and its history as an enclave for Mexican immigrant families.
When Valles first got sick with COVID in December, Montana and the family were not worried, not only because he had no preexisting health conditions, but also because they knew his lungs were strong from practicing his trumpet daily over the course of decades.
In early January, he went to an urgent care center after his condition deteriorated. He had pneumonia and was told to go straight to the emergency room.
"When I took him to the [hospital], I dropped him off and went to go park," said his wife, Elvira. But when she returned, she was not allowed inside. "I never saw him again," she said.
Valles, a father of three, had been teaching one of his three grandchildren, 5-year-old Aliq Valles, to play the trumpet.
They "were joined at the hip," Montana said. "That part has been really hard to deal with too. [Aliq] should have a whole lifetime with his grandpa."
Hispanic adults are more than twice as likely to die of COVID as white adults, according to the Centers for Disease Control and Prevention. In Texas, Hispanic residents died of COVID at a rate four times as high as that of non-Hispanic white people, according to a December analysis by The Dallas Morning News.
Ninety percent of residents under 65 in Texas border counties are Hispanic, compared with 37% in the rest of the state. Latinos have high rates of chronic conditions like diabetes and obesity, which increases their risks of COVID complications, health experts say.
Because they were more likely to die of COVID at earlier ages, Latinos are losing the most years of potential life among all racial and ethnic groups, said Coda Rayo-Garza, an advocate for policies to aid Hispanic populations and a professor of political science at the University of Texas-San Antonio.
Expanding Medicaid, she said, would have aided the border communities in their fight against COVID, as they have some of the highest rates of residents without health coverage in the state.
"There has been a disinvestment in border areas long before that led to this outcome that you're finding," she said. "The legislature did not end up passing Medicaid expansion, which would have largely benefited border towns."
The higher death rates among border communities are "unfortunately not surprising," said Rep. Veronica Escobar (D-El Paso).
"It's exactly what we warned about," Escobar said. "People in Texas died at disproportionate rates because of a dereliction on behalf of the governor. He chose not to govern … and the results are deadly."
Abbott spokesperson Renae Eze said the governor mourns every life lost to COVID.
"Throughout the entire pandemic, the state of Texas has worked diligently with local officials to quickly provide the resources needed to combat COVID and keep Texans safe," she said.
Ernesto Castañeda, a sociology professor at American University in Washington, D.C., who is not related to Heide Castañeda, said structural racism is integrally linked to poor health outcomes in border communities. Generations of institutional discrimination — through policing, educational and job opportunities, and healthcare — worsens the severity of crisis events for people of color, he explained.
"We knew it was going to be bad in El Paso," Ernesto Castañeda said. "El Paso has relatively low socioeconomic status, relatively low education levels, high levels of diabetes and overweight [population]."
In some Texas counties along the border more than a third of workers are uninsured, according to an analysis by Georgetown University's Center for Children and Families.
"The border is a very troubled area in terms of high uninsured rates, and we see all of those are folks put at increased risk by the pandemic," said Joan Alker, director of the center.
In addition, because of a shortage of health workers along much of the border, the pandemic surge was all the deadlier, said Dr. Ogechika Alozie, an El Paso specialist in infectious diseases.
"When you layer on top not having enough medical personnel with a sicker-on-average population, this is really what you find happens, unfortunately," he said.
The federal government has designated the entire Texas border region as both a health professional shortage area and a medically underserved area.
Jagdish Khubchandani, a professor of public health at New Mexico State University in Las Cruces, about 40 miles northwest of El Paso, said the two cities were like night and day in their response to the crisis.
"Restrictions were far more rigid in New Mexico," he said. "It almost felt like two different countries."
Manny Sanchez, a commissioner in Doña Ana County, credits the lower death rates in New Mexico to state and local officials' united message to residents about COVID and the need to wear masks and maintain physical distance. "I would like to think we made a difference in saving lives," Sanchez said.
But, because containing a virus requires community buy-in, even El Paso residents who understood the risks were susceptible to COVID. Julie Apodaca, who had recently retired, had been especially careful, in part because her asthma and diabetes put her at increased risk. As the primary caregiver for her elderly mother, she was likely exposed to the virus through one of the nurse caretakers who came to her mother's home and later tested positive, said her sister Ana Apodaca.
Julie Apodaca had registered for a COVID vaccine in December as soon as it was available but had not been able to get an appointment for a shot by the time she fell ill.
Montana found out that Apodaca had been hospitalized the day after her uncle died. One month later, and after 16 days on a ventilator, she too died on March 13.
She was 56.
This story was done in partnership with El Paso Matters, a member-supported, nonpartisan media organization that focuses on in-depth and investigative reporting about El Paso, Texas, Ciudad Juárez across the border in Mexico, and neighboring communities.
Methodology
To analyze COVID deaths rates along the border with Mexico, KHN and El Paso Matters requested COVID-related death counts by age group and county from Texas, New Mexico, California and Arizona. California and Arizona were unable to fulfill the requests. The Texas Department of State Health Services and the New Mexico Department of Health provided death counts as of Jan. 31, 2021.
Texas' data included totals by age group for border counties as a group and for the state with no suppression of data. New Mexico provided data for individual counties, and small numbers were suppressed, totaling 1.6% of all deaths in the state. (Data on deaths is commonly suppressed when it involves very small numbers to protect individual identities.)
National death counts by age group were calculated using provisional death data from the Centers for Disease Control and Prevention, and included deaths as of Jan. 31, 2021.
Rates were calculated per 100,000 people using the 2019 American Community Survey.
The ethnic breakdown in Texas' border counties comes from the Census Bureau's 2019 population estimates.
Five months after her husband died of COVID-19, Valerie Villegas can see how grief has wounded her children.
Nicholas, the baby, who was 1 and almost weaned when his father died, now wants to nurse at all hours and calls every tall, dark-haired man "Dada," the only word he knows. Robert, 3, regularly collapses into furious tantrums, stopped using the big-boy potty and frets about sick people giving him germs. Ayden, 5, recently announced it's his job to "be strong" and protect his mom and brothers.
Her older kids — Kai Flores, 13, Andrew Vaiz, 16, and Alexis Vaiz, 18 — are often quiet and sad or angry and sad, depending on the day. The two eldest, gripped by anxiety that makes it difficult to concentrate or sleep, were prescribed antidepressants soon after losing their stepfather.
"I spend half the nights crying," said Villegas, 41, a hospice nurse from Portland, Texas. She became a widow on Jan. 25, just three weeks after Robert Villegas, 45, a strong, healthy truck driver and jiujitsu expert, tested positive for the virus.
"My kids, they're my primary concern," she said. "And there's help that we need."
But in a nation where researchers calculate that more than 46,000 children have lost one or both parents to COVID since February 2020, Villegas and other survivors say finding basic services for their bereaved kids — counseling, peer support groups, financial assistance — has been difficult, if not impossible.
"They say it's out there," Villegas said. "But trying to get it has been a nightmare."
Interviews with nearly two dozen researchers, therapists and other experts on loss and grief, as well as families whose loved ones died of COVID, reveal the extent to which access to grief groups and therapists grew scarce during the pandemic. Providers scrambled to switch from in-person to virtual visits and waiting lists swelled, often leaving bereft children and their surviving parents to cope on their own.
"Losing a parent is devastating to a child," said Alyssa Label, a San Diego therapist and program manager with SmartCare Behavioral Health Consultation Services. "Losing a parent during a pandemic is a special form of torture."
Children can receive survivor benefits when a parent dies if that parent worked long enough in a job that required payment of Social Security taxes. During the pandemic, the number of minor children of deceased workers who received new benefits has surged, reaching nearly 200,000 in 2020, up from an average of 180,000 in the previous three years. Social Security Administration officials don't track cause of death, but the latest figures marked the most awards granted since 1994. COVID deaths "undoubtedly" fueled that spike, according to the SSA's Office of the Chief Actuary.
And the number of children eligible for those benefits is surely higher. Only about half of the 2 million children in the U.S. who have lost a parent as of 2014 received the Social Security benefits to which they were entitled, according to a 2019 analysis by David Weaver of the Congressional Budget Office.
Counselors said they find many families have no idea that children qualify for benefits when a working parent dies, or don't know how to sign up.
In a country that showered philanthropic and government aid on the 3,000 children who lost parents to the 9/11 terror attacks, there's been no organized effort to identify, track or support the tens of thousands of kids left bereaved by COVID.
"I'm not aware of any group working on this," said Joyal Mulheron, the founder of Evermore, a nonprofit foundation that focuses on public policy related to bereavement. "Because the scale of the problem is so huge, the scale of the solution needs to match it."
COVID has claimed more than 600,000 lives in the U.S., and researchers writing in the journal JAMA Pediatrics calculated that for every 13 deaths caused by the virus, one child under 18 has lost a parent. As of June 15, that would translate into more than 46,000 kids, researchers estimated. Three-quarters of the children are adolescents; the others are under age 10. About 20% of the children who've lost parents are Black, though they make up 14% of the population.
"There's this shadow pandemic," said Rachel Kidman, an associate professor at Stony Brook University in New York, who was part of the team that found a way to calculate the impact of COVID deaths. "There's a huge amount of children who have been bereaved."
The Biden administration, which launched a program to help pay funeral costs for COVID victims, did not respond to questions about offering targeted services for families with children.
Failing to address the growing cohort of bereaved children, whether in a single family or in the U.S. at large, could have long-lasting effects, researchers said. The loss of a parent in childhood has been linked to higher risks of substance use, mental health problems, poor performance in school, lower college attendance, lower employment and early death.
"Bereavement is the most common stress and the most stressful thing people go through in their lives," said clinical psychologist Christopher Layne of the UCLA/Duke University National Center for Child Traumatic Stress. "It merits our care and concern."
Perhaps 10% to 15% of children and others bereaved by COVID might meet the criteria of a new diagnosis, prolonged grief disorder, which can occur when people have specific, long-lasting responses to the death of a loved one. That could mean thousands of children with symptoms that warrant clinical care. "This is literally a national, very public health emergency," Layne said.
Still, Villegas and others say they have been left largely on their own to navigate a confusing patchwork of community services for their children even as they struggle with their own grief.
"I called the counselor at school. She gave me a few little resources on books and stuff," Villegas said. "I called some crisis hotline. I called counseling places, but they couldn't help because they had waiting lists and needed insurance. My kids lost their insurance when their dad died."
The social disruption and isolation caused by the pandemic overwhelmed grief care providers, too. Across the U.S., nonprofit agencies that specialize in childhood grief said they have scrambled to meet the need and to switch from in-person to virtual engagement.
"It was a huge challenge; it was very foreign to the way we work," said Vicki Jay, CEO of the National Alliance for Grieving Children. "Grief work is based on relationships, and it's very hard to get a relationship with a piece of machinery."
At Experience Camps, which each year offers free weeklong camps to about 1,000 bereaved kids across the country, the waiting list has grown more than 100% since 2020, said Talya Bosch, an Experience Camps associate. "It is something that we are concerned about — a lot of kids are not getting the support they need," she said.
Private counselors, too, have been swamped. Jill Johnson-Young, co-owner of Central Counseling Services in Riverside, California, said her nearly three dozen therapists have been booked solid for months. "I don't know a therapist in the area who isn't full right now," she said.
Dr. Sandra McGowan-Watts, 47, a family practice doctor in Chicago, lost her husband, Steven, to COVID in May 2020. She feels fortunate to have found an online therapist for her daughter, Justise, who helped explain why the 12-year-old was suddenly so sad in the mornings: "My husband was the one who woke her up for school. He helped her get ready for school."
Justise was also able to get a spot at an Experience Camps session this summer. "I am nervous about going to camp, but I am excited about meeting new kids who have also lost someone close in their life," she said.
Jamie Stacy, 42, of San Jose, California, was connected with an online counselor for her daughter, Grace, 8, and twin sons, Liam and Colm, 6, after their father, Ed Stacy, died of COVID in March 2020 at age 52. Only then did she learn that children can grieve differently than adults. They tend to focus on concrete concerns, such as where they'll live and whether their favorite toys or pets will be there. They often alternate periods of play with sadness, cycling rapidly between confronting and avoiding their feelings of loss.
"The boys will be playing Legos, having a great time, and all of a sudden drop a bomb on you: 'I know how I can see Daddy again. I just have to die, and I'll see Daddy again,'" she said. "And then they're back to playing Legos."
Stacy said counseling has been crucial in helping her family navigate a world where many people are marking the end of the pandemic. "We can't escape the topic of COVID-19 even for one day," she said. "It's always in our face, wherever we go, a reminder of our painful loss."
Villegas, in Texas, has returned to her work in hospice care and is starting to reassemble her life. But she thinks there should be formal aid and grief support for families like hers whose lives have been indelibly scarred by the deadly virus.
"Now everybody's lives are going back to normal," she said. "They can get back to their lives. And I'm thinking my life will never be normal again."
This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
In the eyes of the tech industry, mental health treatment is an area ripe for disruption.
In any given year, 1 in 5 adults in the U.S. experience a form of mental illness, according to federal estimates. And research indicates only about half of them receive treatment in a system that is understaffed and ill distributed to meet demand.
For tech startups looking to cash in on unmet need, that translates into more than 50 million potential customers.
Venture capital firms invested more than $2.4 billion in digital behavioral health apps in 2020 — more than twice the amount invested in 2019 — touting support or treatment for issues from burnout and depression to ADHD and bipolar disorder. At least seven mental health app companies have achieved “unicorn” status and are valued at more than $1 billion.
But even as industry hype mounts, researchers and companies are scrambling to prove these apps actually work. Of the estimated 20,000 mental health apps available for download on personal computers and smartphones, just five have been formally vetted and approved by the Food and Drug Administration, which largely has taken a hands-off approach to regulating the space.
“Development has really outpaced the science,” said Stephen Schueller, a clinical psychologist at the University of California-Irvine who specializes in the development and evaluation of digital mental health products.
Type “depression” or “anxiety” into an app store, and you’ll be met with a dizzying list of results. There are thousands of “wellness” apps like Headspace that counsel people on breathing exercises and other techniques to help them feel more mindful. Apps such as Woebot and TalkLife profess to help manage conditions like anxiety and postpartum depression using games, mood journaling or text exchanges with peers or automated bots.
Some apps are meant to be used alongside in-person therapy, and others on their own. Several of the most popular, like Talkspace, BetterHelp and Ginger, promise access to treatment with a licensed therapist over text message, phone or video. Others, including Brightside and Cerebral, connect users to psychiatrists who can prescribe antidepressants.
Most products make their money by charging consumers a monthly or annual fee, with the option to purchase extras like video sessions with a therapist. Others contract directly with employers or insurers.
And, yes, a small portion of these apps have promising research to back them up. Several studies, for example, have found that cognitive behavioral therapy, a mainstay of treatment for depression and anxiety that seeks to help patients change negative thought patterns, is as effective when delivered using web-based platforms as when done in person by a licensed professional. And the pandemic has bolstered claims that patients are willing to trade in-person visits for the ease of online connection.
“Digital mental health can be viewed as a way to extend the mental resources that we have,” said David Mohr, who directs the Center for Behavioral Intervention Technologies at the Northwestern University Feinberg School of Medicine. A step-care model, for example, would allow patients with milder symptoms to be treated via technology while reserving in-person care for patients who need something more.
The challenge for consumers is separating the apps that might help from those that offer little more than distraction — or could actually do harm.
Some companies offering mental health treatment had recently been doing something totally different — for example, an online seller of erectile dysfunction and hair loss treatments has started offering psychiatric evaluations and prescribing and selling antidepressants.
Tech companies are by nature for-profit and, in the rush to compete in a saturated market, many are selling a product with an appealing user interface but little evidence of effectiveness. A 2020 analysis by Australian researchers reviewing nearly 300 apps for anxiety and depression found just 6% of the companies that boasted an evidence-based framework in the app store description for their products had published any evidence.
Nor do star ratings and download totals offer much context: An April study from Beth Israel Deaconess Medical Center and Harvard Medical School found little correlation between app store metrics and treatment quality.
“No one is competing based on privacy, safety or evidence. They’re competing on aesthetics, in part, on page ranking, marketing on brand awareness,” said Dr. John Torous, director of the digital psychiatry division at Beth Israel Deaconess Medical Center and one of the authors of the April study. “There’s an implicit assumption that the app is better than nothing. But what if it isn’t better than nothing?”
One problem, said Dr. Ipsit Vahia, a geriatric psychiatrist and medical director of the McLean Institute for Technology in Psychiatry, is that randomized control studies of the kind that might prove an app’s effectiveness can take years, far slower than the rapid innovation in tech. “In general, the health care industry and the technology industry work at very different paces,” Vahia said.
Dr. David Mou, a psychiatrist at Massachusetts General Hospital who is chief medical officer at Cerebral, said he agrees that everything new in health care must be done deliberately and conservatively to avoid patient harm. But he said some people in the mental health field are painting all companies with the same brush and failing to differentiate those that are data-driven from those trying to grow at any cost.
“They look at us and say we’re all VC-backed bros in a basement trying to redesign health care. And that’s not true. It may have been true 10 years ago, but it isn’t true today,” said Mou. The long-term winners, he said, will be those that are “evidence-based and measure quality like crazy.”
Cerebral offers online therapy and medication management and delivery for a range of mental illnesses. The monthly subscription fees range from $29 to $325, depending on the level and frequency of care, as well as insurance coverage. Mou said Cerebral is already able to demonstrate some advantages. While many top hospital systems might have a months-long wait for care, he said, someone in crisis can reach a Cerebral provider almost immediately. “Within minutes you are able to talk with someone with one of our instant live visits. That in itself is a huge win.”
Even critics of the tech explosion are quick to acknowledge that the current brick-and-mortar system of mental health is dated and inadequate. In recent years, the issues surrounding mental illness and lack of access to treatment have infiltrated public dialogue. Brain illnesses that many families once squirreled away from view have become the stuff of celebrity culture and dinner-table chatter.
Yet even as advocates have made strides in acceptance, truly improving the lives of people with mental illness has proven stubbornly difficult. Over the past several decades — while the U.S. successfully lowered death rates for cancer, heart disease and other major illnesses — deaths by suicide and drug overdose have continued to climb.
Federal law theoretically requires insurance companies to cover brain illness as they would any other illness. But finding affordable care remains a challenge, largely because of a shortage of licensed mental health professionals and ongoing inequities in insurance coverage.
In a nation where huge swaths of the population lack a primary care doctor and health insurance — but most everyone has a cellphone — connecting people to treatment via mobile apps would seem a logical solution. And, for some, the opportunity to talk about their mental health challenges anonymously makes online treatment an attractive alternative.
Still, many of the experts who welcome the potential for innovation in mental health treatment acknowledge that consumers are getting little guidance in how to choose a reputable option. “Wellness” apps that promote a healthy lifestyle or apps that help people manage their disease without providing specific treatment suggestions can avoid FDA regulation. But even those that offer patient-specific diagnoses and treatment recommendations that would seem to fall squarely under the FDA’s authority do not seem to garner the agency’s attention, according to industry experts.
“The FDA has been really, really lax on enforcing in digital health for reasons that are not entirely clear to me,” said Bradley Merrill Thompson, a lawyer at Epstein Becker Green who advises companies on FDA regulations. “Anybody could spend 20 minutes on the app store and find dozens of examples of apps that make medical device claims, and that have been doing so for some time, without any effort by the FDA to rein them in.”
In response to questions from KHN about its approach to regulating mental health apps, the FDA sent a brief statement. “As circumstances change and new needs arise, FDA is ready to meet and address these challenges, especially in the areas of mental health,” the statement reads in part. “We would like to see more evidence-based products in this area, which is why we remain committed to facilitating the development of additional safe and effective therapies for patients who rely on these products.”
Dr. Tom Insel, a psychiatrist and neuroscientist, has a unique view of the evolving landscape. In 2015, Insel left his job as director of the National Institute of Mental Health, a post he had held since 2002, trading the halls of government for the open floor plans of Silicon Valley to work in digital mental health. He started at Google’s Verily, then co-founded Mindstrong Health, a startup researching how smartphone technology could be used to predict and diagnose mental health crises. He has since left to advise California officials on behavioral health issues.
Insel said he believes in the promise of digital mental health but that it will take time to find its highest and best use. He noted, for example, that most of the apps on the market focus on the problem of access: They make care more convenient. But they’re overlooking a more basic problem: quality. Unlike most fields of medicine, mental health providers rarely measure whether the care they provide makes patients better.
“A lot of what we need is not just more access. It’s not just recreating the brick-and-mortar system and letting people do it by phone or Zoom,” Insel said. Instead, he argued, digital health should focus on measuring whether treatments improve people’s lives.
“I have no doubt that this field will transform mental health treatment and diagnosis,” Insel said, “but we’re in the first act of a five-act play. I don’t think we’re anywhere near the kinds of solutions that we need in the real world.”
Paul's social media communication represented his latest salvo in the ongoing debate over whether natural immunity is equivalent or even better than vaccination.
This article was published on Tuesday, June 22, 2021 in Kaiser Health News.
Last week, Sen. Rand Paul (R-Ky.) posted a Twitter thread asserting that people who have survived a COVID-19 infection were unlikely to be reinfected and have better immunity against variants than those who have been vaccinated against — but not infected by — SARS-CoV-2, the virus that causes COVID.
The social media communication represented his latest salvo in the ongoing debate over whether natural immunity is equivalent or even better than vaccination.
While the science on the subject is still evolving, a look at the evidence behind Paul's series of tweets seemed in order. After all, though almost 65% of Americans have received at least one dose of a COVID vaccine, some people who have recovered from COVID may not feel a need to get shot. Paul, who was the first senator to be diagnosed with the virus, is among them. Here's a deeper look at what Paul said on Twitter, the studies he cited and how researchers characterized his comments.
Breaking Down the Twitter Thread
In his first tweet, Paul referenced a recent Cleveland Clinic study finding that among subjects who were unvaccinated but had already had COVID-19, there were no re-infections in a five-month observation period: "Great news! Cleveland clinic study of 52,238 employees shows unvaccinated people who have had COVID 19 have no difference in re-infection rate than people who had COVID 19 and who took the vaccine."
In subsequent tweets, the senator said: "The immune response to natural infection is highly likely to provide protective immunity even against the SARS-CoV-2 variants. … Thus, recovered COVID-19 patients are likely to better defend against the variants than persons who have not been infected but have been immunized with spike-containing vaccines only." All three vaccines authorized for emergency use in the U.S. (Pfizer-BioNTech, Moderna and Johnson & Johnson) contain genetic instructions that tell our cells how to make a spike protein associated with the coronavirus. The presence of that spike protein then causes our bodies to make antibodies to protect against COVID.
At the end of his final tweet, Rand then linked to a second study led by scientists at the Fred Hutchinson Cancer Research Center in Seattle to support his assertions.
Digesting the Scientific Papers
Paul referenced two scientific papers in his tweet thread — both of which are preprints, meaning they have not yet been published in scientific journals or been peer-reviewed.
One was a study from the Cleveland Clinic following four categories of healthcare workers: unvaccinated but previously infected; unvaccinated but not previously infected; vaccinated and previously infected; and vaccinated but not previously infected. The workers were followed for five months.
The researchers found that no one who was unvaccinated but had previously been infected with COVID became infected again during the five-month study period. Infections were almost zero among those who were vaccinated, while there was a steady increase in infections among those who were unvaccinated and previously uninfected.
When asked whether he believed Paul's tweet had interpreted his study results correctly, the study's lead author, Dr. Nabin Shrestha, an infectious diseases specialist at Cleveland Clinic, said "it was an accurate interpretation of the study's findings."
However, Dr. George Rutherford, an epidemiologist at the University of California-San Francisco, wrote in an email that he would add one caveat to the wording of Paul's tweet: "Note that in his tweet Senator Paul seems to suggest that the denominator of previously infected healthcare workers at the Cleveland Clinic was 52,238 — that was the total number in the whole study. There were 1,359 that were previously infected and never vaccinated, and there were no reinfections noted over a median follow up of 143 days. So, the tweet itself is accurate if read literally but the denominator is really 1,359."
As for the other study Paul mentioned, researchers analyzed COVID-19 immunity in those who had been infected with the COVID virus and those who hadn't and found that infection activated a range of immune cells and immunity lasted at least eight months.
In his last two tweets in the thread, Paul quotes directly from the study's "discussion" section: "The immune response to natural infection is highly likely to provide protective immunity even against the SARS-CoV-2 variants. … Thus, recovered COVID-19 patients are likely to better defend against the variants than persons who have not been infected but have been immunized with spike-containing vaccines only."
The lead study author, Kristen Cohen, a senior staff scientist in the Vaccine and Infectious Disease Division at the Fred Hutchinson Cancer Research Center in Seattle, acknowledged that Paul's tweet was a direct quote from the study. Still, she said, in her view, the quote was taken out of context and presented to suit Paul's objective — but does not accurately reflect the overall take-home message from the study's findings.
That's because, she said, Paul was quoting from the discussion section of the paper. The discussion is the final section of a scientific paper, and Cohen said its purpose here was to project what the study's findings could imply for a broader scientific significance.
"We wrote that recovering COVID patients are "likely" to better defend against variants than those who have just been immunized, but it's not saying they do," said Cohen. "It's not saying they have been known to. It's making a hypothesis or basically saying this could be the case."
In fact, Cohen's study did not include any subjects who had been vaccinated. The researchers were merely reasoning in the sentence Paul quoted that, based on the data showing the immune system's broad natural response, those who recover from COVID-19 and then receive a vaccine may be better protected against COVID variants than those who had only vaccine-induced immunity.
"We did not intend to argue that infected people do not need to get vaccinated or that their immune responses are superior," Cohen wrote in an email.
However, Cohen recognized the sentence was confusing when taken out of context and said she will eliminate it from the paper when it gets submitted for publication.
Cohen pointed us to another Fred Hutchinson-led study with which she was involved. It did show that people who previously had COVID-19 benefited from also getting vaccinated, because there was a significant boost in immune response, especially against variants.
The Conventional Wisdom on Natural Immunity
So, what's known from these two studies is that surviving a COVID infection confers a significant amount of immunity against the virus. Other studies also support this assertion.
"Existing literature does show natural immunity provides protection against COVID-19," said Shane Crotty, a professor at the Center for Infectious Disease and Vaccine Research at the La Jolla Institute for Immunology who has published numerous peer-reviewed studies on natural immunity against COVID-19. He said such immunity particularly protects against hospitalizations and severe illness.
In Crotty's own recent study, the largest yet to measure the molecules and cells involved in immune protection, his team found that natural immunity against COVID lasted at least eight months. Based on projections, it could last up to a couple of years.
While that is good news, Crotty said, there are three points of caution.
First, though natural immunity appears to be very effective against the current dominant U.S. variant (known as alpha), it also appears weaker than vaccine immunity against some of the variants circulating, such as the delta variant, first detected in India. That means if those variants eventually become dominant in the U.S., people relying on natural immunity would be less protected than those who are vaccinated.
Second, there is a lack of data about whether natural immunity prevents asymptomatic transmission and infection. Several other studies, though, show vaccines do.
Third, Crotty said his studies have shown that levels of natural immunity can vary widely in individuals. His team even found a hundredfold difference in the number of immune cells among people.
"If you thought about the immune system as a basketball game and you thought about that as a team scoring 1 point, and another team scoring 100 points, that's a big difference," said Crotty. "We're not so confident that people at the low end of immunity levels would be as protected against COVID-19."
But those who receive a vaccine shot have a much more consistent number of immune cells, since everyone receives the same dose amount, said Crotty.
With all that in mind, the Centers for Disease Control and Prevention recommends that those who previously had COVID-19 should get vaccinated and receive both doses of a vaccine, whether it's the Pfizer-BioNTech or Moderna vaccine. Fauci, the nation's leading infectious disease expert, reiterated this message during a White House COVID-19 briefing last month.
PHILADELPHIA — When doctors at a primary care clinic here noticed many of its poorest patients were failing to show up for appointments, they hoped giving out free rides would help.
But the one-time complimentary ride didn't reduce these patients' 36% no-show rate at the University of Pennsylvania Health System clinics.
"I was super surprised it did not have any effect," said Dr. Krisda Chaiyachati, the Penn researcher who led the 2018 study of 786 Medicaid patients.
Many of the patients did not take advantage of the ride because they were either saving it for a more important medical appointment or preferred their regular travel method, such as catching a ride from a friend, a subsequent study found.
It was not the first time that efforts by a healthcare provider to address patients' social needs — such as food, housing and transportation — failed to work.
In the past decade, dozens of studies funded by state and federal governments, private hospitals, insurers and philanthropic organizations have looked into whether addressing patients' social needs improves health and lowers medical costs.
But so far it's unclear which of these strategies, focused on so-called social determinants of health, are most effective or feasible, according to several recent academic reports by experts at Columbia, Duke and the University of California-San Francisco that evaluated existing research.
And even when such interventions show promising results, they usually serve only a small number of patients. Another challenge is that several studies did not go on long enough to detect an impact, or they did not evaluate health outcomes or health costs.
"We are probably at a peak of inflated expectations, and it is incumbent on us to find the innovations that really work," said Dr. Laura Gottlieb, director of the UCSF Social Interventions Research and Evaluation Network. "Yes, there's a lot of hype, and not all of these interventions will have staying power."
With healthcare providers and insurers eager to find ways to lower costs, the limited success of social-need interventions has done little to slow the surge of pilot programs — fueled by billions of private and government dollars.Bottom of Form
Paying for Health, Not Just Healthcare
Across the country, both public and private health insurance programs are launching large initiatives aimed at improving health by helping patients with unmet social needs. One of the biggest efforts kicks off next year in North Carolina, which is spending $650 million over five years to test the effect of giving Medicaid enrollees assistance with housing, food and transportation.
California is redesigning its Medicaid program, which covers nearly 14 million residents, to dramatically increase social services to enrollees.
These moves mark a major turning point for Medicaid, which, since its inception in 1965, largely has prohibited government spending on most nonmedical services. To get around this, states have in recent years sought waivers from the federal government and pushed private Medicaid health plans to address enrollees' social needs.
The move to address social needs is gaining steam nationally because, after nearly a dozen years focused on expanding insurance under the Affordable Care Act, many experts and policymakers agree that simply increasing access to healthcare is not nearly enough to improve patients' health.
That's because people don't just need access to doctors, hospitals and drugs to be healthy, they also need healthy homes, healthy food, adequate transportation and education, a steady income, safe neighborhoods and a home life free from domestic violence — things hospitals and doctors can't provide, but that in the long run are as meaningful as an antibiotic or an annual physical.
Researchers have known for decades that social problems such as unstable housing and lack of access to healthy foods can significantly affect a patient's health, but efforts by the health industry to take on these challenges didn't really take off until 2010 with the passage of the ACA. The law spurred changes in how insurers pay health providers — moving them away from receiving a set fee for each service to payments based on value and patient outcomes.
As a result, hospitals now have a financial incentive to help patients with nonclinical problems — such as housing and food insecurity — that can affect health.
Temple University Health System in Philadelphia launched a two-year program last year to help 25 homeless Medicaid patients who frequently use its emergency room and other ERs in the city by providing them free housing, and caseworkers to help them access other health and social services. It helps them furnish their apartments, connects them to healthy delivered meals and assists with applications for income assistance such as Social Security.
To qualify, participants had to have used the ER at least four times in the previous year and had at least $10,000 in medical claims that year.
Temple has seen promising results when comparing patients' experiences before the study to the first five months they were all housed. In that time, the participants' average number of monthly ER visits fell 75% and inpatient hospital admissions dropped 79%.
At the same time, their use of outpatient services jumped by 50% — an indication that patients are seeking more appropriate and lower-cost settings for care.
Living Life as 'Normal People Do'
One participant is Rita Stewart, 53, who now lives in a one-bedroom apartment in Philadelphia's Squirrel Hill neighborhood, home to many college students and young families.
"Everyone knows everyone," Stewart said excitedly from her second-floor walk-up. It's "a very calm area, clean environment. And I really like it."
Before joining the Temple program in July and getting housing assistance, Stewart was living in a substance abuse recovery home. She had spent a few years bouncing among friends' homes and other recovery centers. Once she slept in the city bus terminal.
In 2019, Stewart had visited the Temple ER four times for various health concerns, including anxiety, a heart condition and flu.
Stewart meets with her caseworkers at least once a week for help scheduling doctor appointments, arranging group counseling sessions and managing household needs.
"It's a blessing," she said from her apartment with its small kitchen and comfy couch.
"I have peace of mind that I am able to walk into my own place, leave when I want to, sleep when I want to," Stewart said. "I love my privacy. I just look around and just wow. I am grateful."
Stewart has sometimes worked as a nursing assistant and has gotten her healthcare through Medicaid for years. She still deals with depression, she said, but having her own home has improved her mood. And the program has helped keep her out of the hospital.
"This is a chance for me to take care of myself better," she said.
Her housing assistance help is set to end next year when the Temple program ends, but administrators said they hope to find all the participants permanent housing and jobs.
"Hopefully that will work out and I can just live my life like normal people do and take care of my priorities and take care of my bills and things that a normal person would do," Stewart said.
"Housing is the second-most impactful social determinant of health after food security," said Steven Carson, a senior vice president at Temple University Health System. "Our goal is to help them bring meaningful and lasting health improvement to their lives."
Success Doesn't Come Cheap
Temple is helping pay for the program; other funding comes from two Medicaid health plans, a state grant and a Pittsburgh-based foundation. A nonprofit human services organization helps operate the program.
Program organizers hope the positive results will attract additional financing so they can expand to help many more homeless patients.
The effort is expensive. The "Housing Smart" program cost $700,000 to help 25 people for one year, or $28,000 per person. To put this in perspective, a single ER visit can cost a couple of thousands of dollars. And "frequent flyer" patients can tally up many times that in ER visits and follow-up care.
If Temple wants to help dozens more patients with housing, it will need tens of millions of dollars more per year.
Still, Temple officials said they expect the effort will save money over the long run by reducing expensive hospital visits — but they don't yet have the data to prove that.
The Temple program was partly inspired by a similar housing effort started at two Duke University clinics in Durham, North Carolina. That program, launched in 2016, has served 45 patients with unstable housing and has reduced their ER use. But it's been unable to grow because housing funding remains limited. And without data showing the intervention saves on healthcare costs, the organizers have been unable to attract more financing.
Often there is a need to demonstrate an overall reduction in healthcare spending to attract Medicaid funding.
"We know homelessness is bad for your health, but we are in the early stages of knowing how to address it," said Dr. Seth Berkowitz, a researcher at the University of North Carolina-Chapel Hill.
Results Remain to Be Seen
"We need to pay for health not just healthcare," said Elena Marks, CEO of the Houston-based Episcopal Health Foundation, which provides grants to community clinics and organizations to help address the social needs of vulnerable populations.
The nationwide push to spend more on social services is driven first by the recognition that social and economic forces have a greater impact on health than do clinical services like doctor visits, Marks said. A second factor is that the U.S. spends far less on social services per capita compared with other large, industrialized nations.
"This is a new and emerging field," Marks said when reviewing the evaluations of the many social determinants of health studies. "The evidence is weak for some, mixed for some, and strong for a few areas."
But despite incomplete evidence, Marks said, the status quo isn't working either: Americans generally have poorer health than their counterparts in other industrialized countries with more robust social services.
"At some point we keep paying you more and more, Mr. Hospital, and people keep getting less and less. So, let's go look for some other solutions" Marks said.
The COVID-19 pandemic has shined further light on the inequities in access to health services and sparked interest in Medicaid programs to address social issues. Over half of states are implementing or expanding Medicaid programs that address social needs, according to a KFF study in October 2020. (The KHN newsroom is an editorially independent program of KFF.)
The Medicaid interventions are not intense in many states: Often they involve simply screening patients for social needs problems or referring them to another agency for help. Only two states — Arizona and Oregon — require their Medicaid health plans to directly invest money into pilot programs to address the social problems that screening reveals, according to a survey by consulting firm Manatt.
The Centers for Medicare & Medicaid Services, which is funding a growing number of efforts to help Medicaid patients with social needs, said it "remains committed" to helping states meet enrollees' social challenges including education, employment and housing.
On Jan. 7, CMS officials under the Trump administration sent guidance to states to accelerate these interventions. In May, under President Joe Biden, a CMS spokesperson told KHN: "Evidence indicates that some social interventions targeted at Medicaid and CHIP beneficiaries can result in improved health outcomes and significant savings to the healthcare sector."
The agency cited a 2017 survey of 17 state Medicaid directors in which most reported they recognized the importance of social determinants of health. The directors also noted barriers to address them, such as cost and sustainability.
In Philadelphia, Temple officials now face the challenge of finding new financing to keep their housing program going.
"We are trying to find the magic sauce to keep this program running," said Patrick Vulgamore, project manager for Temple's Center for Population Health.
Sojourner Ahebee, health equity fellow at WHYY's health and science show, "The Pulse," contributed to this report.
This story is part of a partnership that includes WHYY, NPR and KHN.