Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and its second season is co-produced by KHN.
In Maryland, hospitals had been suing people — taking them to court and garnishing wages — even though these patients legally qualified for financial assistance, also known as charity care. Those lawsuits are now illegal, because of the state's new Medical Debt Protection Act. But in many other states, it still happens.
This episode, the fourth in our series on charity care, focuses on how that change came about — as well as the coalition of consumer-protection advocates, riled-up activists and healthcare worker unions that made it happen.
We close out the episode by checking in with Jared Walker and his organization, Dollar For. Walker went super-viral on TikTok, telling people how to "crush medical bills" by understanding and applying for the financial assistance most hospitals are required by law to provide. Ten million people saw that video and now Dollar For is working to build an army of volunteers to tackle more than $100 million in medical debt — one bill at a time.
Workers in adult and senior care facilities and in-home aides have been added to the list of California health workers who must be fully vaccinated against the coronavirus.
Those who work directly with people with disabilities — such as employees paid through the state's regional center network, aides contracted by agencies, and in-home support service workers who don't live with the person they assist — are now included in the vaccine mandate. This new group must be fully vaccinated by Nov. 30.
Previous health orders covered only people working in licensed congregate settings like nursing homes, leaving out staff members who support 89% of people in California with developmental disabilities living with family, on their own or in group homes.
For months, that left people like Tim Jin who rely on aides for everyday tasks to wonder: Is the person brushing my teeth vaccinated?
"Due to my disability, I cannot do anything like cooking, eating, using the restroom or even using the microwave on my own. I am totally dependent on others to assist me," Jin said.
Jin has cerebral palsy and lacks the use of his arms or hands. He communicates mainly by typing with his toes on an iPad mounted next to his feet on his electric wheelchair. Up to six health aides come in and out of his home every day, helping him with intimate tasks like eating and bathing.
"The staff who come into my home should be vaccinated. It's that simple," he said. "It's a matter of life and death."
Only health workers with religious objections or a qualifying medical condition can be exempted from the vaccine requirement. They will be tested weekly for the virus that causes COVID-19 and must wear high-grade masks when working.
But the order applied only to L.A. County, leaving out the 200,000 Californians with developmental disabilities living elsewhere, including Tim Jin, who lives in neighboring Orange County.
Advocates for people with disabilities hoped state health officials would use L.A. County as a model, but California's Sept. 28 health order went further, mandating the vaccine for some in-home support service workers, as well as home health aides.
"These care settings are home to Californians with complex medical conditions, all of whom are at high risk of having severe but preventable outcomes, including hospitalization, severe illness and death," said Dr. Tomás Aragón, California's public health officer.
California has reported 19,830 confirmed COVID outbreaks throughout the pandemic, and nearly 50% of those were reported in healthcare, congregate care and direct care settings, according to the California Department of Public Health. Of these outbreaks, the most (22%) have occurred in adult and senior care facilities and in-home direct care settings.
Studies show that people with intellectual and developmental disabilities often have underlying health conditions that make them more susceptible to COVID.
"And when they do get diagnosed with COVID-19, they are about two to three times more likely to die from the disease," said Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs.
"Which really just makes sense for COVID," he said. "If you've got a caregiver that's right up next to you, all day, it's going to increase the chances that you could get the disease."
This story is from a reporting partnership that includes Southern California Public Radio, NPR and KHN.
SANTA CRUZ, Calif. — For more than 30 years, public health officials and nonprofits in California have provided clean hypodermic needles to people who use them to inject drugs.
For nearly that entire time, opponents have accused the free needle programs of promoting drug use and homelessness.
But recently, opponents have deployed a novel strategy to shut them down: using environmental regulations to sue over needle waste. They argue that contaminated needles pollute parks and waterways — and their lawsuits have succeeded across the state.
A bill signed Monday by Democratic Gov. Gavin Newsom will thwart that tactic.
Environmental challenges have already forced free needle programs in Orange County, Chico and Eureka to close or modify their operations.
The new law comes at a critical moment for a program in Santa Cruz. A final court ruling that could determine the fate of the program is expected within days, and it's not clear how the law will affect the judge's decision.
"We're in the midst of an opioid crisis," said Assembly member Joaquin Arambula (D-Fresno), a physician who wrote the bill Newsom signed, AB 1344. "We need all the tools that we have available for us to address this crisis head-on."
Despite the legislative victory, lawsuits to challenge needle programs on other grounds are still possible, and local ordinances banning needle exchanges have flourished across California.
Under the new law, which takes effect Jan. 1, opponents of free needle programs will no longer be able to sue over violations of the California Environmental Quality Act, known as CEQA.
CEQA requires projects that need approval from a public agency or receive public funding to be assessed for their potential environmental impacts. This requirement applies to major construction projects, like reservoirs and freeway overpasses, and localized ones such as affordable housing. CEQA is enforced by lawsuits and has been invoked over the years to stop or slow unpopular proposals, like homeless shelters.
California allows licensed physicians to give clean needles to patients without authorization. Free needle programs run by local governments or community groups must be approved by the state, a county or city.
These programs, which allow people to dispose of used "rigs" and get new ones, attempt to reduce the spread of HIV and hepatitis C, which can spread among drug users who share needles, and decrease infections among users. Some are true "exchanges" that require people to turn in a used needle to get a new one. Others allow people to take what they need without returning them.
In the past few years, opponents have started focusing on the programs' environmental impacts because some needles end up on the ground or in creeks and rivers.
Walt McNeill, a lawyer in Nevada City, California, challenged nonprofit-run needle programs in Chico, Eureka and Santa Cruz on behalf of local officials, former law enforcement officers and community groups.
McNeill said his clients aren't opposed to needle programs in general, just ones they believe are run irresponsibly. "You have no idea where the needles are going, and no way of recovering needles effectively," he said.
The trend in environmental challenges began a few years ago when the only needle program in Orange County shut down following a CEQA lawsuit. In 2020, a program created to address needle pollution in Chico closed after it settled a CEQA lawsuit, then later reopened on a smaller scale under a physician's authority. Also in 2020, Eureka officials wouldn't reauthorize a needle program after McNeill challenged it on environmental grounds.
Last year, McNeill sued one of two free needle programs in Santa Cruz County. Run by the Harm Reduction Coalition of Santa Cruz County, it operates out of a van and serves up to 75 people each Sunday on the same street corner in an industrial part of town. The complaint alleged the program "spread tens of thousands of used and unused hypodermic needle 'litter'" throughout the community and has led to "environmental degradation of the creeks, streams, rivers and beaches."
A superior court judge in Sacramento is expected to hand down her ruling soon. McNeill said he's confident the judge will side with his clients despite the new law because of other flaws in the program. If she disagrees, he said, he may file another suit on other grounds.
"No matter how you slice it, the program will be deauthorized," he said.
But Denise Elerick, founder of the coalition, said she believes her program will survive. She said arguments about needle litter mask anti-homeless sentiment.
"They say it's about the environment but it's not. They want people to die and disappear," she said.
Decades of research shows that needle giveaways aren't a major source of pollution, and that people who get needles from an exchange are more likely to dispose of them properly than those who don't.
A 2019 study by Santa Cruz County's Health Services Agency found that for every 10 needles that ended up on the ground or in a river, 1,000 made it into a sharps container, used to collect used needles, or an official disposal point. The report concluded that reducing needle litter would require more syringe programs and disposal sites, not fewer.
The Santa Cruz program, which began in 2018, gives out as many syringes as people request.
In addition to offering nine sizes of syringes, the program gives out sharps containers, ranging in capacity from a quarter gallon to 8 gallons, which can be returned, picked up or left at disposal kiosks around town.
On one Sunday in August, 56 people stopped by the van and 51 sharps containers were distributed. The coalition would not disclose how many needles it typically gives away.
The clients also gathered supplies to protect them from staph infections, COVID and other dangers: condoms, hand sanitizer, masks, alcohol pads, drug-testing strips to ferret out fentanyl, and medication to reverse overdoses. The program even offered clean pipes to encourage that drugs be smoked — rather than injected — and reduce the spread of COVID from sharing pipes.
Many who line up each week live in nearby parks and alongside creeks that are the focus of opponents' environmental concerns. They said they have a vested interest in keeping the environment clean.
"Just because we're drug addicts doesn't mean we don't take care of ourselves," said one woman, 35. (In order to observe how the program works, KHN agreed not to name the people procuring supplies.) "Yeah, I live in a tent, but my tent is clean. I try to take care of other people and I take care of myself."
The new law comes too late for programs like Chico's, because the city has since passed an ordinance banning syringe exchanges. Similar bans have been adopted in Anaheim, Oroville, Butte County, Yuba City and elsewhere in the past few years.
Ryan Coonerty, a Santa Cruz County supervisor, said the county likely won't adopt a ban, though he's disappointed by Newsom's decision. He believes the nonprofit needle program in Santa Cruz contributes to needle pollution more than the county-run program, which requires people to turn in used needles to get fresh ones.
"We will continue to struggle with needle litter and, unfortunately, not get any help from the state to stop needles from going into the ocean, parks and beaches," he said.
But the Centers for Disease Control and Prevention and other public health agencies say one-for-one programs limit the ways people can safely dispose of sharps, forcing them to hang onto their needles until the next needle exchange. That's not realistic, according to the people who lined up to get needles from the Santa Cruz program.
"A lot of us are homeless," said one 40-year-old woman, "and we can only stay someplace for so long."
Anthem Blue Cross, the country's second-biggest health insurance company, is behind on billions of dollars in payments owed to hospitals and doctors because of onerous new reimbursement rules, computer problems and mishandled claims, say hospital officials in multiple states.
Anthem, like other big insurers, is using the COVID-19 crisis as cover to institute "egregious" policies that harm patients and pinch hospital finances, said Molly Smith, group vice president at the American Hospital Association. "There's this sense of 'Everyone's distracted. We can get this through,'" she said.
Hospitals are also dealing with a spike in retroactive claims denials by UnitedHealthcare, the biggest health insurer, for emergency department care, AHA says.
Disputes between insurers and hospitals are nothing new. But this fight sticks more patients in the middle, worried they'll have to pay unresolved claims. Hospitals say it is hurting their finances as many cope with COVID surges — even after the industry has received tens of billions of dollars in emergency assistance from the federal government.
"We recognize there have been some challenges" to prompt payments caused by claims-processing changes and "a new set of dynamics" amid the pandemic, Anthem spokesperson Colin Manning said in an email. "We apologize for any delays or inconvenience this may have caused."
Virginia law requires insurers to pay claims within 40 days. In a Sept. 24 letter to state insurance regulators, VCU Health, a system that operates a large teaching hospital in Richmond associated with Virginia Commonwealth University, said Anthem owes it $385 million. More than 40% of the claims are more than 90 days old, VCU said.
For all Virginia hospitals, Anthem's late, unpaid claims amount to "hundreds of millions of dollars," the Virginia Hospital and Healthcare Association said in a June 23 letter to state regulators.
Nationwide, the payment delays "are creating an untenable situation," the American Hospital Association said in a Sept. 9 letter to Anthem CEO Gail Boudreaux. "Patients are facing greater hurdles to accessing care; clinicians are burning out on unnecessary administrative tasks; and the system is straining to finance the personnel and supplies" needed to fight COVID.
Complaints about Anthem extend "from sea to shining sea, from New Hampshire to California," AHA CEO Rick Pollack told KHN.
Substantial payment delays can be seen on Anthem's books. On June 30, 2019, before the pandemic, 43% of the insurer's medical bills for that quarter were unpaid, according to regulatory filings. Two years later that figure had risen to 53% — a difference of $2.5 billion.
Anthem profits were $4.6 billion in 2020 and $3.5 billion in the first half of 2021.
Alexis Thurber, who lives near Seattle, was insured by Anthem when she got an $18,192 hospital bill in May for radiation therapy that doctors said was essential to treat her breast cancer.
The treatments were "experimental" and "not medically necessary," Anthem said, according to Thurber. She spent much of the summer trying to get the insurer to pay up — placing two dozen phone calls, spending hours on hold, sending multiple emails and enduring unmeasurable stress and worry. It finally covered the claim months later.
"It's so egregious. It's a game they're playing," said Thurber, 51, whose cancer was diagnosed in November. "Trying to get true help was impossible."
Privacy rules prevent Anthem from commenting on Thurber's case, said Anthem spokesperson Colin Manning.
When insurers fail to promptly pay medical bills, patients are left in the lurch. They might first get a notice saying payment is pending or denied. A hospital might bill them for treatment they thought would be covered. Hospitals and doctors often sue patients whose insurance didn't pay up.
Hospitals point to a variety of Anthem practices contributing to payment delays or denials, including new layers of document requirements, prior-authorization hurdles for routine procedures and requirements that doctors themselves — not support staffers — speak to insurance gatekeepers. "This requires providers to literally leave the patient['s] bedside to get on the phone with Anthem," AHA said in its letter.
Anthem often hinders coverage for outpatient surgery, specialty pharmacy and other services in health systems listed as in-network, amounting to a "bait and switch" on Anthem members, AHA officials said.
"Demanding that patients be treated outside of the hospital setting, against the advice of the patient's in-network treating physician, appears to be motivated by a desire to drive up Empire's profits," the Greater New York Hospital Association wrote in an April letter to Empire Blue Cross, which is owned by Anthem.
Anthem officials pushed back in a recent letter to the AHA, saying the insurer's changing rules are intended partly to control excessive prices charged by hospitals for specialty drugs and nonemergency surgery, screening and diagnostic procedures.
Severe problems with Anthem's new claims management system surfaced months ago and "persist without meaningful improvement," AHA said in its letter.
Claims have gotten lost in Anthem's computers, and in some cases VCU Health has had to print medical records and mail them to get paid, VCU said in its letter. The cash slowdown imposes "an unmanageable disruption that threatens to undermine our financial footing," VCU said.
United denied $31,557 in claims for Emily Long's care after she was struck in June by a motorcycle in New York City. She needed surgery to repair a fractured cheekbone. United said there was a lack of documentation for "medical necessity" — an "incredibly aggravating" response on top of the distress of the accident, Long said.
The Brooklyn hospital that treated Long was "paid appropriately under her plan and within the required time frame," said United spokesperson Maria Gordon Shydlo. "The facility has the right to appeal the decision."
United's unpaid claims came to 54% as of June 30, about the same level as two years previously.
When Erin Conlisk initially had trouble gaining approval for a piece of medical equipment for her elderly father this summer, United employees told her the insurer's entire prior-authorization database had gone down for weeks, said Conlisk, who lives in California.
"There was a brief issue with our prior-authorization process in mid-July, which was resolved quickly," Gordon Shydlo said.
When asked by Wall Street analysts about the payment backups, Anthem executives said it partly reflects their decision to increase financial reserves amid the health crisis.
"Really a ton of uncertainty associated with this environment," John Gallina, the company's chief financial officer, said on a conference call in July. "We've tried to be extremely prudent and conservative in our approach."
During the pandemic, hospitals have benefited from two extraordinary cash infusions. They and other medical providers have received more than $100 billion through the CARES Act of 2020 and the American Rescue Plan of 2021. Last year United, Anthem and other insurers accelerated billions in hospital reimbursements.
Those are the systems most hurt now by insurer payment delays, hospital officials said. Federal relief funds "have been a lifeline, but they don't make people whole in terms of the losses from increased expenses and lost revenue as a result of the COVID experience," Pollack said.
Several health systems declined to comment about claims-payment delays or didn't respond to a reporter's queries. Among individual hospitals "there is a deep fear of talking on the record about your largest business partner," AHA's Smith said.
Alexis Thurber worried she might have to pay her $18,192 radiation bill herself, and she's not confident her Anthem policy will do a better job next time of covering the cost of her care.
"It makes me not want to go to the doctor anymore," she said. "I'm scared to get another mammogram because you can't rely on it."
GUNNISON, Colo. — For the past eight years, my wife, Ky Hamilton, has undergone gender-affirming hormone therapy. As a transgender woman, she injects Depo-Estradiol liquid estrogen into her thigh once a week. This drug has allowed her to physically transition as a woman, and each vial, which lasts around five weeks, was completely covered by insurance.
That was until she lost her job in April 2020 and we switched to a subsidized private health insurance plan in Colorado's Affordable Care Act marketplace. We discovered that our new insurance from Anthem doesn't cover Depo-Estradiol and it would cost $125 out-of-pocket per vial. With both of us — and our four pets — depending heavily on Ky's weekly $649 unemployment check, such medical expenses proved difficult. And as of Sept. 6, those unemployment checks ran out.
"I'm absolutely stressed. I don't know what to do," Ky said in August as we tried to find a solution.
Because of Ky's physical transition as a transgender woman, her body doesn't make the testosterone it once used to. So, without the medication, she would essentially go through menopause. A decline in estrogen levels can also cause transgender women to lose the physical transitions they've achieved, resulting in gender dysphoria, which is psychological distress from the mismatch between their biological sex and their gender identity.
Unfortunately, Ky's experience is shared by many other transgender Americans. The COVID-19 pandemic has caused millions of people to lose their jobs and private health insurance, particularly LGBTQ adults, who reported at higher rates than non-LGBTQ adults that they lost their jobs during the crisis. Consequently, enrollment surged in ACA plans and Medicaid, the state-federal health program for low-income people. Yet many of those plans don't fully cover gender-affirming care, partly because of conservative policies and lack of scientific research on how crucial this care is for transgender patients.
According to a survey by Out2Enroll, a national initiative to connect LGBTQ people with ACA coverage, 46% of the 1,386 silver marketplace plans polled cover all or some medically necessary treatment for gender dysphoria. However, 7% have trans-specific exclusions, 14% have some exclusions, and 33% don't specify.
"It's this whack-a-mole situation where plans for the most part do not have blanket exclusions, but where people are still having difficulty getting specific procedures, medications, etc., covered," said Kellan Baker, executive director of the Whitman-Walker Institute, a nonprofit that focuses on LGBTQ research, policy and education.
Yet even in states such as California that require their Medicaid programs to cover gender-affirming care, patients still struggle to get injectable estrogen, said Dr. Amy Weimer, an internist who founded the UCLA Gender Health Program. While California Medicaid, or Medi-Cal, covers Depo-Estradiol, doctors must request treatment authorizations to prove their patients need the drug. Weiner said those are rarely approved.
Such "prior authorizations" are an issue across Medicaid and ACA plans for medications including injectable estrogen and testosterone, which is used by transgender men, Baker said.
The lack of easy coverage may reflect the fact that injectable estrogen, which provides the high doses of the hormone needed for transgender women to physically transition, isn't commonly used by non-trans women undergoing hormone therapy to treat menopause or other issues, Weimer said.
It also may be because cheaper options, including daily estrogen pills, exist, but these increase the risk of blood clots. Estrogen patches release the hormone through the skin but can cause skin reactions, and many people struggle to absorb enough estrogen, Weimer said. Consequently, many of Weimer's patients wear up to four patches at a time, but Medi-Cal limits the number of patches patients can get monthly.
While such insurance gaps have existed for long before the pandemic, the current crisis seems to have amplified the matter, according to Weimer.
The ACA prohibits discrimination based on race, color, national origin, age, disability and sex in health programs and activities that receive federal financial assistance. The Trump administration significantly narrowed the power of that provision, including eliminating health insurance protections for transgender people.
However, in June 2020, before the Trump regulations could take effect, the Supreme Court ruled in Bostock v. Clayton County, Georgia, that employment discrimination based on sex includes sexual orientation and gender identity.
This landmark decision has served as a crucial tool to address LGBTQ discrimination in many aspects of life, including healthcare. As of July, for example, Alaska Medicaid can no longer exclude gender-affirming treatment after Swan Being, a transgender woman, won a class-action lawsuit that relied in part on the Bostock decision.
The Biden administration announced in May that the U.S. Department of Health and Human Services Office for Civil Rights will include gender identity and sexual orientation in its enforcement of the ACA's anti-discrimination provision. The next month, Veterans Affairs health benefits were expanded to include gender confirmation surgery.
But for now, the pressure is still on patients like Ky to fight for their health benefits.
Anthem spokesperson Tony Felts said Depo-Estradiol is not on the list of covered drugs for its ACA plans, though many of its private employer-sponsored plans cover it.
Because we had one of those ACA plans, Ky had to be persistent. After four months of emails and phone calls — and just before unemployment ran out — Anthem finally authorized her Depo-Estradiol. That brings her out-of-pocket cost to $60 per vial for the next year. It's still expensive for us right now, but we'll find a way to make it work.
"The reality is that trans people are more likely to be in poverty and don't have the time or knowledge to spend four months fighting to get their estradiol like I did," Ky said.
ATLANTA — Sometimes, Pamela Winn isn't sure how to connect with people, even those she loves, like her 9-month-old granddaughter. When the baby is in her arms, "I sit there quietly, and I don't know what to say. What to do," she said, her eyes filling with tears. "My socializing skills are just not there anymore."
On days like these, Winn, who lives south of Atlanta, is haunted by the memory of her 6-by-9-foot prison cell, where she spent eight months in solitary confinement more than 10 years ago. She said she now feels "safest when I'm by myself."
It's a common paradox of solitary confinement, said Craig Haney, a professor of social psychology at the University of California-Santa Cruz. Instead of craving the company of others after release from social isolation, many former prisoners want just the opposite.
"Solitary forces prisoners to live in a world without people," he said. "And they adapt to it."
Research has long shown that solitary confinement — isolating prisoners for weeks, months, years and sometimes decades — has devastating effects on their physical and mental health. Once released, either to the general prison population or to the outside world, they can face a suite of problems, like heart damage and depression. They're often hypersensitive to light, sound, smell or touch. Like Winn, they may struggle to read social cues. People, Haney said, "become a source of anxiety rather than support."
And the coronavirus pandemic may have made the situation worse.
Before the pandemic, the estimated number of people in solitary confinement in the U.S. ranged from 50,000 to 80,000 on any given day, though many advocacy organizations believe counts are underestimated. The Centers for Disease Control and Prevention states that medical isolation — the separation of people with a contagious disease from the rest of the population — should not hinge on solitary confinement. Yet, at the height of the pandemic last year, up to 300,000 incarcerated individuals were in solitary, according to estimates from Solitary Watch and The Marshall Project, non-profits focused on criminal justice.
"Jails and prisons, like many organizations, acted in fear," said Tammie Gregg, deputy director of the American Civil Liberties Union's National Prison Project. "They thought the way to keep people from infecting each other was to simply put them in solitary."
Solitary confinement can serve many goals, from punishment to protection. And it is called many things — protective custody, restrictive or secure housing, administrative or disciplinary segregation, or simply "the Hole."
"The conditions are essentially the same: It's the extreme deprivation of any meaningful social contact," Haney said.
In the so-called Mandela Rules, named for South African leader Nelson Mandela, who was imprisoned for 27 years, the United Nations associates solitary confinement lasting longer than 15 consecutive days with a form of torture. More than half of all U.S. states have introduced or passed some type of legislation restricting or regulating the use of solitary confinement — like limiting the practice for juveniles, for example. But it is still widely used in American jails and prisons.
Inmates in solitary typically live in a small cell for up to 23 hours a day. They have little sensory stimulation, like sunlight. Access to reading materials, educational programming and personal property is limited or nonexistent. Prisoners may get one hour in a recreational yard, an equally isolated area typically enclosed or surrounded by concrete walls, with a secured high window that opens for fresh air.
The isolation can be particularly destabilizing for people with preexisting mental health conditions, often exacerbating underlying issues that cause people to end up behind bars in the first place. "It's a downward spiral," said Haney.
A Florida State University study published earlier this year found that prisoners with mental illness, especially bipolar disorder, severe depression and schizophrenia, were up to 170% more likely to be placed in solitary for extended periods. In many prisons, experts worry, mental health treatment is nonexistent, making matters worse.
But even among people without a history of mental health problems, it may be impossible to predict who is susceptible to the harmful effects of solitary confinement, including suicide.
Pamela Winn, a registered nurse by training, was incarcerated in 2008 and later convicted to a 6½-year federal prison sentence for healthcare fraud. As the now-53-year-old African American woman with red-colored curls sits in her ranch home, her mind goes back to what she said was the darkest time of her life.
When she entered a federal holding facility south of Atlanta, she said, she was a healthy woman. She was also six weeks pregnant. One day, she fell as she was trying to step into a van while shackled. Three months later, she miscarried and was put into solitary confinement for what she was told was medical observation.
After a few months, she was transferred to a municipal prison, where she was placed into solitary again, this time for protection. For a total of eight months, at two facilities, she lived in tiny cells, with iron beds, thin foam mattresses, and metal sinks with toilets attached.
"No window. No mirror. No clock. No concept of time," she said. She was allowed to leave her cell for one hour a day. She could shower three times a week if staffers were available.
In the beginning, she replayed the traumatic memory of the night she lost her baby. Eventually, she joined in when other inmates screamed in their cells.
"I acted out. I threw stuff against the wall. I was angry," she said. Before she went to sleep, she prayed for God to take her. "But I kept waking up."
In Haney's experience, prisoners who develop a strategy to withstand the excruciating loop of idleness have a better chance of surviving. Some individuals force themselves to maintain a routine, to act as if there is a coherence in their life, "even though there isn't," he said.
Winn said she developed a strategy: She would start the day by praying. She would picture what her two teenage sons were doing. She would do sit-ups and mental exercises, like remembering street names. After solitary, she served most of her sentence in a federal prison in Florida and was released in 2013.
Her time in solitary scarred her for life, she said. To this day, she has high blood pressure. Paranoia is a constant companion; her house is surrounded by a solid wooden fence with a security gate, and she has two Rottweilers. Small spaces make her anxious, and she can't tolerate strangers getting too close, such as in a coffee shop line.
While she struggles to connect with her granddaughter, Winn keeps a journal, hoping that one day, when her granddaughter is old enough, she'll understand.
"She can read it and learn about everything that's in my heart and on my mind … if I'm still here, if I'm not here, wherever I am."
Both Haney and Gregg said jails and prisons have alternatives to long-term, extreme isolation. Mentally ill prisoners who engage in disciplinary infractions should be put into a treatment-oriented unit, said Haney.
For someone who acts violently, solitary confinement should be only a short-term solution aimed at acutely de-escalating the outburst, said Gregg. Afterward, those individuals should go to units that provide programming to address the root cause of their behavior. This may mean separation from the general prison population, but less time in total isolation.
A similar model could also apply to prisoners in solitary for their own safety, such as former Minneapolis police officer Derek Chauvin, who is serving a 22½-year-prison sentence for the murder of George Floyd. They could be placed in smaller units with individuals who have undergone a thorough risk assessment, and with access to education and training, Haney said.
Prisoner advocates are hopeful that solitary confinement in the U.S. will eventually be a concept of the past. In April, New York became the first state to codify the U.N.'s Mandela Rules that ban solitary after 15 consecutive days, when the Halt Solitary Confinement Act was signed into law. The legislation will take effect next April.
After Winn's release from prison, she founded RestoreHER, a nonprofit that advocates to end the mass incarceration of women of color, and pregnant people, in particular. She also helped enact laws in Georgia and North Carolina that bar the shackling of pregnant women.
"What I'm doing now gives me some redemption," she said.
The tipping point for Dr. Paula Braveman came when a longtime patient of hers at a community clinic in San Francisco's Mission District slipped past the front desk and knocked on her office door to say goodbye. He wouldn't be coming to the clinic anymore, he told her, because he could no longer afford it.
It was a decisive moment for Braveman, who decided she wanted not only to heal ailing patients but also to advocate for policies that would help them be healthier when they arrived at her clinic. In the nearly four decades since, Braveman has dedicated herself to studying the "social determinants of health" — how the spaces where we live, work, play and learn, and the relationships we have in those places, influence how healthy we are.
As director of the Center on Social Disparities in Health at the University of California-San Francisco, Braveman has studied the link between neighborhood wealth and children's health, and how access to insurance influences prenatal care. A longtime advocate of translating research into policy, she has collaborated on major health initiatives with the health department in San Francisco, the federal Centers for Disease Control and Prevention and the World Health Organization.
Braveman has a particular interest in maternal and infant health. Her latest research reviews what's known about the persistent gap in preterm birth rates between Black and white women in the United States. Black women are about 1.6 times as likely as whites to give birth more than three weeks before the due date. That statistic bears alarming and costly health consequences, as infants born prematurely are at higher risk for breathing, heart and brain abnormalities, among other complications.
Braveman co-authored the review with a group of experts convened by the March of Dimes that included geneticists, clinicians, epidemiologists, biomedical experts and neurologists. They examined more than two dozen suspected causes of preterm births — including quality of prenatal care, environmental toxics, chronic stress, poverty and obesity — and determined that racism, directly or indirectly, best explained the racial disparities in preterm birth rates.
(Note: In the review, the authors make extensive use of the terms "upstream" and "downstream" to describe what determines people's health. A downstream risk is the condition or factor most directly responsible for a health outcome, while an upstream factor is what causes or fuels the downstream risk — and often what needs to change to prevent someone from becoming sick. For example, a person living near drinking water polluted with toxic chemicals might get sick from drinking the water. The downstream fix would be telling individuals to use filters. The upstream solution would be to stop the dumping of toxic chemicals.)
KHN spoke with Braveman about the study and its findings. The excerpts have been edited for length and style.
Q: You have been studying the issue of preterm birth and racial disparities for so long. Were there any findings from this review that surprised you?
The process of systematically going through all of the risk factors that are written about in the literature and then seeing how the story of racism was an upstream determinant for virtually all of them. That was kind of astounding.
The other thing that was very impressive: When we looked at the idea that genetic factors could be the cause of the Black-white disparity in preterm birth. The genetics experts in the group, and there were three or four of them, concluded from the evidence that genetic factors might influence the disparity in preterm birth, but at most the effect would be very small, very small indeed. This could not account for the greater rate of preterm birth among Black women compared to white women.
Q: You were looking to identify not just what causes preterm birth, but also to explain racial differences in rates of preterm birth. Are there examples of factors that can influence preterm birth that don't explain racial disparities?
It does look like there are genetic components to preterm birth, but they don't explain the Black-white disparity in preterm birth. Another example is having an early elective C-section. That's one of the problems contributing to avoidable preterm birth, but it doesn't look like that's really contributing to the Black-white disparity in preterm birth.
Q: You and your colleagues listed exactly one upstream cause of preterm birth: racism. How would you characterize the certainty that racism is a decisive upstream cause of higher rates of preterm birth among Black women?
It makes me think of this saying: A randomized clinical trial wouldn't be necessary to give certainty about the importance of having a parachute on if you jump from a plane. To me, at this point, it is close to that.
Going through that paper — and we worked on that paper over a three- or four-year period, and so there was a lot of time to think about it — I don't see how the evidence that we have could be explained otherwise.
Q: What did you learn about how a mother's broader lifetime experience of racism might affect birth outcomes versus what she experienced within the medical establishment during pregnancy?
There were many ways that experiencing racial discrimination would affect a woman's pregnancy, but one major way would be through pathways and biological mechanisms involved in stress, and stress physiology. In neuroscience, what's been clear is that a chronic stressor seems to be more damaging to health than an acute stressor.
So it doesn't make much sense to be looking only during pregnancy. But that's where most of that research has been done: stress during pregnancy and racial discrimination, and its role in birth outcomes. Very few studies have looked at experiences of racial discrimination across the life course.
My colleagues and I have published a paper where we asked African American women about their experiences of racism and we didn't even define what we meant. Women did not talk a lot about the experiences of racism during pregnancy from their medical providers; they talked about the lifetime experience, and particularly experiences going back to childhood. And they talked about having to worry, and constant vigilance, so that even if they're not experiencing an incident, their antennae have to be out to be prepared in case an incident does occur.
Putting all of it together with what we know about stress physiology, I would put my money on the lifetime experiences being so much more important than experiences during pregnancy. There isn't enough known about preterm birth, but from what is known, inflammation is involved, immune dysfunction, and that's what stress leads to. The neuroscientists have shown us that chronic stress produces inflammation and immune system dysfunction.
Q: What policies do you think are most important at this stage for reducing preterm birth for Black women?
I wish I could just say one policy or two policies, but I think it does get back to the need to dismantle racism in our society. In all of its manifestations. That's unfortunate, not to be able to say, "Oh, here, I have this magic bullet. And if you just go with that, that will solve the problem."
If you take the conclusions of this study seriously, you say, well, policies to just go after these downstream factors are not going to work. It's up to the upstream investment in trying to achieve a more equitable and less racist society. Ultimately, I think that's the take-home, and it's a tall, tall order.
This story is from a partnership that includes KQED, NPR and KHN.
When Billy Lemon was trying to kick his methamphetamine addiction, he went to a drug treatment program at the San Francisco AIDS Foundation three times a week and peed in a cup. If it tested negative for meth, he got paid about $7.
As the pandemic has raged, so has the country's drug epidemic. Health officials have been struggling with methamphetamine and cocaine abuse, in particular, because of a lack of effective treatment for those stimulants.
Listen to Lemon's story and to understand how California's unconventional treatment works.
"For somebody who had not had any legitimate money ― without committing felonies ― that seemed like a cool thing," said Lemon, who was arrested three times for selling meth before starting recovery.
The payments were part of an addiction treatment called contingency management, which gives drug users incentives ― money or gift cards ― to stay off drugs. At the end of 12 weeks, after all his drug tests came back negative for meth, Lemon received $330. For him, it was about more than just the money. It was being told: Good job.
Phebe Cox grew up in what might seem an unlikely mental health danger zone for a kid: tony Palo Alto, California, in the heart of Silicon Valley. But behind its façade of family success and wealth, she said, is an environment of crushing pressure on students to perform. By 2016, when Cox was in middle school, Palo Alto had a teen suicide rate four times the national average.
Cox's family lived by the railroad tracks where many of the suicides occurred. She got counseling. But that option, she told KHN, is not always easily available to teens in crisis — and she and her peers regarded school mental health services as their last choice because of concerns about either confidentiality or anonymity.
A new program, designed largely by the people who use it, provides an alternative. Called Allcove, it offers standalone health and wellness sites to those ages 12 to 25, often on a walk-in basis, at minimal or no cost. Although Allcove is built to support a wide range of physical, emotional and social needs, its overarching goal is to deal with mental health challenges before they develop into deeper problems.
Allcove is yet in its infancy, with two sites just opened in the Bay Area and five more in the pipeline around California. It's modeled on a 15-year-old program in Australia, Headspace, which has 130 such clinics. Headspace has inspired programs in other countries as well, including Jigsaw in Ireland and Foundry in Canada. All of them, including Allcove, also offer online and phone services.
Allcove's core values resonate with Cox, now 19 and a student at Pitzer College in Claremont, California, and one of dozens of young people who have offered advice on the program's structure and services.
"Right away, I knew it was going to be a big thing," Cox said. "I felt pretty helpless as a young teenager, but Allcove is all about the students and the students' needs."
About half of all lifetime mental illness begins by age 14, and 75% before age 25, according to researchers. Yet access to mental healthcare in the U.S. is lacking. According to the National Alliance on Mental Illness, some 30 million adults and children with mental health conditions go without treatment, and 129 million people live in areas with shortages of mental health professionals. A 2017 survey found that Californians were five times more likely to go outside their private insurance network for mental health office visits than for medical or surgical needs.
Allcove meets some of that head-on by providing fully staffed safe spaces for teens and young adults to discuss and deal with their health, both mental and physical, along with substance misuse issues and educational support. California law allows those 12 and older to get outpatient mental health or counseling services without a guardian's consent.
Allcove's sites in Palo Alto and San Jose are filled with vibrant colors and plenty of open space, the result of input by a youth advisory group that numbers a dozen or more members and changes out about once a year. Inside Allcove, clients can access group or individual care, ask a doctor about a problem, and even get help preparing for college.
Unlike the Australian program, Allcove has no ongoing funding source yet. Allcove is "a really big lift, and we [at the state level] want to say, 'How can we help you?'" said Toby Ewing, executive director of the California Mental Health Services Oversight and Accountability Commission, which administers the fund that seeded the first two sites with $15 million.
Funding eventually may come from a combination of state, private and nonprofit sources, as well as Medi-Cal reimbursements, said Dr. Steven Adelsheim, a psychiatrist who directs Stanford University's Center for Youth Mental Health and Wellbeing.
Adelsheim previously spent nearly 30 years in New Mexico, helping that state build a network of school-based health centers. His experience convinced him that many students were likely to avoid mental health services at school. They were reluctant, he said, to discuss such issues with their own counselors, who might be the same people writing the students' letters of recommendation for college and might unwittingly breach privacy.
That realization led Adelsheim in 2014 to get exploratory funding from the Robert Wood Johnson Foundation to create Allcove. (KHN, which produces California Healthline, also receives funding support from the foundation.) "There is a crying need in the U.S. to reach kids with early intervention and help," Adelsheim said.
The idea struck a chord with Santa Clara County officials, who'd seen Palo Alto lashed by teen suicide clusters during the 2009-10 and 2014-15 school years. "The saddest part of the story is that a teen didn't reach out earlier, didn't have the opportunity to get help when and where they needed it," County Supervisor Joe Simitian said in announcing Allcove's opening in June. "The appeal of the Allcove model is it's designed to engage young people who are struggling, long before they hit a crisis point."
When Cox moved from middle school to Palo Alto's Henry M. Gunn High School, her therapist told her about Adelsheim's project and suggested Cox apply to be part of Allcove's youth council. One of Cox's contributions was to suggest weekday hours extending at least to 7 p.m., "because young adults are doing things and on the move all day. It's the evenings — and even the weekends — when we're dealing with things or feeling more helpless. For a lot of my friends, at night is when things can get overwhelming."
Both Foundry, the Canadian program, and Allcove address physical health as well. Steve Mathias, CEO of Foundry, said his program's emphasis is "on health and wellness, not just mental health, which is a part of wellness." Said Adelsheim, "Sometimes a kid may come in with a physical complaint, and only after a few visits is the mental suffering brought out into the open." When that happens, Allcove can make a "warm handoff" to a mental health specialist on-site.
The most significant difference between Headspace and Allcove may be funding. Headspace is part of the Australian government's mental health initiative, and thus budgeted. Allcove is essentially building on the fly, and its long-term ability to grow will depend on money.
California's Proposition 63, written in 2004 by then-Assembly member Darrell Steinberg (now the mayor of Sacramento), levies a 1% tax on personal incomes over $1 million to fund community mental health services. This year, the tax may yield $2.4 billion, Ewing said. Most of that goes to existing programs, but about 5% each year — more than $100 million in 2021 — feeds an innovation fund to encourage new approaches to mental health.
Santa Clara County got $15 million from that fund to launch Allcove. The state also has helped fund Allcove sites, in Sacramento, San Mateo and Orange counties, and two in Los Angeles County.
"We've made a $30 million-plus investment in this model," Ewing said. "We are assuming that it's going to be successful."
Success, say Adelsheim and Cox, would mean the establishment of hundreds of Allcove centers up and down the state, readily available to young people. The hope is that, if it catches on, Allcove could become a well-known brand for young Californians — and, eventually, others around the country.
Groups representing the nursing profession say "students should be vaccinated when clinical facilities require it" to complete their clinical training.
This article was published on Monday, October 4, 2021 in Kaiser Health News.
Kaitlyn Hevner expects to complete a 15-month accelerated nursing program at the University of North Florida in Jacksonville in December. For her clinical training this fall, she's working 12-hour shifts on weekends with medical-surgical patients at a hospital.
But Hevner and nursing students like her who refuse to get vaccinated against COVID-19 are in an increasingly precarious position. Their stance may put their required clinical training and, eventually, their nursing careers at risk.
In early September, the Biden administration announced that workers at healthcare facilities, including hospitals and ambulatory surgery centers, would be required to receive COVID vaccines. Although details of the federal rule won't be released until October, some experts predict that student nurses doing clinical training at such sites will have to be vaccinated, too.
Groups representing the nursing profession say "students should be vaccinated when clinical facilities require it" to complete their clinical training. In a policy brief released Monday, the National Council of State Boards of Nursing and eight other nurse organizations suggested that students who refuse to be vaccinated and who don't qualify for an exception because of their religious beliefs or medical issues may be disenrolled from their nursing program or be unable to graduate because they cannot fulfill the clinical requirements.
"We can't have students in the workplace that can expose patients to a serious illness," said Maryann Alexander, chief officer for nursing regulation at the national council. "Students can refuse the vaccine, but those who are not exempt maybe should be told that this is not the time to be in a nursing program."
"You're going to go into practice and you're going to be very limited in your jobs if you're not going to get that vaccine," Alexander said.
Hevner, 35, set to finish her clinical training in early October, said she doesn't feel it's acceptable to benefit from a vaccine that was developed using fetal cells obtained through abortion, which she opposes. (Development of the Johnson & Johnson COVID vaccine involved a cell line from an abortion; the Pfizer-BioNTech and Moderna mRNA vaccines were not developed with fetal cell lines, but some testing of the vaccines reportedly involved fetal cells, researchers say. Many religious leaders, however, support vaccination against COVID.)
With vaccines for nursing students still optional in many healthcare settings, nursing educators are scrambling to place unvaccinated students in healthcare facilities that will accept them.
Down the coast from Jacksonville in Fort Pierce, Florida, 329 students are in the two-year associate degree nursing program at Indian River State College, said Roseann Maresca, an assistant professor who teaches third-semester students and coordinates their clinical training. Only 150 of them are vaccinated against COVID, she said.
Not all of the eight medical facilities that have contracts with the school require student nurses to be vaccinated.
"It's been a nightmare trying to move students around this semester" to match them with facilities depending on their vaccination status, Maresca said.
Commonly, healthcare facilities have long required employees to be vaccinated against various illnesses such as influenza and hepatitis B. The pandemic has added new urgency to these requirements. According to a September tally by FierceHealthcare, more than 170 health systems mandate COVID vaccines for their workforces.
In May, the federal Equal Employment Opportunity Commission made it clear that under federal law employers can mandate COVID vaccinations as long as they allow workers to claim religious and medical exemptions.
Under the Biden administration's COVID plan, roughly 50,000 healthcare facilities that receive Medicare or Medicaid payments must require workers to be vaccinated. Until the administration releases its draft rule in October, it is unclear how nursing students assigned to healthcare sites for clinical training will be treated.
But the federal rule published in August that lays out regulations for government hospital payments in 2022 offers clues. It defined healthcare personnel that should be vaccinated as employees, licensed independent contractors and adult students/trainees and volunteers, said Colin Milligan, director of media relations at the American Hospital Association.
In addition to staff members, the Biden plan says mandates will apply to "individuals providing services under arrangements" at healthcare sites.
A spokesperson for the Centers for Medicare & Medicaid Services declined to clarify who would be covered by the Biden plan, noting the agency is still writing the rules.
Nonetheless, vaccination mandates threaten to derail the training of a relatively small proportion of nursing students. A recent survey by the National Student Nurses' Association reported that 86% of nursing students and 85% of new nursing graduates who responded to an online survey said they had been or planned to be vaccinated against COVID.
But the results varied widely by state, from 100% in New Hampshire and Vermont on the high end to 63% in Oklahoma, 74% in Kentucky and 76% in Florida on the low end. The survey had 7,501 respondents.
Students who don't want to be vaccinated are asking schools to offer them alternatives to on-site clinical training. They suggest using life-size computer-controlled mannequins or computer-based simulations using avatars, said Marcia Gardner, dean of the nursing school at Molloy College in Rockville Centre, New York.
Last year, when the pandemic led hospitals to close their doors to students, many nursing programs increased simulated clinical training to give nursing students some sort of clinical experience.
But that's no substitute for working with real patients in a healthcare setting, educators say. State nursing boards permit simulated clinical study to varying degrees, but none allow such instruction to exceed 50% of clinical training, said Alexander. A multisite study found that nursing students could do up to half their clinical training using simulation with no negative impact on competency.
The policy brief by the council of state nursing boards states that nursing education programs "are not obligated to provide substitute or alternate clinical experiences based on a student's request or vaccine preference."
As more nursing students become vaccinated, the issue will grow less acute. And if the Biden plan requires nursing students to be vaccinated to work in hospitals, the number of holdouts is likely to further shrink.
Hevner, the University of North Florida student, said she's not opposed to vaccines in general and would consider getting a COVID vaccine in the future if she could be assured it wasn't created using aborted fetal cells. She filed paperwork with the college to get a religious exemption from vaccine requirements. It turned out she didn't need one because Orange Park Medical Center, where she is doing her clinical training, doesn't require staffers or nursing students to be vaccinated against COVID "at this time," said Carrie Turansky, director of public relations and communications for the medical center, in Orange Park, Florida.
Although Hevner opposes getting the vaccine, "I take protecting my patients and protecting myself very seriously," she said. She gets tested weekly for COVID and always wears an N95 mask in a clinical setting, among other precautions, she said. "But I would ask: Do we give up our own religious rights and our own self-determination just because we work in a healthcare setting?"
She hopes the profession can accommodate people like her.
"I'm concerned because we're in such a divisive place," she said. But she is eager to find a middle ground because, she said, "I think I would make a really great nurse."