Little-Known Illnesses Turning Up in Covid Long-Haulers

KFF Health News, June 1, 2021

Through her own research, Dr. Elizabeth Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS.

This article was published on Tuesday, June 1, 2021 in Kaiser Health News.

By Cindy Loose

The day Dr. Elizabeth Dawson was diagnosed with covid-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened.

This story also ran on Time. It can be republished for free.

Dawson is among what one doctor called “waves and waves” of “long-haul” covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-covid newcomers. For some, the consequences are life altering.

Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances.

Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.

Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow. It is a serious condition — not merely feeling lightheaded on rising suddenly, which affects many patients who have been confined to bed a long time with illnesses like covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before covid, an estimated 3 million Americans had POTS.

Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S.

Other doctors, however, have studied and treat POTS and similar syndromes. The nonprofit organization Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients and agreed to be on the list.

In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later.

Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.

Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul covid patients with POTS, and every long-covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.

“Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of a recent paper on CFS triggered by covid.

The prevalence of POTS was documented in an international survey of 3,762 long-covid patients, leading researchers to conclude that all covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.”

A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent statement.

Lauren Stiles, who founded Dysautonomia International in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.”

On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later.

Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-covid conditions. Requests for proposals have already been issued.

“There is hope that this miserable experience with covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not.

Long-term symptoms are common. A University of Washington study published in February in the Journal of the American Medical Association’s Network Open found that 27% of covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over.

The most common complaint: persistent fatigue. A Mayo Clinic study published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems.

Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.”

Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe covid symptoms.

Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological.

The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms. For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.”

It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating.

The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including fludrocortisone, commonly prescribed for Addison’s disease, that can improve symptoms. Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not.

Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions.

Medical progress, she added, is everyone’s best hope.

Stiles, whose organization funds research and provides physician and patient resources, is optimistic.

“Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand covid and post-covid syndrome in record time.”

Mississippi's Black Communities Turned Around Their Covid Rates. Next Up: Make Strides on Vaccines.

KFF Health News, June 1, 2021

Mississippi had already narrowed an outsize gap in covid-19 incidence and mortality rates for its Black residents, leveraging community partnerships to promote masks and physical distancing while dispelling rumors.

This article was published on Sunday, May 30, 2021 in Kaiser Health News.

By Michaela Gibson Morris

At its first pop-up vaccination event on April 10, the Northeast Mississippi Coalition Against Covid 19 gave shots to nearly 40 people in Shannon, a town where roughly 60% of some 1,800 residents are African American.

This story also ran on NBC News. It can be republished for free.

Though a fraction of the doses typically given out at large mass vaccination sites, the event was a success, say organizers — a coalition of health care providers and elected officials. Held outdoors, it allowed for a physically distant, communal atmosphere that many have missed over the past year.

“People would get their shot, and then say, ‘I’m going to get my wife or my daughter,’” said Dr. Vernon Rayford, a Tupelo internal medicine physician and coalition member.

The group has held two more events and administered a total of 110 doses, Rayford said. More pop-ups are scheduled.

Mississippi had already narrowed an outsize gap in covid-19 incidence and mortality rates for its Black residents, leveraging community partnerships to promote masks and physical distancing while dispelling rumors. Now health advocates hope to stretch those partnerships to help ensure vaccines reach all Mississippians equally.

It appears to be working. Vaccine rates are neck and neck among Black and white residents, with available state data showing a slightly higher rate for whites and Centers for Disease Control and Prevention data showing the opposite. Mississippi is one of the few states where the Black rate isn’t lagging significantly behind the rate for whites.

And as of mid-May, African Americans, who make up 38% of the state’s population, are getting 40% of the doses given each week, said state epidemiologist Dr. Paul Byers.

“We continue to reach parity with our doses,” Byers said during a May press conference.

This is the latest phase of Mississippi’s dramatic turnaround on covid among its Black residents.

In the first four months of the pandemic, the incidence of covid was almost three times higher for African Americans than whites — 1,131 cases per 100,000 for Black Mississippians compared with 403 cases per 100,000 for whites. Mortality in those first months was almost twice as high for African Americans — 46.2 per 100,000 compared with 24.6 per 100,000 for whites, based on an analysis of weekly covid reports published by the Mississippi State Department of Health.

“Covid revealed what many already knew in the public health community: that the inequities in Black and brown communities have existed for a long time,” said Victor Sutton, who directs the state health department’s preventive health and health equity division.

That disproportionate toll on Black Mississippians started to wane, though, as covid cases began a rapid climb in the state and the rest of the country in the fall. Public health officials saw per capita rates of infection and deaths for African Americans drop below the rates of the white population. Through the peak of the holiday covid wave in mid-January, the infections and deaths rose for both groups, but the rates for African Americans remained lower than for whites.

State health department officials pointed to outreach through churches, historically black colleges and universities and community organizations that reinforced the importance of masking and physical distancing among African Americans. Efforts were also underway to reach other underserved groups, including Hispanics across the state, Native Americans in eastern Mississippi and Vietnamese communities on the Gulf Coast.

While Mississippi was among the first states to drop its mask rules, the groups hit hardest by the pandemic were more open to masking and physical distancing than the overall population, health officials said.

“It didn’t get political in the African American community,” Rayford said.

In Tupelo, the Temple of Compassion and Deliverance’s Bishop Clarence Parks was among the Mississippi clergy who used his pulpit both in his church and on Facebook. He lost his 91-year-old mother to covid on April 9, 2020. Hers was among the first cases diagnosed in Tupelo.

“It did give me a sense of urgency,” Parks said. “I saw what covid was doing.”

In addition to moving church services online and into the parking lot, Parks made a point to talk to his congregation about how to protect themselves, their parents and grandparents from covid. As small groups came back inside the church, masks were required. He talked to other pastors about safeguarding their flocks. Parks, 61, posted on Facebook when he got his covid vaccine.

In his congregation of 400, Parks estimates about 15 became infected with covid.

“My mom is the only one in our church who passed from covid,” Parks said.

Mississippi Valley State University, a historically Black school in Itta Bena, a town in the Mississippi Delta, hosted drives to distribute masks and information on protective measures, plus hosted Zoom community meetings to reach beyond its campus boundaries.

“We’re trying to focus on the Delta,” said La Shon Brooks, chief of staff and legislative liaison for the Mississippi Valley president.

Parity on vaccines, though, got off to a slow start. When supply was limited and appointments were snapped up in minutes in February, African Americans were receiving about 15% of the vaccines distributed through the state health department. As more vaccine became available, the department started sending thousands of doses to community health centers and clinics serving large minority populations, said State Health Officer Dr. Thomas Dobbs.

“We want to make sure we‘re addressing trust and access issues,” Dobbs said during a February press conference.

In southwestern Mississippi, Alcorn State University, a historically Black school, organized a vaccine clinic in partnership with the state health department and local county emergency management agency. Located in a rural county with the closest hospitals about 45 minutes away by car, the university has attracted between 160 and 200 Mississippians to each drive-in clinic session. The organizers even made walk-up appointments available to reach students and staff members on campus.

“We’re drawing a wide range of ages and races,” said Jennifer Riley Collins, Alcorn State’s covid response coordinator.

In recent weeks, the state health department has increased efforts to partner with community groups on smaller vaccination events and to reach the homebound. They are also working to direct the public to pharmacies and clinics offering the vaccine.

Health advocates remain concerned that more Mississippians of all races and ethnicities need to be vaccinated or the state risks another wave of infections that could overwhelm health care resources.

In survey results released in mid-May, the Mississippi State Health Department, which polled 11,000 state residents across all 82 counties between December and March, found that 73% were likely to take the vaccine, but as of Thursday only 33.7% of the state’s residents had rolled up their sleeves for at least one dose, according to CDC data. Nationwide, the rate was 49.9%.

Among African Americans, the survey found 56% intended to get vaccinated, compared with 80% of white Mississippians.

“We’re still at risk,” Dobbs said. “We still have a large part of the population that is still vulnerable.”

Even as racial equity in vaccine distribution has improved, closing the gap among the still hesitant and skeptical remains a significant challenge to achieving widespread immunity.

Health care workers, ranked as top vaccine influencers in the health department survey, will need to switch out of their traditional role of giving monologues and engage instead in a dialogue to understand what is preventing the unvaccinated from getting the shots, said Dr. Jeremy Blanchard, chief medical officer for Tupelo-based North Mississippi Health Services.

“We need to listen more effectively,” Blanchard said.

Opioids like 'Lean' Permeate Hip-Hop Culture, but Dangers Are Downplayed

KFF Health News, May 28, 2021

Drug use in the hip-hop community has an ever increasing presence that is intertwined with the music – and one with dire consequences.

This article was published on Friday, May 28, 2021 in Kaiser Health News.

By Chaseedaw Giles

Nykerrius Williams knows about the close relationship between hip-hop and opioid use. Williams, 27, an independent rapper from Gibsland, Louisiana, who goes by the name Young Nyke, took oxycodone pills for the first time when he was 16 and has continued patterns of misuse of those pills, as well as Lortabs, Xanax and codeine cough syrups, until recently. To him, it's part of the business.

"If you ain't rapping about being on no drugs, or you out here in the streets selling some drugs," he said of his chosen profession, "you ain't got some of that going on — like, don't nobody wanna hear what you talking about."

This snapshot of Williams' hip-hop life doesn't seem all that different from that of musicians of other genres for whom the mix of drugs and addiction is a recurring storyline, claiming the lives of artists like Janis Joplin, found dead of a heroin overdose in 1970, and rapper DMX, who died last month.

But drug use in the hip-hop community has an ever increasing presence that is intertwined with the music – and one with dire consequences. The catchy lyrics suggest that opioid misuse is part and parcel with fame and wealth, just a normal, and innocuous, component of that life.  

Coverage on the abuse of hard drugs in the community usually focuses on tragedy surrounding certain popular rappers rather than the lyrics and the culture they create. And while public health experts take great pains, for example, to criticize and curtail the promotion of vaping to young people, little attention is paid to the dangerous effects that hip-hop is having on vulnerable listeners by normalizing popping Percocets or drinking cough syrup.

From big cities like Los Angeles to rural towns like Gibsland — population 878 — opioid misuse among some young, hopeful listeners is about emulating their favorite rap star's enviable image. For others, it is not all about the high life. It's self-medication.

"Let's talk about pain," said Mikiel Muhammad, 38, aka King Kong Gotcha, a member of the rap trio The Opioid Era in Virginia. "The pain is so deep. They ain't got money to go see a psychiatrist, but they got money to go get a Perc-10. They got $10, $15 for that," Gotcha said, referencing the street value of a 10-milligram Percocet tablet.

According to a February KFF report, anxiety, depression and thoughts of suicide have increased for young adults in the past year.

Artists like Young Nyke sometimes confront neighborhood and family violence, as well as a general lack of opportunities and resources in their communities — circumstances amplified by the COVID pandemic. The poetic words detailing the rappers' experience offer some support. But these phrases can also be fraught.

It's not just the drug use that is worrisome, said Naa-Solo Tettey, an associate professor of public health at William Paterson University in Wayne, New Jersey. Often these songs promote using opioids while engaging in high-risk activities like unprotected sex or speeding and, while she is a hip-hop fan, "from a public health perspective, it's just dangerous," she said.

That toxicity reaches into populations already plagued by perpetual cycles of poverty, poor health and lowered life expectancy. There is a need for "culturally relevant interventions" to educate and raise awareness within the hip-hop music audience, which Tettey's research categorizes as primarily composed of youth from "vulnerable and socially disadvantaged" groups.

It is time to turn a critical eye to how opioid misuse permeates hip-hop's lyrics, creating an entryway for Black young adults into the American opioid epidemic, said Tettey.

In 2017 that epidemic was declared a national public health emergency, with over 47,000 opioid-related overdose deaths reported. Researchers at the Centers for Disease Control and Prevention say fatal drug overdoses nationwide have surged roughly 20% during the COVID pandemic, killing more than 83,000 people in 2020. Within this grim statistic the Substance Abuse and Mental Health Services Administration has found inequities.

According to a 2020 report from the Department of Health and Human Services' Office of Behavioral Health Equity and SAMHSA, attention to this crisis has focused more on white suburban and rural communities, even though Black communities are experiencing similar dramatic increases in opioid misuse and death. The report also found that synthetic opioids, like fentanyl, are affecting opioid death rates among Black people more severely than other populations.

A 2020 SAGE journal research paper found a large increase in prescription opioid overdose deaths among Black people. The paper also found the rate of death almost tripling between 1999 and 2017. In February 2018 the U.S. surgeon general tweeted a warning that trends in opioid misuse "may be a precursor to even more opioid overdose fatalities in the black community in coming years."

"The music industry, all it does is perpetuate whatever's going on outside," said Jarrell Gilliard, 40, explaining the pharmaceutical drug presence he's encountered and how it's reflected in popular lyrics. "How they pump these pills and all these prescribed medicines through the streets. Once the streets got 'em …" said Gilliard, whose hip-hop alias is Grunge Gallardo.

Grunge is also a member of The Opioid Era, named for their gritty, raw imagery and lyrics. Songs such as "Suboxones," "Sackler Oath" and "Overdose," which opens with a haunting 911 recording of a woman frantically pleading for help with one, contrast sharply with the pill-laced tunes of hip-hop's mainstream.

"I think that's the most dangerous thing about it," said Richard Buskey, 42, who completes The Opioid Era trio as Ambassador Rick. "It's a disconnect between the youth and them realizing that they're in the same category as what they would consider a junkie or a fiend."

Tettey said that's partly because mainstream artists represent a lifestyle many young adults want for themselves, which can translate into modeling behaviors like opioid misuse.

Feeling the 'Lean'

Patrick Williams, 26, an independent rapper from Orange, Texas, with the stage name PatvFoo, is no stranger to addiction.

He was 21 when he first sipped "lean" — a drink made from mixing prescription cough syrup containing the antihistamine promethazine and the opioid codeine with soda, Jolly Rancher candies and ice, served in doubled-up Styrofoam cups. "It's a variety of colors that you have," PatvFoo said, referencing the various formulations of codeine cough syrups. Purple syrup ranks as most potent. PatvFoo learned about lean through the Texas rap scene and artists like DJ Screw and then became a user.

"At first, there's a mellowing high," said Stevie Jones, 23, also known as Prophet J, an independent rapper in Louisville, Kentucky. He has similar recollections from his first time misusing codeine syrups. He and his friends drizzled some on a blunt — the slang term for a hollowed-out cigar filled with pot. "It just makes it burn slower — like, get you a little bit higher, I guess," Prophet J said.

Things can take a bad turn quickly. Although lean is one of the weaker opioids, experts say it is highly addictive, and often in a short time. "The day you go without it you get bad, bad stomach cramps. You feel like you got to just throw up all the time. You sweating. It's like you got a bad flu," PatvFoo said.

That flu-like feeling is opioid withdrawal, said Dr. Edwin C. Chapman, a Howard University College of Medicine alum who has practiced internal and addiction medicine in Washington, D.C., for more than 40 years. The symptoms range from runny nose and eyes to diarrhea and usually can be stopped with a gulp of cough syrup or lean, he said.

And there's a harsh reality in that. Whether it's Percocet pills or lean, "it's all in the same class as heroin and fentanyl," Chapman said.

But learning that opioid use is promoted in popular music came as a revelation to Chapman. "That's not the music that I listened to," said the 75-year-old doctor. The medical community, he said, has been focused on curbing the overprescribing of pain medication. "But it's never talked about … that it's being advertised overtly to young folks through music or through the media."

Indeed, abuse of lean, also known as "purple drank" and "sizzurp," has managed to evade the regulatory spotlight while remaining popular and recognizable — so much so that vaping companies distributed nicotine-containing e-liquids resembling the drink and even mimicked the slang term "double cup" in their labeling. These products triggered a 2019 Food and Drug Administration crackdown on the vaping juices. The drugs themselves, however, still pump through the streets, just like the hip-hop lyrics.

And it has altered the market, moving it beyond the street options of heroin and opioids, said hip-hop artist Buskey. "We living in the times where they're getting it out of the medicine cabinet."

Phillip Coleman, 34, a rapper in Rochester, New York, who goes by the name GodclouD, started using at age 15 after being prescribed 5-milligram tablets of Percocet following wisdom tooth extraction. That set him on a path to misusing prescription painkillers, which led to cocaine and then a heroin addiction that eventually landed him in prison.

Fortunately, Coleman was able to overcome his addictions in rehab and refocus on family and music. He cautions that people buying Percocet or other prescription pills on the street have no way of knowing if they are legitimate or "just pressed fentanyl." He said the reward for opioid addiction isn't the lifestyles of the rich and famous you see portrayed by some hip-hop artists. "You don't get to trade in your empty bags like the box tops and get, like, a bike or whatever. Like, you don't get no hat; you don't get no fentanyl swag," he chuckled. "Like, you just die."

Chaseedaw Giles: cgiles@kff.org, @cgonsocial

Caring for an Aging Nation

KFF Health News, May 28, 2021

The number of Americans 65 and older is expected to nearly double in the next 40 years. Finding a way to provide and pay for the long-term health services they need won't be easy.

This article was published on Friday, May 28, 2021 in Kaiser Health News.

By Lydia Zuraw and Carmen Heredia Rodriguez  

Healthcare for the nation's seniors looms large as the baby-boom generation ages into retirement. President Joe Biden tacitly acknowledged those needs in March with his proposal to spend $400 billion over the next eight years to improve access to in-home and community-based care.

The swelling population of seniors will far outpace growth in other age groups. That acceleration — and the slower growth in other age groups — could leave many older Americans with less family to rely on for help in their later years. Meanwhile, federal officials estimate that more than half of people turning 65 will need long-term care services at some point. That care is expensive and can be hard to find.

Spending for paid long-term care already runs about $409 billion a year. Yet that staggering number doesn't begin to reflect the real cost. Experts estimate that 1 in 6 Americans provide billions of dollars' worth of unpaid care to a relative or friend age 50 or older in their home.

As the country weighs Biden's plan, here's a quick look at how long-term care works currently and what might lie ahead. Read the KHN coverage here.

In California, Nursing Home Owners Can Operate After They're Denied a License

KFF Health News, May 28, 2021

Studies have found that homes owned by for-profit entities racked up more deficiencies and had lower staffing levels, compared with nonprofit facilities.

This article was published on Friday, May 28, 2021 in Kaiser Health News.

By Aaron Mendelson, KPCC and Elly Yu, KPCC

The pandemic has highlighted poor care in America's nursing homes, where nearly 175,000 people have died of COVID-19 — a third of all deaths from the disease nationwide.

Even before the pandemic, patient advocates pointed to dangerous conditions in U.S. nursing homes, including staffing shortages and infection control failures. Many nursing homes didn't provide quality care, they charged.

Studies have found that homes owned by for-profit entities racked up more deficiencies and had lower staffing levels, compared with nonprofit facilities. And as the number of for-profit nursing home chains has increased, industry watchdogs and patient advocates say, states aren't doing enough to vet nursing home owners.

California is home to about 1,200 licensed nursing homes. Those facilities care for 100,000 nursing home patients — the biggest nursing home population of any state. For those fragile and vulnerable residents, the situation is fraught: A KPCC investigation found that under state regulations nursing home operators can continue running facilities even after they've been denied a state license.

Cynthia Carrillo learned about this obscure regulatory loophole after the tragic death of older brother David Carrillo, who caught COVID-19 while living in a Southern California nursing home. Cynthia, 58, lives in Rancho Cucamonga, California.

David had Down syndrome and until late 2019 lived with Cynthia and her family. On Christmas Day 2019, Cynthia noticed David wasn't acting like himself.

"He was kind of yelling, screaming. And we're like, OK, something's wrong," Cynthia recalled. She said David was afraid to walk down the stairs in their house. Fearful that her brother was having a medical emergency, she took him to a nearby hospital. There, she said, a doctor told her he was developing dementia.

After being discharged, David landed in Villa Mesa Care Center, a nursing home. It was supposed to be a temporary placement while Cynthia looked for a single-story home without stairs, so the family could bring David back to live with them. "It was very difficult to leave him and go home. So, our goal was to be able to get him out as quick as we could," she said.

Cynthia visited every day, but she said she watched his condition deteriorate. She said that before arriving at Villa Mesa, David walked regularly but, afterward, she noticed he was frequently in a wheelchair and wasn't moving around much. In a lawsuit she has since filed against the nursing home, Cynthia claimed that staff members admitted to giving him a psychotropic drug she didn't authorize, which made him drowsy.

By March 2020, Cynthia had decided to place David in a group home — another temporary fix while she continued her house search. Then the pandemic took hold. David remained at Villa Mesa. When Cynthia went to see him on March 30, she was allowed to visit only through a window. She said there was a sign on the door saying no one should enter without a mask, and yet staff members in the room weren't wearing masks.

"It was very hard for us to see that and to see the staff walking around like nothing was going on, you know, regarding the pandemic," Cynthia said.

Ten days later, she was awoken after midnight by a phone call. It was the hospital across the street from the nursing home. David was in respiratory distress and needed to be intubated. The doctor told her he was coherent, but Cynthia couldn't visit her brother. "I couldn't be there with him, to even let him know everything would be OK," she recalled.

She still cries at the memory of that night. "He was probably wondering where I was."

David Carrillo died of COVID a week later, on April 17, 2020. He was 65.

Since the pandemic began, at least 23 residents at Villa Mesa, a 99-bed facility, have died of the virus, according to federal data.

Cynthia still can't drive by the building without getting upset. "There's just too much," she said. "I get angry. I get frustrated."

A Troubled Chain Seeks to Grow

According to state records reviewed by KPCC, Villa Mesa Care Center is connected to a business called ReNew Health. Across California, KPCC found at least 26 facilities connected to ReNew and ReNew's owner, Crystal Solorzano — they stretch from Orange County to the agricultural Central Valley, and as far north as the San Francisco Bay Area. Solorzano owns, or is applying to own, the majority of them; at five of the nursing homes, including Villa Mesa, ReNew has been involved in management or administration.

In April 2020, the California Department of Public Health denied Solorzano licenses for nine nursing homes she had applied to take over.

Villa Mesa was not one of the nine homes. But Cynthia Carrillo said it's still troubling.

"I think [the state] should be able to close it, close them down completely," she said.

According to California regulations, Solorzano's businesses can still operate the nine facilities despite the license denials.

"The approval process, the licensure process is a farce," said Tony Chicotel, an attorney with California Advocates for Nursing Home Reform. He explained that nursing home owners can take over existing facilities without first getting a license from the state, as long as they submit a license application. Those applications can take years to be processed by state authorities.

"It's a really bizarre, completely exploited process," Chicotel said.

In its license denial letters to Solorzano, California's Department of Public Health said it based that decision on a long record of violations at her nursing homes.

At one facility, a patient with schizophrenia was inappropriately discharged and then went missing for two weeks, before being found unconscious in a park, underneath his wheelchair, according to the state. At another, a nursing assistant was charged with raping a 52-year-old woman who had mental health conditions.

The latter incident was classified as a case of "Immediate Jeopardy," the federal government's term for a situation so dire that regulators determine it "caused, or is likely to cause, serious injury, harm, impairment, or death to a resident."

The facilities connected to ReNew and Solorzano provide care for 1 in 50 of the state's nursing home residents, but they are responsible for nearly 1 in 10 Immediate Jeopardies in California since 2019, according to KPCC's analysis. Immediate Jeopardies are the most severe deficiency a nursing home can be cited for by the Centers for Medicare & Medicaid Services.

In addition to considering quality of care, regulators who review change-of-ownership applications also determine whether an "applicant is of reputable and responsible character." They found Solorzano lacking. According to the denial letters, the department's review "revealed that in or around July 2008, you submitted fraudulent documents to obtain your nursing home administrator license," specifically a fraudulent college transcript from Touro College.

Staffers at both Touro College and Touro University confirmed that Solorzano had not received a degree from their institutions.

California's Licensing Process

The situation calls into question the state's ability to ensure nursing home operators provide quality care.

"California has, in a sense, rolled out the red carpet for bad providers," attorney Chicotel argued. "You can get in the building, you can be a squatter, and they can't get you out."

In a statement, a ReNew spokesperson wrote that "Ms. Solorzano is fully qualified to own and operate nursing homes, and in fact has specialized in acquiring troubled facilities and turning them around to preserve and maintain critical bed space that would have otherwise been unavailable during the pandemic."

The statement also said that "Solorzano's only focus is maintaining the health and safety of our employees and residents" and added that during the pandemic "facilities continue to follow infection prevention protocols to protect the health and wellbeing of the residents and staff."

The statement did not respond to the violations mentioned in the state's denial letter or the college transcript that CDPH said is fraudulent, although KPCC raised both in a letter to Solorzano and ReNew.

It also didn't address a series of Instagram stories Solorzano shared that promoted misinformation about coronavirus vaccines, including one that said in its description "the COVID vaccine should be avoided at all costs."

Nearly 200 people have died of COVID-19 in facilities connected to ReNew, according to federal data.

The beds in facilities like these will be needed as California's population ages. Demand for nursing home beds is expected to soar by 2030. When a nursing home must shut down, the process can be extremely disruptive for vulnerable patients, and finding them new places to live can be difficult.

Here's how the California Department of Public Health explains the licensing process: The agency said new owners can enter management agreements with the previous ones while the new owners' license applications are pending. Most applications are approved.

But when CDPH denies them — as it did with nine of Solorzano's — the aspiring owners can continue running the facilities even after the denial, so long as they appeal.

The appeal process can drag on for years.

Advocates are calling for more transparency when nursing homes switch hands. Currently, nursing home owners can acquire facilities without first telling the state. One fix? Making nursing home owners obtain a license before operating a facility, and giving the public an opportunity to comment on any change-of-ownership applications.

A recently introduced bill in California would do just that: require nursing home owners to get licensed before taking over a facility.

The legislation is authored by California Assembly member Al Muratsuchi, a Democrat from coastal Southern California. "For these bad actors to be able to continue to operate without a license, and with a record of past abuses, is simply not acceptable," Muratsuchi said. "The current system is broken. And we need to fix it."

Mark Reagan, general counsel for the nursing home industry group California Association of Health Facilities, takes a different view. "At the end of the day, I don't think that patient care is being compromised," he said. Just because an application is rejected, Reagan said, doesn't mean the state forfeits its regulatory tools. Reagan argues that the slowness of the ownership-change process creates headaches and uncertainty for owners — even though most applications are approved.

The bill to overhaul the licensing process has been pushed back to 2022.

'States Aren't Doing a Good Job'

Nursing home regulation — and payment — is split between the federal government and states. Almost all nursing homes receive some federal reimbursements, and therefore must meet federal requirements, which are overseen by state inspectors. The federal certification process makes payments to nursing homes possible, but states serve as gatekeepers because they grant the actual licenses needed to own and operate nursing homes. The criteria for licensure vary by state.

Patient advocates and health researchers say the licensing process can have life-or-death implications in all 50 states. One problem involves the consolidation of the industry, and the growth of nursing home chains, which can operate across state lines. That complicates the work of state health departments. So does the complex web of LLCs and other corporate entities that make up the modern nursing home business. The corporate webs make it difficult for patients' families and even regulators to figure out who is responsible.

"The growing sophistication of the nursing home industry has enabled some owners to leverage and direct assets in a manner that maximizes profits without meaningful accountability for nursing home quality," according to a March 2020 report from the Long Term Care Community Coalition.

Richard Mollot, the coalition's executive director, said it's time for CMS, the federal agency that oversees nursing homes, to step in. "There's really no federal involvement here. And there clearly needs to be, because the states aren't doing a good job of handling it," he said.

Mollot wants the federal government to create clear standards for vetting nursing home operators, rather than leaving the states in charge. "Those rules are so important," he said. "Literally, residents' lives depend upon it."

Additional oversight is especially needed as new investors move into the nursing home industry, said University of California-San Francisco professor emeritus Charlene Harrington. "Many of the owners are private equity companies, they're real estate companies. They have no expertise in nursing homes," she said.

A 2021 study found that mortality increased in nursing homes after private equity firms took over operations. Harrington has written that CMS does not have accurate or complete data on nursing home ownership, and that federal regulators should increase oversight of nursing home chains, rather than focusing on individual facilities.

Since being denied licenses to take over nine nursing homes in 2020, ReNew Health's Solorzano has applied to take over another facility in California. Her appeals to take over the nine nursing homes are pending, with a hearing set for July. The California Department of Public Health is also seeking to revoke her nursing home administrator license. That hearing has not been set.

At Villa Mesa, where David Carrillo was living before he died of COVID, ReNew Health continued to provide services. David's grieving sister finds that hard to take.

"They don't deserve to manage. Not at all," Cynthia Carrillo said.

The facility received two Immediate Jeopardy violations in October 2020.

Carrillo filed her wrongful death lawsuit against the nursing facility in December 2020. The case is pending.

This story is from a partnership that includes KPCC, NPR and KHN.

Enough to Wreck Their Rest: $10,322 for a Sleep Study

KFF Health News, May 27, 2021

The Office of Inspector General at HHS has identified billing problems for some type of sleep studies that lead to Medicare overpayments.

This article was published on Thursday, May 27, 2021 in Kaiser Health News.

By Michelle Andrews

José Mendoza's snoring was bad — but the silence when he stopped breathing was even worse for his wife, Nancy. The sudden quiet would wake her and she waited anxiously for him to take another breath. If too many seconds ticked by, she pushed him hard so that he moved and started breathing again. This happened several times a week.

Late in 2019, Mendoza, 61, went to an emergency department near the family's Miami home with an excruciating headache. He thought it was related to his high blood pressure, a condition sometimes linked to obstructive sleep apnea. But after a battery of tests, clinicians concluded his obstructive sleep apnea itself was likely causing his headache and cardiac problems. He needed a new CPAP machine, they said.

But first, he had an at-home sleep test. Mendoza's pulmonologist said it was not detailed enough and ordered a visit to an overnight sleep lab to get extensive data.

Mendoza arrived at the sleep center about 8 p.m. one night in early February and was shown into a spacious room with a sofa, a TV and a bed. After he got into his pajamas, a technician attached electrodes to his head and chest to track his brain, heart, lung and muscle activity while he slept. The technician fitted him with a CPAP with two small cannulas for his nose. Despite the unfamiliar setting and awkward equipment, Mendoza slept that night.

After the study, Mendoza started using the same, more comfortable CPAP model he'd used during the study.

"Now I'm not snoring. I feel more energetic. I'm not as tired as I was before," he said.

The new CPAP was helping both Mendozas get a better night's sleep — until the bill came.Bottom of Form

The Patient: José Mendoza, 61, has a Humana HMO plan through the construction company where he works as a truck driver. It has a $5,000 deductible and an out-of-pocket maximum of $6,500 for covered care by in-network providers. Once his deductible is satisfied, he owes 50% in coinsurance for other billed charges. (Nancy Mendoza, who works as a social worker, and their two teenage children are covered under her employer plan.)

Medical Service: An overnight sleep study at a hospital sleep center to determine the type of mask and the proper levels of airflow and oxygen needed in Mendoza's CPAP to treat his severe obstructive sleep apnea.

Total Bill: $10,322, including a $9,853 outpatient charge for the sleep study and a $469 charge for the sleep specialist who interpreted the results. Humana's negotiated rate for the total was $5,419. Mendoza owed the bulk of that: $5,157, including $262 in coinsurance and $4,895 to satisfy his deductible. Humana paid $262.

Service Provider: University of Miami Health System's sleep medicine facility at Bascom Palmer Eye Institute in Miami.

What Gives: Sleep studies are somewhat controversial and have been flagged in the past as being overused. Not everyone who snores needs this evaluation. But with Mendoza's pauses in breathing and hypertension, he likely did.

According to Dr. Vikas Saini, president of the Lown Institute, a think tank that analyzes low-value healthcare, sleep studies fall into a gray zone.

"They are incredibly useful and necessary in certain clinical circumstances," he said. "But it's known to be one that can be overused."

But how much should it cost to be monitored at home or in a hospital sleep lab? That's the question. The Office of Inspector General at the federal Department of Health and Human Services has identified billing problems for the type of sleep study Mendoza had that led to Medicare overpayments.

The University of Miami Health System's total charge was high by nearly every measure, but so was the allowed amount that Humana agreed to pay the health system for the study. And because Mendoza's skimpy health plan has a deductible of $5,000, he's on the hook for paying almost all of that hefty bill.

Mendoza's Humana plan agreed to pay the hospital $5,419 for the sleep study he had. That's nearly six times what Medicare would pay for the same service nationally — $920 — according to the Centers for Medicare & Medicaid Services.

Private insurers typically pay higher rates than Medicare for care, but that multiple is "much higher than what other insurers would pay," said Jordan Weintraub, vice president of claims at WellRithms, a company that analyzes medical bills for self-funded companies and other clients.

Consider the total facility charge of $9,853. The average charge in the United States for a sleep study of the same type is just over half that amount at $5,384, according to Fair Health, a national independent nonprofit that tracks insurance charges.

Charges in the Miami area are on the high end of the national range. The average billed charges for similar hospital sleep studies in Miami range from $2,646 to $19,334, Weintraub said. So Mendoza's bill is not as high as the highest in the area, and is just under the average in Miami.

"Billed charges are just completely fictitious," said Weintraub. "There's really no grounds for charging it other than that they can."

More telling than what other Miami hospitals are charging for sleep studies is what the University of Miami Health System reports it actually costs the hospital to do the procedure. And that figure was just $1,154 on average in 2019, according to WellRithms' analysis of publicly available cost report data filed with CMS. That year, the hospital's average charge for the type of sleep study Mendoza had was $7,886, according to WellRithms.

Mendoza doesn't pay premiums for his health plan, but his "free" coverage has a cost. The $5,000 deductible and high coinsurance leaves him woefully exposed financially if he needs medical care, as the family discovered. Nancy Mendoza's plan has a lower deductible of $1,350, but her employer charges extra to cover spouses who have coverage available to them at their own jobs.

Obstructive sleep apnea is often undiagnosed, sleep medicine experts agree, and sleep studies can result in a diagnosis that leads to necessary treatment to help prevent serious problems like heart attacks and diabetes.

"From that perspective, sleep testing is actually underprescribed," said Dr. Douglas Kirsch, medical director of sleep medicine at Atrium Health in Charlotte, North Carolina, who is past president of the American Academy of Sleep Medicine, a professional group.

After strong growth by independent and hospital-affiliated lab-based sleep centers over several years, there's been a shift toward home-based sleep tests recently, said Charlie Whelan, vice president of consulting for healthcare at Frost & Sullivan, a research and consulting firm.

"The entire sleep medicine field is deeply worried about a future where more testing is done at home since it means less money to be made for in-center test providers," Whelan said.

Resolution: When the bill arrived, Nancy Mendoza thought it must be a mistake. José's home sleep test hadn't cost them a penny, and no one had mentioned their financial responsibility for the overnight test in the lab.

She called the billing office and asked for an itemized bill. There were no complications, no anesthesia, not even a doctor present. Why was it so expensive? But what they received wasn't any more enlightening than the summary bill.

She got a clear impression that if they didn't pay they'd be sent to collections. To avoid ruining their credit, they agreed to a two-year payment plan and got their first installment bill, for $214.87, in April. Nancy thinks the overall charge is too high: "It's not fair [for] people who are in the low end of the middle class."

Lisa Worley, associate vice president for media relations at the University of Miami Health System, said in a statement that Mendoza "does not qualify for financial assistance because he has health insurance."

But the health system's posted financial assistance policy clearly states that financial assistance is available to "underinsured individuals with a balance remaining after third party liability of $1000 or more, whose family income for the preceding 12 months is equal to or less than 300%" of the federal poverty guidelines.

Under a less detailed version of the hospital policy included in one of their bills, the Mendozas meet the income threshold for "assistance provided on a sliding scale."

In her statement, Worley referred to Mendoza's sleep test as an "elective service." The health system website says it "provides financial assistance for emergency and other medically necessary (non-elective) care."

Mendoza's sleep study was medically necessary. The emergency department staff evaluated him and determined he needed a new CPAP to deal with serious medical problems caused by his obstructive sleep apnea. His pulmonologist concurred, as did his insurer, which preauthorized the sleep study.

In a statement, Humana wrote: "With sleep studies, there can be a wide range of costs, depending on the complexity of the case and the setting."

The insurer refused to comment on Mendoza's case specifically, even though the Mendozas had given permission to discuss it.

The Takeaway: The Mendozas followed the rules: They used an in-network provider and got prior authorization from their insurance company for the test.

Unfortunately, they are caught between two financial traps of the U.S. healthcare system: high-deductible health plans, which are increasingly common, and sky-high billing.

With a high-deductible plan, it's crucial to try to learn what you'll owe before receiving nonemergency medical care. Ask for an estimate in writing; if you can't get one, try to shop for a different provider who will give you an estimate.

Be aware that insurance plans that have zero or low premium costs may not be your best option for coverage.

Once you are stuck with a high bill that hits a high deductible, remember you can still negotiate with the hospital. Find out what a more reasonable charge would be and ask for your bill to be adjusted. Also inquire about payment assistance from the hospital — most hospitals must offer this option by law (though they often do not make it easy to apply for it).

If a doctor suggests a sleep study, ask if you can do one at home, and whether it's really needed. And remember: Not every snore is sleep apnea.

Dan Weissmann, host of An Arm and a Leg podcast, contributed to the audio version of this story.

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

Michelle Andrews: andrews.khn@gmail.com, @mandrews110

Confronting Our 'Frailties': California's Assembly Leader Reflects on a Year of COVID

KFF Health News, May 27, 2021

Many Californians have relied on telehealth to connect with their healthcare providers during the COVID-19 pandemic, but the option isn't available to everyone.

This article was published on Thursday, May 27, 2021 in Kaiser Health News.

By Samantha Young

SACRAMENTO, Calif. — When his 20-month-old daughter developed a rash earlier this month, Anthony Rendon did what many other parents do when their child is sick: The speaker of the California Assembly took Vienna to her pediatrician — but he did so via video from the comfort and safety of his home.

Many Californians have relied on telehealth to connect with their healthcare providers during the COVID-19 pandemic, but the option isn't available to everyone. That imbalance is just one of the "frailties" in America's health system that Rendon says lawmakers must address.

"So many folks, when they lose their job, they're in trouble," he said.

A Democrat from Los Angeles County and grandson of Mexican immigrants, Rendon led a nonprofit organization dedicated to early childhood education before his election to the Assembly in 2012. Although he hasn't authored any sweeping bills on healthcare, as leader of the Assembly since 2016 he has influenced which measures get a vote — and which don't.

For instance, though he says he's a single-payer advocate, he angered many progressives four years ago when he blocked a bill that would have provided government-funded healthcare to all Californians. Rendon described the measure, approved by the state Senate, as "woefully incomplete." While that decision drew the ire of the powerful California Nurses Association union — its leader tweeted an illustration of California's iconic grizzly bear logo with a knife in its back inscribed with Rendon's name — some Capitol insiders say Rendon made the strategic decision to take the hit for his members on a politically charged issue that didn't have the votes to pass.

"It's never leadership acting alone," said David Panush, a healthcare policy consultant who worked in state government for 35 years. "They do it on behalf of their caucuses."

Rendon won his post as California's 70th Assembly speaker in part by pledging to allow his colleagues to set their own agendas in their policy committees. Under his leadership, the legislature has approved measures to expand Medicaid coverage to undocumented immigrants ages 19 to 26, protect patients from some surprise medical bills, ban the sale of flavored tobacco products, and require drug companies to report and explain drug price increases. But lawmakers rejected bills that would have taxed sugary drinks and given the state attorney general more authority over hospital consolidations.

After missing nine weeks of work last year when COVID shuttered the Capitol, lawmakers returned to plastic barriers on their desks, mask requirements and other safety measures.

In December, Rendon's colleagues elected him to a third term as speaker. He talked with KHN's Samantha Young about his leadership role during the pandemic and his legislative priorities for the rest of this year.

Q: What did you learn leading this legislative body through a pandemic as a lawmaker, a husband and a dad?

First of all, we're all very fragile and we're all very resilient. It doesn't take much for our various systems to be upset and to change course. At the same time, we adjust, whether it's as a society, as a state, as an institution. In the Assembly, for example, we've almost learned how to do our business in a completely different manner, in the same way that Californians up and down the state have learned to navigate their lives in a different way.

Q: How have you juggled home and work life?

On the one hand, weekends are great. A lot of district events don't happen, my wife can work on her dissertation full time, and I get to take care of the baby from sunup until around dinnertime. Having worked in early childhood education for 20 years, I realize how important the first couple years are. I've spent way more time with her than I thought I would. At the same time, there's been challenges finding safe child care.

Q: What weaknesses did the pandemic expose in the healthcare system, and what can the legislature do about it?

Telehealth is great and can be very helpful but has its limitations. The pandemic really exposed the need for effective broadband throughout the state and broadband equity as well. We used to regard lack of broadband access as a rural issue.

Once we sent schoolkids home, we realized there were more pervasive broadband problems. So, there's absolutely a need to do something big around broadband this year, and that's because of education and also because of healthcare.

Q: You say you're a single-payer advocate, but under your leadership, California's coverage gains have been piecemeal. Why not just go for it and pass single-payer for everyone?

Mostly because of the challenges. First of all, we would need a federal waiver. The Biden administration has already hinted that they won't do so. The president has said time and time again that he wants Obamacare to be expanded.

And there's the huge price tag. There are very, very serious constitutional problems relating to the development and implementation of single-payer.

Q: So, who should get coverage next?

Senior undocumented immigrants are the next big group left. It's a population that obviously has tremendous challenges with respect to access and language. They tend to have a lot of preexisting conditions, a lot of other health challenges as well. So, it's important that we make sure that we cover those folks.

Q: Is there anything you would have done differently, looking back on the past year?

I wish we could have come up with some of the ideas for social distancing and bringing the legislature back more quickly. I think there was a sense early on in March and April [of last year] that the pandemic would run its course more quickly than it did. I remember people saying, "We'll be back in two weeks, we'll be back by midsummer, the pandemic will be gone." So, in terms of developing a lot of those plans, they came to us a little later than I wish they had.

Q: How do you think vaccine distribution is going now that supply is exceeding demand?

I received a phone call from a neighboring district, the president of a community college, who called me up saying, "We have all these vaccines and people have stopped showing up."

We've reached this sort of plateau that's disappointing. We haven't reached this plateau because 90% of people have been vaccinated. It links directly to public health, education and information campaigns. We have to talk about the safety of the vaccine and have validators also talk about the need to get to herd immunity.

Q: Along those lines, local public health departments feel that they have been underfunded for years and that they haven't had the money to do the job in this pandemic. Do you support their request for additional state funding?

We need to make sure that they're adequately funded. There was a problem with respect to the pandemic. We honestly weren't ready for it. As far as these health efforts are concerned, they have to happen at the local level.

The conversation has to go hand in hand with accountability measures and accountability metrics. We're not going to give folks a blank check. We know that there are vast differences in practices that a lot of the public health agencies throughout the state want to pursue, and we want to make sure that best practices are really implemented.

Q: How do you negotiate with influential industries, such as hospitals, pharmaceutical companies and big labor, to get meaningful legislation passed that goes against their interests?

When people boil it down to a simple question of who gives the most money, that's overly simplistic. Look at the incredible amount of work we've done here in California with respect to oil. The enviros do not give as much money to politicians as the oil companies do.

But with respect to having these conversations, we take all of their input, and then the decisions, for me, are informed by what's best for the state.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Samantha Young: syoung@kff.org, @youngsamantha

Minneapolis Police Injured Protesters With Rubber Bullets. The City Has Taken Little Action.

KFF Health News, May 26, 2021

Dozens of people were seriously injured during the protests last summer, leading to lawsuits, promises of reform and calls to ban the use of rubber bullets for crowd control.

This article was published on Wednesday, May 26, 2021 in Kaiser Health News.

By Dennis Wagner, USA TODAY

(Editor's note: This is a follow-up to last year's joint investigation by KHN and USA Today finding that police in several cities violated their own crowd-control policies during protests over racial injustice and police brutality.)

As police in riot gear approached the demonstrators, Soren Stevenson raised his hands like scores of others and called out, "Hands up, don't shoot."

Suddenly, tear gas canisters and rubber bullets rained down.

The demonstrators had gathered for a sixth straight day to decry Minneapolis police officers' use-of-force practices after the slaying of an unarmed Black man named George Floyd.

On May 31, 2020, the protesters were under fire.

Stevenson, a graduate student at the University of Minnesota Humphrey School of Public Affairs, lost his left eye after an officer fired a plastic-tipped round at him — even though Minneapolis Police Department policy bans the use of those munitions against nonviolent people.

According to a federal court complaint that cites video of the incident and witness accounts, Stevenson was unarmed, had committed no crime, posed no threat and was not in a chaotic crowd.

It wasn't an isolated event. Dozens of people were seriously injured during the protests last summer, leading to lawsuits, promises of reform and calls to ban the use of rubber bullets for crowd control.

"This is a moment in time where we can totally change the way our Police Department operates," Minneapolis Mayor Jacob Frey said when the City Council banned chokeholds soon after Floyd's death. "We can quite literally lead the way in our nation enacting more police reform than any other city in the entire country, and we cannot fail."

Nearly a year later, there is scant evidence that Minneapolis has changed how its police officers use less-lethal weapons or strengthened its oversight. Instead, the city may be a study in stymied reform, unenforced policies and a lack of transparency.

The Minneapolis Police Department still has not given the public or the City Council a full accounting of how it responded to last summer's demonstrations. The department has failed to disclose basic facts such as the number of protesters arrested or wounded.

No officers have been disciplined for their actions during the protests. The only discipline related to the protests was meted out to an officer who described the department's toxic culture in a GQ story, despite not being authorized to talk to the media.

"I'm appalled by the behavior of our police during the protests," City Council President Lisa Bender said. "For this to be the department in our city with the least amount of transparency is the opposite of what it should be."

From New York to Portland, an investigation by USA Today and KHN last year found that police violated their own crowd-control policies during protests over racial injustice and police brutality.

Michelle Gross, co-founder of the nonprofit Communities United Against Police Brutality, said she's seen no reform or accountability regarding Minneapolis officers' conduct, including their use of rubber bullets. "I call it 'cop exceptionalism,'" she said. "They do what they want."

The Minneapolis City Council passed a resolution last month calling for an end to the use of rubber bullets, tear gas and other less-lethal rounds. It was merely a "statement of values" with no legal force.

Police Chief Medaria Arradondo rejected the resolution as "unhelpful and uninformed," according to the (Minneapolis) Star Tribune, saying if officers can't use less-lethal weapons they would have only guns and batons to combat demonstrators "who are here to strike harm and chaos and destroy our city."

Council Member Says Police Escalated Tensions

Floyd was killed May 25, 2020, by police during an arrest that was captured on video and seen worldwide.

In a city raw from complaints of officer abuses, outrage exploded into street demonstrations. Police responded with riot squads armed with tear gas and less-lethal firearms that launch 40-millimeter projectiles tipped with hard foam or plastic, commonly called rubber bullets.

For six days and nights, some peaceful demonstrations escalated into arson, looting and chaos, making it difficult for outsiders to sort out whether protesters or police triggered violence.

Steve Fletcher and other City Council members contended officers inflamed crowds with tear gas and rubber bullets. "The community gathered Tuesday night to mourn and express their outrage, peacefully," he tweeted May 28 amid the violence.

"It was bad choices by Minneapolis police officers that escalated the situation to the point that it turned into a prolonged week of action," he said later, according to the Star Tribune.

Officers used about 5,200 less-lethal munitions over six days, according to records provided to USA Today.

Frey told USA Today that officers faced unprecedented conditions in which violent provocateurs mixed with peaceful protesters. "Distinguishing between those two became increasingly difficult," he said.

At least 57 people were injured so severely by less-lethal projectiles that they required urgent care during protests in Minneapolis from May 26 to June 15, 2020, according to the University of Minnesota's medical school.

Of those, 23 were hit in the face or head. Ten were blinded or suffered severe eye trauma. Sixteen suffered traumatic brain injuries.

Minneapolis policy defines a less-lethal weapon as one that "does not have a reasonable likelihood of causing or creating a substantial risk of death or great bodily harm."

The policy says officers may use less-lethal weapons against individuals posing a threat but "shall not deploy 40mm launchers for crowd management purposes." It says shots to the head or neck are potentially deadly and should be avoided.

The study concluded, "Projectiles are not appropriate for crowd control." Years ago, other researchers reached a similar conclusion. But the devices have been marketed for crowd control and, last summer, that's how police across the country used them.

Frey acknowledged seeing videos of officers shooting nonviolent civilians and journalists — sometimes appearing to target the head. Though such conduct is "unacceptable," he said, efforts to enforce policies have been thwarted by procedural requirements, union resistance and litigation.

Asked whether any Minneapolis officer has been disciplined for violating use-of-force policies during the protests, Frey said in April "quite a few cases" were under investigation, but he declined to say how many.

Mychal Vlatkovich, a spokesperson for Frey, said Saturday no discipline has been finalized, and the city can't comment on open investigations.

'We're Getting Hit'

Terry Hempfling, 39, an artist who was raised by activist parents, said protesting injustice is a patriotic duty.

On May 29, she and her friend Rachel Clark joined a crowd near the 3rd Precinct police station. Around 11:30 p.m., police ordered protesters to disperse. Hempfling said she and Clark walked away and were unlocking their bikes when tear gas swirled in the darkness. They were trapped between two lines of police.

Hempfling said she was disoriented, eyes and throat stinging, as Clark blurted out, "We're getting hit." They climbed a fence to escape but not before Hempfling was shot in the back, breast and leg, leaving an expansive bruise that is still discolored.

Hempfling and Clark, who was hit by three projectiles, are among hundreds of plaintiffs in an American Civil Liberties Union of Minnesota lawsuit alleging Minneapolis and state police have "a custom or policy authorizing the deployment of crowd-control weapons and/or less-lethal munitions in an unconstitutional manner."

The ACLU complaint contends departmental restrictions on the use of rubber bullets are not enforced, so officers ignore them with impunity. At least a dozen other lawsuits contain similar allegations.

Stevenson, who seeks $55 million in damages plus court-ordered policing reforms, claims in his suit that a rubber bullet fired by a Minneapolis police officer fractured facial bones, ruptured an eye and caused brain damage. As blood streamed from the wound, at least a half-dozen officers allegedly did nothing to render aid — behavior his lawsuit says was not just a violation of policies but inhumane.

"MPD has allowed its officers to get away with policy and constitutional violations without fear of repercussion for decades," the complaint says.

Ethan Marks alleged he was at a demonstration May 28 with his mother when he was "shot in the eye with a tear gas canister from several feet away." It hit him so hard he was knocked out of his shoes.

Andrew Noel, an attorney who represents Stevenson and Marks, said police have yet to identify the officers who shot his clients, even though they tracked down suspected rioters with video and social media. "If you can locate those folks, you'd better be able to identify the officers involved," Noel said.

Hempfling said she has taken part in more than 100 demonstrations and thought she understood how to exercise her First Amendment rights safely.

"I left feeling like I had no clue what a police officer might do to me, regardless of whether I'm being peaceful," she said.

Attorneys for the city sought to dismiss the ACLU case based in part on a claim that officers faced a "rapidly evolving, violent, and dangerous situation" that required less-lethal force to repel and disperse "unruly individuals."

A federal judge rejected the motion in March, ruling that plaintiffs plausibly allege city officials tacitly authorized police abuses or were indifferent to them.

ACLU attorney Isabella Salomão Nascimento said the Police Department remains in dire need of reform.

"We really hope this litigation will serve as a vehicle for that," she said. "This was an outrageous use of force."

Limited Reforms

In early June 2020, Minnesota's Department of Human Rights filed an emergency action accusing the Minneapolis Police Department of discriminating against people of color.

The city promptly agreed to a restraining order. As part of that deal, the use of rubber bullets against demonstrators is prohibited unless authorized by the police chief or someone he designates.

Vlatkovich, the mayor's spokesperson, said Arradondo authorized use of less-lethal weapons during demonstrations in August.

The court agreement included a provision requiring timely and transparent discipline for officers who violate use-of-force policies. Despite repeated requests from USA Today, neither police nor Frey identified any officer punished for misuse of less-lethal munitions.

Citizen complaints of misconduct and abuse by Minneapolis police nearly tripled during the second quarter of 2020, when the demonstrations took place, according to the Minneapolis Office of Police Conduct Review.

Gross, the community activist, said the data is almost meaningless because residents don't believe police officers are held accountable and seldom bother to report wrongdoing. She serves on an advisory council with the Minnesota Peace Officer Standards and Training agency.

She said she witnessed an officer shoot a nonviolent protester in the face with a tear gas canister during last year's demonstrations, but there was no point in lodging a complaint.

A nurse by profession, Gross referred to the conduct review office as "the place where complaints go to die."

The city has an appointed Police Conduct Oversight Commission, described on the municipal website as an "independent body which assures police services are delivered in a lawful and nondiscriminatory manner." The commission conducts audits but has no power over citizen complaints, officer discipline or law enforcement policies.

An analysis by the Minnesota Reformer, a nonprofit news site, found that fewer than 3% of the commission's cases from 2013 to 2019 resulted in significant discipline of officers. It took an average of 18 months to resolve each case.

The news outlet concluded that the Minneapolis Police Department "is notoriously ineffective at removing bad cops from its ranks" due to a "pattern of mismanagement."

A City Council bid to reorganize the roughly 800-officer Police Department is caught in a power struggle. The council and activists are pressing to let voters decide whether the department should be replaced by a public safety agency under council control.

Frey opposes those efforts and insists he is changing police customs and rules from within.

For example, he said, one new policy says only SWAT units can use rubber bullets for crowd control. It makes an exception if no tactical squad is available.

Frey said he made "overture after overture" to City Council members, asking for suggestions on what to change without receiving any.

Bender, the council president, said she's seen no significant reforms under Frey's leadership. "There is public debate about the use of less-lethal force for crowd control," she said, "but no public decision-making. The mayor and chief make those decisions behind closed doors."

City Won't Say Whether Officers Followed Reporting Policies

The Minneapolis Police Department's policy manual requires officers to file a report each time they discharge a less-lethal projectile. If someone is injured, an officer is required to notify a supervisor, which prompts an inquiry that must be documented.

It is unclear whether officers complied with those policies during May and June 2020. In response to a public records request from USA Today, the department supplied no records other than a spreadsheet summarizing how many munitions were discharged.

Frey said Arradondo compiled "a whole lot of data" about enforcement efforts during the protests. Asked in early April where that information has been disseminated, he said, "I am trying to get it right now, and we're expediting the requests."

Attorneys for shooting victims said the city has turned over few documents in response to their lawsuits, and it has secured protective orders to keep disclosures about police behavior out of public view. Among the records that Minneapolis lawyers want sealed: bodycam videos, internal investigative reports, misconduct reviews and personnel files.

Police agencies commonly seek independent reports that evaluate performance and tactics after major events. Minneapolis did not commission an after-action review of the George Floyd demonstrations until February.

In an email, city spokesperson Casper Hill said the review was delayed because there wasn't money in the budget. The $250,000 study will not be completed until later this year.

Police Officers Nationwide Fired on Protesters

A nationwide survey by the nonprofit Physicians for Human Rights counted 115 demonstrators who suffered head wounds from less-lethal projectiles during last summer's demonstrations. That tally, based on news and social media reports, is believed to be a fraction of the total.

The organization concluded that rubber bullets "are not an appropriate weapon for crowd management" and recommended cities ban such use.

Minneapolis police were particularly aggressive, according to the study, firing more neck and head shots than officers in any other city except Los Angeles, which has roughly 10 times the population.

Though laws and regulations are important, policing experts stress that culture is crucial.

Mike Tusken, chief of police in Duluth and an executive board member with the Minnesota Chiefs of Police Association, said crowd control is difficult because civil disturbances are dynamic and there's no playbook on how to respond.

Though policies set a framework, Tusken said, proper decision-making requires a "culture of discipline" that emanates from training and leadership.

As he watched news across the country last summer, Tusken said, he saw some officers de-escalate tensions, even showing kindness to protesters. A small minority fired on nonviolent protesters.

"Why are they still in policing? Why are they not being held accountable?" Tusken asked. "I'm outraged to see it. The narrative becomes 'All cops: bad.'"

State Rep. John Thompson said the cycle never seems to end.

In 2016, a close friend, Philando Castile, was pulled over by an officer in a Minneapolis suburb and shot five times as his girlfriend's 4-year-old daughter looked on. The officer was acquitted.

At Castile's memorial viewing, Thompson said, he vowed to change things. Four years later, as an elected official, he witnessed officers firing less-lethal projectiles at protesters outside the 3rd Precinct station.

"There were peaceful people there exercising their rights," Thompson said. "There's this big bang from a canister, and rubber bullets are flying everywhere."

Lady Gaga and J.Lo Sell 'Well' Building Seal, But It's a Payday, Not a PSA

KFF Health News, May 26, 2021

A-list celebs are backing something called the Well Health-Safety seal, offered by the International Well Building Institute.

This article was published on Wednesday, May 26, 2021 in Kaiser Health News.

By Michael McAuliff

Viewers could be excused for thinking Robert De Niro was just being a good fella in an ad promoting safe buildings amid the COVID pandemic, along with the likes of Jennifer Lopez, Lady Gaga and Michael B. Jordan. 

De Niro and the other A-list celebs are backing something called the Well Health-Safety seal, offered by the International Well Building Institute. The organization, a for-profit subsidiary of a decade-old real estate service company called Delos, is piggybacking on post-pandemic anxiety to profit by popularizing its healthy building certification program.

"Feeling safe should be a right for all, not a privilege for some," De Niro says in one spot.

What the ad doesn't tell viewers, though, is that the seal itself is something of a privilege that must be bought. Companies pay — sometimes a lot — to be judged on a range of categories. Some relate directly to COVID (such as air quality), but others are less easily measured and have little obvious link to the pandemic (community "connectivities").

And De Niro, plus Venus Williams, Wolfgang Puck and even New Age guru Deepak Chopra, is being well paid to endorse the Well seal in a carefully planned and executed campaign.

"We compensated them for their time," IWBI President and CEO Rachel Hodgdon confirmed in an interview, explaining that the effort was modeled on a green schools campaign she ran several years ago at the U.S. Green Building Council. She declined to specify how much it cost to harness all that star power, or how much the company is spending to air the ads.

A spokeswoman said the spots have run nationally since late January on more than 30 networks, including Bravo, MTV, TBS, FX, Paramount, CNBC and CNN, but said the dollars spent "are confidential."

The cost is certainly substantial. Data from the ad-tracking firm iSpot.tv shows that the institute has spent nearly $500,000 to air six ads.

"What I wanted to do with this campaign was make it very much in the style of a public service announcement," Tony Antolino, the chief marketing officer at Delos, told Ad Age.

But the effort very much services the bottom line of Delos.

Not to be confused with the diabolical corporation of the same name in the HBO series Westworld, Delos was founded in 2009 by former Goldman Sachs partner Paul Scialla with the aim of linking real estate to the health and wellness industry.

The company has raised $237 million from investors, including Bill Gates, according to Forbes.

In interviews, Scialla describes himself as an "altruistic capitalist." He told the Los Angeles luxury lifestyle publication Dreams that he saw "a unique opportunity to merge the world's largest asset class — the $180 trillion worth of real estate — with the world's fastest growing industry — wellness."

Putting together an all-star cast for a for-profit venture took some doing.

"It wasn't a fast process, because each of these celebrities and influencers has a rigorous process through which they filter any opportunity," said Hodgdon, who also got director Spike Lee to ask questions of the famous "ambassadors."

"We went through a pretty intensive process of educating the celebrities and the teams that work with them on why there was heft and legitimacy behind what we were putting out there," she said.

She recalled Lady Gaga saying in one interview, "Look, I really believe in what you all are doing. I said yes to this because I think that this is really important."

Having clean, healthy buildings is undoubtedly important for many. It's especially so for the International Well Building Institute, which is using its seal as a gateway into its broader building certification services.

"What's been exciting for us is that a lot of our customers who are entering in through the Well Health-Safety Rating are now beginning to upsize their commitment to achieve a full-on wellness certification, which is so important," Hodgdon said.

The price for the health seal starts at $2,730 and rises to $12,600. Getting seals for multiple locations or franchises can run up to $166,000. Starter costs are cheaper if a property owner already buys the broader certification service. That starts at about $9,000 and rises to just over $100,000. Additional testing services start at $6,500.

Delos launched the certification standard in 2014 after what the institute says was a rigorous peer-reviewed process. The program is modeled on the U.S. Green Building Council's LEED program, and uses the Green Building Council to verify its work. Hodgdon worked there for a decade before moving to the IWBI, along with the Green Building Council's founder, Rick Fedrizzi.

The certification covers 10 categories, including such easily measured things as air and water quality, sound and temperature, and harder-to-pin-down items such as mental health, community "connectivities," movement and nourishment — all backed, Hodgdon said, by science and study.

Whether meeting all the standards in those categories will also lead to a building's occupants becoming healthier and fulfilled probably will take a long time to prove. The company points to case studies — some done by its own workers and clients — that suggest the holistic approach pays off.

Independent experts — scientists, doctors, engineers, mental and physical health experts, and others — who helped evaluate the initial standard described the concepts as sound.

"They asked provocative questions. They were interested in what experts had to say. I thought it was a pretty good process," said Ellen Tohn, an assistant professor of epidemiology at Brown University who runs an environmental engineering firm and is listed as a peer reviewer.

Still there's no guarantee it actually works. Even the well-regarded LEED program often doesn't live up to its hope and hype.

"It seems rather obvious: Skepticism is in order," said John Scofield, a physics professor at Oberlin College in Ohio who has extensively studied the LEED program.

Scofield noted that there is very little empirical data that can be used to verify the effects of certification programs, since landlords often refuse access to researchers.

"Owners have little to gain by allowing someone to study the performance of their building. They have already garnered the green publicity and marketing that goes with the label," he said.

"In the end, all of these programs, no matter how well-intentioned, turn into marketing and money."

While Delos' program appears to be the most ambitious attempt to create an independent arbiter of building health, there are others, including some run by nonprofits.

Another option for builders less focused on the mind-body connection and more on just air quality is the Environmental Protection Agency's Indoor airPlus certification program.

It's free.

Michael McAuliff: @mmcauliff ‏  

'Better Than the Hospital': Pandemic Boosts Care for Serious Illnesses at Home

KFF Health News, May 26, 2021

A growing number of health systems are offering people with more serious health conditions hospital-level treatment in the comfort of their homes.

This article was published on Wednesday, May 26, 2021 in Kaiser Health News.

By Stephanie O'Neill

Late last year, Janet Yetenekian was one of the thousands of people in Southern California whose case of COVID-19 was serious enough to send her to the hospital. But Yetenekian's recovery was not typical: She received hospital-level care in her own home in Glendale.

"It was even better than the hospital," Yetenekian said, laughing. "They were constantly reaching out — it's time for you to do your vitals, or it's time for you to take your medications."

Yetenekian contracted the virus that causes COVID in December, after friends invited her family to an afternoon barbecue. It seemed like a safe antidote to the isolation caused by the pandemic. But the day after the gathering, the host came down with a fever. A test confirmed it was COVID. Within two weeks, Yetenekian's husband and two teenage children developed mild symptoms. She came down with a more serious case, however, and her blood oxygen plummeted to dangerously low levels.

She went to the hospital at Adventist Health in Glendale, where doctors told her she would need an intravenous infusion of the antiviral drug remdesivir and constant monitoring. And it surprised Yetenekian when her doctor offered to move all her care home to be monitored virtually.

Doctors and nurses at a command center nearly 200 miles away in the San Joaquin Valley town of Hanford, California, managed Yetenekian's care as part of a new federal effort aimed at freeing up hospital beds during public health emergencies. Under the model, about 60 illnesses — including COVID — qualify for home treatment.

"Heart failure, pneumonia, skin infections — those are all patient populations we can safely care for in the home," said Dr. Margaret Paulson, who leads the Mayo Clinic's new home-based care program in rural Wisconsin.

Hospital care at home is nothing new for patients with low-level health needs. But since the pandemic began, a growing number of health systems, including Adventist Health, the Mayo Clinic and Kaiser Permanente (which is not affiliated with KHN) are offering people with more serious health conditions hospital-level treatment in the comfort of their homes.

Paulson said that, once her patients understand home care does not mean less care, they eagerly embrace it.

"Especially for patients who have been in the hospital a lot, to know that they can actually go home and sleep in their own bed and be with their family and have their pets by their side, it's just really reassuring," Paulson said.

And studies suggest at-home care provides better outcomes for patients and costs less to provide than traditional inpatient care.

"This is actually a higher level of touch from physicians and advanced practitioners," said Dr. Kavita Patel, a physician and health policy fellow at the Brookings Institution.

Regular video conferencing and 24/7 monitoring is augmented by twice-daily, in-person visits by nurses and other health workers who provide basic care — such as antibiotics — that can't be given virtually.

"This isn't just sending Mom or Dad to the bedroom," Patel said.

The technology infrastructure is key, Patel said, for patients and doctors. It includes Wi-Fi phones that ring directly into a hospital's command center, iPads that allow videoconferencing with health professionals and wearable devices with emergency call buttons.

Raphael Rakowski is co-founder of Medically Home, a Boston-based technology company that supports at-home programs for Adventist Health. Mayo Clinic and Kaiser Permanente announced on May 13 a combined $100 million investment in Medically Home to help expand the service to other health systems. Rakowski said another selling point of the at-home care model is that there are no facility transfers as patients heal.

"We stay with the patient until they're fully recovered, and that averages anywhere from 20 to 30 days, sometimes longer," he said. "So, we substitute not just for the hospital, but for all the care that follows."

Still, the program is not a good fit for every patient. To be eligible for care at home, patients must live within 30 minutes of emergency care; they also need high-speed internet and, said Patel, they can't be too sick.

"This can't be something where it's so complicated that you are monitoring a patient, worried that they could crash and need to be in the ICU within minutes," she said.

But for moderate COVID and dozens of other conditions, acute hospital care at home is likely to become a more common option as more health systems adopt the program and even more diseases are included. It is offered now in 30 states.

This story is part of a reporting partnership that includes NPR and KHN.

Stephanie O'Neill: ReporterSteph13@gmail.com, @ReporterSteph

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