During the pandemic, home health aides have buttressed the U.S. healthcare system by keeping the most vulnerable patients — seniors, the disabled, the infirm — out of hospitals.
This article was published on Friday, October 16, 2020 in Kaiser Health News.
In March, Sue Williams-Ward took a new job, with a $1-an-hour raise.
The employer, a home health care agency called Together We Can, was paying a premium — $13 an hour — after it started losing aides when COVID-19 safety concerns mounted.
Williams-Ward, a 68-year-old Indianapolis native, was a devoted caregiver who bathed, dressed and fed clients as if they were family. She was known to entertain clients with some of her own 26 grandchildren, even inviting her clients along on charitable deliveries of Thanksgiving turkeys and Christmas hams.
Without her, the city’s most vulnerable would have been “lost, alone or mistreated,” said her husband, Royal Davis.
Despite her husband’s fears for her health, Williams-Ward reported to work on March 16 at an apartment with three elderly women. One was blind, one was wheelchair-bound, and the third had a severe mental illness. None had been diagnosed with COVID-19 but, Williams-Ward confided in Davis, at least one had symptoms of fatigue and shortness of breath, now associated with the virus.
Even after a colleague on the night shift developed pneumonia, Williams-Ward tended to her patients — without protective equipment, which she told her husband she’d repeatedly requested from the agency. Together We Can did not respond to multiple phone and email requests for comment about the PPE available to its workers.
Still, Davis said, “Sue did all the little, unseen, everyday things that allowed them to maintain their liberty, dignity and freedom.”
He said that within three days Williams-Ward was coughing, too. After six weeks in a hospital and weeks on a ventilator, she died of COVID-19. Hers is one of more than 1,200 health worker COVID deaths that KHN and The Guardian are investigating, including those of dozens of home health aides.
Home health providers scavenged for their own face masks and other protective equipment, blended disinfectant and fabricated sanitizing wipes amid widespread shortages. They’ve often done it all on poverty wages, without overtime pay, hazard pay, sick leave and health insurance. And they’ve gotten sick and died — leaving little to their survivors.
Speaking out about their work conditions during the pandemic has triggered retaliation by employers, according to representatives of the Service Employees International Union in Massachusetts, California and Virginia. “It’s been shocking, egregious and unethical,” said David Broder, president of SEIU Virginia 512.
The pandemic has laid bare deeply ingrained inequities among health workers, as Broder puts it: “This is exactly what structural racism looks like today in our health care system.”
Every worker who spoke with KHN for this article said they felt intimidated by the prospect of voicing their concerns. All have seen colleagues fired for doing so. They agreed to talk candidly about their work environments on the condition their full names not be used.
***
Tina, a home health provider, said she has faced these challenges in Springfield, Massachusetts, one of the nation’s poorest cities.
Like many of her colleagues — 82%, according to a survey by the National Domestic Workers Alliance — Tina has lacked protective equipment throughout the pandemic. Her employer is a family-owned company that gave her one surgical mask and two pairs of latex gloves a week to clean body fluids, change wound dressings and administer medications to incontinent or bedridden clients.
When Tina received the company’s do-it-yourself blueprints — to make masks from hole-punched sheets of paper towel reinforced with tongue depressors and gloves from garbage bags looped with rubber bands — she balked. “It felt like I was in a Third World country,” she said.
The home health agencies that Tina and others in this article work for declined to comment on work conditions during the pandemic.
In other workplaces — hospitals, mines, factories — employers are responsible for the conditions in which their employees operate. Understanding the plight of home health providers begins with American labor law.
The Fair Labor Standards Act, which forms the basis of protections in the American workplace, was passed in an era dually marked by President Franklin Delano Roosevelt’s New Deal changes and marred by the barriers of the Jim Crow era. The act excluded domestic care workers — including maids, butlers and home health providers — from protections such as overtime pay, sick leave, hazard pay and insurance. Likewise, standards set by the Occupational Safety and Health Administration three decades later carved out “domestic household employment activities in private residences.”
“A deliberate decision was made to discriminate against colored people — mostly women — to unburden distinguished elderly white folks from the responsibility of employment,” said Ruqaiijah Yearby, a law professor at St. Louis University.
In 2015, several of these exceptions were eliminated, and protections for home health providers became “very well regulated on paper,” said Nina Kohn, a professor specializing in civil rights law at Syracuse University. “But the reality is, noncompliance is a norm and the penalties for noncompliance are toothless.”
Burkett McInturff, a civil rights lawyer working on behalf of home health workers, said, “The law itself is very clear. The problem lies in the ability to hold these companies accountable.”
The Occupational Safety and Health Administration has “abdicated its responsibility for protecting workers” in the pandemic, said Debbie Berkowitz, director of the National Employment Law Project. Berkowitz is also a former OSHA chief. In her view, political and financial decisions in recent years have hollowed out the agency: It now has the fewest inspectors and conducts the fewest inspections per year in its history.
Furthermore, some home health care agencies have classified home health providers as contractors, akin to gig workers such as Uber drivers. This loophole protects them from the responsibilities of employers, said Seema Mohapatra, an Indiana University associate professor of law. Furthermore, she said, “these workers are rarely in a position to question, or advocate or lobby for themselves.”
Should workers contract COVID-19, they are unlikely to receive remuneration or damages.
Demonstrating causality — that a person caught the coronavirus on the job — for workers’ compensation has been extremely difficult, Berkowitz said. As with other health care jobs, employers have been quick to point out that workers might have caught the virus at the gas station, grocery store or home.
Many home health providers care for multiple patients, who also bear the consequences of their work conditions. “If you think about perfect vectors for transmission, unprotected individuals going from house to house have to rank at the top of list,” Kohn said. “Even if someone didn’t care at all about these workers, we need to fix this to keep Grandma and Grandpa safe.”
Nonetheless, caregivers like Samira, in Richmond, Virginia, have little choice but to work. Samira — who makes $8.25 an hour with one client and $9.44 an hour with another, and owes tens of thousands of dollars in hospital bills from previous work injuries — has no other option but to risk getting sick.
“I can’t afford not to work. And my clients, they don’t have anybody but me,” she said. “So I just pray every day I don’t get it.”
On Monday, President Donald Trump claimed that the World Health Organization (WHO) “admitted” he was correct that using lockdowns to control the spread of COVID-19 was more damaging than the illness.
In a post on Twitter, Trump wrote: “The World Health Organization just admitted that I was right. Lockdowns are killing countries all over the world. The cure cannot be worse than the problem itself. Open up your states, Democrat governors. Open up New York. A long battle, but they finally did the right thing!”
He reiterated his statement later that night during a campaign rally, saying, “But the World Health Organization, did you see what happened? They just came out a little while ago, and they admitted that Donald Trump was right. The lockdowns are doing tremendous damage to these Democrat-run states, where they’re locked out, sealed up. Suicide rates, drug rates, alcoholism, deaths by so many different forms. You can’t do that.”
Together, the tweet and these comments got considerable attention on social media.
But did the WHO change its stance on lockdowns or concede anything to Trump, as he said it did? Briefly, no.
Since May, Trump has been vocal about asking states to reopen businesses, schools, religious services and other social activities. He also took credit for locking down the U.S. in the early stages of the pandemic, however. And his administration largely delegated lockdown decisions to governors and local governments.
Yet those lockdowns — marked by stay-at-home orders and other restrictions — have been less stringent than those implemented in other countries, said Brooke Nichols, an assistant professor of global health at Boston University.
The “definition has differed country by country and state by state. I would argue that the U.S. has never had an actual enforced lockdown like there have been in some Asian countries and in Italy last spring,” Nichols wrote in an email.
We reached out to the Trump campaign and the White House to ask for more information about Trump’s assertion but didn’t receive a response.
A Clip Doesn’t Tell the Full Story
Although the Trump team didn’t get back to us, we noticed that the Trump War Room Twitter account responded to Trump’s tweet with a link to a video, appearing to back up the president’s claim.
The video is a clip from an Oct. 8 interview with Dr. David Nabarro, a special envoy on COVID-19 for the WHO, by Scottish journalist Andrew Neil. The segment was televised by the British news outlet Spectator TV.
In response to a question about the economic consequences of lockdowns, Nabarro said: “We in the World Health Organization do not advocate lockdowns as the primary means of control of this virus. The only time we believe a lockdown is justified is to buy you time to reorganize, regroup, rebalance your resources; protect your health workers who are exhausted. But by and large, we’d rather not do it.” Nabarro then went on to describe potential economic consequences, including effects on the tourism industry and farmers or the worsening of world poverty.
We checked with Nabarro to find out if the clip accurately reflected the points he raised during a nearly 20-minute interview. He responded, by email: “My comments were taken totally out of context. The WHO position is consistent.”
That context Nabarro mentioned covered a range of topics, such as the estimate that about 90% of the world’s population is still vulnerable to COVID-19, that lockdowns are only an effective pandemic response in extreme circumstances and what Nabarro means when he talks about finding the “middle path.”
“We’re saying we really do have to learn how to coexist with this virus in a way that doesn’t require constant closing down of economies, but at the same time in a way that is not associated with high levels of suffering and death,” Nabarro said in the interview.
To achieve that via the middle-path approach, robust defenses against the virus must be put in place, said Nabarro, including having well-organized public health services, such as testing, contact tracing and isolation. It also involves communities adhering to public health guidelines such as wearing masks, physical distancing and practicing good hygiene.
So, it’s really not accurate for the president to imply that the WHO has or has not supported lockdowns, said Lawrence Gostin, a global health law professor at Georgetown University. It’s not as simple as an either-or choice.
“No one is saying that lockdowns should never be used, just that they shouldn’t be used as a primary or only method,” Gostin wrote in an email.
And Josh Michaud, associate director of global health policy at KFF, said both the WHO and public health experts have acknowledged there are economic consequences to lockdowns. (KHN is an editorially independent program of KFF.)
“Strict lockdowns are best used sparingly and in a time-limited fashion because they can cause negative health and economic consequences,” said Michaud. “That is why Nabarro said lockdowns are not recommended as the ‘primary’ control measure. Critics like to frame lockdowns as being recommended as the only measure, when in reality that is not the case.”
Has the WHO Flipped on Its Stance on Lockdowns?
And what about Trump’s assertion that the WHO had changed its position and admitted he was right?
A member of the WHO media office told us in a statement, “Our position on lockdowns and other severe movement restrictions has been consistent since the beginning. We recognize that they are costly to societies, economies and individuals, but may need to be used if COVID-19 transmission is out of control.”
“WHO has never advocated for national lockdowns as a primary means for controlling the virus. Dr. Nabarro was repeating our advice to governments to ‘do it all,’” the spokesperson said.
To test this premise, we looked at statements by WHO leaders over the course of the pandemic. In the multiple media briefings we reviewed from February onward, the WHO appeared consistent in its messaging about what lockdowns should be deployed for: to give governments time to respond to a high number of COVID-19 cases and get a reprieve for health care workers. Although WHO leaders in February supported the shutting down of the city of Wuhan, China, the presumed source of the COVID-19 outbreak, they have also acknowledged that lockdowns can have serious economic effects, and that robust testing, contact tracing and physical distancing are usually preferable to completely locking down.
There is also no evidence the WHO “admitted” Trump was right about lockdowns.
Our Ruling
Trump tweeted on Monday and then said later that night at a campaign rally that the WHO admitted he was right about lockdowns.
We found no evidence the WHO made this admission. And, based on a review of WHO communications, we found its messaging on the topic has been consistent since the pandemic’s early days.
Trump also appears to have relied on a brief video clip of a wide-ranging interview with WHO special envoy Dr. David Nabarro that didn’t give an accurate portrayal of how Nabarro characterized the use of this intervention.
A new poll shows 79% of the public does not want the court to cancel coverage protections for Americans with preexisting conditions. A majority of Republicans, 66%, said they do not want those safeguards overturned.
This article was published on Friday, October 16, 2020 in Kaiser Health News.
At least half of voters prefer former Vice President Joe Biden's approach to healthcare over President Donald Trump's, suggesting voter concern about lowering costs and managing the pandemic could sway the outcome of this election, a new poll shows.
The findings, from KFF's monthly tracking poll, signal that voters do not trust assurances from the president that he will protect people with preexisting conditions from being penalized by insurance companies if the Supreme Court overturns the Affordable Care Act. (KHN is an editorially independent program of KFF.)
Coming a month before the court will hear arguments from Republican attorneys general and the Trump administration that the health law should be overturned, the poll shows 79% of the public does not want the court to cancel coverage protections for Americans with preexisting conditions. A majority of Republicans, 66%, said they do not want those safeguards overturned.
In addition to leaving about 21 million Americans uninsured, overturning the ACA could allow insurance companies to charge more or deny coverage to individuals because they have preexisting conditions — a common practice before the law was established, and one that a government analysis said in 2017 could affect as many as 133 million Americans.
Nearly 6 in 10 people said they have a family member with a preexisting or chronic condition, such as diabetes or cancer, and about half said they worry about a relative being unable to afford coverage, or lose it outright, if the law is overturned.
The poll reveals a striking preference for Biden over Trump when it comes to protecting preexisting conditions, an issue that 94% of voters said would help decide who they vote for. Biden has a 20-point advantage, with voters preferring his approach 56% to 36% for Trump.
In fact, it shows a preference for Biden on every healthcare issue posed, including among those age 65 and older and on issues that Trump has said were his priorities while in office — signaling voters are not satisfied with the president's work to lower healthcare costs, in particular. Support for Trump's efforts to lower prescription drug costs has been slipping, with voters now preferring Biden's approach, 50% to 43%.
A majority of voters said they prefer Biden's plan for dealing with the COVID-19 outbreak, 55% to 39%, and for developing and distributing a vaccine for COVID-19, 51% to 42%. Trump has largely left it up to state and local officials to manage the outbreak, while promising that scientists would defy expectations and produce a vaccine before Election Day.
Asked which issue is most important to deciding whom to vote for, most pointed to healthcare issues, with 18% choosing the COVID-19 outbreak and 12% saying healthcare overall. Nearly an equal share, 29%, selected the economy.
The survey was conducted Oct. 7-12, after the first presidential debate and Trump's announcement that he had tested positive for COVID-19. The margin of error is plus or minus 3 percentage points for the full sample and 4 percentage points for voters.
Latino case rates were only 64% higher by mid-September, while positivity rate among Blacks was 60% higher than that of whites in late July, but the disparity had waned by mid-September.
This article was published on Thursday, October 15, 2020 in Kaiser Health News.
Los Angeles County officials attribute a dramatic decline in COVID-19 death and case rates among Blacks and Latinos over the past two months to aggressive workplace health enforcement and the opening of tip lines to report violations.
Now, officials intend to cement those gains by creating workplace councils among employees trained to look for COVID-19 prevention violations and correct or report them — without fear of being fired or punished.
Cal/OSHA, the state’s workplace safety and health authority, is overwhelmed with complaints and tips about COVID-19 violations, and the county’s health investigators — there were officially 346 of them as of last Friday — can’t possibly keep tabs on all of Los Angeles’ more than 240,000 businesses, labor advocates say.
The councils could help keep Los Angeles from backsliding on its progress in mitigating cases and racial disparities in the fall as more businesses are likely to reopen, said Tia Koonse, a researcher with the UCLA Labor Center and co-author of an assessment of the workplace council proposal. The L.A. County Board of Supervisors is expected to approve an ordinance this month requiring businesses to permit employees to form the councils, which would troubleshoot compliance issues and report to the health department when necessary.
Critics, including many business leaders, say the measure will create more red tape at the worst possible time for the economy. But labor groups and some businesses say it is crucial to fighting the pandemic. Workers around the country have been sacked or reprimanded for complaining about COVID-related safety violations, and laws protecting them are spotty.
"Workers have a right to be in a safe space and shouldn’t face any retaliation" for noting poor practices, said Barbara Ferrer, director of the L.A. County Public Health Department. Low-wage workers have been "tremendously disadvantaged" by having to work outside the home in contact with other people, often without sufficient protection, she said.
During the upsurge of COVID cases that followed Memorial Day weekend family gatherings and business openings, Latinos in Los Angeles were dying at a rate more than four times higher than that of whites, while Blacks were twice as likely as whites to die of the disease. Two months later, death rates among Blacks and Latinos had fallen by more than half and were approaching the rate for whites, according to age-adjusted data from the county health department.
While four times as many Latinos as whites were reported COVID-positive in late July, the Latino case rates were only 64% higher by mid-September. The positivity rate among Blacks was 60% higher than that of whites in late July, but the disparity had waned by mid-September.
Experts can’t be certain that any one policy is responsible for the decline in deaths among Blacks and Latinos in Los Angeles — and state and county rates have declined for the entire population in recent weeks. But Ferrer attributed the progress to her department’s focus on workplace enforcement of health orders, which include rules about physical distancing, providing face coverings for workers and requiring face coverings for customers.
"If you’re in violation, at this point we can either issue citations, or there are cases where we just close the place down because the violations are egregious," she said.
The sharp racial disparities that characterized the pandemic from the beginning are under even more scrutiny now that California has become the first state to make "health equity" a factor in its decisions to allow expanded reopening.
Large counties may not advance toward full reopening until their most disadvantaged neighborhoods, and not just the county as a whole, meet or are lower than the targeted levels of disease. The criteria prod local governments to invest more in testing, contact tracing and education in poor neighborhoods with high levels of the disease.
Ferrer’s focus on workplaces crystallized during a crackdown on Los Angeles Apparel, a clothing factory that had pivoted to face mask manufacturing during the pandemic. Despite the ready inventory of masks, an outbreak at the factory resulted in at least 300 cases — and four deaths.
The health department, acting on a tip from community health centers flooded with sick Los Angeles Apparel workers, shut down the factory on June 27. That action highlighted the need to bring the government and labor unions together to fight the pandemic, said Jim Mangia, CEO of St. John’s Well Child & Family Center, a chain of community health centers in South L.A.
"At St. John’s, almost all of our patients are the working poor," Mangia said. "They were getting infected at work and bringing it home to their families, and I think intervening at the workplace is what really made all the difference."
Early in the pandemic, Ferrer had also set up an anonymous complaint line for employees who want to report workplace violations. It gets about 2,000 calls a week, she said. As of Oct. 10, the department’s website lists 132 workplaces that have had three or more confirmed COVID-19 cases, with a total of 2,191 positives. Another table dated Oct. 7 lists 124 citations — mostly to gyms and places of worship — for failing to comply with a health officer order.
"Fortunately, we’re not like Cal/OSHA, in the sense that it doesn’t take us months to complete an investigation," Ferrer said. "We’re able to move more swiftly under the health officer orders to actually make sure that we’re protecting workers."
Public health councils are the next phase in Ferrer’s plan to keep workers safe. The plan stemmed from the response of Overhill Farms, a frozen-food factory in Vernon, California, after an outbreak of more than 20 cases and one death. The factory and its temporary job agency were hit with more than $200,000 in proposed penalties from Cal/OSHA in September, but before the fines landed, the factory leadership was already responding by beginning to hold meetings with workers to improve safety there.
"They found that the workers helped them bring down infection rates and helped solve problems," said Roxana Tynan, executive director of the Los Angeles Alliance for a New Economy, a worker advocacy organization.
While it’s not exactly a feel-good story about corporate beneficence, the turnaround at Overhill Farms added credence to the benefits of workplace councils, said Koonse of UCLA.
No company would have to spend more than 0.44% of its payroll cost on the health councils, she estimated.
Still, the idea has gotten a mixed reception from businesses. In an Aug. 24 statement, CEO Tracy Hernandez of the L.A. County Business Federation wrote that the proposal would add “burdensome and convoluted programs that will further hinder an employer’s ability to meet demands, get back on their feet, and adequately serve their employees and customers.”
But Jim Amen, president of the eight-store Super A Foods grocery chain, said businesses should welcome the councils as a way to keep lines of communication open. Such practices have kept infection rates low at his stores, even without a mandate, Amen said.
"All I know is, for Super A, our employees are heavily involved in everything we do," Amen said.
Labor groups see the councils as a crucial way for workers to raise concerns without fear of retaliation.
"In low-wage industries like the garment industry, workers coming together gets them fired," said Marissa Nuncio, director of the Garment Worker Center, a nonprofit that mainly serves immigrants from Mexico and Central America.
While disparities are narrowing in L.A. County, some shops are still unsafe and potential whistleblowers aren’t confident their reports to the county’s tip line are being acted on, she said.
"We continue to get calls from our members who are sick, have COVID and are hospitalized," Nuncio said. "And the most obvious location for them to have been infected is in their workplace, because so many precautions are not being taken."
Rather than prosecuting their case against Barrett, currently a federal appeals court judge, they are refighting the war that helped them pick up seats in 2018.
This article was published on Thursday, October 15, 2020 in Kaiser Health News.
Democrats on the Senate Judiciary Committee know that, barring something unexpected, they lack the votes to block President Donald Trump from installing his third justice in four years on the Supreme Court and creating a 6-3 conservative majority.
They also know that, in a normal year, by mid-October Congress would be out of session and members home campaigning. But 2020 is obviously no normal year. So, while the rest of Congress is home, Democratic Judiciary members are trying something very different in the hearings for nominee Amy Coney Barrett. Rather than prosecuting their case against Barrett, currently a federal appeals court judge, they are refighting the war that helped them pick up seats in 2018 — banging on Republicans for trying to eliminate the Affordable Care Act.
Conveniently, the ACA is relevant to the Supreme Court debate because the justices are scheduled to hear a case that could invalidate the law on Nov. 10 — exactly a week after Election Day.
As California Sen. Kamala Harris, a member of the Judiciary Committee and the Democratic vice presidential candidate, put it to Barrett on Tuesday, "Republicans are scrambling to confirm this nominee as fast as possible because they need one more Trump judge on the bench before Nov. 10th to win and strike down the entire Affordable Care Act. This is not hyperbole. This is not hypothetical. This is happening."
Said Sen. Richard Durbin (D-Ill.), also on Tuesday: "We really believe the Supreme Court’s consideration of that case is going — could literally change America for millions of people."
To be sure, Republicans too were playing to their electorate during the questioning of Barrett, as they expounded on her conservative credentials on issues such as gun rights.
Nonetheless, Democrats were uniformly disciplined in their assault on her potential vote in the ACA case. They chided both Barrett and the Republicans who are rushing her nomination to the floor literally days before a presidential election. In addition, Democrats criticized Republicans for spending time on a nonemergency nomination while continuing to ignore the need for financial and other relief for the COVID-19 pandemic.
And they raised what in more normal times would be the featured talking point for Democrats: the threat to abortion and other reproductive rights from Barrett, who before her elevation to the federal bench publicly opposed abortion and taught law at Notre Dame, one of the nation’s preeminent Catholic universities.
"For many people, and particularly for women, this is a fundamental question," said Sen. Dianne Feinstein (D-Calif.), the committee’s top Democrat.
Barrett, like every other Supreme Court nominee for the past three decades, declined to offer positions that could suggest which way she might rule on hot-button issues, including abortion and the ACA.
She repeatedly cited what has come to be called the "Ginsburg rule" — after the justice she would replace, Ruth Bader Ginsburg — saying "no hints, no previews, no forecasts."
Still, Democrats suggested that she may have tipped her hand on the Affordable Care Act case. In pointing out that the issues in the case, now known as California v. Texas, are different from the previous cases upholding the health law in 2012 and 2015, she said the current case will turn on "severability."
She was referring to the question of whether, if one portion of a law is found to be unconstitutional, the rest of the law can stand without it. In the current ACA case, a group of Republican attorneys general — and the Trump administration — are arguing that when Congress reduced the ACA’s penalty for not having insurance to zero, the requirement to be covered no longer had a tax attached, and therefore the law is now unconstitutional. They based their argument on Chief Justice John Roberts’ 2012 conclusion that the ACA was valid because that penalty was a constitutionally appropriate tax.
The law’s opponents say the rest of the law cannot be "severed" and must therefore fall, too. A federal district judge in Texas agreed with them.
But merely saying the case turns on severability suggests that Barrett has already prejudged major parts of the case, Democrats said. Sen. Chris Coons (D-Del.) noted, "You don’t get to the question of severability if you haven’t already determined the question of constitutionality."
Barrett insisted repeatedly that despite an article she wrote in 2017 suggesting that the 2012 case upholding the law was wrongly decided, "I have no animus to nor agenda for the ACA," as she told Sen. Amy Klobuchar (D-Minn.) on Wednesday.
In their rare show of unity of message, Democrats made clear that their primary audience in these hearings was not their Senate colleagues, but the voting public. While this battle looks lost, they hope to win the War of Nov. 3.
In late March, shortly after New York state closed nonessential businesses and asked people to stay home, Ashley Laderer began waking each morning with a throbbing headache.
"The pressure was so intense it felt like my head was going to explode," recalled the 27-year-old freelance writer from Long Island.
She tried spending less time on the computer and taking over-the-counter pain medication, but the pounding kept breaking through — a constant drumbeat to accompany her equally incessant worries about COVID-19.
"Every day I lived in fear that I was going to get it and I was going to infect my whole family," she said.
After a month and a half, Laderer decided to visit a neurologist, who ordered an MRI. But the doctor found no physical cause. The scan was clear.
Then he asked: Are you under a lot of stress?
Throughout the pandemic, people who never had the coronavirus have been reporting a host of seemingly unrelated symptoms: excruciating headaches, episodes of hair loss, upset stomach for weeks on end, sudden outbreaks of shingles and flare-ups of autoimmune disorders. The disparate symptoms, often in otherwise healthy individuals, have puzzled doctors and patients alike, sometimes resulting in a series of visits to specialists with few answers. But it turns out there's a common thread among many of these conditions, one that has been months in the making: chronic stress.
Although people often underestimate the influence of the mind on the body, a growing catalog of research shows that high levels of stress over an extended time can drastically alter physical function and affect nearly every organ system.
Now, at least eight months into the pandemic, alongside a divisive election cycle and racial unrest, those effects are showing up in a variety of symptoms.
"The mental health component of COVID is starting to come like a tsunami," said Dr. Jennifer Love, a California-based psychiatrist and co-author of an upcoming book on how to heal from chronic stress.
Nationwide, surveys have found increasing rates of depression, anxiety and suicidal thoughts during the pandemic. But many medical experts said it's too soon to measure the related physical symptoms, since they generally appear months after the stress begins.
Still, some early research, such as a small Chinese study and an online survey of more than 500 people in Turkey, points to an uptick.
In the U.S., data from FAIR Health, a nonprofit database that provides cost information to the health industry and consumers, showed slight to moderate increases in the percentage of medical claims related to conditions triggered or exacerbated by stress, like multiple sclerosis and shingles. The portion of claims for the autoimmune disease lupus, for example, showed one of the biggest increases — 12% this year — compared with the same period last year (January to August).
Express Scripts, a major pharmacy benefit manager, reported that prescriptions for anti-insomnia medicationsincreased 15% early in the pandemic.
Perhaps the strongest indicator comes from doctors reporting a growing number of patients with physical symptoms for which they can't determine a cause.
Dr. Shilpi Khetarpal, a dermatologist at the Cleveland Clinic, used to see about five patients a week with stress-related hair loss. Since mid-June, that number has jumped to 20 or 25. Mostly women, ages 20 to 80, are reporting hair coming out in fistfuls, Khetarpal said.
In Houston, at least a dozen patients have told fertility specialist Dr. Rashmi Kudesia they're having irregular menstrual cycles, changes in cervical discharge and breast tenderness, despite normal hormone levels.
Stress is also the culprit dentists are pointing to for the rapid increase in patients with teeth grinding, teeth fractures and TMJ.
"We, as humans, like to have the idea that we are in control of our minds and that stress isn't a big deal," Love said. "But it's simply not true."
Although symptoms of chronic stress are often dismissed as being in one's head, the pain is very real, said Kate Harkness, a professor of psychology and psychiatry at Queen's University in Ontario.
When the body feels unsafe — whether it's a physical threat of attack or a psychological fear of losing a job or catching a disease — the brain signals adrenal glands to pump stress hormones. Adrenaline and cortisol flood the body, activating the fight-or-flight response. They also disrupt bodily functions that aren't necessary for immediate survival, like digestion and reproduction.
When the danger is over, the hormones return to normal levels. But during times of chronic stress, like a pandemic, the body keeps pumping out stress hormones until it tires itself out. This leads to increased inflammation throughout the body and brain, and a poorly functioning immune system.
Studies link chronic stress to heart disease, muscle tension, gastrointestinal issues and even physical shrinking of the hippocampus, an area of the brain associated with memory and learning. As the immune system acts up, some people can even develop new allergic reactions, Harkness said.
The good news is that many of these symptoms are reversible. But it's important to recognize them early, especially when it comes to the brain, said Barbara Sahakian, a professor of clinical neuropsychology at the University of Cambridge.
"The brain is plastic, so we can to some extent modify it," Sahakian said. "But we don't know if there's a cliff beyond which you can't reverse a change. So the sooner you catch something, the better."
The Day-to-Day Impact
In some ways, mental health awareness has increased during the pandemic. TV shows are flush with ads for therapy and meditation apps, like Talkspace and Calm, and companies are announcing mental health days off for staff.
But those spurts of attention fail to reveal the full impact of poor mental health on people's daily lives.
For Alex Kostka, pandemic-related stress has brought on mood swings, nightmares and jaw pain.
He'd been working at a Whole Foods coffee bar in New York City for only about a month before the pandemic hit, suddenly anointing him an essential worker. As deaths in the city soared, Kostka continued riding the subway to work, interacting with co-workers in the store and working longer hours for just a $2-per-hour wage increase. (Months later, he'd get a $500 bonus.) It left the 28-year-old feeling constantly unsafe and helpless.
"It was hard not to break down on the subway the minute I got on it," Kostka said.
Soon he began waking in the middle of the night with pain from clenching his jaw so tightly. Often his teeth grinding and chomping were loud enough to wake his girlfriend.
Kostka tried Talkspace, but found texting about his troubles felt impersonal. By the end of the summer, he decided to start using the seven free counseling sessions offered by his employer. That's helped, he said. But as the sessions run out, he worries the symptoms might return if he's unable to find a new therapist covered by his insurance.
"Eventually, I will be able to leave this behind me, but it will take time," Kostka said. "I'm still very much a work in progress."
How to Mitigate Chronic Stress
When it comes to chronic stress, seeing a doctor for stomach pain, headaches or skin rashes may address those physical symptoms. But the root cause is mental, medical experts say.
That means the solution will often involve stress-management techniques. And there's plenty we can do to feel better:
Fostering social connections. Talking to family and friends, even virtually, or staring into a pet's eyes can release a hormone that may counteract inflammation.
Learning something new. Whether it's a formal class or taking up a casual hobby, learning supports brain plasticity, the ability to change and adapt as a result of experience, which can be protective against depression and other mental illness.
"We shouldn't think of this stressful situation as a negative sentence for the brain," said Harkness, the psychology professor in Ontario. "Because stress changes the brain, that means positive stuff can change the brain, too. And there is plenty we can do to help ourselves feel better in the face of adversity."
LONE TREE, Colo. — Darcy Velasquez, 42, and her mother, Roberta Truax, were walking recently in the Park Meadows mall about 15 miles south of downtown Denver, looking for Christmas gifts for Velasquez's two children, when they spotted a store with a display of rhinestone-studded masks.
It's an immutable truth of fashion: Sparkles can go a long way with a 9-year-old.
The store is called COVID-19 Essentials. And it may well be the country's first retail chain dedicated solely to an infectious disease.
With many U.S. stores closing during the coronavirus pandemic, especially inside malls, the owners of this chain have seized on the empty space, as well as the world's growing acceptance that wearing masks is a reality that may last well into 2021, if not longer. Masks have evolved from a utilitarian, anything-you-can-find-that-works product into another way to express one's personality, political leanings or sports fandom.
And the owners of COVID-19 Essentials are betting that Americans are willing to put their money where their mouth is. Prices range from $19.99 for a simple children's mask to $130 for the top-of-the-line face covering, with an N95 filter and a battery-powered fan.
Almost all shops and many pop-up kiosks in the Park Meadows mall now sell masks. But COVID-19 Essentials also carries other accessories for the pandemic, in a space that has a more established feel than a holiday pop-up store; permanent signage above its glass doors includes a stylized image of a coronavirus particle. Nestled beside the UNTUCKit shirt store and across from a Tesla showroom, it has neither the brand recognition nor the track record of a J.C. Penney. But longevity doesn't seem to have helped that clothing chain or many others escape industry upheaval during the pandemic. According to analysts at S&P Global Market Intelligence, retail bankruptcies from January to mid-August reached a 10-year-high.
Not that the COVID-19 Essentials owners want their products to be in demand forever.
"I can't wait to go out of business eventually," said Nadav Benimetzky, a Miami retailer who founded COVID-19 Essentials, which now has eight locations around the country.
That seemed to be the attitude of most of the customers who walked into the store on a recent Friday afternoon. Most understood the need for masks — face coverings are required to even enter the mall — and thus they recognized the business case for a COVID-19 store. Still, they hoped masks would soon go the way of bell-bottoms or leg warmers. For the time being, they're making the best of the situation.
Nathan Chen, who owns the Lone Tree store with Benimetzky, previously ran a different store at the Denver airport, but as air travel declined, a COVID-focused business seemed a much better venture. The pandemic giveth and the pandemic taketh away.
Benimetzky opened the first COVID-19 Essentials store in the Aventura Mall in suburban Miami after seeing the demand for N95 masks early in the pandemic. "They're ugly and uncomfortable, and everybody hates them," he said. "I piggybacked off of that. If you're going to wear a mask, you might as well make it fashionable and pretty."
That could mean a sequin or satin mask for more formal occasions, or the toothy grin of a skull mask for casual affairs. Some masks have zippers to make eating easier, or a hole for a straw, with a Velcro closure for when the cup is sucked dry.
The chain has locations in New York City, New Jersey, Philadelphia and Las Vegas, and is looking to open stores in California, where wildfires have only added to the demand for masks.
Initially, the owners really weren't sure the idea would fly. They opened the first store just as malls were reopening following the lockdowns.
"We really didn't grasp how big it would get," Benimetzky said. "We didn't go into it with the idea of opening many stores. But we got busy from the second we opened."
Nancy Caeti, 76, stopped in the Lone Tree store to buy masks for her grandchildren. She bought one with a clear panel for her granddaughter, whose sign language instructor needs to see her lips moving. She bought her daughter, a music teacher and Denver Broncos fan, a mask with the football team's logo.
"I lived through the polio epidemic," Caeti said, as her latex-gloved hand inserted her credit card into the card reader. "It reminds me of that, but that I don't think was as bad." She recalled how her mother had lined her and her siblings up to get the polio vaccine, and said she'd be first in line for a COVID shot.
That perhaps is the one essential the store does not carry. It hawks keylike devices for opening doors and pressing elevator buttons without touching them. Some have a built-in bottle opener. There are ultraviolet-light devices for disinfecting phones and upscale hand sanitizer that employees spray on customers as if it were a department store perfume sample.
But the masks are the biggest draw. The store can personalize them with rhinestone letters or the kind of iron-on patches that teens once wore on their jeans.
Upon entry, customers can check their temperature with a digital forehead scanner with audible directions: "Step closer. Step closer. Temperature normal. Temperature normal."
The store also has added a sink near the entrance so customers can wash their hands before handling the merchandise.
Some mallgoers walk by the store in bewilderment, stopping to take photos to post to social media with a you've-got-to-be-kidding message. One older white couple in matching masks noticed a mask emblazoned with the slogan "Black Lives Matter" in the storefront display, and walked away in disgust.
The store takes no political sides; there are three designs of President Donald Trump campaign masks, two for Democratic presidential candidate and former Vice President Joe Biden. One woman, who declined to give her name, came in wearing a mask below her nose and wondered whether a Trump mask would fit her smallish face. The Trump masks are among the more popular sellers, Chen said, so he keeps them in a bigger cabinet to accommodate the extra stock. It's not clear if that will forecast the election results, as some have posited with Halloween mask sales.
Daniel Gurule, 31, stopped by the mall on his lunch hour to pick up an Apple Watch but ventured into the store for a new mask. He said that he normally wore a vented mask but that not all places allowed those. (They protect users but not the people around them.) He bought a $24.99 mask with the logo of the Denver Nuggets basketball team.
"It takes away a little bit of our personalities when everybody is walking around in disposable masks," Chen said. "It kind of looks like a hospital, like everybody is sick."
Most of the masks are sewn specifically for the chain, including many by hand. One of their suppliers is a family of Vietnamese immigrants who sew masks at their Los Angeles home, Benimetzky said. Chen said that it was hard to keep masks in stock, and that every day it seemed some other design became their best seller.
Dorothy Lovett, 80, paused outside the store, leaning on a cane with an animal print design.
"I had to back up and say, 'What the heck is this?'" she said. "I've never seen a mask store before."
She perused the display case, noting she needed to find a better option than the cloth version she was wearing.
"I can't breathe in this one," said Lovett, who is white, before deciding on her favorite. "I like the Black Lives Matter mask."
We decided to examine both the Trump and Biden plans to curb the pandemic and investigate whether Pence was on target in his charge that the Biden plan is rooted in Trump's ideas.
This article was published on Wednesday, October 14, 2020 in Kaiser Health News, in partnership with PolitiFact.
During last week's vice presidential debate, moderator Susan Page, USA Today's Washington bureau chief, asked Vice President Mike Pence about the U.S. COVID-19 death toll. Pence replied by touting the Trump administration's actions to combat the pandemic, such as restrictions on travel from China, steps to expand testing and efforts to accelerate the production of a vaccine.
Pence also took a jab at Democratic presidential nominee Joe Biden, a strong critic of the Trump pandemic response. "The reality is, when you look at the Biden plan, it reads an awful lot like what President Trump and I and our task force have been doing every step of the way," said Pence. "And, quite frankly, when I look at their plan," he added, "it looks a little bit like plagiarism, which is something Joe Biden knows a little bit about."
(Pence's gibe about plagiarism is likely a reference to Biden copying phrases from a British politician's speeches during his first run for president in 1987, an issue that caused him to drop out of the race. In 2019, the Biden campaign acknowledged it had inadvertently lifted language in its climate and education plans without attributing the sources.)
Because COVID-19 continues to spread throughout the United States, with nearly 8 million cases and upward of 215,000 deaths, we decided to examine both the Trump and Biden plans to curb the pandemic and investigate whether Pence was on target in his charge that the Biden plan is rooted in Trump's ideas.
At first glance, there are obvious similarities. Both declare goals like vaccine development and expanding public availability of COVID-19 tests.
"Most pandemic response plans should be at their core fairly similar, if they're well executed," said Nicolette Louissaint, executive director of Healthcare Ready, a nonprofit organization focused on strengthening the U.S. health care supply chain.
But public health experts also pointed to significant philosophical differences in how the plans are put into action.
"You ought to think about it as two groups of people trying to make a car," said Dr. Georges Benjamin, executive director of the American Public Health Association. "They have to have four wheels, probably have to have a bumper, have some doors," he said. It is how you build the car from that point forward that determines what the end product looks like.
What Trump Has Done
As Pence pointed out, the Trump administration has focused its efforts to combat COVID-19 along a couple of lines.
The administration formed the White House coronavirus task force in January and issued travel restrictions for some people traveling from China and other countries in February. Federal social distancing guidelines were issued in March and expired on April 30. The administration launched Operation Warp Speed in April, with the goal of producing and delivering 300 million doses of a coronavirus vaccine beginning in January 2021. A more detailed logistics plan to distribute a vaccine was issued later. Trump activated the Defense Production Act for certain protective equipment and ventilators. His administration also has talked about efforts to expand COVID-19 testing in partnership with the private sector, as well as initiatives to help cover costs for COVID-19 treatments and make tests free of charge.
Importantly, the administration also shifted significant decision-making responsibility to states, leaving the development of testing plans, procurement of personal protective equipment and decrees on stay-at-home orders and mask mandates to the discretion of the governor or local governments. Despite that, Trump still urged states to reopen beginning in May, though in many areas cases of COVID-19 remained high.
What Biden Proposes to Do
Biden's plan would set out strong national standards for testing, contact tracing and social distancing — words that echo the Trump plan. It proposes working with states on mask mandates, establishing a "supply commander" in charge of shoring up PPE, aggressively using the Defense Production Act and accelerating vaccine development.
It also outlines plans to extend more fiscal relief, provide enhanced health insurance coverage, eliminate cost sharing for COVID treatments, reestablish a team on the National Security Council to address pandemic response and to maintain membership inthe World Health Organization. Trump announced earlier this summer that the U.S. would begin procedures to withdraw from the WHO, effective as of July 6, 2021.
Biden has said he would follow scientific advice if indicators pointed to a need to dial up social distancing guidelines in light of another wave of COVID-19 cases.
Email exchange with Joe Biden for President campaign staffer, Oct. 7, 2020
Email interview with Dr. Rachel Vreeman, director of the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, Oct. 8, 2020
Phone interview with Brooke Nichols, assistant professor of global health at Boston University, Oct. 9, 2020
Phone interview with Josh Michaud, associate director for global health policy at KFF (Kaiser Family Foundation), Oct. 8, 2020
Phone interview with Joseph Antos, Wilson H. Taylor resident scholar in health care and retirement policy at the American Enterprise Institute, Oct. 8, 2020
Phone interview with Dr. Georges Benjamin, executive director of the American Public Health Association, Oct. 8, 2020
Phone interview with Dr. Leana Wen, public health professor at George Washington University, Oct. 8, 2020
Phone interview with Nicolette Louissaint, executive director and president of Healthcare Ready, Oct. 9, 2020
Dr. Rachel Vreeman, director of the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, noted in an email that a key likeness is that the two plans "sometimes used similar words, such as testing, PPE and vaccines."
But "the overall philosophy from the start, from the White House and from Trump, has been to let states and local governments deal with this problem," said Josh Michaud, associate director for global health policy at KFF. "Biden would have a much more forceful role for the federal government in setting strategy and guidelines in regards to the public health response." (KHN is an editorially independent program of KFF.)
Even Pence pointed out this philosophical difference during the debate, saying that Democrats want to exert government control while Trump and Republicans left health choices up to individual Americans.
Vreeman and others pointed to another contrast — that the Trump administration has yet to issue a comprehensive COVID-19 response plan.
"What plan? I would really love it if someone could show me a plan. A press release is not a plan," said Dr. Leana Wen, a public health professor at George Washington University.
Wen is right that the Trump administration has not issued a detailed plan, such as Biden's document. The Trump administration has, however, offered a road map for how vaccines would be distributed.
Behavior Matters, Too
Another major distinction emerged in the way the candidates have communicated the threat of the coronavirus to the public and reacted to public health guidelines, such as those issued by the Centers for Disease Control and Prevention.
During most public outings and campaign rallies, Trump has chosen not to wear a mask — even after he tested positive and was treated for COVID-19. He has been known to mock others, including reporters and Biden, for wearing masks. And, Trump and members of his administration have not adhered to social distancing guidelines at official events. The White House indoor reception and outdoor Rose Garden event held to mark the nomination of Amy Coney Barrett to the Supreme Court – at each one, few attendees followed these precautions – have been associated with the transmission of at least 11 cases of coronavirus, according to a website tracking the cases from public reports. There are also multiple reported cases among White House and Trump campaign staff members.
Throughout the pandemic, Trump has downplayed the threat of COVID-19, touted unproven treatments for the disease such as bleach, hydroxychloroquine or UV light, questioned the effectiveness of face masks and criticized or contradicted public health officials' statements about the pandemic.
In comparison, Biden has worn masks during his public campaign events and has encouraged Americans to do so as well. His events strictly adhere to public health guidelines, including wearing masks, social distancing and limiting the number of attendees.
The two candidates' approaches to listening to scientists are also different.
"Biden has said he is going to look at science and value the best scientists," said Benjamin. "The Trump administration has not walked the talk; they have said one thing and done something else. If you go on the Trump administration website, you see guidelines that they didn't follow themselves."
In the end, the Biden campaign has the distinction of being able to learn from the Trump administration's early missteps, said the experts.
There's also a reality check: if Biden wins and attempts to implement his COVID-19 plan, it's important to consider that no matter how well thought out it looks on paper, he may not be able to accomplish everything.
"There's a lot of words in this plan," said Joseph Antos, a resident scholar in health care policy at the American Enterprise Institute. "But until you're in the job, a lot of this doesn't really matter."
Our Ruling
Pence claimed the Biden plan to address COVID-19 was similar to the Trump administration's plan "every step of the way."
A cursory, side-by-side look at the Trump administration's COVID-19 actions — no actual comprehensive plan has been released — and the Biden plan indicates some big picture overlap on securing a vaccine and ramping up testing. But that's where the similarities end.
Biden's plan includes proposed actions the Trump administration has not pursued. It also is focused on federal rather than state authority, a significant distinction Pence himself pointed out during the debate.
Additionally, the candidates' behaviors toward COVID-19 and views on science have been diametrically opposed, with Trump eschewing the use of face masks and social distancing, and Biden closely adhering to both.
Pence's statement ignores critical facts and realities, making it inaccurate and ridiculous.
'No Mercy' is Season One of 'Where It Hurts,' a podcast about overlooked parts of the country where cracks in the health system leave people without the care they need. Our first destination is Fort Scott, Kansas.
Emergency care gets complicated after a hospital closes. On a cold February evening, when Robert Findley fell and hit his head on a patch of ice, his wife, Linda, called 911. The delays that came next exposed the frayed patchwork that sometimes stands in for rural health care.
After Mercy Hospital Fort Scott shut down, many locals had big opinions about what kind of health care the town needed.
"Words of experience is, you don't know when that tragedy is going to happen," Linda Findley said.
Fort Scott's free-standing ER and the new community health center aren't enough, she said.
"I mean, my gosh, you need to feel like you're safe and could be taken care of where you're at," she said.
"Where It Hurts" is a podcast collaboration between KHN and St. Louis Public Radio. Season One extends the storytelling from Sarah Jane Tribble's award-winning series, "No Mercy."
When the coronavirus arrived in Philadelphia in March, Dr. Ala Stanford hunkered down at home with her husband and kids. A pediatric surgeon with a private practice, she has staff privileges at a few suburban Philadelphia hospitals. For weeks, most of her usual procedures and patient visits were canceled. So she found herself, like a lot of people, spending the days in her pajamas, glued to the TV.
And then, at the beginning of April, she started seeing media reportsindicating that Black people were contracting the coronavirus and dying from COVID-19 at greater rates than other demographic groups.
"It just hit me like, what is going on?" said Stanford.
At the same time, she started hearing from Black friends who couldn't get tested because they didn't have a doctor's referral or didn't meet the testing criteria. In April, there were shortages of coronavirus tests in numerous locations across the country, but Stanford decided to call around to the hospitals where she works to learn more about why people were being turned away.
One explanation she heard was that a doctor had to sign on to be the "physician of record" for anyone seeking a test. In a siloed health system, it could be complicated to sort out the logistics of who would communicate test results to patients. And, in an effort to protect health care workers from being exposed to the virus, some test sites wouldn't let people without cars simply walk up to the test site.
"All these reasons in my mind were barriers and excuses," she said. "And, in essence, I decided in that moment we were going to test the city of Philadelphia."
Black Philadelphians contract the coronavirus ata rate nearly twice that of their white counterparts. They also are more likely to have severe cases of the virus: African Americans make up 44% of Philadelphians but 55% of those hospitalized for COVID-19.
Black Philadelphians are more likely to work jobs that can't be performed at home, putting them at a greater risk of exposure. In the city's jails, sanitation and transportation departments, workers are predominantly Black, and as the pandemic progressed they contracted COVID-19 at high rates.
The increased severity of illness among African Americans may also be due in part to underlying health conditions more prevalent among Black people, but Stanford maintains that unequal access to health care is the greatest driver of the disparity.
"When an elderly funeral home director in West Philly tries to get tested and you turn him away because he doesn't have a prescription, that has nothing to do with his hypertension, that has everything to do with your implicit bias," she said, referring to an incident she encountered.
Before April was over, Stanford sprang into action. Her mom rented a minivan to serve as a mobile clinic, while Stanford started recruiting volunteers among the doctors, nurses and medical students in her network. She got testing kits from the diagnostic and testing company LabCorp, where she had an account through her private practice. Fueled by Stanford's personal savings and donations collected through a GoFundMe campaign, the minivan posted up in church parking lots and open tents on busy street corners in Philadelphia.
It wasn't long before she was facing her own logistical barriers. LabCorp asked her how she wanted to handle uninsured patients whose tests it processed.
"I said, for every person that does not have insurance, you're gonna bill me, and I'm gonna figure out how to pay for it later," said Stanford. "But I can't have someone die for a test that costs $200."
Philadelphians live-streamed themselves on social media while they got tested, and word spread. By May, it wasn't unusual for the Black Doctors COVID-19 Consortium to test more than 350 people a day. Stanford brought the group under the umbrella of a nonprofit she already operated that offers tutoring and mentorship to youth in under-resourced schools.
Tavier Thomas found out about the group on Facebook in April. He works at a T-Mobile store, and his co-worker had tested positive. Not long after, he started feeling a bit short of breath.
"I probably touch 100 phones a day," said Thomas, 23. "So I wanted to get tested, and I wanted to make sure the people testing me were Black."
Many Black Americans seek out Black providers because they've experienced cultural indifferenceor mistreatment in the health system. Thomas' preference is rooted in history, he said, pointing to times when white doctors and medical researchers have exploited Black patients. In the 19th century American South, for example, white surgeon J. Marion Sims performed experimental gynecological treatments without anesthesia on enslaved Black women. Perhaps the most notorious example began in the 1930s, when the United States government enrolled Black men with syphilis in a study at Tuskegee Institute, to see what would happen when the disease went untreated for years. The patients did not consent to the terms of the study and were not offered treatment, even when an effective one became widely available.
"They just watched them die of the disease," said Thomas, of the Tuskegee experiments.
"So, to be truthful, when, like, new diseases drop? I'm a little weird about the mainstream testing me, or sticking anything in me."
In April, Thomas tested positive for the coronavirus but recovered quickly. He returned recently to be tested again by Stanford's group, even though the testing site that day was in a church parking lot in Darby, Pennsylvania, a solid 30-minute drive from where he lives.
Thomas said the second test was just for safety, because he lives with his grandfather and doesn't want to risk infecting him. He also brought along his brother, McKenzie Johnson. Johnson lives in neighboring Delaware but said it was hard to get tested there without an appointment, and without health insurance. It was his first time being swabbed.
"It's not as bad as I thought it was gonna be," he joked afterward. "You cry a little bit — they search in your soul a little bit — but, naw, it's fine."
Each time it offers tests, the consortium sets up what amounts to an outdoor mini-hospital, complete with office supplies, printers and shredders. When they do antibody tests, they need to power their centrifuges. Those costs, plus the lab processing fee of $225 per test and compensation for 15-30 staff members, amounts to roughly $25,000 per day, by Stanford's estimate.
"Sometimes you get reimbursed and sometimes you don't," she said. "It's not an inexpensive operation at all."
After its first few months, the consortium came to the attention of Philadelphia city leaders, who gave the group about $1 million in funding. The group also attracted funding from foundations and individuals. The regional transportation authority hired the group to test its front-line transit workers weekly.
To date, the Black Doctors COVID-19 Consortium has tested more than 10,000 people — and Stanford is the "doctor on record" for each of them. She appreciates the financial support from the local government agencies but still worries that the city, and Philadelphia's well-resourced hospital systems, aren't being proactive enough on their own. In July, wait times for results from national commercial labs like LabCorp sometimes stretched past two weeks. The delays rendered the work of the consortium's testing sites essentially worthless, unless a person agreed to isolate completely while awaiting the results. Meanwhile, at the major Philadelphia-area hospitals, doctors could get results within hours, using their in-house processing labs. Stanford called on the local health systems to share their testing technology with the surrounding community, but she said she was told it was logistically impossible.
"Unfortunately, the value put on some of our poorest areas is not demonstrated," Stanford said. "It's not shown that those folks matter enough. That's my opinion. They matter to me. That's what keeps me going."
Now, Stanford is working with Philadelphia's health commissioner, trying to create a rotating schedule wherein each of the city's health systems would offer free testing one day per week, from 9 a.m. to 9 p.m.
The medical infrastructure she has set up, Stanford said, and its popularity in the Black community, makes her group a likely candidate to help distribute a coronavirus vaccine when one becomes available. Representatives from the U.S. Department of Health and Human Services visited one of her consortium's testing sites, to evaluate the potential for the group to pivot to vaccinations.
Overall, Stanford said she is happy to help out during the planning phases to make sure the most vulnerable Philadelphians can access the vaccine. However, she is distrustful of the federal oversight involved in vetting an eventual coronavirus vaccine. She said there are still too many unanswered questions about the process, and too many other instances of the Trump administration puttingpolitical pressure on the Centers for Disease Control and Prevention and the Food and Drug Administration, for her to commit now to doing actual vaccinations in Philadelphia's neighborhoods.
"When the time comes, we'll be ready," she said. "But it's not today."
This story is part of a partnership that includes WHYY, NPR and KHN.