What had changed was how the hospital system classified the appointment for billing.

This article was published on Friday, March 26, 2021 in Kaiser Health News.

By Lauren Weber

Kyunghee Lee's right hand hurts all the time.

She spent decades running a family dry cleaning store outside Cleveland after emigrating from South Korea 40 years ago. She still freelances as a seamstress, although work has slowed amid the COVID-19 pandemic.

While Lee likes to treat her arthritis with home remedies, each year the pain in the knuckles of her right middle finger and ring finger increases until they hurt too much to touch. So about once a year she goes to see a rheumatologist, who administers a pain-relieving injection of a steroid in the joints of those fingers.

Her cost for each round of injections has been roughly $30 the past few years. And everything is easier, and less painful for a bit, after each steroid treatment.

So, in late summer she masked up and went in for her usual shots. She noticed her doctor's office had moved up a floor in the medical building, but everything else seemed just the same as before — same injections, same doctor.

Then the bill came.

The Patient: Kyunghee Lee, a 72-year-old retiree with UnitedHealthcare AARP Medicare Advantage Walgreens insurance who lives in Mentor, Ohio

Medical Service: Steroid injections into arthritic finger joints

Service Provider: University Hospitals Mentor Health Center, part of the University Hospitals health system in northeastern Ohio

Total bill: $1,394, including a $1,262 facility fee listed as "operating room services." The balance included a clinic charge and a pharmacy charge. Lee's portion of the bill was $354.68.

What Gives: Lee owed more than 10 times what she had paid for the same procedure done before by the same physician, Dr. Elisabeth Roter.

Lee said it was the "same talking, same injection — same time."

Lee and her family were outraged by the sudden price hike, considering she had gotten the same shots for the far lower price multiple times in the years before. Her daughter, Esther, said this was a substantial bill for her mother on her Social Security-supplemented income.

"This is a senior citizen for whom English is not her first language. She doesn't have the resources to fight this," Esther Lee said.

What had changed was how the hospital system classified the appointment for billing. Between 2019 and 2020, the hospital system "moved our infusion clinic from an office-based practice to a hospital-based setting," University Hospitals spokesperson George Stamatis said in an emailed statement.

That was a change in definition for billing. The injection was given in the same medical office building, which is not a hospital. Lee did not need or get an infusion, which requires the insertion of an IV and some time spent allowing the medicine to flow into a vein.

Nonetheless, that change allowed the hospital system to bill what's called a "facility fee," laid out on Lee's bill as "operating room services." The increasingly controversial charge — basically a room rental fee — comes without warning, as hospitals are not required to inform patients of it ahead of time.

Hospitals say they charge the fee to cover their overhead for providing 24/7 care, when needed. Stamatis also noted the cost of additional regulatory requirements and services "that help drive quality improvement and assurance, but do increase costs."

But facility fees are one reason hospital prices are rising faster than physician prices, according to a 2019 research article in Health Affairs.

"Facility fees are designed by hospitals in particular to grab more revenue from the weakest party in health care: namely, the individual patient," said Alan Sager, a professor of health policy and management at the Boston University School of Public Health.

Lee's insurance had changed to a Medicare Advantage plan in 2020. The overall cost for the appointment was nearly three times what it was in 2017 — before insurance even got involved.

The National Academy for State Health Policy has drafted model legislation for states to clamp down on the practice, which appears to have worsened, Executive Director Trish Riley said, as more private practices have been bought by hospitals and facility fees are tacked onto their charges.

"It's the same physician office it was," she said. "Operating in exactly the same way, doing exactly the same services — but the hospital chooses to attach a facility fee to it."

New York, Oregon and Massachusetts are pursuing legislation to curtail this practice, she said. Connecticut has a facility fee transparency law on the books, and Ohio, where Lee lives, is considering legislation that would prohibit facility fees for telehealth services.

But Riley noted it's difficult to fight powerful hospital lobbyists in a pandemic political climate, where hospitals are considered heroic.

The Centers for Medicare & Medicaid Services has attempted to curtail facility fees by introducing a site-neutral payment policy. The American Hospital Association sued over the move and plans to take the case to the Supreme Court.

Resolution: Lee's daughter, Esther Lee, was furious with the hospital over the fee. Her mom, who is fiercely independent, finally brought her the bill after trying for weeks to get the billing office to change it.

"This is wrong," Esther Lee said. "Even if it was a lot of money for services properly rendered, then of course she would pay it. But that's not the case here."

When Lee called her doctor's office to complain, they told her to talk to the billing department of the hospital. So Lee, with Esther's help, repeatedly called the billing department and filed a complaint with Medicare.

"I don't want to lose my credit," Kyunghee Lee said. "I always paid on time."

But after receiving a "final notice" in February, and then being threatened with being sent to collections, the Lee family gave up the fight. Esther Lee paid the bill for her mother. But she's worried her mom will delay getting the shots now, putting up with the pain longer, as she knows they are more expensive.

The Takeaway: When planning an outpatient procedure like an injection or biopsy, call ahead to ask if it will happen in a place that's considered a "hospital setting" — even if you think you understand the office's billing practices. Ask outright if there will be a facility fee — and how much — even if there's not been one before. If it's an elective procedure, you can search for a cheaper provider.

One easy place to scout for more affordable care is the office of a doctor whose practice has not been bought by a hospital. It is the hospital, not your longtime doctor, that is adding the fee, said Marni Jameson Carey, executive director of the Association of Independent Doctors.

"This is one of the terrible fallouts of consolidation," Carey said.

Stephanie O'Neill 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!

Lauren Weber: LaurenW@kff.org, @LaurenWeberHP

Missouri's rocky vaccine rollout places it among the bottom states nationwide.

This article was published on Friday, March 26, 2021 in Kaiser Health News.

By Lauren Weber

ST. LOUIS — Missourians have driven hours to find vaccines in rural counties — at least those with cars and the time. Tens of thousands of doses are waiting to be distributed, slowly being rolled out in a federal long-term care program. Waitlists are hundreds of thousands of people long. Black residents are getting left behind.

Missouri's rocky vaccine rollout places it among the bottom states nationwide, with 23.7% of the population vaccinated with at least one dosef as of Thursday, compared with the national average of 26.3%. If Missouri were on par with the national rate, that would be roughly equivalent to more than 162,000 additional people vaccinated, or almost the entire population of the city of Springfield.

Part of the problem, health experts said, is that the state bypassed its 115 local health departments in its initial vaccine rollout plans. Instead, state officials largely outsourced the work to hospitals, consultants and federal programs, reasoning hospitals and mass vaccination sites had the workforce and facilities to deliver high numbers of vaccines.

Meanwhile, local health departments and federally qualified health centers, which typically reach the most vulnerable populations not connected to traditional health systems, were each initially left to divvy up about 8% of the state's vaccine supply. That allocation has since increased to 15%, but it hasn't been enough to fill the remaining gaps.

"You get what we pay for," said Spring Schmidt, former co-acting director of the St. Louis County health department, noting public health departments in the state have been underfunded for decades. "This is an infrastructure that is similar to governmental utilities or other services that our citizens expect to be provided for them and tend to only notice when they fall."

The local health departments knew what needed to be done. "We've drilled for this, we've got plans on shelves that are collecting dust for this," Schmidt said.

But that's the rub of long-standing health department underfunding: Even with all the plans honed in flu and H1N1 vaccination campaigns, health departments still would need the staff and facilities to pull off something of this scale, said Dr. Alex Garza, head of the St. Louis Metropolitan Pandemic Task Force, a consortium of the area's major hospital systems. And the state and county governments aren't providing the necessary funding to do the job.

A 2020 Kaiser Health News and AP investigation found that Missouri public health staffing at the state level had fallen 8% from 2010 to 2019, a loss of 106 full-time employees. Public health spending per Missourian was $50 per year — one of the bottom 10 states in the nation.

When the pandemic struck, local health departments had only 408 employees trained to give vaccinations, according to a report released Friday by #HealthierMO, a group advocating for better public health in the state. That means if only those staffers had given vaccines, they would each need to vaccinate some 15,000 people — in many cases, administering two shots. In even the most efficient scenario, with each person taking five minutes to vaccinate, that would take more than seven months for just one shot per person.

The U.S. public health system has been starved for decades and lacks the resources necessary to confront the worst health crisis in a century.

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At the same time, public health officials get blamed for enacting pandemic safety measures. State legislators are discussing limits to public health powers and local officials have withheld funding from their health departments, hindering their power to act in the crisis.

A Question of Equity

Missouri public health officials said the outsourcing approach missed the mark on the mission of public health: getting the vaccine to those who need it the most.

Only 9.9% of Black Missourians are vaccinated, as opposed to 18.3% of white Missourians, according to available data. A series of reports produced by Deloitte, a major consulting firm advising the state on the rollout, showed a pattern of vaccine deserts in metro areas, where the state's Black residents are concentrated.

Nationally, non-Hispanic Black Americans are 1.9 times more likely to die of COVID than white Americans, according to a Centers for Disease Control and Prevention analysis. Black Missourians make up 13.1% of the state's COVID deaths, higher than their 11.8% share of the population.

Some of the Deloitte reports in early March also found nearly a third of Missouri residents traveled outside their county to get vaccinated. Democratic state Sen. Jill Schupp and other critics have said the initial rollout data shows it's because the geographic allocation of vaccines did not match up with population sizes.

"If you are elderly and don't do that kind of driving, if you're low-income and don't have that access to transportation, if you're a working person who can't take time off work to drive an hour and a half one way to get your vaccine — those people are left to fend for themselves," Schupp said.

Decisions were made to prioritize vaccines based on population and risk factors, said state Health and Senior Services Director Dr. Randall Williams and Gov. Mike Parson's deputy chief of staff, Robert Knodell. They say no single group would be happy with their allocation amid the limited initial vaccine supply.

Adam Crumbliss, the state's director for its division of community and public health, noted state officials have concerns about data discrepancies that have made Missouri appear to be lagging. Missouri state health officials and federal government officials have sparred over at least four data issues.

CDC spokesperson Kate Fowlie said a state file recording over 34,000 administered doses did not upload to federal systems due to data errors in January, and the state took two weeks to fix it. She added the CDC and Missouri have had an ongoing conversation about missing data from a provider who had improperly submitted counts of doses given.

Crumbliss also said some 76,000 unused doses are in the long-term care facilities pharmacy program with CVS and Walgreens, which slows down Missouri's vaccination rate. The federal initiative has come under fire for its delays.

But according to the CDC, only 50,000 or so doses in the pharmacy program are left to be administered in Missouri. "A handful of long-term care facilities in Missouri had a late start on their first clinics, and are therefore still wrapping up the third and final clinics," Fowlie said, noting the state could work with the federal partnership to redistribute any remaining doses.

A Political Matter

At the very heart of the heartland, Missouri is one of the states that never enacted a mask mandate — not even after the Republican governor and his wife contracted COVID-19 in September.

Parson also hasn't shied away from fights with health officials. After Garza called for more vaccine doses to be allocated to the St. Louis area in early February, Parson accused him of spreading "fear and panic" with false information.

But after weeks of outcry, the state began to target the more populated St. Louis and Kansas City areas. Parson has also begun tweeting in support of local public health officials.

Still, the political animus against public health is continuing in the Missouri legislature — as it is in at least 23 other states — where lawmakers are weighing bills to curtail public health powers. The deployment of quarantine orders and other long-standing public health powers to combat the pandemic are now up for debate, while public health departments fight for funding.

"No one is wearing masks in the Capitol, and you're asking public health officials to go and testify in person, against their own guidance," said Will Marrs, a lobbyist for the Missouri Association of Local Health Agencies. "It's very much not normal."

Legislators did not fight, however, over an emergency ruling for businesses and organizations to officially jump the vaccination line. So far, at least 90 have applied. Records obtained by KHN show that the state health department approved at least 15 entities to get the vaccines earlier, including healthcare giant Centene and the St. Louis Convention and Visitors Commission, as well as libraries and companies assisting in COVID testing and vaccine manufacturing.

The Funding Question

Even amid a pandemic, it's been a struggle to get money to local health departments. The state used $9.8 million initially sent from the CDC last spring, instead of passing it along to local health departments.

Last summer, state legislators decided that county commissioners would determine whether local health departments got CARES Act funding. Many commissioners were mad at their health departments for shutting down local businesses, so they refused to fork over funds, said Larry Jones, executive director for the Missouri Center for Public Health Excellence, a consortium of public health leaders.

According to a state health department survey, at least 40 local health departments hadn't received any of the money as of early October. Those that did reported an average of 8% of county CARES money, instead of the state-recommended 15%.

In Kansas City, over $226,000 in CARES funds was allocated over the summer to Cruise Holidays, a travel company, according to Platte County's Landmark newspaper. It wasn't until this March that the local health department received almost $228,000, said department spokesperson Natalie Klaus, far less than the $1.8 million the state recommended.

The state has been allocated $55 million from the CDC for the vaccine rollout, of which state health department spokesperson Lisa Cox said $20 million is heading to local departments soon. More is expected to come in the new $1.9 trillion federal stimulus package.

Jones is concerned history will repeat itself with vaccination funding not getting where it helps the most people. Brian Castrucci, CEO of the de Beaumont Foundation, which advocates for public health, also isn't optimistic.

"How confident are we that states that are actively trying to limit public health authority are going to do a good job of spending this money appropriately?"

KHN data reporter Hannah Recht contributed to this report.

Lauren Weber: LaurenW@kff.org, @LaurenWeberHP

Inmates say numerous COVID deaths could be preventable. They blame staffing shortages and guards who don't wear masks.

This article was published on Thursday, March 25, 2021 in Kaiser Health News.

By Eric Berger

One November night in a Missouri prison, Charles Graham woke his cellmate of more than a dozen years, Frank Flanders, saying he couldn't breathe. Flanders pressed the call button. No one answered, so he kicked the door until a guard came.  

Flanders, who recalled the incident during a phone interview, said he helped Graham, 61, get into a wheelchair so staff members could take him for a medical exam. Both inmates were then moved into a COVID-19 quarantine unit. In the ensuing days, Flanders noticed the veins in Graham's legs bulging, so he put towels in a crockpot of water and placed hot compresses on his legs. When Graham's oxygen levels dropped dangerously low two days later, prison staff members took him to the hospital.

"That ended up being the last time that I seen him," said Flanders, 45.

Graham died of COVID on Dec. 18, alarming Flanders and other inmates at the Western Missouri Correctional Center in Cameron, about 50 minutes northeast of Kansas City. His death reinforced inmates' concerns about their own safety and the adequacy of medical care at the prison. Such concerns are a major reason Flanders and many other inmates said they are wary of getting vaccinated against COVID-19. Their hesitancy puts them at greater risk of suffering the same fate as Graham.

Inmates pointed to numerous COVID deaths they considered preventable, staffing shortages and guards who don't wear masks. While corrections officials defended their response to COVID, Flanders said he's apprehensive about how the department handles "most everything here recently," which colors how he thinks about the vaccines.

Reluctance to get a COVID vaccine is not unique to Missouri inmates. At a county jail in Massachusetts, nearly 60% of more than 400 people incarcerated said in January they would not agree to be vaccinated. At a federal prison in Connecticut, 212 of the 550 inmates offered the vaccines by early March declined the shots, including some who were medically vulnerable, The Associated Press reported.

The Missouri Department of Corrections said March 12 that more than 4,200 state inmates had received the vaccine out of 8,000 who were eligible because they were at least 65 years old or had certain medical conditions. Officials were still working to vaccinate 1,000 additional eligible inmates who had requested the shots. The department had not begun vaccinating the remaining 15,000 inmates or surveyed them to determine their interest in the vaccines. So far, about 18% of the total prison population has been vaccinated, which roughly tracks with the overall rate in Missouri even though inmates are at higher risk for COVID than Missourians generally and should be easier to vaccinate given they are already in one place together.

Missouri placed the majority of inmates in its lowest vaccine priority group. It is one of 14 states to either do that or not specify when they will offer the vaccines to inmates, according to the COVID Prison Project, which tracks data on the virus in correctional facilities.

Another is Colorado, where Democratic Gov. Jared Polis moved inmates to the back of the vaccine line amid public pressure. The emergence of a more contagious variant of the virus at one prison, however, forced officials to adjust their plans and instead start vaccinating all inmates at that facility.

Lauren Brinkley-Rubinstein, prison project co-founder and professor of social medicine at the University of North Carolina, said that disregarding health officials' recommendation to prioritize people living in tight quarters might make inmates less trustful of prison staff "when they come around and say, 'Hey, it's finally your turn. Let me inject you with this.'"

States cannot mandate that inmates take the vaccines. But Missouri officials have tried to encourage them by distributing safety information about it, including a video debunking myths featuring a scientist from Washington University in St. Louis.

But persuasion is proving difficult at Western Missouri, given inmates' longtime distrust of prison management. Flanders, Graham and others were transferred there from neighboring Crossroads Correctional Center following a 2018 riot that caused an estimated $1.3 million in damage and led to its closure. Inmates were angry that staff shortages had reduced time for recreation and other programming.

Officials acknowledge that staff shortages have persisted through the pandemic. "Corrections is not the most popular place to work right now," Missouri corrections director Anne Precythe said at an early March NAACP town hall on COVID and prisons.

Flanders, who is serving a life sentence for first-degree robbery, said the prison didn't have enough nursing staffers to check on him during a bout with mild COVID in November. He said other sick inmates also didn't receive appropriate medical attention. Karen Pojmann, a corrections department spokesperson, said she could not comment on specific offenders' medical issues.

Tim Cutt, executive director of the Missouri Corrections Officers Association, said he's seen no evidence that Western Missouri even had a plan to contain COVID. "They were quarantining for a while," he said, "but it was a haphazard attempt."

Also fueling skepticism of prison healthcare, inmates said, is the failure of many staff members to follow the corrections department's mask mandate. Byron East, who is serving a life sentence for murder at South Central Correctional Center, two hours southwest of St. Louis, said in a phone interview that he has begged officers — many of whom live in conservative, rural areas where masks are less common — to wear face coverings.

"As an employee, your job is to protect, and we are not able to protect ourselves," said East, 53. "You can catch something and then come in here and spread it to us."

Amy Breihan, co-director of the Missouri office of the Roderick & Solange MacArthur Justice Center, a nonprofit civil rights law firm, said she didn't see a single officer wearing a mask on Feb. 10 when she visited a correctional facility in Bonne Terre, Missouri.

Corrections Department Deputy Director Matt Sturm confirmed Breihan's account at the NAACP town hall and said it has been addressed. He said the department expects staff members in all prisons to wear masks while inside when they can't stay 6 feet apart from others.

"Right from the beginning, the Department of Corrections in Missouri has taken COVID extremely serious," Sturm said. The department deployed "everything we could get our hands on to help either prevent or contain COVID," including equipment for ventilation and disinfection.

Still, Missouri has reported at least 5,500 COVID cases and 48 deaths among inmates at the state's adult correctional institutions during the pandemic. The department doesn't break down COVID deaths by prison, but data from the advocacy group Missouri Prison Reform showed Western Missouri had 21 total deaths from COVID or other causes last year, more than any other state prison even though its population isn't the largest. Statistics on deaths in the previous year were not immediately available.

An automatic email reply from Eve Hutcherson, a former spokesperson for Corizon Health, which manages healthcare in Missouri prisons, directed a reporter to Steve Tomlin, senior vice president of business development, but he didn't respond to questions. The company, one of the country's largest for-profit correctional healthcare providers, faced more than 1,300 lawsuits over five years, according to a 2015 report from the financial research firm PrivCo. In Arizona, Corizon paid a $1.4 million fine for failing to comply with a 2014 settlement to improve inadequate healthcare for inmates.

Despite concerns about prison healthcare, however, some inmates have agreed to get the shot. East, who is Black, said he initially decided against it because he didn't trust prison health and thought about the legacy of the Tuskegee experiments from 1932 to 1972, when researchers withheld treatment for Black men infected with syphilis. But he changed his mind after reading about how safe the vaccines are.

Flanders, meanwhile, is still weighing whether to get vaccinated as he mourns the death of his longtime cellmate Graham, a convicted murderer whom he considered a friend and father figure.

Flanders' mother, Penny Kopp, said Graham helped Flanders manage his finances and kept him from gambling and getting involved with "inmates who are troublemakers." Kopp, a former corrections officer in Indiana and Colorado, said she understands the challenges of working in a prison but wonders if enough was done to save her son's cellmate.

Flanders said getting the shot would mean putting himself at the mercy of prison staffers, as Graham did — and that's something he's not ready to do.

While Black people are twice as "wary" of participating in research, compared with white people, they are equally willing to participate when asked.

This article was published on Thursday, March 25, 2021 in Kaiser Health News.

By April Dembosky, KQED

For months, journalists, politicians and health officials — including New York Gov. Andrew Cuomo and Dr. Anthony Fauci — have invoked the infamous Tuskegee syphilis study to explain why Black Americans are more hesitant than white Americans to get the coronavirus vaccine.

"It's 'Oh, Tuskegee, Tuskegee, Tuskegee,' and it's mentioned every single time," said Karen Lincoln, a professor of social work at the University of Southern California and founder of Advocates for African American Elders. "We make these assumptions that it's Tuskegee. We don't ask people."

When she asks Black seniors in Los Angeles about the vaccine, Tuskegee rarely comes up. People in the community talk about contemporary racism and barriers to healthcare, she said, while it seems to be mainly academics and officials who are preoccupied with the history of Tuskegee.

"It's a scapegoat," Lincoln said. "It's an excuse. If you continue to use it as a way of explaining why many African Americans are hesitant, it almost absolves you of having to learn more, do more, involve other people — admit that racism is actually a thing today."

It's the health inequities of today that Maxine Toler, 72, hears about when she asks her friends and neighbors in Los Angeles what they think about the vaccine. As president of her city's senior advocacy council and her neighborhood block club, Toler said she and most of the other Black seniors she talks with want the vaccine but are having trouble getting it. And that alone sows mistrust, she said.

Toler said the Black people she knows who don't want the vaccine have very modern reasons for not wanting it. They talk about religious beliefs, safety concerns or a distrust of former U.S. President Donald Trump and his contentious relationship with science. Only a handful mention Tuskegee, she said, and when they do, they're fuzzy on the details of what happened during the 40-year study.

"If you ask them 'What was it about?' and 'Why do you feel like it would impact your receiving the vaccine?' they can't even tell you," she said.

Toler knows the details, but she said that history is a distraction from today's effort to get people vaccinated against the coronavirus.

"It's almost the opposite of Tuskegee," she said. "Because they were being denied treatment. And this is like, we're pushing people forward: Go and get this vaccine. We want everybody to be protected from COVID."

Questioning the Modern Uses of the Tuskegee Legacy

The "Tuskegee Study of Untreated Syphilis in the Negro Male" was a government-sponsored, taxpayer-funded study that began in 1932. Some people believe that researchers injected the men with syphilis, but that's not true. Rather, the scientists recruited 399 Black men from Alabama who already had the disease.

Researchers told the men they had come to Tuskegee to cure "bad blood," but never told them they had syphilis. And, the government doctors never intended to cure the men. Even when an effective treatment for syphilis — penicillin — became widely available in the 1940s, the researchers withheld it from the infected men and continued the study for decades, determined to track the disease to its endpoint: autopsy.

By the time the study was exposed and shut down in 1972, 128 of the men involved had died from syphilis or related complications, and 40 of their wives and 19 children had become infected.

Given this horrific history, many scientists assumed Black people would want nothing to do with the medical establishment again, particularly clinical research. Over the next three decades, various books, articles and films repeated this assumption until it became gospel.

"That was a false assumption," said Dr. Rueben Warren, director of the National Center for Bioethics in Research and Healthcare at Tuskegee University in Alabama, and former associate director of minority health at the Centers for Disease Control and Prevention from 1988 to 1997.

A few researchers began to question this assumption at a 1994 bioethics conference, where almost all the speakers seemed to accept it as a given. The doubters asked, what kind of scientific evidence is there to support the notion that Black people would refuse to participate in research because of Tuskegee?

When those researchers did a comprehensive search of the existing literature, they found nothing.

"It was apparently a 'fact' known more in the gut than in the head," wrote lead doubter Dr. Ralph Katz, an epidemiologist at the New York University College of Dentistry.

So Katz formed a research team to look for this evidence. They completed a series of studies over the next 14 years, focused mainly on surveying thousands of people across seven cities, from Baltimore to San Antonio to Tuskegee.Bottom of Form

The conclusions were definitive: While Black people were twice as "wary" of participating in research, compared with white people, they were equally willing to participate when asked. And there was no association between knowledge of Tuskegee and willingness to participate.

"The hesitancy is there, but the refusal is not. And that's an important difference," said Warren, who later joined Katz in editing a book about the research. "Hesitant, yes. But not refusal."

Tuskegee was not the deal breaker everyone thought it was.

These results did not go over well within academic and government research circles, Warren said, as they "indicted and contradicted" the common belief that low minority enrollment in research was the result of Tuskegee.

"That was the excuse that they used," Warren said. "If I don't want to go to the extra energy, resources to include the population, I can simply say they were not interested. They refused."

Now researchers had to confront the shortcomings of their own recruitment methods. Many of them never invited Black people to participate in their studies in the first place. When they did, they often did not try very hard. For example, two studies of cardiovascular disease offered enrollment to more than 2,000 white people, compared with no more than 30 people from minority groups.

"We have a tendency to use Tuskegee as a scapegoat, for us, as researchers, not doing what we need to do to ensure that people are well educated about the benefits of participating in a clinical trial," said B. Lee Green, vice president of diversity at Moffitt Cancer Center in Florida, who worked on the early research debunking the assumptions about Tuskegee's legacy.

"There may be individuals in the community who absolutely remember Tuskegee, and we should not discount that," he said. But hesitancy "is more related to individuals' lived experiences, what people live each and every day."

'It's What Happened to Me Yesterday'

Some of the same presumptions that were made about clinical research are resurfacing today around the coronavirus vaccine. A lot of hesitancy is being confused for refusal, Warren said. And so many of the entrenched structural barriers that limit access to the vaccine in Black communities are not sufficiently addressed.

Tuskegee is once again being used as a scapegoat, said Lincoln, the USC sociologist.

"If you say 'Tuskegee,' then you don't have to acknowledge things like pharmacy deserts, things like poverty and unemployment," she said. "You can just say, 'That happened then … and there's nothing we can do about it.'"

She said the contemporary failures of the healthcare system are more pressing and causing more mistrust than the events of the past.

"It's what happened to me yesterday," she said. "Not what happened in the '50s or '60s, when Tuskegee was actually active."

The seniors she works with complain to her all the time about doctors dismissing their concerns or talking down to them, and nurses answering the hospital call buttons for their white roommates more often than for them.

As a prime example of the unequal treatment Black people receive, they point to the recent Facebook Live video of Dr. Susan Moore. When Moore, a geriatrician and family medicine physician from Indiana, got COVID-19, she filmed herself from her hospital bed, an oxygen tube in her nose. She told the camera that she had to beg her physician to continue her course of remdesivir, the drug that speeds recovery from the disease.

"He said, 'Ah, you don't need it. You're not even short of breath.' I said 'Yes, I am,'" Moore said into the camera. "I put forward and I maintain, if I was white, I wouldn't have to go through that."

Moore died two weeks later.

"She knew what kind of treatment she should be getting and she wasn't getting it," said Toler of L.A., contrasting Moore's treatment with the care Trump received.

"We saw it up close and personal with the president, that he got the best of everything. They cured him in a couple of days, and our people are dying like flies."

Toler and her neighbors said that the same inequity is playing out with the vaccine. Three months into the vaccine rollout, Black people made up about 3% of Californians who had received the vaccination, even though they account for 6.2% of the state's COVID deaths.

The first mass-vaccination sites set up in the Los Angeles area — at Dodger Stadium and at Disneyland — are difficult to get to from Black neighborhoods without a car. And you practically needed a computer science degree to get an early dose, as snagging an online appointment required navigating a confusing interface or constantly refreshing the portal.

White, affluent people have been snatching up appointments, even at clinics intended for hard-hit Black and Latino communities, while people of color have had trouble getting through.

It's stories like these, of unequal treatment and barriers to care, that stoke mistrust, Lincoln said. "And the word travels fast when people have negative experiences. They share it."

To address this mistrust will require a paradigm shift, said Warren of Tuskegee University. If you want Black people to trust doctors and trust the vaccine, don't blame them for their distrust, he said. The obligation is on health institutions to first show they are trustworthy: to listen, take responsibility, show accountability and stop making excuses. That, he added, means providing information about the vaccine without being paternalistic and making the vaccine easy to access in Black communities.

"Prove yourself trustworthy and trust will follow," he said.

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

April Dembosky, KQED: @adembosky