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Vaccinations in Black and White: Hesitancy or exclusion?

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Vaccinations in Black and White: Hesitancy or exclusion? - North Carolina Health News

Two months into the vaccine rollout, Black North Carolinians continue to lag behind white residents.

By Melba Newsome

This story is  supported by a grant from the Pulitzer Center for Crisis Reporting and co-published by NC Health News, the Charlotte Post and the Charlotte Observer.

For most of 2020, the coronavirus dictated every aspect of Erika Gantt’s life. For months the orthopedic surgeon saw her patients via telemedicine and canceled or rescheduled her elective surgeries. Accustomed to wearing an N95 mask during surgery, it became a near-permanent – and very uncomfortable – fixture on her face. At home, she implemented hospital-like procedures for the whole family to avoid infection.

There were few get-togethers with friends or extended family, no vacations and her two daughters, Evyn and Kyle, have had virtual school since March. Her son, Alec, took a gap year after learning that the 2021 academic year at the University of California, Berkeley would be virtual again.

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As the year drew to a close, Gantt was eager to return to a pre-pandemic life.

The consensus among public health officials and infectious disease experts is that a coronavirus vaccine is the best chance we have to end the pandemic and return to something resembling normal life. But its success depends on the willingness of eligible individuals to be vaccinated.

Who wants a vaccine

When the vaccine rollout began, as a frontline healthcare worker, Gantt was among the first people in the state scheduled for an injection. For her, December 23rd, the day of her first shot, couldn’t come soon enough. While all the OrthoCarolina clinical employees were given access to the vaccine around the same time, the response was two-tiered.

“My physician colleagues were feeling like I was,” says Gantt. “They couldn’t get it fast enough.”

She said she never heard any of the physicians – Black or white – hesitate to take the vaccine.

“My colleagues who are nurses, surgical scrub techs, nurse assistants who were multi-racial were much more hesitant,” she said.

Gantt’s medical background allowed her to do her own due diligence and feel comfortable about the research and approval process that led to the vaccine.

“There was some foolishness that Trump was going to put something in our arms that hadn’t been rigorously looked at,” says Gantt. “I believed in the rigor of the FDA. They waited 60 days. Most adverse events and other vaccine trials took up to 45 days. So they went an extra 15 days and there still were no adverse events.

“I felt like the safety issue had been answered.”

Shenika Hill, 42, has been a surgical tech for nearly 12 years. She acknowledges she hasn’t followed the news closely but what she has heard doesn’t instill confidence. When she had a chance to get the vaccine in December, she took a pass.

“Mentally, I’m not comfortable with the length of time it’s been on the market to be getting it injected into me,” says Hill. “I’m taking a wait-and-see attitude and I’ll just go from there.”

Hill’s sister, several co-workers and a close friend have all contracted and been very sick with COVID, so she knows it’s real and has come to believe it’s almost unavoidable.

“At this point, you’re lucky if you don’t get COVID because you got people that are doing what they are supposed to do– staying at home washing their hands, being very careful — and still getting it.”

Nonetheless, delay is still a risk she’s willing to take because her distrust runs deeper than this one vaccine. When explaining her reluctance, Hill mentions the Tuskegee study “where they injected the men with the syphilis.”

A legacy of distrust

Like so many people of color, Hill’s mistrust of medical science has been shaped by a fundamental misunderstanding of this seminal event. In 1932, the U.S. Public Health System recruited 600 poor Black men in Macon County, Alabama to participate in a study to monitor the effect of untreated syphilis on the human body. At the time, there was no known treatment for the disease but when penicillin was shown to be an effective treatment 15 years later, the researchers withheld the drug. They subsequently watched the men die, go blind, insane or experience other severe health problems due to their untreated syphilis.

The real legacy of Tuskegee is that Black people are at much greater risk of being denied care than being given malignant or malicious treatments.

State Health and Human Services Secretary Mandy Cohen said the agency tried to address vaccine hesitancy even before there was a vaccine.

“We knew we had to do education on how the vaccines work, how they are tested, are they safe and effective,” explained Cohen. “Our research showed that there was going to be hesitancy in the African American, Hispanic and Latinx communities and with even some folks in rural areas being more hesitant. That’s why we have this campaign to help folks get good information.”

DHHS implemented a Vaccine 101 training program for community advocates to reassure skeptics that the drug is both safe and effective.

Who gets a vaccine

As of March 7, 2,507,336 doses of the vaccine have been administered statewide. But as the vaccination rate goes up, Cohen and her team are increasingly dogged by questions about access. Statewide, Blacks account for 21 percent of the population, 21 percent of the COVID cases and 25 percent of the deaths but only 15.9 percent of the vaccines administered so far.

The numbers are worse in Mecklenburg County, where Blacks make up 32 percent of the population but only 19 percent of people who have received first doses of the vaccines. Distribution in Charlotte improved since people started getting vaccinated in December but people in the city’s most affluent neighborhoods continue to receive vaccines at higher rates than people in high-poverty neighborhoods, according to an Observer report.

This disparity is often attributed to vaccine hesitancy among people of color. But in the first of a series of fireside chats hosted by DHHS Secretary Cohen, Rev. William Barber made the case that this is also about access since many elderly people in his hometown of Goldsboro desperately want a vaccine but can’t get one.

“My mother is one of the most known senior citizens in eastern North Carolina. She’s been calling for two weeks,” said Barber. “If my mama can’t get a call back, oh Lord, have mercy!

“She’s been a school teacher for 50 years. If she has to go to the mayor and the county commissioner to try to get a call back, how is Sister Sally . . . going to get one? We have to look back at who’s getting the access and while we’re waiting on more doses, build that into the system.”

Vaccine hesitancy is decreasing

North Carolina Central University received a million-dollar grant from the N.C. Policy Collaboratory for COVID-19 research and care, to create the Advanced Center for COVID-19 Related Disparities (ACCORD) to study the public health and economic impact of COVID-19 in underserved communities in North Carolina.

Brittany Baker, assistant professor of clinical nursing at NCCU has been deeply involved in efforts to reduce vaccine hesitancy in the Black community.

Baker said they have seen attitudes change once vaccinations began.

“There’s this mistrust in the minority community as it relates to health care but on the flip side it’s like now they’re saying ‘why is it that the majority groups are able to get this vaccine and we’re left out and they’re intentionally trying to marginalize us? Black people were already dying at disproportionate rates,’” she said. “That moved a lot of people.”

Anne,* an employee of Novant Health, asked that her full name not be used because the company wants them to talk up the vaccine publicly. Weeks ago, Anne was a hard “no” for getting the vaccine but has now moved to a hesitant “yes” after learning more about the COVID long-haulers, people who continue to suffer from the side effects after being deemed recovered. That prospect frightened her more than death.

“If I were dead, not much would matter but the thought of immeasurably diminished quality of life over many years is my biggest concern,” says Anne. “That would include significant disability. With what we are learning about the long haulers, the vaccine would be the best option of two bad options.”

Gantt says she’s personally witnessed a dramatic shift in attitudes in her workplace in recent weeks.

“I think it was the rough month of January that made people really wake up. The people that could have gotten those appointments immediately but hung back have now changed their minds.”

Gantt has experienced her own change in attitude. Her post-vaccine giddiness has given way to the day-to-day reality that nothing in her life has really changed. There’s still no church, no happy hour with her girlfriends, no Mardi Gras or spring break vacation.

“I realized that the vaccination means nothing if everybody else isn’t vaccinated,” she says. “My children aren’t vaccinated, my friends aren’t vaccinated, the community isn’t vaccinated.”

shows a health care provider in a mask holding a folder talking to a patient who's als in a mask.

As COVID strain on health systems magnifies, preventative care has not yet bounced back

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As COVID strain on health systems magnifies, preventative care has not yet bounced back - North Carolina Health News

Canceled doctor’s appointments and delayed medical procedures have caused a dip in child vaccinations and cancer screenings. A sizable chunk of those patients have not yet caught up on their care.

By Liora Engel-Smith

As the coronavirus quickly spread across the United States in February and March, hospital systems, fearing a flood of patients and worried about having enough personal protective equipment for their workers, suspended many routine appointments and elective procedures in a move to conserve resources.

When clinics and hospitals resumed appointments and surgeries in late spring, most patients were hesitant to return. But even as health systems report a return to business as usual, it appears that some patients have stayed away.

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The pandemic will soon enter its 10th month in North Carolina, and experts worry that forgone cancer and other screenings, dental care and delayed child vaccinations could cause a host of other public health problems.

Nationally, coronavirus delayed care accounts for thousands of delayed appointments and procedures, said Cynthia Cox, vice president of the Kaiser Family Foundation.

“We know we’re only back up to 80 or 90 percent of where we were before the pandemic in terms of numbers of visits,” Cox, who recently spoke at the North Carolina Institute of Medicine’s annual meeting, said.

“If we were making up for all those losses, you would expect utilization to be not just 100 percent, but over a hundred to capture those people who missed care.”

The implications of canceling care are particularly salient as health systems across the state wrestle with rising coronavirus hospitalizations. Though some regions are slated to run out of beds as early as January, health care leaders have not spoken publicly about once again delaying care or deferring elective procedures.

But the public health effects of previous delays could have lasting effects in infectious disease control, cancer and chronic disease treatment, dental health, and mental health.

The first effects of this delayed care are already becoming apparent. According to data from the Centers for Disease Control and Prevention, almost 300,000 excess deaths were tallied in the United States between January and mid-October 2020. Two-thirds of these deaths are of people who got coronavirus. The rest of the deaths are attributed to other causes, some of which could have included delayed medical care.

A graph that shows health care spending decline during the pandemic
The coronavirus pandemic caused health care spending to fall in March and April, and spending has not yet rebounded fully, suggesting that a segment of the population has continued to delay care. Graph credit: Kaiser Family Foundation.

Mental health visits have not kept up with demand

The advancement of telemedicine has been a bright spot in a pandemic that has already claimed thousands of lives across the state. Nationally, Cox said, one-in-ten visits are now performed via telehealth. At the same time, in-person care has plummeted, and telehealth has not grown enough to make up for that lost care. Most televisits in the country — roughly 60 percent — are for mental health conditions, Cox added, a trend that makes sense as the pandemic’s uncertainty and isolation prompted a rise in mental health conditions.

Blue Cross Blue Shield of North Carolina, the insurer with the largest market share in the state, has seen similar trends, said Ish Bhalla, associate medical director of Behavioral Health Value Transformation. Bhalla, who also spoke at the NCIOM meeting, said telehealth visit claims increased by 7,000 percent since March, many of these claims come from psychiatric health providers.

Whereas the number of people reporting depression and anxiety quadrupled from 10 percent to 40 percent, the increase in telehealth visits hasn’t kept pace, according to Cox.

“There were still tremendous access barriers for mental health services before the pandemic,” she said. “And I’m sure with this many more people needing mental health services it’s gotta be worse.”

Concerns over parallel outbreaks

This year’s flu vaccination rates have been stronger than last year in both children and adults, according to Cox, but vaccinations for other contagious diseases have been weak.

Nationwide, the pandemic caused almost 300,000 kids to miss their vaccinations, she added.

If enough children miss their vaccinations, rates of contagious diseases such as measles and rubella could increase, particularly as restrictions lift and children return to school, according to the state Department of Health and Human Services.

Forgone cancer screenings and procedures

A sizable portion of patients are delaying other types of care too, including dental visits, specialty visits such as for dermatology and cancer. Collectively, one in four adults delayed some medical care because of coronavirus, according to Cox. In the world of cancer screening, that amounts to 300,000 delayed breast cancer screenings, 100,000 missed colonoscopies and 40,000 forgone Pap smears nationwide.

During that time, the number of new cancer diagnoses decreased, but it isn’t because fewer people were getting cancer, Cox said, it’s because fewer cancers were being detected. Elective procedures — which can include removing small, non-aggressive tumors — have also yet to fully rebound, according to Cox.

Emmanuel Zervos, surgical oncologist at Vidant Health said similar forces are at play with Vidant’s patients, many of whom already face significant barriers in accessing care. Zervos, who also spoke at NCIOM’s annual meeting, said that roughly 4,500 Vidant patients missed their cancer screenings since the pandemic began.

“We have no idea whether they dropped out altogether, or rescheduled their screening,” he said. “In order to recover these patients, you would expect to see a surge in screenings rather than a return to baseline.”

Patients who had a cancer diagnosis when the pandemic began are also at risk for poorer outcomes because of coronavirus restrictions. A 71-year-old breast cancer patient, for example, refused to get surgery in the spring because COVID restrictions dictated that her husband wouldn’t be able to visit her after the procedure, according to Zervos.

Other patients, particularly those in clinical trials, also experienced delayed care as studies got suspended in the spring, he added.

The long-term implications of these delays will likely become clearer in months or even years. Interruptions in care, however, will likely result in worse health outcomes even for patients who have non-aggressive cancers.

These delays and disruptions in cancer diagnosis and care have disproportionately affected African Americans in eastern North Carolina, Zervos said, noting this is a group that already experiences significant disparities in cancer diagnosis and treatment.

Job-based health insurance costs are up 4 percent this year, 55 percent in past decade

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Job-based health insurance costs are up 4 percent this year, 55 percent in past decade - North Carolina Health News

Insurance cost increases are in the single digits, but they're still more than the increasing rate of inflation, driven, in part, by uncertainty caused by the COVID-19 pandemic.

By Phil Galewitz

Kaiser Health News

Health insurance costs for Americans who get their coverage through work continued a relentless march upward with average family premiums rising 4 percent to $21,342 this year, according to a study published Thursday.

The annual survey by KFF found workers on average are paying nearly $5,600 this year toward family coverage, up from about $4,000 in 2010 and $1,600 in 2000. (KHN is an editorially independent program of KFF.)

While health insurance costs rose a modest amount in 2020, as has been the trend in recent years, they soared 55 percent in the past decade — more than twice the pace of inflation and wages.

About 157 million Americans rely on employer-sponsored coverage — far more than any other type of coverage, including Medicare, Medicaid and individually purchased insurance on the Affordable Care Act exchanges. More than half of employers provide insurance to at least some workers.

“Conducted partly before the pandemic, our survey shows the burden of health costs on workers remains high, though not getting dramatically worse,” Drew Altman, KFF’s CEO, said in a statement. “Things may look different moving forward as employers grapple with the economic and health upheaval sparked by the pandemic.”

The survey was conducted from January to July as the coronavirus pandemic took hold and upended the nation’s economy. Many of the details of the employers’ plans that the researchers examined were set before the virus hit.

Since 2012, the cost of family coverage has increased 3 percent to 5 percent annually. It’s been more than 15 years since these costs were rising at double-digit rates.

Employers help shield workers from much of the cost of their health insurance premiums, though employees often feel the impact via higher deductibles, copayments and lower wages.

On average, workers pay 17 percent of the premium for single coverage and 27 percent for family coverage, the survey found. Workers at smaller companies pay 35 percent of the premium for family coverage, compared with 24 percent for larger companies, the survey found.

The average annual deductible for single coverage is now $1,644, up 25 percent in the past five years and 79 percent in the past decade.

Workers with coverage are exposed to higher costs when using the hospital since 65 percent have coinsurance, which means they are responsible for a fixed share of the charge, and 13 percent contribute a copayment, or fixed fee per visit or service. The average coinsurance for hospital admission is 20 percent and average copayment is $311 per hospital admission.

Workers are protected for catastrophic costs through limits set on their out-of-pocket spending in provider networks, although those amounts vary by employer: 11 percent face a maximum of less than $2,000, while 18 percent are in a plan with a maximum of $6,000 or more.

line graph showing the cost of insurance premiums, compared to inflation and workers earnings over the past two decades
Average annual increases in premiums for family coverage compared to other indicators, 2000-2020.
Sources: KFF Employer Health Benefits Survey, 2018-2020; HRET Survey of Employer-Sponsored Health Benefits, 1999-2017. Bureau of Labor Statistics, Consumer Price Index, US City Average of Annual Inflation, 1999-2020; Bureau of Labor Statistics, Seasonally adjusted data from the Current Employment Statistics Survey, 1999-2020

The study also noted that large employers have made it easier for workers to access care by adopting coverage for telemedicine in recent years. Nearly 9 in 10 companies that have 200 or more workers and offer insurance covered these medical appointments done via telephone or computer this year, up from fewer than 3 in 10 in 2015, according to the research. During the pandemic, telemedicine usage has increased markedly as people sought care from the safety of their home.

The KFF study is based on a telephone survey of 1,765 randomly selected nonfederal public and private employers with three or more workers from January to July.

Florida’s cautionary tale: How gutting and muzzling public health fueled COVID fire

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Florida’s cautionary tale: How gutting and muzzling public health fueled COVID fire - North Carolina Health News

As the nation starved the public health system intended to protect communities against disease, staffing and funding fell faster and further in the Sunshine State, leaving it especially unprepared for the worst health crisis in a century.

Laura Ungar and Jason Dearen, The Associated Press and Hannah Recht

JACKSONVILLE, Fla. — On a sweltering July morning, Rose Wilson struggled to breathe as she sat in her bed, the light from her computer illuminating her face and the oxygen tubes in her nose.

Wilson, a retiree who worked as a public health department nurse supervisor in Duval County for 35 years, had just been diagnosed with COVID-19-induced pneumonia. She had a telemedicine appointment with her doctor.

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Staring back from her screen was Dr. Rogers Cain, who runs a tidy little family medical clinic a couple of blocks from the Trout River in north Jacksonville, a predominantly Black area where the coronavirus is running roughshod. Wilson, 81, was one of Cain’s patients who’d tested positive — he had seven other COVID patients that morning before noon. Three of her grown children had contracted the virus, too.

“It started as a drip, drip, drip in May,” said Cain, his voice muffled by his mask. “Now it’s more like a faucet running.”

Cain and Wilson are nervous. Over the past two decades, both watched as the county health department was gutted of money and people, hampering Duval’s ability to respond to outbreaks, including a small cluster of tuberculosis cases in 2012. And now they face the menace of COVID-19 in a city once slated to host this week’s Republican National Convention, in one of the states leading the latest U.S. surge.

Florida is both a microcosm and a cautionary tale for America. As the nation starved the public health system intended to protect communities against disease, staffing and funding fell faster and further in the Sunshine State, leaving it especially unprepared for the worst health crisis in a century.

Although Florida’s population grew by 2.4 million since 2010 to make it the nation’s third-most-populous state, a joint investigation by KHN and The Associated Press has found, the state slashed its local health departments’ staffing — from 12,422 full-time equivalent workers to 9,125 in 2019, the latest data available.

According to an analysis of state data, the state-run local health departments spent 41% less per resident in 2019 than in 2010, dropping from $57 to $34 after adjusting for inflation. Departments nationwide have also cut spending, but by less than half as much ― an average of 18%, according to data from the National Association of County and City Health Officials.

Even before the pandemic hit, that meant fewer investigators to track, trace and contain diseases such as hepatitis. It meant fewer public health nurses to teach people how to protect themselves from HIV/AIDS or the flu. When the wave of COVID-19 inundated Florida, the state was caught flat-footed when it mattered most, its main lines of defense eviscerated.

Now, confirmed cases have soared past 588,000 and deaths have risen to more than 10,000. Concerns over the virus prompted Republicans to cancel plans for an in-person convention in Jacksonville, opting for a pared-down version in North Carolina.

Health experts blame the funding cuts on the Great Recession and choices by a series of governors who wanted to move publicly funded state services to for-profit companies.

And when the pandemic took hold, they say, residents got mixed messages about prevention strategies like wearing masks from Republican Gov. Ron DeSantis and other political leaders. Voices within the health departments were muzzled.

“The reality, unfortunately, is people are going to die because of the irresponsibility of the decisions being made by the people crafting the budgets,” said Ron Bialek, president of the Public Health Foundation, a nonprofit in Washington, D.C., offering tools and training. “Public health can’t help us get out of this situation without our elected officials giving us the resources.”

State officials neither answered specific, repeated questions from KHN and The Associated Press about changes in public health funding, nor made staffers available for deeper explanations.

Dr. Leslie Beitsch, a former deputy secretary of Florida’s state health department, said failing to prepare for a foreseeable disaster “is governmental malpractice.” The nation’s pandemic response is only as good as the weakest link, he said. Since the virus respects no borders, other states feel the ripples of Florida’s failings.

Those failings are clear in Duval County, which had employed the equivalent of 852 full-time workers and spent $91 per person in 2008 but in 2019 had only 422 workers and spent just $34 per resident, according to the KHN-AP analysis of state data. That’s less than the typical list price of a single COVID test. Former county health director Dr. Jeff Goldhagen said the county’s team has been “dismantled to the extent that it could not really manage an outbreak.”

Yet it must.

Cain’s private north Jacksonville medical clinic alone has had about 60 confirmed COVID cases and eight deaths. “We are all on fire right now,” he said. “You have to have a fire department that is adequately equipped to put out the fire. ”

Republican Gov. Ron DeSantis speaks at a news conference at Universal Studios in Orlando, Florida, on June 3, 2020, as the theme park reopened for season pass holders. It opened to the general public two days later. (AP Photo/John Raoux)

Dwindling Budgets

Florida faced similar shortcomings around the time of the last great pandemic, the 1918 flu. Back then, according to a 1924 state report, public health workers faced too many demands and their efforts were “to some extent scattered and transitory.” The state could have used at least three more district health officers, the report said: “It is a source of regret and a matter of grave concern to public health workers that the funds available are not sufficient.”

County-based health departments began in 1930, providing more robust services closer to home. About 50 years later, legislation created state-administered primary care programs in which county health departments provided low-income Floridians with the type of basic health care and treatment most people now get at private doctors’ offices.

The 1990s saw a move toward privatization, particularly as Medicaid managed care took hold, said a 2004 paper in the Florida Public Health Review. Still, per-person spending on local public health rose until the late 1990s, when adjusted for inflation to 2019 dollars, peaking at $59.

Wilson, the retired public health nurse stricken with COVID-19, recalled how Duval County’s department started feeling the financial pain during former Republican Gov. Jeb Bush’s administration in the early 2000s and kept losing nurses and other staff until they were “very, very short.”

Rose Wilson is a retired public health nurse from Jacksonville, Florida, who was struck with COVID-19. Wilson recalls how Duval County’s health department started feeling the financial pain during former Gov. Jeb Bush’s administration in the early 2000s and kept losing nurses and other staff until they were “very, very short.” (Courtesy Rose Wilson via AP)

Beitsch, who worked for the state health department in the 1990s, said the downward trend continued under former Republican governors Charlie Crist and Rick Scott, fueled by a growing belief in shrinking government that flourished in many states. Florida’s leaders exerted more control over public health, Beitsch said, and “the amount of local autonomy has been diminishing with successive administrations.”

The recession that began in late 2007 sparked public health reductions across the nation that were especially harsh in Florida. By 2011, budget cuts and lack of money were the most frequently cited challenges in a Florida public health workforce survey, which pointed to growing needs. In the following years, the state had some of the nation’s highest rates of heart disease and diabetes.

Squeezed departments struggled and sometimes stumbled. A report from the state health department’s inspector general for the 2018-19 fiscal year, for example, found a series of lost and inconsistent shipments of lab specimens from county health departments to the state lab — not long before the pandemic would make labs more important than ever.

Former Gov. Rick Scott, a Republican, speaks after the end of the legislative session at the Florida State Capitol in Tallahassee, Florida, on March 11, 2018. (AP Photo/Mark Wallheiser)

As governor, Scott presided over the state from 2011 to 2019, when funding and staffing dropped most. Now a U.S. senator, he said through a spokesperson that he was unapologetic for health department cuts, which he characterized as a move toward “making government more efficient” without endangering public health.

“I’m sure that he had no problem with the cuts that were being made,” said Patrick Bernet, an associate professor in health administration at Florida Atlantic University. “To put it all on him is not fair because a bunch of little henchmen from the counties had to vote that way. … We keep voting in people who undervalue public health.”

Democratic state Sen. Janet Cruz, a legislator who has represented the Tampa region for a dozen years and sat on health care committees, said she watched lawmakers systematically cut money for health departments. When she questioned it, she said, some colleagues claimed the need wasn’t as great because the state was moving toward private family health care centers. “Public health in Florida has been wholly underfunded,” she said.

Some places have suffered more than others. Departments serving at least half a million residents spent $29 per person in 2019 on average, compared with $90 per person in departments serving 50,000 or fewer — a difference starker than the typical gap between larger and smaller departments nationally, according to an KHN-AP analysis. Experts can’t say exactly why the gap is wider in Florida, which has a state-run system, but point to politics and historical decisions about budgets.

Duval County’s health department spending was the equivalent of $34 per person, down 63% since 2008. Typically, about 22 workers, or 5% of the total staff, have been dedicated to preparing for and tracking disease outbreaks.

But when the pandemic hit, many there and elsewhere were diverted to fight the coronavirus, leaving little time for their typical duties such as mosquito abatement and tracking sexually transmitted infections such as syphilis.

“Current events demonstrate how bad a decision” the deep cuts to public health were, said Dr. Marissa Levine, a professor of public health and family medicine at the University of South Florida. “It’s really come back to haunt us.”

Visitors sunbathe on May 4, 2020, after Florida’s Clearwater Beach officially reopened to the public following the lifting of coronavirus restrictions. (AP Photo/Chris O’Meara)

Mixed and Muzzled Messages

The pandemic caught fire in Florida this summer as the state’s rapid reopening allowed people to flock to beaches, Disney World, movie theaters and bars.

The state has had more than half a million confirmed cases ― among them, players and workers for baseball’s Miami Marlins ― and 35,000 hospitalizations, yet DeSantis still hasn’t issued a mask mandate. Some local governments have. Jacksonville adopted one in late June, and about a week later Republican Mayor Lenny Curry announced he and his family were self-quarantining because he’d been exposed to someone who tested positive for the virus.

Chad Neilsen, director of infection prevention at the University of Florida-Jacksonville, lauded the mayor for the mask requirement, saying, “We know that masking works.” But he pointed out that other counties have different rules and that the inconsistent messaging breeds confusion.

St. Johns County began requiring masks in late July but only in county facilities. And DeSantis has appeared in public without a mask numerous times, including at an Aug. 13 coronavirus update briefing during which some other speakers wore them.

“One voice is so critical during a pandemic,” said Dr. Jonathan Kantor, a Jacksonville epidemiologist and dermatologist. “We have to have one voice, and consistent leadership that is modeling behavior if we want to get people to change their behaviors.”

Instead, experts in Florida said, public health workers have been silenced or told by top state officials what to say. For example, The Palm Beach Post reported that state leaders told school boards they needed health department approval to keep schools closed, then instructed health directors not to give it.

“All the communication is directed by the state, and localities are very limited in what they can do,” said Levine, the University of South Florida professor. “Anything to do with a mandate, there’s resistance to do at a state level. This includes the hot debate on masks. The locals have to extend the state messaging.” Local health officials “are being told bluntly: ‘Shut up,’” Bernet said. “They literally cannot speak.”

A man covers his nose with his shirt (left) as Luis Negron, a Miami Beach code compliance officer (right) talks to him about wearing a protective face mask amid the coronavirus pandemic, on Ocean Drive in Miami Beach, Florida, on July 24, 2020. Masks are mandated both indoors and outdoors in Miami Beach but not across the state. People found not wearing a mask in that city are subject to a civil fine of $50. (AP Photo/Lynne Sladky)

Beitsch, who now chairs the department of behavioral sciences and social medicine at Florida State University, said such limitations ― and similar mixed messages and silencing of medical experts at the national level ― fuels the politicization of public health and undermining of science.

“People think they should be listening to politicians and state legislative leaders about their health care. They’re not listening to health experts and the epidemiologists who say if you just wear a mask and if you just wash your hands, we can really, really reduce the spread of the virus,” said Cruz, the state senator. “People are confused, and they think this is a hoax and it’s nothing more than the flu.”

Meanwhile, the COVID caseload continues to rise, surpassing 25,000 in Duval County, with minorities stricken disproportionately, as elsewhere in the nation. In a county that’s 29% Black and 60% white, Black residents with COVID have been hospitalized at more than double the rate of white residents. Rates are also high for Floridians grouped together as “other,” including Native American, Asian and multiracial residents.

Duval County’s overall caseload is rising so fast that Goldhagen, the former health department director, said the agency has given up on contact tracing, which means trying to curb the virus by identifying and warning people who have been exposed.

“It’s impossible,” Goldhagen said. “Dismantling the system was a complete disregard for the health and well-being of the citizens of Florida.”

With an unequipped public health system, Wilson, the retired public health nurse, said it falls to everyone to lead Jacksonville, and Florida, out of the coronavirus crisis.

“My hope is that everybody begins to take this virus seriously, and wear their mask and stay social distancing. It can work if we do that,” said Wilson, whose condition has improved. “So, that’s my hope. Eventually there will be a vaccine that will curtail this virus. But until then, it’s up to us to help do that. And if we’re not serious about it, then we’re doomed.”

Workers perform coronavirus contact tracing from an office at the Florida Department of Health in Miami-Dade County in Doral, Florida, on May 13, 2020. Many county health offices have struggled to keep up with the influx of cases after years of staffing reductions. (AP Photo/Lynne Sladky)

This story is a collaboration between KHN and The Associated Press.

Methodology

Spending and staffing data for Florida’s local health departments is from the Florida Department of Health. Florida Atlantic University professor Patrick Bernet provided additional state data on staffing by program area. KHN-AP adjusted spending data for inflation using the Bureau of Economic Analysis’ state and local government deflator.

COVID-19 data by race is from the Florida Department of Health. KHN-AP calculated rates per 10,000 people using data on race, regardless of ethnicity, from the U.S. Census Bureau’s 2018 American Community Survey. Statewide COVID-19 cases per day are from Johns Hopkins University.

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Will COVID-19 help move primary care physicians away from the fee-for-service model?

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Will COVID-19 help move primary care physicians away from the fee-for-service model? - North Carolina Health News

The “medical MacGyvering” that took place early in the pandemic wasn’t limited to emergency physicians jerry-rigging personal protective equipment or ICU docs using FaceTime to connect patients to families. Small primary care practices also pivoted hard, but it’s come at a cost.

By Rose Hoban

When Karen Smith went to Jamaica in March, she planned a working vacation.

The Hoke County primary care doctor, whose practice thrives with about 3,000 patients, was in the island country to do some medical mission work when the first cases of COVID-19 were reported there.

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She’s a little unclear on the dates now, but some time around March 13, she got word that the Jamaican government was planning to close down the country.

“Anybody in this in the country would end up being in a 14-day quarantine,” she said. “I was like, ‘No way, I’m gonna get home.’”

Smith rushed back to North Carolina to find a panicked staff.

“Patients were canceling appointments, they didn’t want to come into the office,” she said. “We had PPE consisting of two N95s, one gown and one face shield and three goggles. And that was it. The sanitizer that we had been using, the bottle was half empty and we had no more.”

Smith made a beeline to the nearest Walmart where she snapped up the last 10 pairs of goggles for protective eyewear. They got personal protective equipment donations from Cape Fear Valley Hoke Hospital, medical associations, the community, wherever she could scrounge it up.

“I mean the prices they were gouging… what was $5 was now $25 and that was price gouging from our usual vendors, which was unreal,” she said. “We had also started ordering some of the supplies from Amazon and they were simply just out of stock.”

shows a woman who is wearing a gown, gloves, mask and goggles, to prevent being infected by COVID
Primary care physician Karen Smith displays full personal protective equipment at her office in Raeford. Smith said that her practice spent thousands of dollars on PPE early on in the pandemic. Photo courtesy: Karen Smith

In the midst of it all, Smith and her team pivoted from providing hands-on care to deploying telehealth for their patients. Just before Smith left for Jamaica, her staff participated in a two-day retreat where they’d practiced using computers and other screen devices for their primary care patients and for their patients on medication-assisted treatment for opioid dependence. So, her practice was ready.

“Two weeks later COVID hit,” she said, “We didn’t close.”

Smith’s team was fortunate that way. Nonetheless, she’s struggled with a steep drop-off in patients and revenue, and increased expenses since the spring.

The same story is echoed in primary care offices across the state.

How individual offices have been able to adapt in recent months offers a glimpse into a primary care ecosystem with deep vulnerabilities for the little guys in the smaller independent private practices that rely heavily on hands-on face-to-face encounters.

Some that already were preparing to offer virtual visits through telehealth models have been more nimble and able to adapt. Others are testing new financial systems that no longer count so heavily on the fee-for-service model, shifts that could offer a guide to the future as individual practices try to stave off consolidations that might offer economies of scale without bringing higher quality care.

According to a survey conducted by the North Carolina Academy of Family Physicians and the North Carolina Pediatric Society, 87 percent of practices reported being under “significant or extreme financial pressure.” For physician-owned practices, such as Smith’s, that number goes up to 92 percent.

Telehealth pivot hurts some small practices

According to the survey, practices have tried many different ways to stay afloat, from temporary closures to reducing hours. Physician practice owners reduced pay for themselves and their workers, furloughed staff. They applied for loans, sought help from the Paycheck Protection Program, tried to open new lines of credit or refinance their mortgages. Doctors did all this, even as they pivoted their practices to telehealth and comprehensively changed the way they operated.

Despite those pivots, the survey found that about one in 10 primary care physicians has considered selling the private practice or closing up shop completely.

“The rural independent practices have probably been hurt the worst,” said Greg Griggs, head of the NCAFP. He noted that those practices have a mix of payers that lean heavily on Medicare and Medicaid, government programs that reimburse for care at lower rates than commercial payers such as Blue Cross Blue Shield of North Carolina.

Tommy Newton’s practice in Sampson County had to move quickly as revenues dropped due to telehealth.

“Without PPP and a couple of other programs we’d be in dire shape. The PPP has propped us up,” said Newton, referring to the federal Paycheck Protection Program.

The practice was losing money because they weren’t doing lab work for routine health checks that were now being done over the phone or by computer. Few in-person visits. No revenue was coming in for the X-ray service for similar reasons. The urgent care volume was down too. All of those services are critical to the overall financial plan for Newton’s practice that helps pay the bills.

Both Newton and Smith were grateful that North Carolina’s Medicaid program and the federally reimbursed Medicare program began reimbursing for telehealth visits during the pandemic.

“And private payers were sort of a mixed bag,” when it came to telehealth reimbursement, Newton said. “Some did, Blue Cross did the whole  time, the rest of them finally came on board, paying at parity, but not always.”

There have been other adaptations, too.

Newton, 65, and another partner, in his 70s, are only seeing patients who have been screened as not having COVID-19, for well-care checks that also are critical to a thriving practice. The younger partners at the practice are in the office for the riskier patient needs.

“We have two staff members right outside the front door and they screen people as they come up,” he said, if his nurses haven’t screened them over the phone first. If a patient is at risk for COVID, the PPE goes on, screenings take place in the car. If they need to be seen, the patient enters through a side door and goes straight to an exam room.

Newton said his practice has spent $25,000 on PPE since March, almost six times what was spent last year for the equipment.

Fee-for-service guts bottom line

North Carolina has about 3,000 primary care physicians, Griggs said. About 40 percent work for a large health system, another 20 percent are employed by someone else, either a community health clinic, the local public health department or a doctor-owned practice.

The rest are independent, like Smith and Newton and Mark McNeill, who has a practice in Asheville.

McNeill already had a significant online presence for his 2,000 or so patients. He’s got a solo practice where he has “trained” his patients to use an online portal to ask simple questions rather than calling. The transition to telehealth was easy for him and his patient volume only dropped by about 25 percent before it rebounded.

McNeill worries about the future of independent practices with concern that goes beyond self-interest. Get on the phone with him for more than five minutes and he starts talking about a growing body of research showing that independent practitioners are a vital part of the health-care ecosystem because they do such a good job at saving money for the overall system.

Primary care physician Mark McNeill says he’s actually optimistic that the COVID-19 pandemic will result in positive changes in the payment model for practices such as his. Photo credit: Mark McNeill

The financial vulnerability for independent practices right now, McNeill pointed out, is tied to the fact that medicine is still reimbursed on a “fee-for-service” basis, despite the rhetoric that’s been flying around health policy circles for several decades about “paying for value.”

“We generally make our living by having butts in chairs, doing stuff like labs, and seeing people face to face,” he said. “I don’t make my living right now keeping patients out of my office, I’ve generally got to see them to get paid, so when patients stop coming to see you, your revenue drops.”

McNeill said the COVID-19 pandemic has exposed the great weaknesses in reimbursing for care this way.

“Primary-care health care, in general, has been talking about moving more toward value-based care, meaning rather than getting paid fee-for-service getting paid more consistent payments based on just the quality of care you’re doing,” he explained.

For the past few years, McNeill has been part of an accountable care organization called Aledade . The idea behind the organization is that small practices delivering high-quality care get money from insurers for keeping costs low, even as they meet quality benchmarks. This “shared savings” model provides a foundation for McNeill to build his revenue mix on top of.

“I’m not sweating as much as I would have been because I’m getting value-based payments on the work I did last year,” he said.

McNeill argued he’s better able to provide value to his patients and his payers and there’s more evidence to back that up of late. Just this month, the journal Health Affairs published a review of physician practices and larger hospital-based practices and found that the small guys delivered more bang for the buck.

“Independent physician practices were … more likely to screen patients for clinical conditions or social needs,” the authors wrote. “Recent research from the patient’s perspective [found]  that larger medical practices and hospital-owned groups do not provide more coordinated care.”

The assumption was always that the bigger systems could achieve “economies of scale” and adopt reforms more easily. Instead, the evidence seems to point to smaller, “more nimble organizations” being better for patient, physician and payer, with evidence that small practices delivered better quality care.

The study’s lead author Elliott Fisher published an op-ed in The Hill, where he pointed to data showing that when physician practices consolidate, when hospital systems grow larger, those providers are able to drive a harder bargain with insurers, demanding more for their services.

“A majority of all hospitals and nearly half of all physicians are now in financially integrated delivery systems,” the article stated. “The evidence is clear that consolidation often leads to decreased competition and higher prices, one of the major reasons that US health care costs exceed those elsewhere.”

The small fry, such as McNeill, offers a different way forward by keeping prices low in exchange for getting something back from the insurance payers. Everybody wins, he argued. Insurers pay less and get more quality, doctors provide more value and get more money in their pockets, and patients get better care.

Now more insurers are warming to the idea. McNeill mentioned a new program rolled out by Blue Cross Blue Shield of North Carolina in recent weeks called “Accelerate to Value.” The program is designed to bring on more primary care physicians like McNeill.

For him, that’s the glimmer of hope amid the pandemic.

A hand holds an iPhone with the Plume website open.

Telehealth offers transgender people a new way to receive hormone therapy, during the pandemic and beyond

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Telehealth offers transgender people a new way to receive hormone therapy, during the pandemic and beyond - North Carolina Health News

The COVID pandemic has paved way for virtual visits to continue for transgender patients, offering easy - and private - access to hormone replacement therapy and other care.

By Hannah Critchfield

Taylor made the video call from the car.

The vehicle was as familiar as an office by now – before the pandemic hit, it was where 27-year-old Taylor changed into dresses before going out with friends, and where they wiped the makeup off their face before returning home each night. It was still the only place Taylor was sure they wouldn’t be called by their birth name by one of the many family members they are now quarantined with.

It was a 30-minute conversation and medical consultation – the licensed physician, who themselves was transgender, asked Taylor a few questions, briefed them on the process, and sent a prescription to a nearby Walmart.

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The same day, Taylor picked it up. Just like that, after months of trying to find a doctor who could consult them, Taylor began hormone therapy for the first time.

A growing number of transgender people in North Carolina and nationally are using telehealth to seek transition-related care, particularly for hormone replacement therapy (HRT), a treatment process in which a person takes hormones to change their physical characteristics to more closely align with their gender identity.

Telehealth use has spiked in general during the pandemic, as many in-person visits shifted to video consultations to prevent the spread of COVID-19, and both federal and state governments waived certain HIPAA and Medicaid requirements, as well as bumping up reimbursement to support the practice.

But there are many reasons why a transgender person might prefer telemedicine for hormone therapy, even without a pandemic.

Not every transgender person seeks out HRT in their journey to live in a way that feels authentic to their gender identity. For those that do, being able to access health care virtually helps overcome some of the traditional barriers that may arise when a transgender person seeks a doctor.

A third of all transgender people who participated in the 2015 U.S. Transgender Survey reported having at least one negative experience while seeing a health care provider related to being transgender that year, such as being verbally harassed or refused treatment because of their gender identity.

“There are a lot of people who are afraid to sit in a waiting room,” said J. Clapp, executive director of the LGBTQ Center of Durham. “It’s exceptionally uncomfortable for marginalized people, because you wonder whether or not the person sitting next to you is actually supportive of who you are. That’s the importance of telehealth.“

Angel Collie, assistant director at the Center for Sexual and Gender Diversity at Duke University, echoed this.

“Many people have reported having someone at the front desk use their deadname,” said Collie, referring to the act of calling a transgender person by the name they used prior to their transition. Many say it’s, a practice that can be both emotionally and physically harmful by exposing the person to the risk of discrimination

“And then they’re forced to choose, ‘Am I going to get up and out myself, or am I going to not receive the service or care that I came here for today?’

“These are all experiences that I’ve certainly had, or I have worked with people who have had them,” Collie added.

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And outside concerns of discrimination, finding a doctor who can provide culturally competent, affirming transgender care can be difficult.

“What many trans people are finding is that they have to spend the majority of the time educating their provider, as opposed to having that time for themselves to be able to ask the questions that they have,” they said. “And if they do get that chance, the providers might not even be able to answer it.”

Health care specifically for transgender people, Collie said, is often considered an “extracurricular” aspect of medical education.

“In North Carolina, at Duke, you have the Child and Adolescent Gender Care Clinic. But one of the things I’ve heard folks who do that work say is that people are driving from all over the state just to access these services. And the program is often at capacity – it can be a waitlist and difficult to get an appointment.”

An affirming app for hormone therapy 

Last month, the first app specifically for providing transgender people virtual and safe access to hormone therapy launched in North Carolina.

Known as Plume, the platform was founded by Dr. Jerrica Kirkley, a doctor of family medicine, and Dr. Matthew Weschler, a physician and master of public health, who met while they were both graduate students at the University of North Carolina in Chapel Hill.

It pairs people seeking gender-affirming hormone therapy with licensed medical professionals through a HIPAA-compliant app. Many of the care providers are themselves transgender people.

“At the advisor level, the leadership level, the co-founder level and the team level, we’re 50 percent trans or more. Our clinical team is predominantly trans,” said Soltan Bryce, head of growth at Plume and a North Carolina native. “We deeply believe in the value of trans people doing this work.”

Once a person downloads the app, care coordinators, who are also transgender, chat with them and walk them through the medical intake form process. They then undergo an initial consultation about the telehealth program with coordinators, and a physician, if desired, via a live video chat. If the transgender person is interested in signing up, they schedule a formal virtual doctor’s visit. Within a week or two, people are seen by video-visit with a licensed medical professional, who is able to prescribe medication with a local pharmacy that day.

They’re able to continue follow-up visits and lab monitoring virtually throughout the program.

Telehealth apps like Plume offer a huge benefit: The doctor providing affirming care doesn’t have to be in the same state as the person they serve (though Plume does employ providers licensed in every state where they offer the app).

“Primarily what the digital platform and the telehealth angle allows us to unlock is that convenient, immediate, safe access to care, which is a huge barrier for the trans community,” said Bryce. “Especially in a state where HB2 sort of casts a long shadow, I think that access piece can’t be highlighted enough.”

COVID-19 opens a door

Plume began in Colorado in July 2019 and is now in 10 states – it launched in North Carolina on June 1.

But creators said they’ve seen a dramatic uptick in people using their services in the last few months across the states in which their services are available – which cumulatively hold about 50 percent of the national transgender population – due to COVID-19 shutdowns and cancellation of services health care providers deemed “non-essential.”

“A lot of clinics had to close their doors, some at best temporarily, but many permanently, at smaller private practices and family practices that weren’t ready to go to telemedicine,” said Kirkley. “We can keep our services going business-as-usual, since we’re set up on a fully virtual model to begin with. I think a lot of people have come to us for that reason.”

Taylor, who asked that we only use their first name out of fear of discrimination, had been seeking hormone therapy for about a year – they’d turned 26 and lost coverage under their parent’s health insurance shortly after realizing they identified as transgender. The realization had ended – amicably, they said – Taylor’s relationship with their live-in fiancé, prompting Taylor to move back to Salisbury and in with their parents. They’d only recently purchased new health insurance after finding multiple jobs in the area, and had searched for months for a provider who was taking on new patients and could adequately talk to them about transitioning with HRT.

“I still was having trouble finding any, like actual people who could talk to me about gender, and affirming my gender,” Taylor said. “For instance, I tried calling Planned Parenthood a little bit after I moved here to see if they could help me, and they were entirely filled up; they couldn’t take on new people.”

Then COVID-19 hit, and their appointment with a provider was canceled.

“It was getting pretty stressful,” Taylor recalled.

Taylor resigned to the idea of having to wait until they moved out of the house and COVID-19 subsided to get hormone therapy. But then an ad for Plume popped up on Facebook.

“And being able to start the same day I saw a doctor was just like really cool, because, it felt like I actually finally made progress,” said Taylor. “After a full year of just like, sitting still, of everyone calling me a man and a ‘dude,’ of my parents is calling me by my birth name every day.” 

The effects of gender-affirming care

Taylor won’t start seeing physical changes for about two months. (After learning this from their virtual meeting with a physician, Taylor said they felt they could start hormone therapy now – the delay gives them time to move out of their parent’s home. “I didn’t want my parents and my grandpa, who lives with us, to see the changes going through me,” they noted.)

illustration is a seemingly typical drawing of a gingerbread man, but instead, has a rainbow-colored brain labeled
The GenderBread Person is a drawing by artist and activist Sam Killerman used to explain the differences between sexuality, expression, gender and attraction. Illustration courtesy: Sam Killerman

But already, they said the treatment has had an impact on their everyday life.

“The way the pills I have are directed, I’m supposed to just put them under my tongue and let them dissolve,” said Taylor. ”That entire process has been kind of relieving, ‘cause for five to 10 minutes, I have this thing melting in my mouth that’s sort of like an embodiment of everything that I’m striving to reach in my life.”

“It’s sort of like a meditative thing,” they said. “It’s been so exhausting to keep up with the facade [at home]. But that moment is like one of the more nice parts of my day, because I get to reflect on being trans, and how this pill is in my mouth because I am trans.”

Transgender people experience thoughts of suicide at a disproportionally higher rate than cisgender people in the United States – over 30 percent of transgender adults report such thoughts in a given year, versus 10 percent of cisgender adults.

The founders of Plume hope that creating easier access to the care will help alleviate some of the mental health challenges transgender people face, particularly around the distress of experiencing gender dysphoria.

“Access to care, and then actually the care itself, are two distinct things that really allow trans folks to flourish in the face of some of those statistics,” said Bryce. “HRT can be the difference that keeps people here.”

Remaining barriers

Plume costs $99 a month, and does not require insurance or accept insurance for cost of services. The fee doesn’t include the around $20-a-month cost of medication, but covers the initial visit, follow-up visits, and the lab work needed about three times a year for people on hormone therapy.

“I think it creates the possibility of having some of that process, which can be so daunting, centralized,” said Collie, who is not affiliated with the company. “So folks aren’t having to go to so many different places and kind of tell their story over and over again, and continue that outing process. I can’t imagine what it would have been like to have this when I was coming out.“

Barriers to care remain for transgender people who do not have access to the internet, as in some of the more rural parts of North Carolina, or who still cannot afford to pay.

Clapp of the LGBTQ Center of Durham, who had not heard of Plume and did not comment on it, said they have another reservation about telehealth.

“The challenge with telehealth is, of course, that it eliminates some jobs,” Clapp said. “That’s not what I want to do. But I do think having there be room for telehealth for some marginalized populations would be great.”

The Plume team said it’s optimistic that the increase in telehealth nationally signals a shift – they’ve believed telehealth can work for a long time, and this is a chance to demonstrate it.

“It’s very exciting to be the first platform really dedicated to the transgender community,” said Weschler. “That’s an exciting threshold to break through, and we hope that it is just a small part of a larger shift in the ecosystem of access for transgender folks nationally.”

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