Genetic testing can unsettle patients because many genetic findings are ambiguous, leaving doctors uncertain about whether a particular variant is truly dangerous.
This article was published on Tuesday, February 9, 2021 in Kaiser Health News.
When her gynecologist recommended genetic testing, Mai Tran was reluctant.
"I didn't really want to do it," recalled Tran, who had just turned 21 and was living in New York City, "but she kept on emailing me about it and was really adamant that I do it."
Tran knew she had an elevated risk of developing breast cancer because of her family history — her mother died of the disease and a maternal aunt was diagnosed and survived. Given this, she planned to follow the standard recommendations to begin breast cancer screenings at an early age.
But she feared that if the testing her doctor was suggesting revealed a genetic variation known to cause breast cancer, she would have to decide whether to have her breasts surgically removed. That was a decision she was not ready to make.
Doctors are increasingly testing people's genes for signs of hereditary risks for cancer, said Dr. Allison Kurian, a medical oncologist and the director of the Women's Clinical Cancer Genetics Program at Stanford University. If the tests find a genetic variation known to cause cancer, treatments or preventive measures may be recommended to prevent the disease, she said.
But the trend can unsettle patients like Tran, sometimes unnecessarily, because many genetic findings are ambiguous, leaving doctors uncertain about whether a particular variant is truly dangerous.
However, the chances of finding an inconclusive result — which can be troubling for patients and confusing for doctors to interpret — rises as more genes are tested. A study by Kurian showed that multiple-gene screening was 10 times more likely to find inconclusive results than a test that examines only two genes, BRCA1 and BRCA2, long associated with a higher risk of breast and ovarian cancer.
An inconclusive result is known within the medical community as a variant of uncertain significance, or VUS. It may be a harmless variation in a gene — or one linked to cancer.
Detecting such variations is common. A review showed the percentage of patients who learn they have a VUS after multiple-gene panel testing varied in studies from 20% to 40%.
"The larger the panel someone orders, the more likely we are to find one or even multiple variants of uncertain significance," said genetic counselor Meagan Farmer, director of genetic clinical operations at My Gene Counsel, a Connecticut company that provides online genetic counseling tools.
Farmer has seen patients change their minds when she informs them of this reality. "That patient that thought they wanted everything [tested] might then kind of scale back what they were looking for."
Kurian said patients can be tested for all the cancer genes available as long as they understand that the analysis of many genes will likely not be informative. Several years later, if more evidence accumulates for a particular gene, those results may inform medical decisions.
"It's not wrong" to conduct the tests, said Kurian. "But it needs to be appropriately handled by all parties."
In fall 2018, having never heard of a VUS, Tran settled on the most comprehensive screening: a gene panel that at the time evaluated 67 genes for various cancer types.
People who belong to racial minority groups have an especially high likelihood of harboring a VUS because most genes were sequenced first in white people, who also tend to have better access to testing, according to a study by Stanford researchers including Kurian. It showed that, among a racially diverse group of people who had multiple-gene panel testing, more than one-third who were not white had a VUS result, whereas one-quarter who were white did.
Testing revealed that Tran, who is Vietnamese, had a VUS in a gene associated with Lynch syndrome, a hereditary condition that increases the risk of developing colon cancer, uterine cancer and other cancers. The genetic counselor explained the VUS was inconclusive and should not be used to inform medical decisions.
Although Tran does not dwell on the VUS, the testing process itself caused emotional turmoil. "I really did the test mostly for my doctor and not for myself," Tran said. "If I could have chosen, I would not have done it."
But other patients are more unnerved by uncertain results. "The VUS is scary because it's a crapshoot," said Logan Marcus, of Beverly Hills, California. She has a rare variation in BRCA1 that one genetic testing company said is "likely pathogenic" and another said is a "VUS."
A genetic variant found in testing can be classified — in decreasing severity — as "pathogenic," "likely pathogenic," "VUS," "likely benign" or "benign," and studies have shown that commercial laboratories and companies sometimes disagree on how to classify a variant.
The consensus among experts is not to make medical decisions, such as whether to have surgery, based on a VUS because it often turns out to be benign as more research is done and more people are tested.
Yet, doctors who do not have training in genetics often don't follow that advice.
"I've actually seen this a number of times, and it's a very real concern," said Dr. Kenan Onel, a clinical cancer geneticist and the director of the Center for Cancer Prevention and Wellness at the Icahn School of Medicine at Mount Sinai in New York City.
Researchers recently found evidence that doctors may be inappropriately recommending surgery based on a VUS. The results were presented virtually at the 2020 American Society of Clinical Oncology annual meeting and have not yet been published in a peer-reviewed journal.
More than 7,000 women were surveyed about their experience with multiple-gene panel testing, and among those with a VUS in a gene associated with ovarian cancer, 15% had their ovaries and fallopian tubes removed. Surgery was not warranted for these women because experts say a VUS should not be used to make medical decisions. Furthermore, many of these women did not have a family history of ovarian cancer and had not reached menopause, yet 80% reported that their doctor recommended surgery or discussed it as an option.
It is not just the procedure that causes problems, explained the researcher who led the study, Dr. Susan Domchek, a medical oncologist and executive director of the Basser Center for BRCA at Penn Medicine's Abramson Cancer Center. Women who have their ovaries taken out before menopause start menopause early, which raises their risk of developing health problems such as osteoporosis and heart disease.
The study also showed that doctors often recommended surgery even for women who had alterations in genes not associated with ovarian cancer — more evidence, Domchek said, that doctors who lack training in genetics often misinterpret these results.
In another study, Farmer and her colleagues described instances when healthcare providers ordered the wrong genetic test or misinterpreted the results. Other researchers found that nearly half of 100 surveyed doctors were unable to correctly define a VUS.
Experts say patients who learn they have a VUS or receive conflicting results should see a provider with expertise in genetics, such as a genetic counselor or clinical cancer geneticist, especially if surgery is being recommended.
Having had multiple relatives with cancer and after seeking advice from a genetic counselor, Marcus plans to have a double mastectomy to prevent breast cancer and give her peace of mind, but she's unsure whether she'll have her ovaries removed to prevent ovarian cancer. At age 39, she has not had children yet.
"This has been a two-plus-year struggle for me," said Marcus. "I felt very alone, and nobody could give me any answers."
CONCORD, N.C. — It had been months since Tremellia Hobbs had an excuse to bring out the pompoms. Before the pandemic, they were a crowd favorite at movie nights and bingo tournaments that Hobbs organized as activities director at the Brian Center Health & Retirement/Cabarrus nursing home.
On Jan. 14, she finally had a reason. After nearly a year of living with pandemic restrictions and a summer outbreak that killed 10 residents and infected 30 staff members, the nursing home was hosting its first covid-19 vaccine clinic.
So Hobbs lifted the red and silver tassels into the air and cheered as her co-workers lined up to get shots from two visiting CVS pharmacists. "Stewart, Stewart, he's our man! If he can't do it, no one can! Goooo, Stewart!"
But even as Hobbs rooted for her colleagues, decorated the dining hall with green and blue balloons, and assembled goodie bags with Life Savers gummies for those who received their shots, she knew she wouldn't be getting the vaccine herself.
"Being able to diagnose, come up with a vaccine and administer it all within the same year just seems a little puzzling," she said. "I would like to see, give it a little more time."
Hobbs' hesitancy has been echoed by nursing home staff members across the state and country. But her reasoning — as well as that of her colleagues who also opted against the vaccine that day — goes far beyond a simple yes or no. The decision is complicated and multifaceted, they said, which means persuading them to say yes will be, too.
In North Carolina, the health secretary has said more than half of nursing home workers are declining the vaccine. A national survey found that 15% of healthcare workers who had been offered the vaccine said no, with nursing home personnel more likely to refuse than hospital staffers.
The trend has concerned public health officials, who say vaccines are among the best ways to protect vulnerable elderly residents who may be infected by asymptomatic staff members. Although long-term care facilities house less than 1% of the nation's population, they've accounted for 37% of covid deaths, according to the COVID Tracking Project.
Early reports suggest nursing home residents are getting vaccinated at a higher rate than workers. A CDC analysis of more than 11,000 long-term care facilities found that in the first month of vaccinations, about 78% of residents got at least one dose, but only 38% of staffers did.
But some nursing home staffers say their reluctance is being misconstrued. Most are not saying they'll never take the vaccine, but simply that they have concerns about such a new product. They understand it went through months of clinical trials, but what about possible long-term side effects, for instance? Or how did politics play into the development process? For communities of color, their historical mistreatment by the medical system can also factor into the decision.
"We should stop saying that people are just saying no," said Dr. Kimberly Manning, a professor at Emory University School of Medicine who is participating in the Moderna vaccine trial. A Black physician herself, she has been speaking with many Black Americans about the vaccine and instead refers to people as "slow yeses."
"We just are too impatient to get to the point where we let them get to their yes," she said. "We're like the used-car salesman. We're just trying to close the deal."
But human beings respond better to empathy and patience than to pressure, Manning said. She tries to ask people about their individual concerns and work from there. Sometimes it's skepticism about the government's intentions. Other times it's worry about how the vaccine may interact with fertility treatments.
"It's important to not lump anybody into a group and say 'How dare you just not get vaccinated?' because you're a healthcare worker," she said. "You're still a person."
Hobbs, at the nursing home, is not against immunizations in general, she said, and her decision has nothing to do with distrusting the medical system as a Black woman.
"I totally trust the science. I love Dr. Fauci," Hobbs said. "My thing is the timing."
She wants to wait and see how others who get the shots fare. In the meantime, Hobbs said, she'll continue masking, physical distancing and sanitizing — all of which have kept her covid-free for 10 months and which she hopes will continue to protect the residents, each of whom she knows by name and favorite activity.
Caitlyn Huneycutt, a certified nursing assistant at the center, also opted out of getting a shot — but for an entirely different set of reasons. She expects covid vaccinations will be mandated for health workers in the future, much like other immunizations. And she'll get them then. But for now, she's still weighing the risks.
She recently started a new medication and is not sure how it'll interact with the vaccine. She doesn't want to bring covid home to her 1-year-old daughter, but she's also heard of people who received the vaccine and fainted or developed kidney infections. (The Centers for Disease Control and Prevention does not list either of these as common side effects for the two covid vaccines in use.)
"I want to make sure I'm going to be healthy if I take it," Huneycutt said.
Across the country, nursing homes are taking different approaches to persuade their staffs to get vaccinated. SavaSeniorCare, which owns the Brian Center/Cabarrus, has offered cash to its 169 long-term care homes in 20 states to pay for gift cards, parties or other incentives. For over a month now, the company has also been hosting weekly phone calls to educate staffers about the vaccine and making Sava doctors and pharmacists available to answer questions.
At least one nursing home chain in the U.S. announced it will require all employees to receive a vaccine, but most others, including Sava, have not yet done so.
Stewart Reed, administrator for the Brian Center/Cabarrus, is hoping to lead by example instead.
Reed experienced the harsh reality of covid firsthand and was out of work for two weeks in the fall. In January, he was among the first in line to get the vaccine. For the rest of the day, he popped in and out of the dining hall where shots were being administered to thank staff members for doing their part.
In total, about 48% of staff members and 64% of residents at the center received their first dose of vaccine that day. The numbers are well below Sava's goal of 90%, Reed said, but the pharmacists will return for two more clinics in the coming months.
"The people that didn't get it [today] will see that the guys that got the shot are OK," Reed said. "When the next clinic comes up, they will not hesitate to get their first shot. It ought to go much better."
After almost 60 years of marriage, five children and a lifetime filled with more victories than defeat, Aurthur Kelley wanted to be there for his ailing wife, Maggie, even if she didn’t know he was there.
Arthur Kelley could barely raise his voice above a whisper last fall when he told a nursing assistant he never wanted his wife, Maggie, to be alone. After almost 60 years of marriage, five children and a lifetime filled with more victories than defeat, Kelley wanted to be there for his ailing wife, even if she didn’t know he was there.
He got to be there for her. But like so many other people who have died of covid-19, he died without his family.
Dementia had stripped Maggie Kelley of her memory, so her family had moved her into a nursing home in 2015. Arthur, who had received care for Parkinson’s disease at home, moved to the same facility in the St. Louis suburbs two years later to be closer to Maggie.
“It was a literal choice to go be there with Mom,” said their youngest son, Kevin Kelley. “He really desired to be there.”
Their parents shared meals, watched television and slept in the same room for three years. They were separated only once, when Maggie, 81, contracted an asymptomatic case of covid early in August.
“He protected her like Superman protects Lois Lane,” said their oldest daughter, Lisa Kelley-Tate. “That’s how he was with her.”
Arthur, 80, would often ask when he could see his wife again.
“He wanted to make sure he didn’t pass before she did,” Kelley-Tate said a staffer at the nursing home told her. “It was his job to make sure he was there for her. Maybe he knew then that his time wasn’t going to be long.”
Maggie finished her quarantine and they reunited. But only briefly. She died of complications of dementia on Nov. 2.
That afternoon, Arthur held her hand as long as he could. When Kelley-Tate arrived, he was still holding on, so she took her mother’s other hand. She carefully painted Maggie’s nails red, her favorite color. But Arthur still wanted more time with Maggie.
“It took a while before he had me call the mortician to come pick her up,” Kelley-Tate recalled. “He said, ‘I want her here with me just a little longer.’”
Maggie and Arthur grew up together in Coffeeville, Mississippi, a small town about 90 miles south of Memphis, Tennessee. Maggie was the daughter of a teacher and a farmer. Arthur helped his family run its dry-cleaning business. He also learned to play the piano well enough to perform in juke joints and churches.
Their relationship bloomed in high school. Arthur took Maggie to the prom before they headed off to college. Maggie attended two historically Black colleges in Mississippi: what’s now known as Alcorn State University in Lorman and Rust College in Holly Springs. Arthur left the South for the Midwest, where he attended Southern Illinois University in Carbondale.
After their wedding on June 3, 1961, in Coffeeville — Maggie walked down the aisle in a lace dress with a sweetheart neckline; Arthur wore a white jacket and a wide grin — the couple decided to put down roots in St. Louis. Their lives revolved around the children they soon had, church and music. Maggie taught elementary school and took care of the children while Arthur studied speech pathology.
“They would always talk about how they would work together,” said their youngest daughter, Gina Kelley. “They worked as a team.”
Arthur became the pastor of Greater Faith Missionary Baptist Church in 1977. He juggled life as a speech pathologist and minister, their children said. Maggie, who at this point was home raising the kids full time, established a routine for them that included prayer time, gospel music and home-cooked meals, including her beloved “Heath bar cake.”
Arthur and Maggie Kelley stayed dedicated to each other, in good times and bad. One of their toughest moments was the death of their 3-year-old son, Arthur Jr.
In their final years, both struggled with their health, but they never complained about their conditions. They leaned on their faith instead as he pushed through the challenges caused by Parkinson’s disease while her dementia progressed.
“At times, I said if my father had my mom’s body and my mom had my father’s brain we would be all good,” their son Kyle Kelley said.
After Maggie died, Arthur helped his children make funeral arrangements for her. He picked out her casket, and then he selected one for himself. Two of his children lifted him out of a chair so he could see the inside.
“He said, ‘I like that,’” Kelley-Tate recalled. “I said, ‘OK, we’ll keep that in mind,’ not thinking it would happen 30 days later.”
He too had contracted covid, one of the more than half-million nursing home residents nationwide to catch the contagious virus. Arthur wanted to attend his wife’s service, so his family decided to hold off on the funeral until he got better.
He never recovered. Exactly one month after Maggie’s death, he died in the covid ward of a nearby hospital. No family was allowed to be with him. A nurse called Kelley-Tate by video after he died.
But the family came together for what was now a double funeral with the caskets close to each other — the mauve one Arthur had picked for Maggie and the mahogany casket he had picked for himself.
California mom Megan Bacigalupi has had enough. She wants her kindergartner and second grader back in their Oakland classrooms.
But the coronavirus is spreading too quickly to open schools in Alameda County, based on the current state standards. And the local teachers union hasn't agreed to go back — even after teachers have been vaccinated. So she expects her kids will be logging on to school from home for a while.
"The impediments to opening are just too great," said Bacigalupi, who is lobbying California lawmakers to establish firm, statewide health metrics that, once met, would require schools to open. "In the end, it comes down to a lack of political will to get the kids back in the classroom."
Parents across the country, many of whom relied on schools to care for their children while they worked, are frustrated and angry that remote instruction has gone on so long, even as grocery store clerks, city bus drivers and other essential workers have braved the risks of their workplaces. Lawmakers are increasingly joining their calls to get kids into classrooms, citing the loss of worker productivity and parents' concerns about the social, emotional and academic effects on children.
President Joe Biden has pledged to open most schools within his first 100 days in office if Congress provides funding, and if states and cities adopt safety steps.
But that will be a herculean task. Nearly one year into the pandemic, fewer than half of students are attending schools that are teaching in person every day, and the question of how and when to get kids back into classrooms often depends less on science than politics — including the strength of local teachers unions.
The Centers for Disease Control and Prevention concluded recently that schools can reopen safely if their communities have low levels of the virus and they adhere strictly to measures such as requiring everyone to stay 6 feet apart and wear masks.
But in numerous communities, those basic measures haven't been followed, even before the vaccine rollout — and many teachers aren't convinced they will be safe on campus.
With infection rates starting to decline nationally, many parents, superintendents, school boards and politicians insist this is the moment to stop striving for perfection and embrace the health measures necessary to get kids into classrooms safely. Some are even taking dramatic measures, such as the city of San Francisco, which sued its school district Wednesday to force it to open.
The same day, CDC Director Dr. Rochelle Walensky said at a press briefing that schools can safely reopen even if teachers aren't yet vaccinated.
"If we wait for the perfect, we might as well just pack it up and just be honest with folks that we're not going to open for in-person instruction in the school year," Democratic California Gov. Gavin Newsom recently told school administrators — breaking with the politically powerful California Teachers Association, which wants all teachers vaccinated before reopening.
Teachers Fear for Safety
In many states, teachers lobbied to be among the first to be vaccinated after healthcare workers and nursing home residents. But they also argue the vaccines alone are not enough to open schools. They want low levels of community spread. They want as many school staffers as possible vaccinated, which could take months. And they want assurances that schools won't relax masking, physical distancing and other safety measures.
"We've had concerns about some districts being more lax even before the vaccine," said Scott DiMauro, president of the Ohio Education Association, the state's largest teachers union.
Dr. Mark Schleiss, a pediatrics professor at the University of Minnesota Medical School, agreed that health measures must be enforced even after vaccination.
"It's unfortunate that people think life goes back to normal, that once we get the vaccine, the masks come flying off," he said. "Vaccination doesn't take things back to normal."
That's because there are still unknowns about the vaccines: It's unclear if vaccinated people can transmit the virus. Plus, not all adults can get a vaccine (for medical reasons), and about 5% of those who receive the Moderna or Pfizer-BioNTech versions might not be fully protected. Kids are another matter entirely: No covid vaccine has yet been approved for use in children younger than 16.
Teachers say they feel especially vulnerable when the virus is running rampant in a community, but health experts don't agree on exactly what that means.
"We don't know a definite threshold," said Dr. Neha Nanda, medical director of infection prevention and antimicrobial stewardship at Keck Medicine of the University of Southern California.
In Montgomery, Alabama, four educators died within 48 hours in January, spurring the city's district to go remote starting Feb. 1.
"We have educators who are dying from this. We know they're taking it home," said Theron Stokes, associate executive director of the Alabama Education Association teachers union.
The Politics of Reopening
As of late January, about 38% of K-12 public school students attended virtual-only schools, 38% attended in-person schools, and 24% attended hybrid schools that offered a mix of both, according to Burbio, a company tracking a representative sample of 1,200 school districts.
Decisions about returning to school have often been driven by ideology in the absence of firm scientific guidance about community spread.
Politics plays as big a role as health, said Bree Dusseault, practitioner-in-residence at the Center on Reinventing Education, a nonpartisan research center that has tracked 477 school districts since March. "Because the pandemic became so politicized, districts found themselves in political debates in their own communities."
For instance, some politically motivated decisions to reopen schools were made despite dangerous surges in covid cases over the summer. In Texas, Republican Gov. Greg Abbott told schools in July they'd have to transition to in-person education after the state attorney general declared "sweeping" school closures unlawful. In Florida, Republican Gov. Ron DeSantis threatened to withhold state funding from schools that did not reopen in person.
In Democratic strongholds such as New Jersey and Chicago, powerful unions have protested and delayed school reopenings.
Union opposition played a part in the Oakland school district's decision to stick with remote-only learning in the fall, which boggled Bacigalupi's mind because covid cases had dropped after the summer surge. At the time, restaurants, gyms and hair salons in her county were allowed to partially reopen, and some schools in neighboring counties had also opened.
"One of the reasons it's so frustrating is that we can look at so many places and we see tens of thousands of kids back in school," said Bacigalupi, whose children, ages 5 and 8, have been out of school for nearly a year. "I'm also just sad. And the sadness gets worse as you see what's happening to your kid. It's harming them."
Bacigalupi said her second grader is like a different child — he's quick to anger and struggles to regulate his emotions. He now gets counseling once a week.
Balancing Risks
Under pressure, more schools are reopening by the day. In Cincinnati, city schools returned to a hybrid model of in-person and remote learning this month after a judge dismissed a teachers union lawsuit seeking to delay reopening.
Public health officials say districts must acknowledge that holding school in person is a calculated risk, and take concrete steps to minimize the danger for staff members and kids. These include separating desks in classrooms — even if that means holding class in a gymnasium — erecting plexiglass barriers where possible and limiting school sports.
"Implementing a combination of all of these layered approaches will make it a lot safer," said Krystal Pollitt, an assistant professor of environmental health sciences at the Yale School of Public Health, which last year issued guidance to help schools determine when to reopen.
For example, the Los Angeles Unified School District, the second largest in the country, has taken a number of measures, including installing upgraded air filters, purchasing an ionized cleaning system to sanitize surfaces and rearranging furniture in classrooms, said Kelly Gonez, president of the school board.
But like the local and state teachers unions and the district superintendent, Gonez believes the rampant spread of covid in the region must be addressed first.
"Once the broader covid conditions are in a safer place in the community, I think we will be ready," Gonez said. "We have the protocols in place to do this successfully."
On Wednesday, the local American Academy of Pediatrics chapter countered that schools should reopen immediately because the social isolation, anxiety and lack of structure are "causing undue harm" to children.
"'Safe' is a relative term," said Schleiss, the Minnesota professor. "Continuing to attend school with careful monitoring is reasonable. We don't want the perfect to be the enemy of the good."
Alpine County, population about 1,100, has administered just over 600 shots, finishing first doses for its entire healthcare staff and fire department, its EMTs and even its teachers.
This article was published on Monday, February 8, 2021 in Kaiser Health News.
WOODFORDS, Calif. — In the winter, the roughly three-hour drive from Alpine County's main health clinic in Woodfords to the remote enclave of Bear Valley winds along snowy two-lane roads and over 8,000-foot mountain passes, circumventing the more direct route, which is closed for the season.
So to get a box of the frozen Moderna covid-19 vaccine to the ski resort hamlet of about 100 people, the clinic has enlisted the sheriff's department.
"It's unreasonable for our staff to drive there, give a bunch of vaccines and drive back, especially with weather where there will likely be chain controls," said Dr. Richard Johnson, the county's public health officer, explaining that drivers are often required to put chains on their tires for traction.
Alpine County, California's least populated county, is home to just over 1,100 people, spread across communities nestled in the rugged Sierra Nevada mountain range and its foothills. The county, just south of Lake Tahoe on the Nevada state line, recorded only four new covid cases in the past two weeks.
In California's major metropolises, like Los Angeles and the Bay Area, getting a covid vaccine means lining up behind tens of thousands of health care workers and nursing home residents who were prioritized for shots and are jockeying for a limited number of appointments.
But things are moving fast in Alpine County, which has no hospitals. It doesn't even have a nursing home or other long-term care facility. Plus, a large portion of its population gets its vaccine supply from the national Indian Health Service. As of last week, the health department has administered just over 600 shots, finishing first doses for its entire health care staff and fire department, its EMTs and even its teachers.
State epidemiologist Dr. Erica Pan recently estimated it could take until June to vaccinate the roughly 6 million Californians age 65 and older.
But in Alpine County, Johnson hopes to finish the first round of shots for all older residents soon and continue second doses before moving on to more essential workers in education, child care, emergency services, food and agriculture. This includes many people who work in Alpine County but live elsewhere, like in South Lake Tahoe, noted Johnson.
"As a small county, we can do this sort of thing," he said.
Rather than anti-vaccine and far-right protesters — like the ones who recently disrupted operations at the Dodger Stadium vaccine site in L.A. — snowstorms are the postponing factor here.
Composed of small tourist towns, ski resorts, national forests and Native American tribal land, Alpine County has a population density of about two people per square mile. According to the U.S. Census Bureau, 82.7% of its housing units are vacant at least part of the year — largely because many of them are second homes for winter skiers and summer hikers.
Yet challenges persist in rural communities where residents remain wary of covid vaccines. More than one-third of rural Americans say they probably or definitely won't get a covid vaccine, according to a recent KFF poll. (KHN is an editorially independent program of KFF.)
Vaccine hesitancy is an issue among the Washoe Tribe of Nevada and California, said Dr. Bela Toth, chief medical officer of the Washoe Tribal Health Center.
The Hung-A-Lel-Ti Community of the tribe is one-fourth of Alpine County's population. Fewer than 300 people live on the community's reservation, a remote 80 acres of high desert dotted by homes, a gymnasium and community and education centers. It's one of five Washoe communities in the Lake Tahoe region; the rest are near Carson City and Gardnerville, Nevada.
The tribe receives its vaccines from the Indian Health Service, though uptake has been behind that of the rest of the county.
"We are a cross-border tribe, so there are always challenges," Toth said.
The tribal health center, just over the Nevada line, hopes to vaccinate 100 to 200 people a week as eligibility expands, following its first successful drive-thru vaccination site last week, according to Toth. Before the drive-thru clinic, the health center had vaccinated just 123 people, mostly its health workers and some residents over age 75.
Alpine County has offered to help speed up the tribe's vaccination pace, but Toth hopes to do it all in house, he said.
For the other residents of the county, Johnson, 74, keeps a tight logistical schedule, with appointments set every 15 minutes twice a week in Woodfords for residents of Markleeville, the county seat, and Kirkwood, home of a ski resort. All appointment requests ring into the "warm line," and for 10 days at a time, Johnson is on phone duty. He answered more than 300 calls on his last shift, interviewing each person to determine eligibility.
A few dozen second-home owners from Kirkwood and Bear Valley have dialed in seeking vaccines, and it's difficult to parse who spends months in the area and who rents their home out on Airbnb or Vrbo, Johnson said.
"I fully appreciate that the 75-year-olds who live in the Bay Area can't get vaccines there, so we struggle with what's our ethical obligation to them," he added. "But if they're coming back and forth from the Bay Area, they're presenting a risk to our own staff by coming here and perhaps bringing something with them."
Ultimately, Johnson decided to vaccinate eligible second-home owners who show electric bills or other proof of residence.
Two nurses and a crew of health care volunteers, many in their 70s, guide patients through the process of filling out paperwork, getting the shot and waiting 15 to 30 minutes while they're monitored for allergic reactions.
"I feel so honored to be here," said Kate Harvey, 73, a former nurse and longtime resident of Markleeville, who volunteered to greet patients at the clinic. As small-town charm demands, Harvey is also the wife of the previous public health officer, Dr. Richard Harvey, who was observing a just-vaccinated police officer in the next room.
Over the mountains in Bear Valley, a four-person team administers vaccines at the county's second vaccination site, but only after the sheriff's department makes the three-hour drive over mountain passes each week to drop off the frozen vials.
Last month, a storm dumped more than 6 feet of snow on the Sierra, making some roads impassable even for the most seasoned winter drivers.
Like many rural health providers, the county depends solely on Moderna's vaccine, which is good for 30 days after it's shipped and doesn't require storage in an ultra-low-temperature freezer like the Pfizer-BioNTech alternative.
Managing the logistics wears on Johnson, as it does on many other health officials across the state. Every Tuesday night, he finds out from the state how many shots the county will be allocated for the week, never knowing what to expect more than a week ahead. So far, it's been 100 or 200 doses a week.
But recent directives from the Biden administration have made him hopeful that more doses and advance notice are on the way.
"A vaccine in the freezer does no one any good," Johnson said. "It must be in the arms of recipients as soon as possible."
Public health authorities are relying on community health workers to be a bridge to communities that have been hardest hit by covid-19 and who are most skeptical about the new vaccines.
This article was published on Monday, February 8, 2021 in Kaiser Health News.
By Michele Cohen Marill For 11 months, Cheryl Garfield, a community health worker in West Philadelphia, has been a navigator of pandemic loss and hardship. She makes calls to people who are isolated in their homes, people who are sick and afraid and people who can't afford their rent or can't get an appointment with a doctor.
The conversations always start with a basic question: "Tell me about yourself." She wants to know her clients before she figures out how she can help.
"Sometimes a patient just needs somebody to listen to them, so you just listen," said Garfield, 52.
Public health authorities are relying on Garfield and her peers to be a bridge to communities that have been hardest hit by covid-19 and who are most skeptical about the new vaccines. African Americans and Hispanics have been hospitalized with covid at rates more than three times higher than for non-Hispanic white Americans, but they are among the most hesitant to get the vaccine. As the pandemic brings long-standing health disparities into sharper view, community health workers are coming to the forefront in the public health response.
It is an about-face after their efforts were largely curtailed early in the pandemic, when "nonessential" health services came to a halt. Community health workers "were sidelined but the needs of the community weren't sidelined," said Lisa Hamilton Jones, co-president of the Florida Community Health Worker Coalition. "Now we're seeing more hiring of community health workers than ever. If you look at the virus and the timeline, why did it take so long?"
President Joe Biden has endorsed a bigger role for these workers as part of his $1.9 trillion "American Rescue Plan." The proposal includes the hiring of 100,000 people to help with "vaccine outreach and contact tracing in the near term, and to transition into community health roles" after the covid crisis is over.
With their deep roots in the community, many of these workers were disappointed when they were not called on to help initially in the pandemic. Community health workers often work on grant-funded projects with a specific goal, such as improving blood sugar control among people with diabetes. When the pandemic shutdown suspended those programs, many found themselves without a job.
They became marginalized workers within marginalized communities.
"We were hearing from our members across the country, 'I'm trying to get in touch with my local health department to say I want to help,'" said Denise Octavia Smith, executive director of the National Association of Community Health Workers. "They couldn't even get through to the [local covid] task force."
'Shared Life Experiences'
Garfield works for Penn Medicine, the health system of the University of Pennsylvania, but she isn't a medical professional. She and other members of this fast-growing workforce help fill the gaps between healthcare providers and low-income communities by offering education, advocacy and outreach.
Before the pandemic, Garfield met with at-risk patients as they were discharged from the hospital and eased their path to care in the community. Her work often isn't directly related to healthcare. In one case, she took a formerly homeless man bowling. The outing, which triggered joy and memories from his youth, helped him decide to turn his life around. He got a job, kept the doctors' appointments he had been avoiding and took better care of himself.
Since the pandemic, her caseload has varied — and her encounters occur by phone. She helped a young woman with a high-risk pregnancy — and a positive test for covid — find a doctor. She assisted a homeless man in getting federal stimulus funds and care in a nursing home.
Garfield is a grandmother who raised six children as a single mom, and she's a survivor of domestic violence. She lost a nephew to gun violence, has friends who died of covid and has her own serious health problems — sickle cell disease and the inflammatory disorder sarcoidosis. She doesn't hesitate to share those personal details. They help her relate to patients.
"You look at them like they're a family member," said Garfield. "We connect with our patients more because we're from the community, and we have the shared life experiences that they have."
Healthcare has always been most personal when it extends beyond the clinic or hospital. Community health workers often are employed in traditional health settings, but in recent years they also have served in community centers and churches or gone door to door, providing health education and connections to resources. They promote, among other health issues, HIV/AIDS prevention, prenatal care, immunizations and cancer screening.
Dr. Shreya Kangovi, founding executive director of the Penn Center for Community Health Workers at the University of Pennsylvania, helped demonstrate these workers' effectiveness in a study published last year that followed 302 patients who were on Medicaid or were uninsured, lived in poor neighborhoods and had at least two chronic health conditions. Community health workers met one-on-one with half those people in 2013 and 2014 and helped them create plans to address their health and social needs. The patients who received help from community health workers had fewer and less costly hospital admissions than the rest of the group. Kangovi and her colleagues calculated an annual return on investment of $2.47 for every dollar spent.
Covid's unequal burden became obvious by May and June as demographic data emerged, documenting higher infection rates among African Americans and Hispanics.
The Trump administration awarded $40 million to Morehouse School of Medicine in Atlanta to lead a broad initiative to mitigate the impact of covid on minorities. Morehouse created the National COVID-19 Resiliency Network, which is hiring and training community health workers and building partnerships with organizations that represent a wide scope of vulnerable populations, including Native Americans, African Americans, Latinos, people with disabilities and those who are incarcerated.
In September, the National Institutes of Health launched the Community Engagement Alliance Against COVID-19 Disparities, or CEAL, in 11 states as an effort to improve outreach to high-risk communities and to combat misinformation about covid and the vaccines. The program offers community health workers an opportunity to express concerns they have heard from the people they serve.
For example, in a recent online "listening session" sponsored by the Georgia CEAL, a community health worker noted local fears about vaccine safety. "My folks are concerned if [electronic] chips are going to be in the vaccine," she said.
No chips and no live virus, responded Dr. Lilly Immergluck, a Morehouse infectious disease physician. She explained how the vaccines work — information community health workers can share to counter misinformation.
"As a community health worker, I'm an advocate for vaccinations," Adrianne Proeller, community engagement coordinator at Morehouse, later said. But she added, "I think we need to be very careful about not coming on too strong, and listening and taking people's concerns seriously, and not just brushing them away."
'Support My Patients'
In Philadelphia on a December morning, Garfield reviewed her caseload and picked up her phone. "I'm just giving them a call to check on them in these stressful times of covid," she said.
One patient rents a room in a house with five other people. She wanted to move out because she was worried about the risk of covid with so many housemates. Garfield told her she would help with the search, but they would need to wait until it was safer to visit potential apartments. Another client had run out of food. Garfield arranged three months of deliveries from a food bank.
Vaccines promise to end the isolation caused by covid. Garfield offers information and answers questions, and if people feel uncertain, she encourages them to talk to their doctor. Ultimately, they will make the decision about when or if to get a covid vaccine.
But if they tell her they want a vaccine, she said, "we'll find a way to make it happen."
Kaitlyn Romoser first caught covid-19 in March, likely on a trip to Denmark and Sweden, just as the scope of the pandemic was becoming clear. Romoser, who is 23 and a laboratory researcher in College Station, Texas, tested positive and had a few days of mild, coldlike symptoms.
In the weeks that followed, she bounced back to what felt like a full recovery. She even got another test, which was negative, in order to join a study as one of the earliest donors of convalescent blood plasma in a bid to help others.
Six months later, in September, Romoser got sick again, after a trip to Florida with her dad. This second bout was much worse. She lost her sense of taste and smell and suffered lingering headaches and fatigue. She tested positive for covid once more — along with her cat.
Romoser believes it was a clear case of reinfection, rather than some mysterious reemergence of the original infection gone dormant. Because the coronavirus, like other viruses, regularly mutates as it multiplies and spreads through a community, a new infection would bear a different genetic fingerprint. But because neither lab had saved her testing samples for genetic sequencing, there was no way to confirm her suspicion.
"It would be nice to have proof," said Romoser. "I've literally been straight up called a liar, because people don't want to believe that it's possible to be reinfected. Why would I lie about being sick?"
As millions of Americans struggle to recover from covid and millions more scramble for the protection offered by vaccines, U.S. health officials may be overlooking an unsettling subgroup of survivors: those who get infected more than once. Identifying how common reinfection is among people who contracted covid — as well as how quickly they become vulnerable and why — carries important implications for our understanding of immunity and the nation's efforts to devise an effective vaccination program.
Scientists have confirmed that reinfections after initial illness caused by the SARS-CoV-2 virus are possible, but so far have characterized them as rare. Fewer than 50 cases have been substantiated worldwide, according to a global reinfection tracker. Just five have been substantiated in the U.S., including two detected in California in late January.
That sounds like a rather insignificant number. But scientists' understanding of reinfection has been constrained by the limited number of U.S. labs that retain covid testing samples or perform genetic sequencing. A KHN review of surveillance efforts finds that many U.S. states aren't rigorously tracking or investigating suspected cases of reinfection.
KHN sent queries about reinfection surveillance to all 50 states and the District of Columbia. Of 24 responses, fewer than half provided details about suspected or confirmed reinfection cases. Where officials said they're actively monitoring for reinfection, they have found far more potential cases than previously anticipated.
In Washington state, for instance, health officials are investigating nearly 700 cases that meet the criteria for possible reinfection, with three dozen awaiting genetic sequencing and just one case confirmed.
In Colorado, officials estimate that possible reinfections make up just 0.1% of positive coronavirus cases. But with more than 396,000 cases reported, that means nearly 400 people may have been infected more than once.
In Minnesota, officials have investigated more than 150 cases of suspected reinfection, but they lack the genetic material to confirm a diagnosis, a spokesperson said.
In Nevada, where the first U.S. case of covid reinfection was identified last summer, Mark Pandori, director of the state public health lab, said there's no doubt cases are going undetected.
"I predict that we are missing cases of reinfection," he said. "They are very difficult to ascertain, so you need specialized teams to do that work, or a core lab."
Such cases are different from instances of so-called long-haul covid, in which the original infection triggers debilitating symptoms that linger for months and viral particles can continue to be detected. Reinfection occurs when a person is infected with covid, clears that strain and is infected again with a different strain, raising concerns about sustained immunity from the disease. Such reinfections occur regularly with four other coronaviruses that circulate among humans, causing common colds.
Centers for Disease Control and Prevention guidelines call for investigating for possible reinfection when someone tests positive for covid at least 90 days after an original infection (or at least 45 days for "highly suspicious" cases). Confirmation of reinfection requires genetic sequencing of paired samples from each episode to tell whether the genomes involved are different.
But the U.S. lacks the capacity for robust genetic sequencing, the process that identifies the fingerprint of a specific virus so it can be compared with other strains. Jeff Zients, head of the federal covid task force, noted late last month that the U.S. ranks 43rd in the world in genomic sequencing.
To date, only a fraction of positive coronavirus samples has been sequenced, though the Biden administration is working to rapidly expand the effort. On Feb. 1, CDC Director Dr. Rochelle Walensky told reporters that sequencing has "increased tenfold" in recent weeks, from 251 sequences the week of Jan. 10 to 2,238 the week of Jan. 24. The agency is working with private companies, states and academic labs to ramp up to 6,000 sequences per week by mid-February.
Washington's state epidemiologist for communicable diseases, Dr. Scott Lindquist, said officials have prioritized genetic sequencing at the state laboratory, with plans to begin genotyping 5% of all samples collected. That will allow officials to sort through those nearly 700 potential reinfections, Lindquist said. More important, the effort will also help signal the presence of significantly mutated forms of the coronavirus, known as variants, that could affect how easily the virus spreads and, perhaps, how sick covid makes people.
"Those two areas, reinfection and variants, may cross paths," he said. "We wanted to be in front of it, not behind it."
The specter of reinfections complicates one of the central questions of the covid threat: How long after natural infection or vaccination will people remain immune?
Early studies suggested immunity would be short-lived, only a few months, while more recent research finds that certain antibodies and memory cells may persist in covid-infected patients longer than eight months.
"We actually don't know" the marker that would signal immunity, said Dr. Jason Goldman, an infectious diseases expert at Swedish Medical Center in Seattle. "We don't have the test you could perform to say yes or no, you could be infected."
Goldman and colleagues confirmed a case of reinfection in a Seattle man last fall, and since then have identified six or seven probable cases. "This is a much more common scenario than is being recognized," he said.
The possibility of reinfection means that even patients who've had covid need to remain vigilant about curbing re-exposure, said Dr. Edgar Sanchez, an infectious diseases physician at Orlando Health in Florida.
"A lot of patients ask, 'How long do I have to worry about getting covid again?'" he said. "I literally tell them this: 'You are probably safe for a few weeks, maybe even up to a couple of months, but beyond that, it's really unclear.'"
The message is similar for the wider society, said Dr. Bill Messer, an expert in viral genetics at Oregon Health & Science University in Portland, who has been pondering the cultural psychology of the covid response. Evidence suggests there may not be a clear-cut return to normal.
"The idea that we will end this pandemic by beating this coronavirus, I don't think that's actually the way it's going to happen," he said. "I think that it's more likely that we're going to learn how to be comfortable living with this new virus circulating among us."
The rural death rate plateaued in January while the urban death rate continued to swell. Even so, the rural death rate in January was more than six times as high as in November.
This article was published on Friday, February 5, 2021 in Kaiser Health News.
In the past two months, covid-related infection and death rates have jumped exponentially in California’s least populated counties.
From March through November, the state’s 25 least populated counties collectively reported 235 covid-related deaths, a per-capita death rate about 60% lower than that of the rest of the state. (California has 58 counties.) From Dec. 1 through Jan. 29, those same rural counties reported 427 covid deaths. That is nearly twice as many deaths in 60 days as in the preceding 250.
These 25 rural counties encompass some of the state’s most dramatic and rugged terrain, spanning mountains, forests and vast grasslands in California’s far north and along its eastern border. About 1.2 million people live in those counties, in small towns and agricultural outposts largely buffered from the state’s big cities and suburbs by distance and topography.
In the months after covid first emerged in California in January 2020, its reach was deadly but comparatively contained. It initially surged across densely populated areas of Southern California and the San Francisco Bay Area, then seeped into major agricultural and industrial hubs in the Central Valley and rural Imperial County, which shares a border and close community ties with Mexico.
For months, residents of the state’s remotest counties were able to move about more freely — and with less fear — than their urban peers. The covid death rate in the state’s 25 least populated counties was 90% lower from March through June than the rate in the rest of the state.
That began to shift in summer and changed dramatically during a third covid surge that exploded in late fall. In December, the 25 least populous counties collectively reported about 24,600 new covid infections — a 141% increase from November. In December, the death rate in those 25 counties roughly matched the rate in the state’s urban centers.
The rural death rate plateaued in January while the urban death rate continued to swell. Even so, the rural death rate in January was more than six times as high as in November.
Epidemiologists point to several reasons for the shift. While these counties are remote, they are not walled off. Many rural residents regularly drive to urban areas for goods and services. They get tourists. Several of California’s rural counties are home to large state prisons, teeming facilities that have experienced some of the worst covid outbreaks in the nation. Those outbreaks infect not only inmates housed in close quarters, but also guards and other staffers who live and shop in the surrounding communities and carry the virus out with them.
Once covid arrived, it multiplied. Rural communities tend to have a few central places where many people congregate. Those places became breeding grounds for the virus.
“In very small towns, you’ve got Dollar General, the coffee store, Walmart, church,” said Alan Morgan, chief executive officer of the National Rural Health Association. “You get the entire community going into three or four chokepoints, you’re going to infect the whole town.”
While covid has stressed public health agencies across the state, the challenges are brutal in rural areas, which tend to operate on tight budgets, with minimal staffing. As covid cases multiplied, rural health directors struggled to expand their response.
Dr. Gary Pace is the public health officer in Lake County, a wine-growing region and recreational mecca in north-central California that’s home to about 63,000 residents. Pace recounted how, early in the pandemic, his department was able to conduct intensive contact tracing as cases emerged, keeping outbreaks contained.
“There was a farmworker outbreak in June or July, and we basically drove out to that vineyard and set up a testing site and tested 150 people that day,” he said. “Same thing happened with the tribal outbreak recently. So in these high-risk communities where the spread can get out of control really fast, we were able to sort of jump on it and really try to stay on top of it.”
The county reported an average of four infections a day from March through November. In December and January, the figure jumped to about 31 a day. Contract tracing became untenable. “That worked until it didn’t,” Pace said.
In some rural counties, the viral spread was exacerbated by politicization of basic public health safeguards like wearing masks and physical distancing. California’s rural counties tend to run politically conservative, and many residents and elected leaders were indignant about state covid mandates that closed businesses and strictly limited social gatherings.
“You have two segments of people,” said Valerie Lakey, executive director of community relations and business development at Mayers Memorial Hospital District in Shasta County. “You have the people that are definitely on board with doing all the things they’re supposed to be doing, and then you have the rest of the people that don’t want to be told what to do.”
Lakey’s hospital is in Fall River Mills, a short drive from the border with Lassen County, a mountainous tourist destination that’s home to 29,000 people — and where covid deaths jumped to 14 in December and January from only two in the previous nine months.
Mayers Memorial normally sees three or four patients each day in its acute care hospital. In mid-January, it was seeing about 14 a day, Lakey said. Her small staff has struggled to keep up.
Lakey noted that the hospital’s covid patients “have all been on the older side, like probably 70-plus,” underscoring another vulnerability for rural counties. Residents of California’s least populous counties tend to be older than the statewide average: about 20% are 65 or older, compared with 14% of residents statewide. Age has emerged as the No. 1 risk factor for covid-related hospitalization and death.
In rural enclaves, as in the rest of the state, the number of new covid cases reported each day has begun to subside, though case rates are still much higher than in November. The state’s expansive vaccine rollout offers further hope, but in the short term it serves as another stress on resources as health officials try to vaccinate thousands of people while continuing to manage the pandemic.
“Everybody’s been working seven days a week for the whole 10 months now,” said Lake County’s Pace, “and it’s starting to show.”
Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.
Counting the dead is one of the first, somber steps in reckoning with an event of enormous tragic scope, be it war, a natural disaster or a pandemic.
This dark but necessary arithmetic has become all too routine during the covid-19 outbreak.
The total U.S death toll has now surpassed 450,000.
Each death is unique, a devastating loss that ripples through a family, a network, a community. But in the aggregate, the national death toll can feel abstract, and its repetition in the news can become numbing. Journalists, commentators and public officials are left searching for new ways to convey the deadliness of this pathogen, and the significance of its mounting fatality rate.
Many have turned to history, citing Pearl Harbor (2,403 killed) or the 9/11 attacks (at least 2,977 killed) as a way of providing perspective when the number of daily covid deaths in the U.S. reached those levels. (Currently, more than 3,000 Americans are dying from covid every day.)
Jan. 21, 2021, offered another opportunity for historical comparison: That was the day when the covid death toll in the U.S. reached — and then exceeded — the 405,399 Americans who died in World War II.
For many, attempting to compare the two death tolls — or even take note of their brief conjunction — is misguided or offensive. It is certainly a morally fraught exercise. The true emotional and social impact of either event can never be quantified, but many media outlets still mentioned it.
This raises the question: Are we as a society too quick to reach for these historical comparisons? Should a politically driven world war and a biologically driven pandemic, more than seven decades apart, be put side by side at all?
"This is comparing apples to oranges," wrote NPR listener Kris Petron in December in response to a story that made use of that comparison. "It is extremely disrespectful to our nation's veterans, who write a blank check with their lives, to defend our Constitution."
This type of response, over time, has convinced medical historian Dr. Howard Markel not to draw parallels between death tolls from war and a pandemic.
The notion that combat deaths carry a unique meaning or value is deeply rooted in human culture. Societies tend to valorize those who died for a cause on a battlefield.
But in this pandemic it's the frail elderly — many of them living in nursing homes and assisted living facilities — who have died in vast numbers.
"But, I don't think we have a right to weigh up lives and say which is more important," Snowden added.
Unlike covid-19, the global influenza pandemic of 1918-19 killed many people in their 20s and 30s — yet, as Snowden noted, there wasn't much collective mourning for those young adults, despite dying in the prime of life.
"People were so used to mortality because of the [first world] war that even the horrible tallies that were coming with the 'Spanish' influenza had lost their capacity to horrify the way that one might expect," he said.
When We Do Compare Death Tolls, What Exactly Are We Comparing?
The effort to compare the death toll of the pandemic with that of a war strikes historian Samuel Biagetti as an especially "modern" exercise.
"Through the vast majority of human history, people have understood warfare and disease to go hand in hand and to be inextricably linked," said Biagetti, who is the creator and host of the podcast "Historiansplaining."
The flu pandemic 100 years ago was fueled by the conditions of World War I and ultimately killed more people than the war, with an estimated 50 million flu deaths worldwide and upward of 700,000 flu deaths in the U.S.
Biagetti pointed out that World War II was the first conflict in American history in which combat killed more fighters than disease, a pattern that has continued since and reflects medical advances such as vaccines and antibiotics.
The carnage of war doesn't end just because peace is declared. The spillover effects of war continue long after formal hostilities end, and include disability and disfigurement, mental trauma, addiction, homelessness and suicide.
One example is the ongoing suicide crisis among U.S. veterans. From 2005 to 2017, 78,875 veterans died by suicide — more than the number of soldiers killed in Vietnam, 58,220.
For all these reasons, Biagetti said he worries about comparing the current pandemic to any war, even if just for the purpose of counting the dead: "You can't just try to sum up in a simple statistic how big is this disaster versus that disaster, as if they can even be summed up in a simple number at all."
And yet the language of warfare permeates so much of the national discourse about the pandemic.
Nurses work on the "front lines." Coronavirus is described as an invisible "enemy." The country is "battling" the virus. In his inaugural address, President Joe Biden said the pandemic has "taken as many lives in one year as America lost in all of World War II."
'War' Metaphor Is a Call to Action, a Recognition of Sacrifice
Some Americans whose relatives have died of covid embrace the rhetoric of war and believe comparing the pandemic to past wars is imperative.
"The scale of this is that of a war, it's just a different type of war and it's not one that we're necessarily taught in our history books," said Kristen Urquiza, who co-founded the advocacy group Marked By COVID after her father died from the disease over the summer.
Urquiza said the country struggled collectively to respond to the coronavirus because Americans have little understanding about what it takes to overcome a pandemic.
"In a way, it's sort of more dangerous [than war] because we are culturally unprepared for it."
There are also veterans who feel the war analogies are appropriate, and even helpful. Dr. Cleavon Gilman, an emergency physician in Yuma, Arizona, has treated covid patients from the early days of the outbreak and readily compares the pandemic to a war.
"It's very hard to communicate the severity of this pandemic if you're not in a hospital, where this war is being waged," said Gilman, who served as a Marine combat medic in Iraq in 2004.
World War II was the deadliest war in world history, but not in American history: That distinction belongs to the Civil War. The death toll has traditionally been estimated to be about 618,000, but new research indicates 750,000 may be more accurate.
But World War II looms large in America's cultural memory as a "good war," one that united the country against a clear-cut enemy, said Catherine Mas, a professor at Florida International University who studies the history of medicine, race and religion.
In retrospect, the American response to World War II stands in sharp contrast to the current political divisions over the coronavirus, and the fragmented and uneven national response.
Despite the differences, Mas said the comparisons can still be powerful tools as the country tries to reckon with a crisis that has taken place out of sight for many Americans. People are dying in hospitals without family members at the bedside, and only healthcare workers are there to bear witness.
"The reason we want to compare covid-19 deaths to something like World War II is not just because the numbers are there, but to acknowledge this is a significant rupture in society," she said.
"This mass death is going to create trauma: How are we going to deal with that? How have we dealt with that in the past? I think it's part of our human condition to try to search for some reference points."
This story was produced in partnership with NPR and KHN.
HELENA, Mont. — When the pandemic hit, health officials in Montana's Beaverhead County had barely begun to fill a hole left by the 2017 closure of the local public assistance office, mental health clinic, chemical dependency center and job placement office after the state's last budget shortfall.
Now, those health officials worry more cuts are coming, even as they brace for a spike in demand for substance abuse and mental health services. That would be no small challenge in a poor farming and ranching region where stigma often prevents people from admitting they need help, said Katherine Buckley-Patton, who chairs the county's Mental Health Local Advisory Council.
"I find it very challenging to find the words that will not make one of my hard-nosed cowboys turn around and walk away," Buckley-Patton said. "They're lonely, they're isolated, they're depressed, but they're not going to call a suicide hotline."
States across the U.S. are still stinging after businesses closed and millions of people lost jobs due to covid-related shutdowns and restrictions. Meanwhile, the pandemic has led to a dramatic increase in the number of people who say their mental health has suffered, rising from 1 in 3 people in March to more than half of people polled by KFF in July. (KHN is an editorially independent program of KFF.)
The full extent of the mental health crisis and the demand for behavioral health services may not be known until after the pandemic is over, mental health experts said. That could add costs that budget writers haven't anticipated.
"It usually takes a while before people feel comfortable seeking care from a specialty behavioral health organization," said Chuck Ingoglia, president and CEO of the nonprofit National Council for Behavioral Health in Washington, D.C. "We are not likely to see the results of that either in terms of people seeking care — or suicide rates going up — until we're on the other side of the pandemic."
Last year, states slashed agency budgets, froze pay, furloughed workers, borrowed money and tapped into rainy day funds to make ends meet. Health programs, often among the most expensive part of a state's budget, were targeted for cuts in several states even as health officials led efforts to stem the spread of the coronavirus.
This year, the outlook doesn't seem quite so bleak due in part to relief packages passed by Congress last spring and in December that buoyed state economies. Another major advantage was that income increased or held steady for people with well-paying jobs and investment income, which boosted states' tax revenues even as millions of lower-income workers were laid off.
"It has turned out to be not as bad as it might have been in terms of state budgets," said Mike Leachman, vice president for state fiscal policy for the nonpartisan Center on Budget and Policy Priorities.
But many states still face cash shortfalls that will be made worse if additional federal aid doesn't come, Leachman said. President Joe Biden has pledged to push through Congress a $1.9 billion relief package that includes aid to states, while congressional Republicans are proposing a package worth about a third of that amount. States are banking on federal help.
New York Gov. Andrew Cuomo, a Democrat, predicted his state would have to plug a $15 billion deficit with spending cuts and tax increases if a fresh round of aid doesn't materialize. Some states, such as New Jersey, borrowed to make their budgets whole, and they're going to have to start paying that money back. Tourism states such as Hawaii and energy-producing states such as Alaska, Wyoming continue to face grim economic outlooks with oil, gas and coal prices down and tourists cutting back on travel, Leachman said.
Even states with a relatively rosy economic outlook are being cautious. In Colorado, for example, Democratic Gov. Jared Polis proposed a budget that restores the cuts made last year to Medicaid and substance abuse programs. But health providers are doubtful the legislature will approve any significant spending increases in this economy.
"Everybody right now is just trying to protect and make sure we don't have additional cuts," said Doyle Forrestal, CEO of the Colorado Behavioral Healthcare Council.
That's also what Buckley-Patton wants for Montana's Beaverhead County, where most of the 9,400 residents live in poverty or earn low incomes.
She led the county's effort to recover from the loss in 2017 of a wide range of behavioral health services, along with offices to help poor people receive Medicaid health services, plus cash and food assistance.
Through persuasive grant writing and donations coaxed from elected officials, Buckley-Patton and her team secured office space, equipment and a part-time employee for a resource center that's open once a week in the county in the southwestern corner of the state, she said. They also convinced the state health department to send two people every other week on a 120-mile round trip from the Butte office to help county residents with their Medicaid and public assistance applications.
But now Buckley-Patton worries even those modest gains will be threatened in this year's budget. Montana is one of the few states with a budget on a two-year cycle, so this is the first time lawmakers have had to craft a spending plan since the pandemic began.
Revenue forecasts predict healthy tax collections over the next two years.
In January, at the start of the legislative session, the panel in charge of building the state health department's budget proposed starting with nearly $1 billion in cuts. The panel's chairperson, Republican Rep. Matt Regier, pledged to add back programs and services on their merits during the months-long budget process.
It's a strategy Buckley-Patton worries will lead to a net loss of funding for Beaverhead County, which covers more land than Connecticut.
"I have grave concerns about this legislative session," she said. "We're not digging out of the hole; we're only going deeper."
Republicans, who are in control of the Montana House, Senate and governor's office for the first time in 16 years, are considering reducing the income tax level for the state's top earners. Such a measure that could affect state revenue in an uncertain economy has some observers concerned, particularly when an increased need for health services is expected.
"Are legislators committed to building back up that budget in a way that works for communities and for health providers, or are we going to see tax cuts that reduce revenue that put us yet again in another really tight budget?" asked Heather O'Loughlin, co-director of the Montana Budget and Policy Center.
Mary Windecker, executive director of the Behavioral Health Alliance of Montana, said that health providers across the state are still clawing back from more than $100 million in budget cuts in 2017, and that she worries more cuts are on the horizon.
But one bright spot, she said, is a proposal by new Gov. Greg Gianforte, a Republican, to create a fund that would put $23 million a year toward community substance abuse prevention and treatment programs. It would be partially funded by tax revenue the state will receive from recreational marijuana, which voters approved in November, with sales to begin next year.
Windecker cautioned, though, that mental health and substance use are linked, and the governor and lawmakers should plan with that in mind.
"In the public's mind, there's drug addicts and there's the mentally ill," she said. "Quite often, the same people who have a substance use disorder are using it to treat a mental health issue that is underlying that substance use. So, you can never split the two out.