KFF Health News

KFF Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

As Pandemic Surged, Contact Tracing Struggled; Biden Looks to Boost It

KFF Health News, February 10, 2021

Biden proposes hiring 100,000 people nationwide as part of a new public health jobs corps. They would help with contact tracing and facilitate vaccination.

This article was published on Wednesday, February 10, 2021 in Kaiser Health News.

By Steven Findlay

Contact tracing, a critical part of efforts to slow the spread of the coronavirus, has fallen behind in recent months as covid-19 cases have soared. President Joe Biden had pledged to change that.

Biden proposes hiring 100,000 people nationwide as part of a new public health jobs corps. They would help with contact tracing and facilitate vaccination. Experts said it's not clear that would be enough tracers to keep up with another surge in covid cases, even if the vaccination rate increases at the same time.

As with everything covid right now — testing, vaccinations and hospital capacity — ramping up contact tracing has become a race against time as new, more contagious variants of the virus threaten to accelerate transmission of the disease.

In addition, as testing has steadily increased to around 2 million per day, so has the need for tracing. The two go hand in hand. Also, even conservative estimates put the number of people with undetected infection at two to three times the number with reported positive test results.

Such estimates translate to 75 million to 100 million infections in the U.S. Officials in California's Los Angeles County reported Jan. 14 that an estimated third of the population of the county, the nation's largest, was likely infected.

I have experienced the urgency of the pandemic up close. With a leap of faith, I became a foot soldier in the covid fight last June as a contact tracer in Maryland. Talking by phone to dozens of infected and exposed people every week, I hear about the impact of the virus on families in often sobering detail.

We tracers, for example, are often the first to reach people with their positive test results since labs and health systems frequently get backed up. For people already experiencing symptoms, our calls usually confirm what they suspected. For people without symptoms, though, we are the bearers of unwelcome news. That's not an easy part of the job.

Still, almost everyone we interview takes it in stride. They agree to isolate and provide us with the names of people they've come into "close contact" with — generally, within 6 feet for more than 15 minutes — in the previous week or two. Those contacts then get a call, too. The aim is to reach as many people as possible within 24 hours, to break the chain of transmission by urging them to stay home and quarantine.

Of course, not everyone cooperates. Some decline to quarantine or give the names of close contacts. Most states do not report the number of uncooperative people. But a Pew survey of adults conducted last July found that 93% said they would quarantine if told they had the virus. A third, however, said it would not be easy to do so — usually because of work — and a quarter said they would not be comfortable telling tracers about places they had been or people they'd been in close contact with.

As such, contact tracing has inherent limitations, and quarantining isn't enforced in the U.S. Tracing also becomes far less effective as the number of cases grows.

An analysis by researchers at Johns Hopkins University in Baltimore concluded that contact tracing in the U.S. can be fully effective in mitigating spread of the virus only when new cases are at or below 10 a day for every 100,000 people. The case count now exceeds that in most states. The national seven-day average as of Monday was 35 cases per 100,000.

"Tracing programs nationwide are overwhelmed right now," said Crystal Watson, a senior scholar at Hopkins' Center for Health Security. "States just don't have enough people to keep up."

Even so, Watson added, "every contact traced still means lives potentially saved. We can't let up."

Every state has a tracing program, but they vary widely. The Centers for Disease Control and Prevention has comprehensive covid tracing guidelines, but the Trump administration had neither data nor performance requirements for states to meet.

A White House spokesperson told KHN that the administration views contact tracing as "critical to efforts to reduce spread of the virus."

Staffing is the most significant challenge. Researchers at George Washington University in Washington, D.C., evaluated contact tracing needs and how states and counties performed.

Their bottom line, based on the most recent surge in cases: The nation would need 928,000 contact tracers to keep up with the current number of cases — or 281 per 100,000 people.

But that projection, which takes many factors into account, is widely viewed as unrealistic. The current number of tracers, according to data from Johns Hopkins, is 70,500.

"If we could get close to half the ideal number, it would help greatly," said Dr. Amanda D. Castel, a professor of epidemiology at George Washington University. "With luck the vaccine will begin to reduce the need."

Most states aren't even close to 140 tracers per 100,000 people. With 530 active tracers, the District of Columbia has 75 per 100,000 people, more than any state. Fifteen states have 12 or fewer per 100,000. And the number of people who have received two doses of the vaccine is not yet large enough to appreciably reduce the rate of infection.

State and county health departments are keenly aware of the deficit and have moved to hire more tracers or deploy existing state or county employees to the task. Maryland, for example, has hired several hundred tracers in the past three months and is up to 1,550, said Katherine Feldman, director of contact tracing for the state. That's still just 26 tracers per 100,000 people.

Nationally, states have hired about 17,500 tracers since October, according to Johns Hopkins data.

Biden recommended hiring contact tracers and other public health workers as part of his proposal for a $1.9 trillion covid relief and stimulus package.

Those hired would keep their jobs once the pandemic eases, to enhance the nation's permanent public health corps and readiness. The president's proposal does not stipulate, however, how many of those hired would be initially deployed to contact tracing. Administration officials did not respond to requests for comment on this point.

Last week, a group of Republican senators proposed a scaled-back $618 billion covid relief package that includes resources for vaccine distribution, testing and tracing but makes no mention of a public health service corps.

David Cotton, vice president for public health research at NORC, the University of Chicago survey and research organization that assists Maryland with its program, said that while tracers don't need medical or public health experience, hiring and training the right people and nurturing their skills is not something to be taken lightly.

"The success of tracing depends on having people in that job who can gain people's trust," he said. "Plus, the work can be quite emotionally draining."

States are also adjusting programs.

In Maryland, we have shortened the questionnaire and prioritized geographic areas with high positivity rates. People are also being texted to prompt them to answer our initial calls. These steps have sharply reduced a backlog of cases, said Feldman.

Nationally, traditional tracing programs successfully reach about 65% to 75% of people who test positive and 55% to 60% of contacts. Those numbers are likely trending lower over the past six weeks after the recent surge in cases, experts and state officials said.

But no one knows for sure. That's because there is no national reporting requirement or strategy for tracing metrics, and only 14 states make full data on their tracing programs public.

Native Americans Use Technology to Keep Traditions, Language Alive During Pandemic

KFF Health News, February 9, 2021

Many Native people have found innovative ways throughout the pandemic to continue sharing their culture despite physical distancing restrictions.

This article was published on Tuesday, February 9, 2021 in Kaiser Health News. This story also ran on CNN. It can be republished for free.

By Sara Reardon

WOLF POINT, Mont. — Lawrence Wetsit misses the days when his people would gather by the hundreds and sing the songs that all Assiniboine children are expected to learn by age 15.

“We can’t have ceremony without memorizing all of the songs, songs galore,” he said. “We’re not supposed to record them: We have to be there. And when that doesn’t happen in my grandchildren’s life, they may never catch up.”

Such ceremonial gatherings have been scarce over the past year as Native American communities like Wetsit’s isolate to protect their elders during the covid-19 pandemic. Reservations have been hit especially hard, with Native Americans nearly twice as likely to die as white people. Wetsit, a tribal elder and former chair of the Fort Peck Assiniboine and Sioux Tribes, said his tribe lost one person a day on average to the disease during October and November.

The deaths are doubly devastating to Native communities when they strike elders, as they are seen as the keepers of tribal history and culture. Wetsit worries that the combination of deaths and lockdowns will permanently harm the tribe’s ability to share traditional knowledge and oral history.

“Our grandchildren will feel it in their generation,” he said. “It’s like taking a number of pages of their textbook and ripping it out and throwing it away.”

With that in mind, many Native people have found innovative ways throughout the pandemic to continue sharing their culture despite physical distancing restrictions. Social media groups have provided some remedies, in ways that may continue after the pandemic wanes.

“If there was ever a time where we could see how interconnected our world is, that time is now,” said Jeneda Benally, a musician and member of the Navajo tribe in Arizona.

One Facebook group, known as Social Distance Powwow, has helped its Native members connect through sharing videos of drumming, dancing and other traditions. Since its founding in March, the group has accumulated more than 227,000 members and taken on a life of its own, with people sharing prayer requests, birthday celebrations and death announcements.

“We didn’t expect it to take off like it did,” said group co-founder Dan Simonds, an artist based in Bozeman, Montana, and a member of the Pequot tribe. “It showed how much something like this was needed.”

For group members who rarely leave their isolated reservations, the videos provide an opportunity to see other tribes’ homes and traditions for the first time. “Every tribe is different, like every European country,” Simonds said.

The group has provided a platform to talk about important issues. In January, organizers hosted a Facebook Live chat with a doctor, nurses and community representatives who could answer group members’ questions about covid vaccines. Skepticism about the safety of vaccination tends to be high among Native Americans, and more than 9,500 people viewed the event. “People are listening and learning,” Simonds said.

Simonds expects the group will continue after the pandemic ends, and he has created a nonprofit spinoff that plans to hold in-person powwows once it is safe. “This is one of the first times in history we have our own space by Natives where Natives can be heard,” he said.

Among other powwow events that have seen an online resurgence is the jingle dress dance, an Ojibwe tradition usually performed by groups of women wearing skirts adorned with tinkling metal bells. Women from various tribes have been posting Instagram videos of themselves dancing alone at home.

Brenda Child, an Ojibwe historian at the University of Minnesota, is not surprised the dance has become so popular during the pandemic. “Most women and young girls are very aware that that is a healing tradition,” she said.

According to legend, jingle dress dancing arose during the 1918 flu pandemic when a father with a sick little girl dreamed of a healing dance and had the dresses made for four women in his tribe. The girl recovered and became one of the first jingle dress dancers.

Child said the jingle dress tradition resonates because it is supposed to heal both the body and the mind during a time when fear and grief are rampant. “Ojibwe have always been aware there’s this psychological aspect to disease,” she said.

But some traditions are more difficult to share online, particularly those that rely on oral stories told by elders. Internet access can be scarce on remote reservations, and many older people struggle to use technologies like video chat. “It’s hard enough for our communities and elders to transmit that information to the next generation, but trying to find a way to do that with social distancing in this era is especially hard,” said Clayson Benally, Jeneda’s brother.

Since the Benallys’ band, Sihasin, can’t tour during the pandemic, the siblings have been performing online. They are also making instructional videos of traditional Navajo practices such as shearing sheep and harvesting medicinal plants.

“This is my desperate attempt to ensure that our culture continues to exist,” said Jeneda Benally. “Even though we’re losing people, this knowledge still exists. I don’t want our people to sink into a depression.”

Some practices are too sacred to share online, she said. Tribal members must walk a fine line between keeping people engaged and revealing privileged information to outsiders at the risk of cultural appropriation. Certain rituals, symbols and stories are meant to be shared only orally — many tribes forbid members to even write them down.

“It’s tricky because we have to be very cautious,” said Clayson Benally. “Our ancestors would never have imagined we’re teaching our ways through these airwaves that exist.”

Many Indigenous languages are in danger of disappearing forever, as speakers tend to be elderly and in fragile health. The pandemic has accelerated the threat.

“It’s the equivalent of having jumped forward 10 years and lost speakers that would have been with us still but now are gone,” said Wilhelm Meya, a member of the Lakota tribe and CEO of the nonprofit The Language Conservancy (TLC).

Meya’s organization preserves Indigenous languages through recordings, dictionaries, dubbed movies and lessons — mostly developed by sending linguists to visit Native speakers around the world. After the pandemic began, TLC set up computer terminals in unused schools and community centers on reservations. While staffers control the desktops remotely, language speakers and their families can visit the stations alone and record words.

By setting up six such terminals on the Crow reservation in Montana, TLC completed a four-year effort to develop an online interactive Crow dictionary app. Similar projects are underway with tribes in Wisconsin, Washington and other states.

Meya said the strategy worked so well that TLC will continue using it after the pandemic to record Native languages in remote areas like Alaska and Australia. The nonprofit plans to offer more online lessons: Being stuck at home has led to a surge of interest among Native people in learning their historical languages, he said.

To Wetsit, the knowledge that Native Americans’ culture and communities have persisted through centuries of adversity suggests they will survive this crisis.

“If you’ve had cultural teachings, they’ll help you remember that things will get better and it gives you hope,” he said. “I think that our people realize that our culture can be changed a little bit without great harm. There’s no wrong way to pray.”

Scalise's Claim That Unauthorized Immigrants Are Getting Priority for Vaccination Misses the Point

KFF Health News, February 9, 2021

Scalise said it is Biden's policy that "people who came here illegally can jump ahead of other Americans who have been waiting to get the vaccine."

This article was published on Tuesday, February 9, 2021 in Kaiser Health News.

By Victoria Knight

During a Feb. 2 interview on Fox News, Rep. Steve Scalise (R-La.) claimed President Joe Biden was allowing unauthorized immigrants to move ahead of American citizens to get their covid-19 vaccines.

"Now [Biden's] saying that people who came here illegally can jump ahead of other Americans who have been waiting to get the vaccine," said Scalise, who is also the No. 2 Republican leader in the House.

Lauren Fine, a spokesperson for Scalise, said the representative was referring to a Feb. 1 statement from the Department of Homeland Security, which said the agency "encourages all individuals, regardless of immigration status, to receive the COVID-19 vaccine once eligible under local distribution guidelines."

Since supply is limited, wrote Fine in an emailed statement, "for every vaccine an illegal immigrant gets, that's one an American citizen waiting in line is not getting. If you're an American citizen that's currently in a group that can't get the vaccine yet, you're now behind in the line to an illegal immigrant in a group that can get one."

Considering the DHS statement, other press statements and executive plans, the Biden administration has certainly been vocal about its position that all immigrants should be able to get this shot.

But, we wondered, does allowing this population access to the vaccine mean — as Scalise suggested — they are being invited to step in front of American citizens in the queue?

We asked the experts.

The Gist of Biden's Policies

The Biden administration released a national covid-19 strategy plan during the president's first week in office. The administration, according to the document, is "committed to ensuring that safe, effective, cost-free vaccines are available to the entire U.S. public — regardless of their immigration status."

The plan directs federal agencies to take action to ensure everyone living in the U.S. can access the vaccine free of charge and without cost sharing.

During a Jan. 28 press briefing, White House press secretary Jen Psaki said the administration feels "that ensuring that all people in the United States — undocumented immigrants, as well, of course — receive access to a vaccine, because that, one, is morally right, but also ensures that people in the country are also safe."

The DHS statement also specified that the U.S. Immigration and Customs Enforcement agency wouldn't conduct enforcement operations at or near vaccination sites or clinics.

The Biden administration didn't respond to a request to clarify its position on unauthorized immigrants' access to vaccines in relation to Scalise's claim. But, based on publicly available information, it is clear the administration wants immigrants to have access to the vaccine. However, no statement or provision in the administration's policies indicates they should "jump" ahead of other Americans.

Public health experts across the board criticized Scalise for his statement, in effect saying he was missing the point.

"The line is not drawn by your immigration or legal status," said Dr. Ranit Mishori, senior medical adviser for Physicians for Human Rights, a nonprofit that investigates the health consequences of human rights violations. "It's drawn by your vulnerability, your potential for exposure and your risk."

Jeffrey Levi, a professor of health policy and management at the George Washington University, said Scalise's claim misrepresents what Biden is trying to do.

"They are simply saying that if an immigrant falls within a category that is currently prioritized (e.g., a healthcare worker or someone over a certain age), they should not be excluded from getting the vaccine," Levi wrote in an email. "It does not put an immigrant ahead of a prioritized category."

Samantha Artiga, director of racial equity and health policy at KFF, a nonpartisan health policy organization, had a similar take. (KHN is an editorially independent program of KFF.)

"The policies clarify that all people in the U.S. are eligible for vaccinations regardless of their immigration status and encourage immigrants to get vaccinated when they become eligible based on their local guidelines," she wrote in an email. "They do not prioritize immigrants."

Dr. Jeffrey Singer, a senior fellow in health policy with the Cato Institute, a D.C.-based free-market think tank, said the Biden plan is just following standard public health policy and epidemiological principles.

"Trying to place an emphasis on immigration status might be a good way to press people's buttons to get a sound bite on television," said Singer. "But immigration status is really irrelevant when we're prioritizing people. It doesn't matter where you come from. If you're here in the U.S., you should get vaccinated."

Part of the Essential Workforce

The Centers for Disease Control and Prevention's independent Advisory Committee on Immunization Practices recommended in December that states should first prioritize vaccinating healthcare workers and residents and staff members of long-term care facilities. The next priority group, according to ACIP, should be people ages 75 and older and other front-line essential workers who are not in healthcare. The Biden administration also recently recommended the age category be lowered to include all seniors, age 65 and older. However, states are free to create their own vaccine distribution plans and decide what groups will get vaccinated first.

Unauthorized immigrants make up significant percentages of the workforces deemed "essential" by ACIP. For example, KFF reports that noncitizens (a broad group that could include immigrants in the country lawfully) constitute 22% of all food production workers, 8% of workers in long-term care facilities and 5% of healthcare workers who have direct patient contact.

The Migration Policy Institute estimated in a February report the number of unauthorized immigrants who qualify as essential workers ranges from 1.1 million to 5.6 million, depending on how essential workers are defined. The institute also reported that about 49% of the estimated 2.4 million farmworkers in the United States were unauthorized immigrants as of 2016.

And it's important those groups get vaccinated regardless of immigration status, not just as a good public health practice, but also from an ethical and humane perspective, said Dr. Georges Benjamin, executive director of the American Public Health Association.

"It has obviously been a long-standing public health principle that infection anywhere affects the health of everyone," said Benjamin. "It is also of the highest ethical standards to make sure everybody gets vaccinated and gets treated for infectious disease."

Benjamin added that many unauthorized immigrants who work in essential roles are the foundation keeping society functioning during the pandemic, such as restaurant workers and caretakers.

"They're at higher risk because they're out and about and they can't shelter at home," said Benjamin. "At the end of the day, if we did not vaccinate them and they could not go to work, our economy would totally collapse."

Plus, 70% to 90% of the population needs to be vaccinated to reach herd immunity in the U.S.

"As long as this doesn't happen, it doesn't matter who is vaccinated," said Mishori. "To reach herd immunity in the U.S., everyone, regardless of their immigration status, needs to get vaccinated."

"Viruses don't know the legal status of their victims," Mishori added.

One other note is that the population in question is small compared with the total U.S. population. About 11 million unauthorized immigrants live in the U.S., making up around 3% of about 330 million people in the country.

Our Ruling

Scalise said it is Biden's policy that "people who came here illegally can jump ahead of other Americans who have been waiting to get the vaccine."

The Biden administration has made it clear that unauthorized immigrants are eligible to receive the vaccine if they are part of a priority group, such as healthcare workers or seniors. That does mean some unauthorized immigrants who meet specific vaccination criteria for job duties or age could receive a shot before American citizens who do not meet those requirements. This is in keeping with long-standing public health practices.

But Scalise was misrepresenting Biden's policy when he suggested that unauthorized immigrants are being prioritized over American citizens or can jump the vaccination line.

Eligibility for the vaccine is based on job and age categories — period. Under the Biden approach, immigration status is not a qualifying or disqualifying factor.

His statement contains an element of truth but ignores critical facts that would give a different impression. We rate this claim Mostly False.

Gene Screenings Hold Disease Clues, but Unexplained Anomalies Often Raise Fears

KFF Health News, February 9, 2021

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.

By Christina Bennett

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.

Multiple-gene panel tests emerged in 2012 and the number of genes covered in these panels has since ballooned, with tests that include more than 80 genes associated with cancer commonly available.

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."

Christina Bennett: @https://twitter.com/tinabenn12?lang=en

Vaccine Hesitancy vs. Vaccine Refusal: Nursing Home Staffers Say There's a Difference

KFF Health News, February 9, 2021

In North Carolina, the health secretary has said more than half of nursing home workers are declining the vaccine.

This article was published on Tuesday, February 9, 2021 in Kaiser Health News.

By Aneri Pattani

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."

Aneri Pattani: apattani@kff.org, @aneripattani

After Nearly 60 Years of Marriage, This Missouri Couple Stayed Together to the End

KFF Health News, February 8, 2021

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.

This article was published on Monday, February 8, 2021 in Kaiser Health News. This story also ran on St. Louis Post-Dispatch.

By Cara Anthony

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.

Schools Walk the Tightrope Between Ideal Safety and the Reality of Covid

KFF Health News, February 8, 2021

Nearly one year into the pandemic, fewer than half of students are attending schools that are teaching in person every day.

This article was published on Monday, February 8, 2021 in Kaiser Health News.

By Laura Ungar and Samantha Young

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."

Laura Ungar: lungar@kff.org, @laura_ungar

Samantha Young: syoung@kff.org, @youngsamantha

California's Smallest County Makes Big Vaccination Gains

KFF Health News, February 8, 2021

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.

By Hannah Norman February 8, 2021

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.

Across the nation, many rural health departments are crafting creative vaccine delivery strategies and finding success largely because they have a lot fewer people to vaccinate than urban areas.

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."

Hannah Norman: hannahn@kff.org, @hnorms

Community Health Workers, Often Overlooked, Bring Trust to the Pandemic Fight

KFF Health News, February 8, 2021

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.

Other studies similarly showed lower health costs.

Investing in Community Engagement

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."

Why the U.S. Is Underestimating Covid Reinfection

KFF Health News, February 8, 2021

U.S. health officials may be overlooking an unsettling subgroup of survivors: those who get infected more than once.

This article was published on Monday, February 8, 2021 in Kaiser Health News.

By JoNel Aleccia

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 43^rd 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."

JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia

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