Peter Prater's family wasn't thinking about covid-19 when the call came that he had been taken to the hospital with a fever.
It was April, and the Tallahassee Developmental Center, where Prater lives, hadn't yet had any covid diagnoses. Prater, 55, who has Down syndrome and diabetes, became the Florida center's first known case, his family said. Within two weeks, more than half of the roughly 60 residents and a third of the staff had tested positive for the virus, according to local news reports.
"We thought we were going to lose him," said Jim DeBeaugrine, Prater's brother-in-law, who also works as an advocate for people with disabilities. "We weren't aware of a correlation to Down syndrome and bad outcomes with covid yet. He's just a frail person, period."
Prater survived after roughly seven weeks in the hospital. But five others from the center — three residents and two staffers — died. The center is working to follow federal and state pandemic guidelines, said Camille Lukow, regional director of the Mentor Network, which began operating the facility in December.
Early studies have shown that people with intellectual and developmental disabilities have a higher likelihood of dying from the virus than those without disabilities, likely because of a higher prevalence of preexisting conditions. While some high-profile outbreaks made the news, a lack of federal tracking means the population remains largely overlooked amid the pandemic.
No one knows how many of the estimated 300,000 people who live in such facilities nationwide have caught covid or died as a result. That creates a blind spot in understanding the impact of the virus. And because data drives access to scarce covid vaccines, those with disabilities could be at a disadvantage for getting prioritized for the shots to keep them safe.
While facilities ranging from state institutions that serve hundreds to small group homes with a few people have been locked down throughout the pandemic, workers still rotate through every day. Residents live in close quarters. Some don't understand the dangers of the virus. Those who need help eating or changing can't keep their distance from others. Many facilities also have struggled to keep enough masks and staffers on hand.
The Consortium for Citizens with Disabilities has repeatedly asked federal agencies to hold facilities where people with disabilities live to the same pandemic rules as nursing homes, which must report covid cases directly to national agencies.
Nicole Jorwic, senior director of public policy with The Arc of the United States, a nonprofit that serves people with disabilities, said a spotlight on nursing homes makes sense. Those homes have seen more than 121,000 deaths due to the pandemic. But it's unclear what the toll is at the facilities focused on those with disabilities.
"How do we know how big the problem is if we're not capturing it?" she asked.
Greg Myers, a Centers for Medicare & Medicaid Services press officer, said in an email that states, not federal officials, manage Medicaid-funded intermediate care facilities and group homes for people with developmental disabilities. He said many of those facilities serve fewer than eight residents and don't "pose the same concerns as larger congregate settings."
Some states are tracking the caseloads, though Jorwic said the type of information they collect varies. New York state data revealed disability group home residents there are dying at higher rates than the general population. In Illinois — which called on the National Guard to respond to outbreaks in two of the state's largest developmental centers in April — more than half of the 1,648 residents in state-run developmental facilities have had the virus.
Still, cases are flying under the radar. When The Associated Press did a national survey in June of how many people in such housing have fallen sick or died of covid, about a dozen states didn't respond or release comprehensive data.
"The delay or complete lack of access to this data comes with a body count," Jorwic said. "You're not acknowledging that these settings are just as dangerous as other settings, like nursing homes."
Centers for Disease Control and Prevention guidelines recommend that states prioritize long-term care facilities early in the vaccine rollout, but few states specified that people with disabilities who live in group homes should be candidates for that initial vaccine distribution.
New York is one of the few that did specifically include certified-group facilities, and this month opened access to all people with intellectual or developmental disabilities.
"New York state has the actual data to help show the horrors of covid," said Dr. Vincent Siasoco, a primary care physician in New York City who focuses on patients with developmental disabilities.
Siasoco, a board member of the American Academy of Developmental Medicine and Dentistry, said that likely misses people with medical risks not yet reflected in data, like someone living in a group home with cerebral palsy who gets food through a tube and can't speak.
"More studies have to be done. Data has to be shared," Siasoco said.
In the meantime, the academy has said intellectual and developmental disability diagnoses should be explicitly included on the list of high-risk conditions used to determine vaccine priority, and facilities housing those with disabilities should have access at the same time as nursing homes — though, Siasoco acknowledged, there's a long line of people advocating to be prioritized and not enough vaccine to go around.
In Montana, people in group living settings including disability housing were in the phase initially right behind healthcare workers and nursing home residents on the list for vaccines. But the new governor, Republican Greg Gianforte, instead prioritized anyone 70 and older and those with underlying health conditions, with the goal of protecting the most vulnerable. The change nearly tripled how many people qualify for that phase of the vaccine rollout.
Group home administrators have said many of their clients may still qualify for a vaccine under the governor's new rule because of their medical risks. The new plan also allows health providers to include people with medical conditions on a case-by-case basis.
Dee Metrick, the executive director of Reach Inc., which offers group housing in Bozeman, said the local health department is working to get shots to Reach's residents. However, she said, the change creates more uncertainty for some people with disabilities across the state, as each county does things differently.
"We're hoping this will unfold in their favor, but we just don't know," said Metrick, who added that people with developmental disabilities have historically not received proper medical care or fair treatment.
In Florida, the state's covid vaccine plan included group living settings for those with disabilities in its early vaccine rollout to long-term care facilities.
"But there have been instances where local authorities have not gotten the memo," said Jim DeBeaugrine, Prater's brother-in-law, who is also the interim CEO of The Arc of Florida.
The state has faced criticism for being slower with its vaccine rollout than some expected and after some camped out in lines overnight to get a dose — something group home residents can't do. DeBeaugrine said that how and when group homes can get vaccines to their residents varies, but all should be able to start by March 1.
By February, Prater's family had heard he would have the option to receive a dose, but a bacterial infection has delayed him from being able to get the shot.
Sam Edelman felt like a girl for as long as he could remember, his dad said. As Sam's 18th birthday approached, and after years of researching hormone treatments, the high school senior scheduled an appointment with a doctor who treats transgender people.
It was a big step for Sam, a musician, a runner, a snowboarder and a taekwondo black belt who still identified as a boy at that point and had shared his secret only with his family and closest confidants.
The doctor said Sam was too young and thought it unlikely that any doctor would treat the Bozeman, Montana, teen for the same reason. Ten months later, on Feb. 20, 2016, Sam died by suicide.
"Sam was devastated," said Adam Edelman, Sam's father, recalling that visit with the doctor. "He lost hope."
As legislatures meet across the U.S. to write new laws, at least 16 states are considering measures that would affect transgender athletes or those seeking treatment for gender dysphoria — the persistent and distressing feeling that one's gender is different from the sex noted on the person's birth certificate.
This wave of state legislation follows 79 anti-transgender measures introduced in statehouses last year. Nearly all were defeated.
Adam Edelman was motivated to tell Sam's story as Montana lawmakers considered two proposals: criminalizing doctors who treat transgender minors and banning transgender student-athletes from competing under their self-identified sex. One Montana bill would have fined doctors who provided treatment with medicines like puberty blockers to anyone under age 18 up to $5,000; even a referral to another medical expert could threaten a doctor's medical license. That bill was narrowly defeated in the Montana House of Representatives in January, 51-49.
The House passed a separate measure that would ban transgender athletes from competing on teams that don't align with their sex at birth. The state Senate is considering the proposed ban, though opponents of the measure say there are no existing conflicts or disputes in schools that would make a ban necessary.
At least 10 states besides Montana are considering similar bills restricting transgender student-athletes this session: Connecticut, Hawaii, Iowa, Kentucky, Mississippi, New Hampshire, North Dakota, Oklahoma, Tennessee and Texas.
Montana's bill to criminalize doctors for medically treating transgender children — which can still be revived with enough votes — is similar to bills being considered in at least 10 other states this year: Alabama, Iowa, Indiana, Mississippi, Missouri, Oklahoma, South Carolina, Tennessee, Texas and Utah.
This push across the U.S. is happening despite a decision by President Joe Biden shortly after his inauguration to lift LGBTQ restrictions in the military by executive order. It also comes after North Carolina lost an estimated $3.76 billion to boycotts following a 2016 law requiring people to use the bathroom that matches their birth gender. That law has since been repealed.
Laura Haynes, a retired faith-based clinical psychologist, is a major advocate of bills to ban medical intervention for transgender youth. Traveling from her home in California to testify before a Montana House committee hearing, she argued that social influences and media glamorization have led to a huge increase in youth identifying as transgender.
Most would eventually embrace their birth sex if adults just "watched and waited," said Haynes, who also supports the discredited practice of conversion therapy for gays and lesbians.
She and proponents of the measures raise the specter of children undergoing dangerous and irreversible treatment.
"Experimental treatment affirming gender identity leads to puberty blockers, toxic wrong-sex hormones, organs devoid of function or pleasure, and potential mutilation of sex organs," said Haynes.
But the treatments are not experimental, and surgeries are not approved for youths under age 18, said Dr. Colleen Wood, one of four pediatric endocrinologists in Montana.
Medical association protocols call for no medical intervention before puberty. If youths persist in feeling distressed about their bodies once puberty begins, an arduous process commences.
If both parents consent and a mental health professional agrees, a teen might be approved for a puberty blocker prescription. Blockers have been used for 40 years to treat children with early onset of puberty and are reversible, said Dr. Lauren Wilson, vice president of Montana's chapter of the American Academy of Pediatrics.
Blockers are typically taken for five years before hormone therapy is considered. After teens have lived as the gender they embrace and undergone a comprehensive mental health assessment, they might be prescribed estrogen or testosterone.
If the hormones are stopped, the results are largely reversible, although some breast tissue may remain from estrogen, and a deepening of the voice and clitoris enlargement might be permanent from testosterone, said Wood. Infertility is a possible outcome.
A Cornell University review of 55 peer-reviewed studies found that 93% showed gender transition improved the overall well-being of transgender people, while 7% found mixed results or no differences.
Of the bills involving transgender people that were considered last year in states — including medical treatment bans, sports bans and hurdles to changing sex designations on documents like driver's licenses — all failed except a sports ban in Idaho. A federal district court later ruled the Idaho law unconstitutional and issued an injunction. The case is now before the 9th Circuit Court of Appeals.
The sports bans run counter to NCAA rules, which state that transgender females who were born male may compete on female teams if they have been taking hormones for one year. Laws that don't follow NCAA rules could result in those states being banned from hosting championship games.
Montana Republican Rep. Braxton Mitchell, a 20-year-old freshman lawmaker and supporter of the Montana measure, was dismissive of potential consequences. "My House district is nearly 1,800 miles and a 27-hour drive from the NCAA" headquarters in Indianapolis, he said. "We will hold our own."
Without legislative action, Mitchell said, he worried that women's sports in the state will be ruined.
"Someone can wake up one morning and say, 'I'm a man today,' or 'I'm a woman today,' as a tactic to win in sports," Mitchell said.
That's not how it works, said Jaime Gabrielli, the mother of a child born female who identified as a boy as a toddler. When taken to the store to choose "big kid pants" during potty training, he ran to the boys' section and chose SpongeBob SquarePants briefs. At age 4, he begged for a boy's haircut and instead was given a pageboy with bangs. He "fixed" it by cutting off his own hair.
Presenting himself to the world as a boy transformed his life, said Gabrielli. For the first time, he didn't dread school, didn't avoid going to movies and social events, and didn't experience as much extreme anxiety.
If the bills pass, civil rights groups have vowed to challenge them on constitutional grounds and as a violation of other legal protections. In addition to the equality issues these bills raise, civil liberty advocates questioned their practicality.
"It is unclear what would happen in Montana if someone disputes whether a person is in the 'correct' category," said Alex Rate, legal director of the Montana ACLU.
Then there are the changing attitudes about children who question their gender. A father from rural Montana said in an anonymous letter to the Montana legislature that five years ago he would have supported both bills.
Those were the years he had tried to prevent his child, born a boy, from expressing identity as a girl.
"After I found my 12-year-old sitting in the dark with a handgun one night, I realized I need to learn from my daughter who she was, instead of me trying to tell her who I thought she was," the man wrote.
Treatment, he added, saved her life. And he no longer supports bills like the ones before the Montana Legislature.
On Jan. 14 at 8:43 p.m., Patrick McKenzie tweeted a plea for tech engineers to help him set up a website to track covid-19 vaccine availability in California. McKenzie, who heads a Bay Area financial services tech company, issued the call to "anyone in California [who] wants to do a civtech project which matters."
The response was swift and resounding. In less than an hour, someone had set up a chat group for brainstorming the effort. By 12:24 a.m. the next day, 70 people had joined. By noon, the tracker was live. Now, just over two weeks later, the site, called VaccinateCA, involves about 300 volunteers. They operate what is essentially a call bank, dialing pharmacies and hospitals for updates about covid vaccine supplies and posting the results on the site.
The quick and ardent response to McKenzie's pitch highlights just how desperate Californians have become amid a chaotic vaccine rollout that has overwhelmed public health departments. Similar crowdsourced websites have gone up in Georgia, New Jersey, Michigan, Texas and other states.
While helpful to some, however, the websites and apps have only compounded the frustration for many people seeking vaccines for themselves or loved ones but can't secure an appointment no matter how hard they try because supply is limited. Critics say that, at best, they simply enable the tech-savvy and people with time on their hands — two groups that don't necessarily overlap with those most in need of covid vaccination — while leaving poor and minority communities behind.
"If you have an hourly job, you're not going to be on your phone every minute," said Jeffrey Klausner, a professor of preventive medicine at the University of Southern California's Keck School of Medicine, who likened the process of securing a vaccination to "The Hunger Games."
"We need call centers. We need people going out into the community door to door, registering people as if there were a census. You need to somewhat structure the system to allow and prioritize access for the most disadvantaged — reversing structural racism, or factors that exclude certain groups."
Rhonda Smith, executive director of California Black Health Network, said it's vital to reach out to communities where vaccine hesitancy is strong. While technology can help centralize information, building trust and relationships is what's needed to convince skeptical communities of the vaccines' importance.
"They aren't going to just respond to a text message or a random app," she said.
Platforms like VaccinateCA acknowledge their limitations. "We recognize that this isn't our core strength today," said Zoelle Egner, a volunteer with the site. But the app could be a resource for organizations that work with disenfranchised communities, she said.
California is also working with an online platform called My Turn, developed by Salesforce, that will alert residents when they are eligible for vaccination and facilitate sign-ups. The state announced last week that it had hired insurance company Blue Shield of California to create and manage a statewide vaccination network.
While some platforms offer a central place to search for pharmacies and links to sign up for updates from hospital systems or local governments, they can't provide more vaccine-filled needles. With limited supply, a thousand allocation snafus and conflicting information about who is eligible, consumers find themselves signing up for wait lists and spending hours trying to snag appointments, only to be told there's no vaccine for them or their loved ones. The apps can't do anything about that.
Many users have found success. Melissa Reyes, who lives in Sacramento, was able to get her 76-year-old mother vaccinated after checking VaccinateCA. She called four pharmacies listed on the site before she hit the jackpot with her local Save Mart. She tweeted to VaccinateCA to thank the group.
For many others, success rests on luck: clicking through to the right pharmacy or supermarket website at the right time before all appointments are gone. For every exuberant user, there are often multiple frustrated people unable to land an appointment.
Misa Ahmad, whose 83-year-old father lives in Oakland, said VaccinateCA didn't work for her. She ended up deciding to wait for her father's healthcare provider, Kaiser Permanente, to contact him with an opening. (KHN, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Her VaccinateCA search involved "going through trying to look at all of the places and figure out what they are, where they are, if they would be optimal for him, and then locating some and then trying to see if I can get an appointment. That is a very time-consuming process. And, unfortunately, my father has limited technological ability."
Other users have found that the information provided is sometimes inaccurate, a product of ever-changing state and county regulations. Many Californians are still finding that, while Gov. Gavin Newsom announced that residents age 65 and older are eligible for the vaccines, their counties are still allowing only those 75 and older to sign up. Who is eligible for vaccination differs by county.
"What's really frustrating is I keep getting texts and emails from the Department of Public Health saying, 'You're eligible for the shot; call your healthcare providers,' and you call and no one is giving it to your age yet," said Leanna Dawydak, a 66-year-old San Franciscan. She estimates she's spent an average of four hours a day since Jan. 13 trying to find an appointment, only to be told she's too young, lives in the wrong county or gets her care from the wrong healthcare system.
Some localities have purchased or set up their own apps, with mixed results. Orange County reportedly paid $1.2 million to tech company CuraPatient to create an app for organizing the vaccination of county residents. County public health officials had registered 493,000 people as of Jan. 29, with about 81,320 having received a vaccine.
But the app, Othena, has gotten bad reviews. Residents say its interface is unfriendly, with bugs that have resulted in people being improperly scheduled for appointments.
"It's a disaster. It's a total mess," said Suzanne Haggerty, 60.
Haggerty, who has severe asthma, scheduled a vaccination through Othena, drove 45 minutes from her home to the vaccination site at Disneyland and spent two hours standing in line with her appointment and barcode in hand. She was turned away once she got to the front. A glitch in the app had cleared her for an appointment available only to those 65 and older. Staffers told her that about 50 people a day were being turned away for the same reason.
Still, some tech companies are confident they can ameliorate the scheduling fiasco.
Zocdoc, a web platform founded in 2007 to bring patients in for last-minute appointments with doctors, built a pilot program with New York's Mount Sinai Hospital late last year for scheduling covid vaccinations for hospital staffers. Now the company has begun a partnership with the Chicago city government to offer its vaccine scheduler tool — free — to care organizations and public health agencies, said Zocdoc founder and CEO Oliver Kharraz. His company's years of experience with scheduling software is a huge advantage, he said.
Zocdoc is the main platform for Chicago residents to make vaccination appointments free of charge, aggregating real-time appointment openings from various vaccination sites and care organizations. But vaccine supplies and shipments are out of his control, Kharraz said.
"I want to make the following disclaimer," he said. "The vaccines, per se, are in short supply. So, I think Chicagoans should expect limited availability."
Thousands of counterfeit 3M respirators have slipped past U.S. investigators in recent months, making it to the cheeks and chins of healthcare workers and perplexing experts who say their quality is not vastly inferior to the real thing.
N95 masks are prized for their ability to filter out 95% of the minuscule particles that can carry covid-19. Yet the fakes pouring into the country have fooled healthcare leaders from coast to coast. As many as 1.9 million counterfeit 3M masks made their way to about 40 hospitals in Washington state, according to the state hospital association, spurring officials to alert staff members and pull them off the shelf. The elite Cleveland Clinic recently conceded that, since November, it had inadvertently distributed 3M counterfeits to hospital staffers. A Minnesota hospital made a similar admission.
Nurses at Jersey Shore University Medical Center have been highly suspicious since November that the misshapen and odd-smelling "3M" masks they were given are knockoffs, their concerns fueled by mask lot numbers matching those the company listed online as possible fakes.
"People have been terrified for the last 2½ months," said Daniel Hayes, a nurse and union vice president at the New Jersey hospital. "They felt like they were taking their lives in their hands, and they don't have anything else to wear."
According to 3M, the leading U.S. producer of N95s, more than 10 million counterfeits have been seized since the pandemic began and the company has fielded 10,500 queries about the authenticity of N95s. The company said in a Jan. 20 letter that its work in recent months led to the seizure of fake 3M masks "sold or offered to government agencies" in at least six states. After KHN sent photos of the masks the New Jersey nurses questioned, a 3M spokesperson referred to them as "the counterfeits you identified."
At KHN's request, ECRI agreed to test the masks that sparked the New Jersey nurses' concern. Tests of a dozen masks showed they filtered out 95% or more of the 0.3-micron particles they're expected to catch. (ECRI is a nonprofit that helps health providers assess the quality of medical technology.)
ECRI engineering director Chris Lavanchy said several health organizations across the U.S. have recently made similar requests for tests of apparently fake 3M masks that the company warned about.
Lavanchy said the results have shown similarly high filtration levels, but also higher breathing resistance than expected. He said such resistance can fatigue the person wearing the mask or cause it to lift off the face, letting in unfiltered air.
"We're kind of scratching our heads trying to understand this situation, because it's not as black-and-white as I would have expected," Lavanchy said. "I've looked at other masks we knew were counterfeit and they usually perform terribly."
3M spokesperson Jennifer Ehrlich said a critical feature of N95 masks, aside from filtration, is how well they fit.
"Without a proper seal and fit, respirators are not filtering [properly] — gaps could allow air to enter," Ehrlich said via email.
The materials management team for Hackensack Meridian Health, which owns the Jersey Shore hospital, is "working with an independent lab on validating the quality and compliance of specific lot numbers of 3M N95 respirators the company identified as potentially problematic," according to a company statement.
When the Washington State Hospital Association purchased 300,000 N95s in December, it sent samples to hospital leaders, who said they appeared legitimate.
"It's not like we just ordered them sight unseen," said Beth Zborowski, spokesperson for the association. "We had two major medical centers in Seattle … look at the quality, straps, cut them open and decide 'This looks like it's the real deal' before they bought them."
She said major hospital systems in the state bought more on their own, adding up to 1.9 million.
Throughout the pandemic, workers have also been provided with Chinese-made KN95 masks — approved by U.S. regulators on an emergency basis — that turned out to be far less effective than billed.
In April, the Food and Drug Administration, responding to dire shortages of high-quality masks for healthcare workers, opened the door to KN95s, which are supposed to offer the same level of protection as N95s.
Yet, as months passed, researchers from the Centers for Disease Control and Prevention, Harvard, MIT and ECRI discovered that KN95s did not meet the high standard: 40% to 70% of the KN95s failed their tests and some filtered out only 30% of the tiny particles.
More than 3,400 front-line healthcare workers have died during the pandemic, KHN and The Guardian have found in the ongoing Lost on the Frontline project, and many families have raised concerns about inadequate protective gear. Yet the actual harm that any substandard or knockoff device presents remains difficult to assess.
Researchers say it's unethical to conduct a study that involves giving health workers a product they know is less protective than another when lives are at stake. And short of performing in-depth genome sequencing on each worker's viral strain, it's hard to know exactly how any person got sick.
At the U.S. border, safeguarding the medical gear supply is a high priority, said Michael Rose, a section chief in U.S. Immigration and Customs Enforcement's global trade division.
His job for the past year has been investigating a wide variety of covid-related scams. Of all those cases, Rose said, the flood of fake 3M masks from China has been the most consistent.
"It's definitely cat and mouse," Rose said. "Where we might get better [at intercepting counterfeits], they can ship elsewhere, change the name of the company and keep going."
Many investigations lead to seizures in the nation's massive ports of entry, where enormous cargo ships and planes carry giant containers of goods. There, agents might spot a dead giveaway like a box just off a ship from Shenzhen, China, marked "3M" and "Made in the USA."
"I'd like to say that makes it easier, and it does, but the sheer volume of them coming in …" he said. "It's like a needle in a stack of needles."
The demand for highly protective masks has surged twelvefold during the pandemic, said Chaun Powell, vice president of disaster response for Premier, a major hospital supply company. The national medical use of N95s used to be about 25 million a year, but it soared to 300 million last year, he said.
That meant hospitals and other health providers couldn't rely on their usual sources of products to meet their need for personal protective gear.
Healthcare providers "had to find alternatives," Powell said, "and that created opportunities for fraudulent manufacturers to be opportunistic and sneak in."
Many of Rose's investigations originate from customer complaints about apparent fakes to 3M, which forwards reports to his team. Others come from hospitals, health systems or eagle-eyed first responders who email Covid19fraud@dhs.gov.
Border Patrol agents, working with Rose's team and anticipating shipments from known counterfeiters, have seized thousands of fake N95s in recent weeks, including 100,080 at a port of entry near El Paso, Texas, in December and 144,000 flown from Hong Kong to New York. In all, federal officials say, they have seized more than 14.5 million masks, many fake 3Ms but other counterfeit cloth or surgical masks as well.
In New Jersey, staff members began complaining in November about their masks to union leaders at Jersey Shore University Medical Center, said Kendra McCann, president of the hospital's Health Professionals and Allied Employees union local.
The masks, which seemed flimsy and made some workers' faces burn, were turning up in every unit of the hospital. After a union member discovered a letter on the 3M website pinpointing their mask lots as potentially fake, managers began to remove the masks but suspected fakes continued to turn up, McCann said.
Hackensack Meridian said a daily call with hospital leaders includes "reminders to report any suspect PPE so that it can be removed immediately and evaluated."
The episode added stress to caregivers who are terrified about getting infected and bringing the virus into their own homes.
"Nurses are scared to death," McCann said in mid-January as the masks continued to pop up, "because they're not being provided with the proper PPE."
The concerns arising in western North Carolina, a region tucked between Asheville to the east and the Appalachian Mountains to the west, provide a window into the challenges facing health workers across the country.
Kim Wagenaar has been preparing to bring covid-19 vaccines to western North Carolina for months.
She’s signed up the community health center she operates in Asheville to receive and distribute the doses. She’s ordered a subzero freezer to store the Pfizer-BioNTech vaccine and transport it to rural counties. She’s also allocated her staff between covid testing sites and vaccine clinics.
But those logistics make up only half the equation, said Wagenaar, CEO of Western North Carolina Community Health Services.
Because the vaccines have a limited shelf life, “you want to make sure you’re ordering what you think you’ll be able to give,” she said. “That’s where messaging comes in.”
While many of the health center’s patients are eager to get their shots, Wagenaar said, she’s worried about other populations in the region — from communities of color to migrant farmworkers and people who live on the street — who may be reluctant to be vaccinated, even though they are more likely to contract the virus.
“It’s so important in this time to go beyond our normal education to reach more communities,” she said.
The concerns arising in western North Carolina, a region tucked between Asheville to the east and the Appalachian Mountains to the west, provide a window into the challenges facing health workers across the country. Not only do they have to transport the vaccine to vulnerable populations, but they also must address those individuals’ concerns and encourage them to take the shots.
Now, a host of grassroots organizations in western North Carolina are taking to the streets, to WhatsApp chats and to Zoom lunches to close that gap.
‘You Can Be a Community Hero’
When Adrienne Sigmon talks to people living on the street in Asheville about covid vaccines, she doesn’t suggest the medical system is trying to help them.
As someone who was unsheltered for two years, she knows mistrust of health workers runs deep. Many people who are homeless receive poor care or no care at all.
Instead, Sigmon frames the vaccine as an opportunity to help society. “By getting vaccinated, you can be a community hero,” she tells them.
“Giving people that ownership and sense that they can help in this small way is empowering,” she said.
That’s how Sigmon felt four years ago when she joined the street medic team at BeLoved Asheville, a nonprofit that tackles issues like homelessness and hunger. The team trains people who are currently or formerly unsheltered in basic medical skills, from first aid to wound care and overdose prevention.
“Instead of other people coming in to say, ‘I’m going to fix you and serve you,’ we learn to take care of ourselves and the community,” said Sigmon, who is now a lead street medic.
On Mondays and Thursdays, Sigmon and her team travel through downtown Asheville and the rural corners of Buncombe County to hand out lifesaving supplies like insulated tents, sleeping bags, thermal socks, face masks and hand sanitizer to those living outdoors. Now they also pass out flyers about the vaccines and ask people if they’ll pledge to get their shots.
Some refuse, Sigmon said. They may suffer from mental illness, not believe covid is real or not care if they get sick.
But more often, people have questions: Will I get sick if I get a vaccine? Is it safe, since it came out so quickly?
Sigmon assures them that the vaccines don’t contain the coronavirus and that, although the development process was quick, it built on a decade of research.
Of the hundreds of people Sigmon and her team have spoken with, about 75% have agreed to be vaccinated.
‘Think About Your Older Roommates’
Migrant farmworkers begin arriving in western North Carolina in February, when they work in greenhouses, and stay through the fall or early winter, harvesting crops and Christmas trees.
This past year, conversations about covid vaccines began in July, said Jessica Rodriguez, outreach coordinator for Vecinos Farmworker Health Program, which provides medical services to about 500 migrant workers in the region.
At the time, covid outbreaks across two farms sickened nearly 100 men. “When will this be over?” the workers asked her.
Since then, Rodriguez and her team have been updating the farmworkers about the vaccines.
Men in their 50s and 60s have generally been eager, Rodriguez said. But the younger workers, some just 18 years old, have been hesitant. They’ve received conflicting messages about the seriousness of the virus from family back home, and sometimes from their home countries’ governments.
“Think about your older roommates,” Rodriguez tells them in Spanish. The workers live in tight quarters, often old converted hotels tucked behind a main road or cabins perched on the side of a mountain, with anywhere from five to 50 men together.
“You could get covid and feel nothing at all,” Rodriguez said, “but if you pass it to someone who is older or has diabetes, he could end up in the hospital.”
Rodriguez also posts fact sheets in Spanish on her WhatsApp story, where anyone with her phone number can view them. That’s been particularly popular, she said. Since the workers’ schedules rarely allow them to check for health advisories from the White House or watch the state health secretary’s afternoon telecasts, updates from Rodriguez and her team have been crucial. Even workers she met a few years ago who now live in other countries have messaged her to say thanks for the information on WhatsApp.
Her team also provides in-person education at the camps, where they often bring food and medical supplies.
“As soon as we’d arrive, the whole crew would come out,” she said. “Some of our covid education sessions went up to an hour because the guys had so many questions.”
‘You All Are My Ambassadors’
Kathey Avery, a community health nurse, has been hosting monthly lunch-and-learn meetings for a group of 14 women for nearly a decade.
The youngest attendee is in her 50s, and the oldest is 94. Most are Black women who go to church, volunteer in the community and are in regular contact with their extended families, said Avery, who also co-chairs the Institute for Prevention and Healthcare Advocacy, a grassroots organization that addresses health disparities in Buncombe County.
“Whenever I need to get information out, I tell them, ‘You all are my ambassadors,’” said Avery, who is Black too. “That always makes them smile.”
In the past, Avery talked to them about topics like chronic disease and nutrition. During the pandemic, she’s moved the lunch-and-learns to Zoom and talks about covid symptoms, testing and, now, vaccines.
Black people’s history of mistreatment in the U.S. makes the vaccines a tough sell, Avery said. Many worry about a repeat of the infamous Tuskegee trial, in which Black patients with syphilis were purposely left untreated. Others point to the brutal response to Black Lives Matter protests and efforts to suppress Black votes.
That’s why education about the vaccines has to come from a place they trust, Avery said.
She tries to keep it simple, using a one-page document she created with answers to questions like “What is the definition of ‘vaccine’?” and “What is the definition of ‘virus’?”
It’s a matter of homing in on a couple of points and relating it to “something you know they already know,” Avery said.
Then you build on that knowledge in a second conversation, and a third and fourth.
“If you’re not talking to people and building trust over time,” Avery said, “they won’t listen.”
Alcoholism-related liver disease was a growing problem even before the pandemic, with 15 million people diagnosed with the condition around the country, and with hospitalizations doubling over the past decade.
This article was published on Wednesday, February 10, 2021 in Kaiser Health News.
As the pandemic sends thousands of recovering alcoholics into relapse, hospitals across the country have reported dramatic increases in alcohol-related admissions for critical diseases like alcoholic hepatitis and liver failure.
But the pandemic has dramatically added to the toll. Although national figures are not available, admissions for alcoholic liver disease at Keck Hospital of the University of Southern California were up 30% in 2020 compared with 2019, said Dr. Brian Lee, a transplant hepatologist who treats the condition in alcoholics. Specialists at hospitals affiliated with the University of Michigan, Northwestern University, Harvard University and Mount Sinai Health System in New York City said rates of admissions for alcoholic liver disease have leapt by up to 50% since March.
High levels of alcohol ingestion lead to a constellation of liver diseases due to toxic byproducts associated with the metabolism of ethanol. In the short term, these byproducts can trigger extensive inflammation that leads to hepatitis. In the long term, they can lead to the accumulation of fatty tissue, as well as the scarring characteristic of cirrhosis — which can, in turn, cause liver cancer.
Since the metabolism of alcohol varies among individuals, these diseases can show up after only a few months of heavy drinking. Some people can drink heavily without experiencing side effects for a long time; others can suffer severe immune reactions that rapidly send them to the hospital.
Leading liver disease specialists and psychiatrists believe the isolation, unemployment and hopelessness associated with covid-19 are driving the explosion in cases.
"There's been a tremendous influx," said Dr. Haripriya Maddur, a hepatologist at Northwestern Medicine. Many of her patients "were doing just fine" before the pandemic, having avoided relapse for years. But subject to the stress of the pandemic, "all of a sudden, [they] were in the hospital again."
Across these institutions, the age of patients hospitalized for alcoholic liver disease has dropped. A trend toward increased disease in people under 40 "has been alarming for years," said Dr. Raymond Chung, a hepatologist at Harvard University and president of the American Association for the Study of Liver Disease. "But what we're seeing now is truly dramatic."
Maddur has also treated numerous young adults hospitalized with the jaundice and abdominal distension emblematic of the disease — a pattern she attributes to the pandemic-era intensification of economic struggles faced by the demographic. At the same time these young adults may be entering the housing market or starting a family, entry-level employment, particularly in the vast, crippled hospitality industry, is increasingly hard to come by. "They have mouths to feed and bills to pay, but no job," she said, "so they turn to booze as the last coping mechanism remaining."
Women may be suffering disproportionately from alcoholic liver disease during the pandemic because they metabolize alcohol at slower rates than men. Lower levels of the enzyme responsible for degrading ethanol leads to higher levels of the toxin in the blood and, in turn, more extensive organ damage in women than in men who drink the same amount. (The CDC recommends that women have one drink or less per day, compared with two or fewer for men.)
Socially, the "stress of the pandemic has, in some ways, particularly targeted women," said Dr. Jessica Mellinger, a hepatologist at the University of Michigan. Lower wages, less job stability and the burdens of parenting tend to fall more heavily on women's shoulders, she said.
"If you have all of these additional stressors, with all of your forms of support gone — and all you have left is the bottle — that's what you'll resort to," Mellinger said. "But a woman who drinks like a man gets sicker faster."
Nationwide, more adults are turning to the bottle during the pandemic: One study found rates of alcohol consumption in spring 2020 were up 14% compared with the same period in 2019 and drinkers consumed nearly 30% more than in pre-pandemic months. Unemployment, isolation, lack of daily structure and boredom all have increased the risk of heightened alcohol use.
"The pandemic has brought out our uneasy relationship with alcohol," said Dr. Timothy Fong, an addiction psychiatrist at UCLA. "We've welcomed it into our homes as our crutch and our best friend."
These relapses, and the hospitalizations they cause, can be life-threatening. More than 1 in 20 patients with alcohol-related liver failure die before leaving the hospital, and alcohol-related liver disease is the leading cause for transplantation.
The disease also makes people more susceptible to covid: Patients with liver disease die of covid at rates three times higher than those without it, and alcohol-associated liver disease has been found to increase the risk of death from covid by an additional 79% to 142%.
Some physicians, like Maddur, are concerned the stressors leading to increased alcohol consumption and liver disease may stretch well into the future — even after lockdowns lift. "I think we're only on the cusp of this," she said. "Quarantine is one thing, but the downturn of the economy, that's not going away anytime soon."
Others, like Lee, are more optimistic — albeit cautiously. "The vaccine is coming to a pharmacy near you, covid-19 will end, and things will begin to get back to normal," he said. "But the real question is whether public health authorities decide to act in ways that combat [alcoholic liver disease].
"Because people are just fighting to cope day to day right now."
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.
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.
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.”
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.
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."