Martha Gallagher, a 75-year-old retired school nurse, wanted to volunteer for the Delaware Medical Reserve Corps to administer COVID-19 vaccines.
She knew Delaware might need more vaccinators and thought, "Why not do something to help get the vaccine out?" Plus, Gallagher figured, it would be a good way for her to get vaccinated, too.
When the Ocean View resident initially filled out the paperwork for the program, run through the Delaware Division of Public Health, she said she was told she could get a vaccine as a volunteer. But then, after she turned in her paperwork, a medical reserve program coordinator said that wasn't the case.
Gallagher was surprised. "You want me at 75 to give vaccines, but I won't be able to get a vaccine?" she said.
The Delaware Division of Public Health said in a statement the agency "cannot guarantee vaccine to volunteers based on available supply at each event. Many volunteers have been able to receive vaccines if there have been doses remaining at the end of an event in order to utilize every single dose to avoid waste."
That was just one of many dead ends Gallagher encountered before she successfully got the coveted shot.
Gallagher launched her crusade on Jan. 20, when Delaware started vaccinating residents 65 and older and front-line essential workers.
She registered on the state's website and got a reply that when an event opened, she would be sent a notice to make a vaccine appointment. Gallagher never got any notification from the state. A couple of weeks later, she registered again but heard nothing. She then called the state's help line and was told the state had no vaccines and to check with commercial pharmacies.
The thing is, Gallagher had done that too.
She had made multiple phone calls and tried to make online appointments with Rite Aid, Walgreens, Walmart and Giant grocery stores.
No matter what nearby Delaware ZIP code Gallagher entered into the online form, the pharmacy websites gave her the same rejection message. "The only response I would get is 'There are no vaccines within 25 miles,'" she said.
"So, basically, it's an utter mess and I don't know when they're ever going to get this straightened out," said Gallagher in a Feb. 11 phone call.
She had even gone the extra mile. Gallagher became friendly with one Walmart pharmacist in her area, and he said he put her name on a list and would call her if he got a dose he could give. But he said if he called, she would have to "come down right away." Still, her phone never rang.
Gallagher's four daughters also tried to help their mom get appointments.
In early February, Gallagher started stalking the Walgreens website every hour to check for appointments. Finally, she saw something available for March 9 at 11 a.m.
"But, then, when I clicked on it the whole bloody site disappeared," said Gallagher. She couldn't get back on the webpage again. "It's like peeling my face on a daily basis," she exclaimed.
Finally, on Feb. 12, Gallagher reported to KHN that she had a change in luck.
"I got it!" she said in a phone call. "It's kind of a long story."
Back in January, when Gallagher's age group became eligible for the vaccine, she thought she had made an appointment at a Rite Aid in another town. That appointment was scheduled for Feb. 11. But she never received verification or confirmation from the pharmacy.
Fed up with everything else she had tried, Gallagher decided when that day came to drive the 40 minutes to the Rite Aid. If she wasn't booked, perhaps she could snag a shot because it had recently snowed and she thought maybe someone would have canceled an appointment.
"So, I went all that way, and then they said, 'Well if you didn't get a reply, then your name isn't on a list,'" said Gallagher. "And then I went on a long rant about what I had been through trying to get a vaccine."
One pharmacy staffer told Gallagher she would go back and look at the appointment list. The staff member came back and said the inclement weather did indeed cause a cancellation, but Gallagher would have to wait about an hour before her turn.
After 23 nonstop days of searching, Gallagher said, yes, she could certainly wait one more hour.
Now that the coronavirus has been in the United States for roughly a year, new numbers are revealing the scale of COVID-19's impact on American health: COVID has become the country's third-leading cause of death, and could be on its way to outpacing cancer.
"The toll of death is simply staggering — worse than I would have predicted," said Arthur Caplan, founding head of the division of medical ethics at the New York University School of Medicine. "COVID has been nothing short of the worst failure of public policy in modern memory."
With a year's worth of data, it's possible to look more precisely at how the coronavirus compares with the more routine causes of death in the U.S.
The takeaway is that the coronavirus killed more Americans in the past year than any cause of death in 2019, other than heart disease and cancer. And if the University of Washington model proves accurate, then by June, the 15-month toll from the coronavirus will be close to matching the annual number of deaths from cancer.
All other causes of death pale in comparison to the coronavirus death toll. So far, the coronavirus has killed roughly three times as many people as accidents, lung ailments, stroke or Alzheimer's disease did in 2019. And the coronavirus has outpaced the number of deaths from diabetes, kidney disease, pneumonia and suicide by even larger multiples.
Caution is warranted when comparing these causes of death. Most of the 10 leading causes of death are not primarily driven by infections, whereas the coronavirus is. So it's hard to imagine a scenario in which any of the other causes could spike the way coronavirus did.
Another way to look at the toll of the coronavirus pandemic is by considering "excess deaths," a statistic tracked by the CDC. This data takes the number of actual deaths in a given period and subtracts the average number of deaths from all causes during the comparable period in recent years.
The CDC data shows how excess deaths have risen with spikes in COVID infections. In some weeks over the past year, there were as many as 22,000 excess deaths.
The weekly excess deaths add up to 559,887 additional deaths since the pandemic began.
That's a bit higher than the 502,005 coronavirus deaths officially recorded. However, the additional 58,000 deaths could reflect a combination of coronavirus deaths that didn't get recorded as such; deaths caused by people unwilling or unable to go to the hospital for other serious illnesses during the pandemic; or from overdoses or suicides stemming from increased social isolation during the pandemic. (Because of reporting lags, the death certificates used to determine excess deaths tend to understate recent weeks' totals and are expected to increase in future weeks as more data rolls in.)
"There is nothing like these abstract statistics to illustrate the 'psychic numbing' we experience when dealing with large-scale loss of life," said David Ropeik, author of the book "How Risky Is it, Really? Why Our Fears Don't Always Match the Facts."
"It's unlikely that, as stark as these figures are, that they will evoke nearly as much emotion as the personal story of any one of these victims," Ropeik said. "A risk depicted as a face, or a name — that is, 'personified' — is one we can imagine happening to ourselves. Statistics are inhuman and far less moving."
In January, as Mississippi health officials planned for their incoming shipments of COVID-19 vaccine, they assessed the state's most vulnerable: healthcare workers, of course, and elderly people in nursing homes. But among those who needed urgent protection from the virus ripping across the Magnolia State were 1 million Mississippians with obesity.
Obesity and weight-related illnesses have been deadly liabilities in the COVID era. A report released this month by the World Obesity Federation found that increased body weight is the second-greatest predictor of COVID-related hospitalization and death across the globe, trailing only old age as a risk factor.
As a fixture of life in the American South — home to nine of the nation's 12 heaviest states — obesity is playing a role not only in COVID outcomes, but in the calculus of the vaccination rollout. Mississippi was one of the first states to add a body mass index of 30 or more (a rough gauge of obesity tied to height and weight) to the list of qualifying medical conditions for a shot. About 40% of the state's adults meet that definition, according to federal health survey data, and combined with the risk group already eligible for vaccination — residents 65 and older — that means fully half of Mississippi's adults are entitled to vie for a restricted allotment of shots.
At least 29 states have greenlighted obesity for inclusion in the first phases of the vaccine rollout, according to KFF — a vast widening of eligibility that has the potential to overwhelm government efforts and heighten competition for scarce doses.
"We have a lifesaving intervention, and we don't have enough of it," said Jen Kates, director of global health and HIV policy for KFF. "Hard choices are being made about who should go first, and there is no right answer."
The sheer prevalence of obesity in the nation — 2 in 3 Americans exceed what is considered a healthy weight — was a public health concern well before the pandemic. But COVID-19 dramatically fast-tracked the discussion from warnings about the long-term damage excess fat tissue can pose to heart, lung and metabolic functions to far more immediate threats.
In the United Kingdom, for example, overweight COVID patients were 67% more likely to require intensive care, and obese patients three times likelier, according to the World Obesity Federation report. A Centers for Disease Control and Prevention study released Monday found a similar trend among U.S. patients and noted that the risk of COVID-related hospitalization, ventilation and death increased with patients' obesity level.
The counties that hug the southern Mississippi River are home to some of the most concentrated pockets of extreme obesity in the United States. Coronavirus infections began surging in Southern states early last summer, and hospitalizations rose in step.
Deaths in rural stretches of Mississippi, Tennessee, Louisiana and Arkansas have been overshadowed by the sheer number of deaths in metropolitan areas like New York City, Los Angeles and Essex County, New Jersey. But as a share of the population, the coronavirus has been similarly unsparing in many Southern communities. In sparsely populated Claiborne County, Mississippi, on the floodplains of the Mississippi River, 30 residents — about 1 in 300 — had died as of early March. In East Feliciana Parish, Louisiana, north of Baton Rouge, with 106 deaths, about 1 in 180 had died by then.
"It's just math. If the population is more obese and obesity clearly contributes to worse outcomes, then neighborhoods, cities, states and countries that are more obese will have a greater toll from COVID," said Dr. James de Lemos, a professor of internal medicine at UT Southwestern Medical Center in Dallas who led a study of hospitalized COVID patients published in the medical journal Circulation.
And, because in the U.S. obesity rates tend to be relatively high among African Americans and Latinos who are poor, with diminished access to healthcare, "it's a triple whammy," de Lemos said. "All these things intersect."
Poverty and limited access to medical care are common features in the South, where residents like Michelle Antonyshyn, a former registered nurse and mother of seven in Salem, Arkansas, say they are afraid of the virus. Antonyshyn, 49, has obesity and debilitating pain in her knees and back, though she does not have high blood pressure or diabetes, two underlying conditions that federal health officials have determined are added risk factors for severe cases of COVID-19.
Still, she said, she "was very concerned just knowing that being obese puts you more at risk for bad outcomes such as being on a ventilator and death." As a precaution, Antonyshyn said, she and her large brood locked down early and stopped attending church services in person, watching online instead.
"It's not the same as having fellowship, but the risk for me was enough," said Antonyshyn.
Governors throughout the South seem to recognize that weight can contribute to COVID-19 complications and have pushed for vaccine eligibility rules that prioritize obesity. But on the ground, local health officials are girding for having to tell newly eligible people who qualify as obese that there aren't enough shots to go around.
In Port Gibson, Mississippi, Dr. Mheja Williams, medical director of the Claiborne County Family Health Center, has been receiving barely enough doses to inoculate the health workers and oldest seniors in her county of 9,600. One week in early February, she received 100 doses.
Obesity and extreme obesity are endemic in Claiborne County, and health officials say the "normalization" of obesity means people often don't register their weight as a risk factor, whether for COVID or other health issues. The risks are exacerbated by a general flouting of pandemic etiquette: Williams said that middle-aged and younger residents are not especially vigilant about physical distancing and that mask use is rare.
The rise of obesity in the U.S. is well documented over the past half-century, as the nation turned from a diet of fruits, vegetables and limited meats to one laden with ultra-processed foods and rich with salt, fat, sugar and flavorings, along with copious amounts of meat, fast food and soda. The U.S. has generally led the global obesity race, setting records as even toddlers and young children grew implausibly, dangerously overweight.
Well before COVID, obesity was a leading cause of preventable death in the U.S. The National Institutes of Health declared it a disease in 1998, one that fosters heart disease, stroke, Type 2 diabetes and breast, colon and other cancers.
Researchers say it is no coincidence that nations like the U.S., the U.K. and Italy, with relatively high obesity rates, have proved particularly vulnerable to the novel coronavirus.
They believe the virus may exploit underlying metabolic and physiological impairments that often exist in concert with obesity. Extra fat can lead to a cascade of metabolic disruptions, chronic systemic inflammation and hormonal dysregulation that may thwart the body's response to infection.
Other respiratory viruses, like influenza and SARS, which appeared in China in 2002, rely on cholesterol to spread enveloped RNA virus to neighboring cells, and researchers have proposed that a similar mechanism may play a role in the spread of the novel coronavirus.
There are also practical problems for coronavirus patients with obesity admitted to the hospital. They can be more difficult to intubate due to excess central weight pressing down on the diaphragm, making breathing with infected lungs even more difficult.
Physicians who specialize in treating patients with obesity say public health officials need to be more forthright and urgent in their messaging, telegraphing the risks of this COVID era.
"It should be explicit and direct," said Dr. Fatima Stanford, an obesity medicine specialist at Massachusetts General Hospital and a Harvard Medical School instructor.
Stanford denounces the fat-shaming and bullying that people with obesity often experience. But telling patients — and the public — that obesity increases the risk of hospitalization and death is crucial, she said.
"I don't think it's stigmatizing," she said. "If you tell them in that way, it's not to scare you, it's just giving information. Sometimes people are just unaware."
Vaccine hesitancy experts say the concerns some people have about the covid vaccines are not identical to those around childhood vaccines, so pockets of childhood vaccine refusal may not correspond to covid vaccine-hesitant pockets.
Polls show Americans are increasingly interested in getting vaccinated against covid-19, but such surveys are largely national, leaving a big question: When the vaccines become available to the general public, will enough people get it in your county, city or neighborhood to keep your community safe?
Data on childhood vaccines, such as the one that protects against measles, mumps and rubella, provide hints. They show that the collective protection known as herd immunity can break down in pockets where not enough people choose to be immunized. Experts say at least92% of the population must be vaccinated against measles to prevent it from spreading.
In the 2019-20 school year, for example, fewer than 5% of kindergartners in Colorado had an exemption from the MMR vaccine, a KHN analysis found. But the exemptions were not evenly distributed in the state: In schools with complete data, at least 15% had enough kindergartners with nonmedical exemptions — religious or personal — to leave them vulnerable to measles outbreaks.
Does childhood immunization data show us which communities will shun the covid vaccines? Maybe yes, maybe no. Vaccine hesitancy experts say the concerns some people have about the covid vaccines are not identical to those around childhood vaccines. So pockets of childhood vaccine refusal may not correspond to covid vaccine-hesitant pockets.
“The Venn diagram will have some overlap, but it wouldn’t tell us the whole story,” said Saad Omer, a vaccine researcher and infectious disease epidemiologist who directs the Yale Institute for Global Health. “It's not the same circle.”
Experts like Omer are worried, however, that the political divisions that arose during the pandemic, and are evident in attitudes toward the covid vaccines, could spread to other vaccination campaigns. Some of the same coalitions that, in recent years, fought expansion of childhood vaccination requirements in state legislatures around the country joined to fight covid lockdowns.
School immunization rates can shed light on how pockets of vaccine uncertainty work. Colorado is one of 15 states, according to the National Conference of State Legislatures, where parents can opt their children out of vaccines required for school entry for philosophical reasons. It stands to reason that, in those states, school immunization rates may provide a more unfiltered look at vaccine refusal than in others.
Research shows childhood immunization exemption rates tend to remain relatively stable within schools over time, according to Daniel Salmon, who directs the Institute for Vaccine Safety at the Johns Hopkins Bloomberg School of Public Health. A KHN analysis found that in Utah and Idaho, which have a decade of school-level MMR data, most schools with complete data had the same herd immunity status in 2018 as in 2009.
Such trends might be somewhat predictive of how covid vaccines will be accepted, because once a community resists vaccination it’s hard to undo.
But this measles immunization data doesn’t measure vaccine hesitancy — it measures “actual refusal,” said Salmon. He also noted that childhood vaccines are much more easily accessible than covid vaccines, so school immunization patterns won’t reflect the potentially large number of people who forgo the covid vaccines because they’re just too hard to get.
Also, school immunization exemption figures capture the opinion only of parents of school-age kids, who may not be representative of the general population.
And there’s another, more basic issue: Vaccine hesitancy is not monolithic, regardless of which vaccine or population you’re talking about.
“I saw families that give certain vaccines to one child and other vaccines to a different child based on their perceptions of necessity,” said Jennifer Reich, a sociologist with the University of Colorado-Denver who studied vaccine acceptance. "I could see a family deciding that they want to delay childhood vaccines, but they think the covid vaccine is really important for their grandmother."
Omer said only a tiny fraction of very vocal people oppose all vaccines.
“There’s a group of people who are gonna refuse the vaccine no matter what,” he said. “Even if you put mom and apple pie in a shot, they would refuse the vaccine.”
A somewhat larger segment of parents will refuse one or more — but not all — vaccines for their children. And then there’s a much larger group that expresses hesitation about vaccination but ultimately accepts it.
Outright refusers are likely to make up a small part of the very broad group of adults who hesitate to get a covid vaccine, too, Omer said. Many people are sitting on the fence and may still opt to be vaccinated.
Polls from KFF and the Pew Research Center show Americans’ opinions have shifted over the past few months, with a growing share saying either that they want to get a vaccine “as soon as possible” or that they’ve already gotten one. (KHN is an editorially independent program of KFF.)
Interestingly, despite lots of coverage about vaccine concerns among racial and ethnic minorities, the latest KFF numbers show a nearly equal share of white and Black respondents — 15% and 14%, respectively — said they would “definitely not” get the vaccine.
Such polls also highlight another difference between childhood vaccines and the covid vaccines: how political covid vaccines have become.
“So far, childhood vaccines have been a bipartisan issue, more or less,” said Omer. “Every few months, there’s a debate on Twitter about whether it’s a conservative issue or a liberal issue, or if it’s the crunchy granola crowd or the libertarian crowd that is driving it. It’s all of the above.”
Indeed, Colorado schools that lacked herd immunity against the measles in 2019 because of high rates of nonmedical exemptions are a motley crew, spanning everything from a private religious school in the state’s rural southwest to a private Waldorf school in affluent Boulder and a public high school in the Rockies.
Still, vaccination skepticism has trended Republican in recent years as mistrust of scientific authority has grown in the party. Following the measles outbreaks that sprang up across the United States in 2019, GOP legislators in several states opposed Democrat-led efforts to tighten vaccine exemption laws — a harbinger of GOP-led protests against lockdowns during the pandemic.
And attitudes toward covid vaccination largely fall along party lines. As the KFF survey shows, the percentage of Democrats who said they wanted to get the shots as soon as possible (or had already gotten them) rose 28 points between December and February. The percentage rose 13 points among Republican respondents.
An increasingly politicized covid vaccine landscape could threaten acceptance of other vaccines. Kristin Lunz Trujillo, a political scientist at Carleton College in Minnesota, said the pandemic teed up a situation in which vaccines could become a partisan issue.
“We've seen with the covid vaccine, more so than any vaccine previously, the politicization that's occurring,” she said.
And as Omer put it, when something leaves the realm of opinion and enters partisan identity, it calcifies.
“You become less persuadable — even in the face of a lot of evidence,” he said. “With masks and the current debates around lockdowns, etc., if vaccines get folded in as part of that level of political identity, or a sense of yourself or your ideological brand, then we are in deep trouble.”
Dr. Peter Hotez, a professor at Baylor College of Medicine in Houston, has watched the anti-vaccine campaign grow from a fringe movement in the early 2000s. It accelerated in 2015, when it linked to the political extreme on the right under a banner of “health freedom,” he said.
“Covid-19, actually, somewhat paradoxically made things worse in terms of energizing the anti-vaccine movement,” he said. “It’s now a full-on anti-science empire.”
On the other hand, said Reich, covid vaccines may create opportunities to improve the conversation around vaccines in general. Previously, she said, vaccine messaging tended to be one-way: billboards, brochures, public service announcements. Now, state and local governments are engaging much more with stakeholders and community leaders.
“This moment is creating an awareness that communication that is successful has to be two-directional,” she said. “That's an overdue change.”
People have questions about what are, as Reich pointed out, vaccines that remain unlicensed. Engaging them in conversations, rather than dismissing them as victims of misinformation or conspiracy theories, could increase childhood vaccine use, too, she said.
HOUSTON — When the big, red and extremely loud fire alarm went off in Maria Skladzien's apartment, the 74-year-old ventured into the hallway with fellow residents of her Houston-area senior living community. The brutal winter storm that swept through Texas had knocked out power, which, in turn, disrupted water to the four-story building. The blaring alarms raised fears of fire.
The building's elevators were unusable without power. Dependent on her wheelchair, Skladzien went back inside her second-floor apartment. She watched as residents gathered in the subfreezing temperatures outside, wondering if she would have to "throw herself out the window" to survive.
"It's a very uneasy feeling," she said, sitting in the living room of her small apartment a week later, packages of water brought by friends and volunteers tucked against walls and sitting on tables. No fire had occurred, but her fears continued because the elevators were still not functioning. "So many crazy things race through your mind in a situation like this."
Winter storm Uri brought power failure and burst water pipes to millions of homes and businesses throughout Texas. But the impact, as is often the case in emergencies, was most profound on the state's most vulnerable — including residents of senior living facilities.
Of the state's 1,200 nursing facilities, about 50% lost power or had burst pipes or water issues, and 23 had to be evacuated, said Patty Ducayet, long-term care ombudsman for Texas. Of 2,000 assisted living facilities, about 25% had storm-related issues and 47 were evacuated. Some facilities reported building temperatures in the 50s.
The federal government requires nursing homes to maintain safe ambient temperatures but does not stipulate how and does not require generators or other alternative energy sources to run heating and air conditioning systems. States can implement more stringent guidelines, but, to date, Texas has not. Several bills were introduced in the Texas legislature after Uri to do just that, said Ducayet.
Uri was the latest disaster to highlight an ongoing problem. Evacuations and nursing home deaths in Hurricane Katrina in 2005 led to calls for similar protections. In 2009, Hurricane Sandy forced the evacuation of more than 4,000 nursing home residents in New York when backup power systems failed and emergency plans buckled. And calls for stricter rules were renewed when Hurricane Irma tore into Florida in 2017 and left a dozen residents dead in a nursing home that lost air conditioning. Multiple blackouts and wildfires in California also have exposed lax adherence to federal requirements for backup power at skilled nursing facilities, as well as weak state enforcement of those rules, according to a 2019 report from the U.S. Department of Health and Human Services.
"Every time we come back around with a new disaster, you see that these facilities still aren't as prepared as, maybe, they can or should be," said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, an advocacy organization based in Washington, D.C. "And many of them still aren't following the requirements that are in place. So it's like: What's it going to take to actually get the plans in place and to get enforcement of those plans?"
In November 2016, the Centers for Medicare & Medicaid Services implemented a slate of new regulations, including rules on disaster planning and emergency backup power in the nation's nursing homes.
A month later, Mark Parkinson, president and CEO of the long-term care industry's trade group, the American Healthcare Association and National Center for Assisted Living, sent a letter to then-President-elect Donald Trump requesting new rules because the regulations were burdensome and financially onerous, according to reporting by ProPublica.
In 2019, CMS published final rules with revised emergency preparedness guidance, agency spokesperson William Polglase said, after feedback from the public that those requirements were "overly burdensome and duplicative." But, he added, the rules require such facilities to have emergency and standby power systems and emergency plans. "We did not remove or modify any requirements that would endanger patient health or safety," he said.
Advocates for older adults, however, decried the changes as watering down the protections.
"The facilities push back because of the expense, but what I think recent years have shown us is that we're not talking about once-in-a-century type of disasters," said Eric Carlson, directing attorney with Justice in Aging, a national legal advocacy nonprofit.
But it's not just nursing homes at risk.
Cristina Crawford, an AHCA spokesperson, said prioritizing long-term care facilities at all levels is important in emergencies. "Nursing homes and assisted living facilities should be prioritized for power restoration and supplies for resource delivery in emergency situations," she said. "Long-term care facilities should also be included in community-based exercises to help ensure successful coordination in actual emergencies."
Although nursing homes face federal oversight, the licensing and regulatory authority for assisted and senior independent living facilities lies with the states, meaning a patchwork of definitions and guidelines for the facilities. Given that assisted and independent living communities have been the fastest-growing sector in senior living for many years, the disparate definitions and rules often leave residents and their families without a clear understanding of a facility's offerings and safety guardrails.
"There's no transparency from a consumer perspective about what are these different options, what am I getting in each of them," said David Grabowski, professor of healthcare policy at Harvard Medical School.
Years ago, Grabowski and others said, independent and assisted living facilities were filled with a generally healthier population who didn't need much medical assistance and who could afford to pay out-of-pocket for enhanced lifestyle amenities such as restaurants or outings.
But as the population ages, residents are often less healthy and may not have the financial resources to afford the higher level of care they need. And unlike nursing homes, assisted and independent living facilities do not necessarily operate under regulations that require building codes to address the needs of elderly or disabled residents, or requirements for backup power or emergency systems. It depends on where they are.
In Texas, assisted living facilities are required to have emergency plans but not generators. The legislation introduced in the wake of winter storm Uri seeks to change that. Independent living facilities like the one Skladzien lives in might not be covered, though; they already have even fewer state guidelines to follow.
"We still don't have good emergency management planning and preparation ingrained within the regulations to make sure our loved ones are safe within these facilities, because it just comes down to the money," said Brian Lee, executive director of Families for Better Care, a nonprofit in Austin, Texas, focused on the nation's long-term care facilities.
The debate is analogous to previous efforts to require sprinkler systems in nursing homes, he said. "How many more people have to be injured, maybe even have to have suffered death, because of power failure negligence?"
Lee and others said there is a distinction to be made between staff members — some of whom stayed in their facilities throughout the winter storm to keep residents safe — and industry forces resisting regulatory efforts to beef up backup safety systems.
"We can't, and shouldn't, let the industry decide how this is going to work," said Ducayet. "There needs to be involvement and organization at government levels, so that there is clarity and information about how these different settings work."
With elevators still not working at Skladzien's independent living building a week after the storm, she was trying to figure out how she would get to her weekly post-cancer medical treatment.
Skladzien, who owned her own cleaning business for 25 years and drove a school bus for 15 years, moved into senior housing in 2019 when she could no longer handle the upkeep on her home. When she was looking for a place to live, though, it never occurred to her that apartments marketed toward older adults would not have a generator or plans to help residents in an emergency. And she never thought to ask.
"I had no experience," she said.
It may not have mattered: Medical bills had depleted her savings, leaving her only the choice of what was available in low-income housing. In her building, she was told, wheelchair-accessible apartments on the first floor were beyond her financial reach.
Data on childhood vaccines show that the collective protection known as herd immunity can break down in pockets where not enough people choose to be immunized.
This article was published on Wednesday, March 10, 2021 in Kaiser Health News.
Polls show Americans are increasingly interested in getting vaccinated against COVID-19, but such surveys are largely national, leaving a big question: When the vaccines become available to the general public, will enough people get it in your county, city or neighborhood to keep your community safe?
Data on childhood vaccines, such as the one that protects against measles, mumps and rubella, provide hints. They show that the collective protection known as herd immunity can break down in pockets where not enough people choose to be immunized. Experts say at least92% of the population must be vaccinated against measles to prevent it from spreading.
In the 2019-20 school year, for example, fewer than 5% of kindergartners in Colorado had an exemption from the MMR vaccine, a KHN analysis found. But the exemptions were not evenly distributed in the state: In schools with complete data, at least 15% had enough kindergartners with nonmedical exemptions — religious or personal — to leave them vulnerable to measles outbreaks.
Does childhood immunization data show us which communities will shun the COVID vaccines? Maybe yes, maybe no. Vaccine hesitancy experts say the concerns some people have about the COVID vaccines are not identical to those around childhood vaccines. So pockets of childhood vaccine refusal may not correspond to COVID vaccine-hesitant pockets.
"The Venn diagram will have some overlap, but it wouldn't tell us the whole story," said Saad Omer, a vaccine researcher and infectious disease epidemiologist who directs the Yale Institute for Global Health. "It's not the same circle."
Experts like Omer are worried, however, that the political divisions that arose during the pandemic, and are evident in attitudes toward the COVID vaccines, could spread to other vaccination campaigns. Some of the same coalitions that, in recent years, fought expansion of childhood vaccination requirements in state legislatures around the country joined to fight COVID lockdowns.
School immunization rates can shed light on how pockets of vaccine uncertainty work. Colorado is one of 15 states, according to the National Conference of State Legislatures, where parents can opt their children out of vaccines required for school entry for philosophical reasons. It stands to reason that, in those states, school immunization rates may provide a more unfiltered look at vaccine refusal than in others.
Research shows childhood immunization exemption rates tend to remain relatively stable within schools over time, according to Daniel Salmon, who directs the Institute for Vaccine Safety at the Johns Hopkins Bloomberg School of Public Health. A KHN analysis found that in Utah and Idaho, which have a decade of school-level MMR data, most schools with complete data had the same herd immunity status in 2018 as in 2009.
Such trends might be somewhat predictive of how COVID vaccines will be accepted, because once a community resists vaccination it's hard to undo.
But this measles immunization data doesn't measure vaccine hesitancy — it measures "actual refusal," said Salmon. He also noted that childhood vaccines are much more easily accessible than COVID vaccines, so school immunization patterns won't reflect the potentially large number of people who forgo the COVID vaccines because they're just too hard to get.
Also, school immunization exemption figures capture the opinion only of parents of school-age kids, who may not be representative of the general population.
And there's another, more basic issue: Vaccine hesitancy is not monolithic, regardless of which vaccine or population you're talking about.
"I saw families that give certain vaccines to one child and other vaccines to a different child based on their perceptions of necessity," said Jennifer Reich, a sociologist with the University of Colorado-Denver who studied vaccine acceptance. "I could see a family deciding that they want to delay childhood vaccines, but they think the COVID vaccine is really important for their grandmother."
Omer said only a tiny fraction of very vocal people oppose all vaccines.
"There's a group of people who are gonna refuse the vaccine no matter what," he said. "Even if you put mom and apple pie in a shot, they would refuse the vaccine."
A somewhat larger segment of parents will refuse one or more — but not all — vaccines for their children. And then there's a much larger group that expresses hesitation about vaccination but ultimately accepts it.
Outright refusers are likely to make up a small part of the very broad group of adults who hesitate to get a COVID vaccine, too, Omer said. Many people are sitting on the fence and may still opt to be vaccinated.
Polls from KFF and the Pew Research Center show Americans' opinions have shifted over the past few months, with a growing share saying either that they want to get a vaccine "as soon as possible" or that they've already gotten one. (KHN is an editorially independent program of KFF.)
Interestingly, despite lots of coverage about vaccine concerns among racial and ethnic minorities, the latest KFF numbers show a nearly equal share of white and Black respondents — 15% and 14%, respectively — said they would "definitely not" get the vaccine.
Such polls also highlight another difference between childhood vaccines and the COVID vaccines: how political COVID vaccines have become.
"So far, childhood vaccines have been a bipartisan issue, more or less," said Omer. "Every few months, there's a debate on Twitter about whether it's a conservative issue or a liberal issue, or if it's the crunchy granola crowd or the libertarian crowd that is driving it. It's all of the above."
Indeed, Colorado schools that lacked herd immunity against the measles in 2019 because of high rates of nonmedical exemptions are a motley crew, spanning everything from a private religious school in the state's rural southwest to a private Waldorf school in affluent Boulder and a public high school in the Rockies.
Still, vaccination skepticism has trended Republican in recent years as mistrust of scientific authority has grown in the party. Following the measles outbreaks that sprang up across the United States in 2019, GOP legislators in several states opposed Democrat-led efforts to tighten vaccine exemption laws — a harbinger of GOP-led protests against lockdowns during the pandemic.
And attitudes toward COVID vaccination largely fall along party lines. As the KFF survey shows, the percentage of Democrats who said they wanted to get the shots as soon as possible (or had already gotten them) rose 28 points between December and February. The percentage rose 13 points among Republican respondents.
An increasingly politicized COVID vaccine landscape could threaten acceptance of other vaccines. Kristin Lunz Trujillo, a political scientist at Carleton College in Minnesota, said the pandemic teed up a situation in which vaccines could become a partisan issue.
"We've seen with the COVID vaccine, more so than any vaccine previously, the politicization that's occurring," she said.
And as Omer put it, when something leaves the realm of opinion and enters partisan identity, it calcifies.
"You become less persuadable — even in the face of a lot of evidence," he said. "With masks and the current debates around lockdowns, etc., if vaccines get folded in as part of that level of political identity, or a sense of yourself or your ideological brand, then we are in deep trouble."
Dr. Peter Hotez, a professor at Baylor College of Medicine in Houston, has watched the anti-vaccine campaign grow from a fringe movement in the early 2000s. It accelerated in 2015, when it linked to the political extreme on the right under a banner of "health freedom," he said.
"COVID-19, actually, somewhat paradoxically made things worse in terms of energizing the anti-vaccine movement," he said. "It's now a full-on anti-science empire."
On the other hand, said Reich, COVID vaccines may create opportunities to improve the conversation around vaccines in general. Previously, she said, vaccine messaging tended to be one-way: billboards, brochures, public service announcements. Now, state and local governments are engaging much more with stakeholders and community leaders.
"This moment is creating an awareness that communication that is successful has to be two-directional," she said. "That's an overdue change."
People have questions about what are, as Reich pointed out, vaccines that remain unlicensed. Engaging them in conversations, rather than dismissing them as victims of misinformation or conspiracy theories, could increase childhood vaccine use, too, she said.
Many long haulers have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits.
This article was published on Wednesday, March 10, 2021 in Kaiser Health News.
Rickie Andersen took a brief break from work in March after she fell ill. Her cough, fever and chills were typical COVID-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.
After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.
Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. "I realized this is not going to be a short-term thing," Andersen said.
Hundreds of thousands of people around the world are experiencing what is being called "long COVID" — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.
Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.
Given the lack of testing in the first months, many "long haulers," like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.
Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster. Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called "brain fog" as their main complaint.
"Most are people calling to say, 'I thought I could do it. I can't. My mind doesn't function for more than really brief periods of time,'" Comerford said. She gave a presentation to the New Jersey State Bar Association in mid-February on how to develop evidence for such cases.
In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn't known. Scientific understanding of the phenomenon is in its infancy.
In January, The Lancet reported that around three-quarters of more than 1,700 COVID patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington reported in JAMA Network Open that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.
The Social Security Administration provides long-term disability to American workers who qualify under its strict criteria, but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.
Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.
The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary's base salary, with a much higher maximum amount.
Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was COVID. She recovered but relapsed in April and again in May.
Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.
Lewis, who lives outside Philadelphia, is planning to appeal Prudential's rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling "devastated," she said, and in serious financial distress.
"This has been such an arduous journey," she said. "I have no income and I'm sick, and I'm continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat."
In Lewis' case, a Prudential reviewer noted that her symptoms were "subjective" and that there were "no physical exam findings to correlate with any ongoing functional limitations," according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.
Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that "our collective understanding of COVID-19 and any associated long-term effects are still evolving" but that Prudential is "well-versed in evaluating both subjective and objective aspects of disability claims."
Lawyers and advocates in the field expect the numbers of COVID-related long-term disability applicants to rise this year. But it's still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.
Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.
"The insurance companies will often say, 'There's no objective evidence, so we have nothing to support your claim,'" said Vastag, who won his case against Prudential in 2018. "I'm worried about the long-COVID patients who can't work anymore."
Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the Employee Retirement Income Security Act of 1974. Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.
In the event of litigation, the court's role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.
"It's the only shot to build a record for the courts, to develop a full body of evidence," she said.
However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients' accounts.
In Rickie Andersen's case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.
"I knew all of it was completely exhausting, so it wasn't something I thought I could do on my own," Andersen said.
Pfizer's management knew last year there was "a mold issue" at the Kansas facility now slated to produce the drugmaker's urgently needed COVID-19 vaccine, according to a Food and Drug Administration inspection report.
The McPherson, Kansas, facility, which FDA inspectors wrote is the nation's largest manufacturer of sterile injectable controlled substances, has a long, troubled history. Nearly a decade's worth of FDA inspection reports, recalls and reprimands reviewed by KHN show the facility as a repeat offender. FDA investigators have repeatedly noted in reports that the plant has failed to control quality and contamination or fully investigate after production failures.
The 1970s-era manufacturing site has had persistent mold concerns over the years and been the focus of at least four intense FDA inspections since Pfizer took over its operations in late 2015, when it acquired Hospira. At the end of the January 2020 inspection, FDA investigators appeared to be growing frustrated.
Pfizer's plant managers told investigators they knew they had either bacteria or mold throughout the facility at various times of the year. In a Jan. 17, 2020, establishment inspection report obtained by KHN, one of three FDA experts who visited wrote that Pfizer said it addressed problems and added "more cleaning activities in response to mold" after a 2018 inspection and "yet, there are still unexplained discrepancies."
After the January 2020 inspection report, Pfizer immediately developed and put in place a corrective action plan, company spokesperson Eamonn Nolan told KHN. Neither Pfizer nor the FDA responded to requests to provide a copy of the plan.
Nolan, in an email last week, said "significant investments have been made" in resources, equipment and the facility. He stated all improvements related to COVID manufacturing would be completed before vaccine production begins. He declined to provide details on when production of the vaccine would begin, but said the site is currently operating in a state of good manufacturing, which means it has met a regulatory standard enforced by the FDA.
"We are confident in the McPherson site's ability to manufacture high-quality COVID-19 vaccine," he wrote.
Large clinical trials have found Pfizer's vaccine to be safe and 95% effective against COVID.
News that the plant will be a fill-and-finish site for the Pfizer-BioNTech COVID vaccine means more watchful eyes focused on the facility. "That alone should be helpful," said Barbara Unger, a former pharmaceutical industry executive who now does manufacturing audits for companies.
It is unclear whether FDA investigators have returned to check on production practices in McPherson or plan to visit before vaccine production begins. The FDA did not respond to specific questions. FDA spokesperson Abigail Capobianco wrote in an email that the public "can be assured that the agency used all available tools and information to assess compliance."
Pfizer's emergency use authorization letter for its mRNA vaccine includes safeguards, such as quarterly reports to the FDA and a quality analysis from the company for each manufactured drug lot at least 48 hours before it is distributed.
The plant's manufacturing issues can be traced in FDA reports dated from 2011 to last year. Several former FDA staffers and industry experts said the ongoing challenges in McPherson highlight how agency officials must balance aggressively going after a company's manufacturing practices with the need to keep the supply of medications flowing to patients.
"I do not envy the FDA choices," Unger said, describing a balancing act. "Which has the more significant public health risk?"
The site produces a wide array of sterile, generic medications used in hospitals, and its troubles have played a role in some big health system shortages, specifically for injectable opioid analgesics, according to a 2018 FDA statement.
The FDA rejected Pfizer's biosimilar version of Amgen's anemia drug Epogen because of concerns about the fill/finish plant in 2017. The same year, John Young, who was a group president at Pfizer, told investors the company had submitted a "corrective and preventative action plan" for the facility.
That is the same language used after the January 2020 inspection, which said there were contamination concerns for the site but not in the medicines. And it was Young, now Pfizer's chief business officer, who last month told Congress that Pfizer had added production lines at the McPherson site to help meet COVID-19 vaccine demands.
The facility's record of recalls and field alerts include vials of medication that contained glass and cardboard particles and, as one customer complained, a "small insect or speck of dust."
A 2017 FDA warning letter — which is a strong rebuke for the agency — said the contaminants such as cardboard and glass found in vials posed a "severe risk of harm to patients" and indicated that the facility's process for manufacturing sterile injectable products was "out of control."
FDA records show that multiple batches of vancomycin hydrochloride, a drug injected into hospital patients who have an infection that penicillin won't treat, were recalled in 2016 and 2017.
John Avellanet, an FDA compliance expert and principal at Cerulean Associates, reviewed the 2020 inspection reports. He said he fears the fixes have been little but "window dressing."
"They may have solved it in one instance, like the cardboard particles. But for some reason, they were never able to solve the contamination," Avellanet said. "Whatever they are doing for quality control testing doesn't appear to be working, because if it was working they wouldn't continue to have these contamination problems."
Pfizer shut down McPherson's manufacturing in December 2017 even though the FDA had visited two months earlier and improved the facility's inspection rating. McPherson's management suspended production and rejected batches of finished products after finding mold on equipment in a filling area, according to an FDA inspection report. The facility returned to production weeks later.
When the FDA came back to inspect in late summer 2018, it found that procedures to prevent microbiological contamination of drugs were lacking. It also noted a lack of employee training, employees not following procedures, obstructed surfaces and in-house testing that did not guarantee drugs met standards.
In 2019, when CEO Albert Bourla took the helm at Pfizer, he told analysts it would be another hard year for U.S. hospitals to get their hands on sterile injectables because of ongoing work at the McPherson plant.
Since then, the coronavirus pandemic has taken a toll on the FDA's ability to inspect plants, according to a recent report from the U.S. Government Accountability Office. The agency halted non-urgent foreign and domestic inspections in March 2020 out of concerns for staff safety and has since resumed select visits to domestic plants.
John Fuson, a partner at the law firm Crowell & Moring and former associate chief counsel at the FDA, said the agency has sent surveys to manufacturers to help it prioritize inspections. While not speaking directly about the Pfizer plant, Fuson said the FDA lacks the resources to do all the inspections "we might like it to do."
It is unclear what oversight Pfizer's McPherson facility has had in the past year. In 2020, the pharmaceutical company Gilead Sciences signed a multiyear agreement with Pfizer to produce its COVID treatment remdesivir in the Kansas plant. Gilead spokesperson Arran Attridge wrote in an email that Gilead "evaluates our manufacturing partners' facilities" to make sure they follow regulations.
FDA inspectors visited the McPherson plant annually before the pandemic, according to public FDA records. The plant was given ratings of VAI, or voluntary action indicated, or OAI, official action indicated, depending on the inspection. John Godshalk, a former FDA investigator who worked on vaccines, said a VAI is one of the most common inspection ratings given. That means the FDA is "trusting the company to fix" the observations made during the inspections, he said.
The FDA assigned Pfizer's McPherson facility a VAI rating in January 2020 — and company executives were so pleased they reported in their third-quarter financial filing that the agency had "upgraded" the plant.
Before January 2020, the McPherson plant appears to have been operating with the more severe OAI rating since its 2018 inspection, according to FDA reports. Former FDA investigator Godshalk said an OAI puts the company on notice. It's "what you don't want as a company," he said.
Pfizer employs about 1,500 people at the McPherson plant, plus contractors. Kasi Morales, executive director of McPherson Industrial Development Co., said the facility is the largest employer in the industrial town about an hour north of Wichita, Kansas, and not far from Interstate 70, a major east-west thoroughfare across the country.
The 2020 inspection report that led to McPherson's "upgraded" rating listed repeat observations that involved quality control procedures not being fully followed and "contamination" with mold and bacteria on surfaces because of humidity and cleaning practices.
No contamination was found in the medications themselves during the inspection, but investigators described seeing operators "leaning over and talking over sterilized items being unwrapped."
Notably, the 2020 inspection report states early on that Pfizer had made "significant management changes" since the previous inspection in 2018. That latest inspection spanned three weeks from December 2019 to January 2020 and inspectors wrote "management was cooperative and no refusals were encountered."
Christopher Smith, vice president of quality operations for Pfizer's U.S. and European Union sterile injectables, was at the McPherson facility periodically during the visit. In the end, he "expressed discontent" with several of the 2020 observations made by investigators and "repeatedly sought clarifications."
Nearly 11 million undocumented immigrants living in the U.S. without legal permission are particularly vulnerable to the economic fallout wrought by the pandemic.
This article was published on Tuesday, March 9, 2021 in Kaiser Health News.
Ana's 9-year-old son was the first in the family to come down with symptoms that looked like COVID-19 last March. Soon after, the 37-year-old unauthorized immigrant and three of her other children, including a daughter with asthma, struggled to breathe.
For the next three weeks, the family fought the illness in isolation — Ana clutching the top of door frames to catch her breath — while friends and neighbors left food on the porch of their home in Colorado Springs, Colorado. Ana and her children never took tests to confirm they caught the coronavirus, but the pressure in her lungs, the fever, the headache and the loss of smell and taste convinced her it couldn't be anything else.
"It was horrible," said Ana, a Colorado resident for more than two decades who requested her last name not be used because of her immigration status. "We had to lay on the floor to breathe."
Nearly a year later, the effects of the virus go far beyond nagging shortness of breath for Ana. She lost her job cleaning houses when she got sick last March, so she couldn't pay rent. A local nonprofit's cash assistance funded by some federal COVID relief helped her catch up in the fall, but she still had no work and fell behind on rent again. Her landlord finally threw the family out of their home at the beginning of January with 30 hours' notice, she said.
Ana is one the nearly 11 million undocumented immigrants living in the U.S. without legal permission, who are particularly vulnerable to the economic fallout wrought by the pandemic and have no direct access to the billions of dollars in federal pandemic relief over the past year. An estimated 4 in 5 of them work essential jobs that put them at high risk to catch the COVID virus. They are also more likely to suffer the economic consequences, even with protections in place — such as the Centers for Disease Control and Prevention's eviction moratorium, extended through March — because they fear that reaching out for help or reporting landlords could lead to deportation or detention.
President Joe Biden's inauguration brought some encouraging news, as he's said he wants to create a path for citizenship for many of the nation's undocumented immigrants. He also said they should be able to be vaccinated against COVID without worrying that they will be arrested and deported.
Even though the COVID vaccines are available to everyone no matter their citizenship, a distrust of government and law enforcement in the immigrant community and a lack of culturally competent vaccination information and even misinformation have made some undocumented immigrants reluctant to come forward early in the vaccination rollout.
Even if Biden makes good on his pledge of equitable access to a vaccine, unauthorized U.S. residents continue to have no direct access to billions of dollars in federal pandemic relief. The issue was brought up again on March 6 when Republican Sen. Ted Cruz claimed Biden's new $1.9 trillion aid package would send stimulus checks to every illegal alien in America. Democratic Sen. Dick Durbin clarified that undocumented immigrants don't qualify for checks in the measure that passed the Senate. The House was set to take up the Senate's changes on Tuesday.
Advocacy groups have argued for "inclusive" aid packages that provide direct aid to as many immigrants as possible no matter citizenship status, and while a few states set up aid for the undocumented, it's not nearly enough, according to Marielena Hincapié, executive director of the National Immigration Law Center.
"Immigration status shouldn't be the gatekeeper to any of these programs. It really ultimately is about need and ensuring that families have the economic stability, to not only survive, but to get through this pandemic that all of us are impacted by," Hincapié says. "Eighty percent of undocumented immigrants are working as essential workers. We are relying on them, and yet are denying their families this basic support that everyone else is getting."
Couples with mixed immigration status — in which only one partner is a U.S. citizen — were also blocked from aid until December. They can now apply for stimulus payments retroactively but will still receive less than couples who are U.S. citizens. Though the change made millions more families eligible for some aid, couples in which both partners are undocumented immigrants also have not received stimulus payments for their children even if their children were born in the U.S. and are citizens. A group of families sued the Trump administration in May 2020 after it excluded children in the first COVID-19 aid package known as the CARES Act. The Department of Justice under the Biden administration has continued to defend the policy and has asked a federal judge to dismiss the lawsuit. A decision is pending.
Meanwhile, in February, eight Senate Democrats, including John Hickenlooper of Colorado, voted in favor of a budget amendment that continues to block both documented and undocumented immigrants who pay taxes using ITINs (individual taxpayer identification numbers) from receiving direct relief. (A Social Security number is a requirement for federal pandemic aid, which means immigrants who pay taxes with ITINs can't qualify.) After getting blowback for his vote from Colorado's immigration rights community and a letter from the Colorado ACLU accused the senator of breaking campaign promises to stand with immigrants, Hickenlooper met with community members and released a statement to a local news station: "I recognize how this vote has distorted that important fact and fed dangerous and damaging narratives about the undocumented community. … I remain committed to working together to finally achieve a comprehensive fix for our broken immigration system, including a pathway to citizenship."
Hincapié calls the vote "morally unconscionable." "The pandemic has shown how interdependent we are and that this is a time in our nation to make sure we're taking care of everyone. It's the only way we're going to get out of this," she said. "There is no recovery without including immigrants."
Nearly half of the nearly 11 million immigrants living illegally in the United States (including some 190,000 in Colorado) pay taxes, according to the American Immigration Council, a Washington, D.C.-based advocacy organization. In Colorado, they paid an estimated $272.8 million in federal taxes and $156.5 million in state and local taxes in 2018. According to the IRS, ITIN filers nationwide pay over $9 billion in annual payroll taxes.
The Migration Policy Institute, a nonprofit think tank in Washington, D.C., reported in January that 9.3 million unauthorized immigrants whose income meets the threshold for COVID aid are blocked from accessing it, and also can't apply for federal programs that provide cash and food assistance. It reported that undocumented people represent more than half of the workers in the hardest-hit industries, such as meatpacking, the restaurant business, healthcare and child care.
The Colorado nonprofit that provided Ana with rental assistance, Servicios de la Raza, received applications from 300 families for rental help. The group could assist only 51 of them, said Julissa Soto, the group's director of statewide programs. Soto, who used to be undocumented herself, said she knows of at least 30 undocumented families that are homeless because of the pandemic in El Paso County, which includes Colorado Springs. She said she is frustrated by a lack of action by Colorado's political leaders to address the problem.
"My community is starving and getting evicted, and this is because we are undocumented and we don't exist," she said. "No one wants to talk about the undocumented community."
It's unclear how many people living illegally across the nation have been evicted during the pandemic. One reason for the uncertainty is because they often leave the moment a landlord threatens to kick them out to avoid going to eviction court and risking deportation, immigration advocates say. As a result, landlords can often evict undocumented people without ever officially filing in civil court and without following the state and federal rules, so there is no paper trail to track.
"Rather than go to court and assert their rights, they just move out," said Zach Neumann, founder of the Colorado COVID-19 Eviction Defense Project. "They often do so in a way that's really disruptive to their families and their lives."
Ana's landlord evicted her at the end of her lease exploiting a loophole in the federal eviction moratorium that allows evictions when leases expire. She said her landlord threatened to call the police, so she left as quickly as possible. The short time frame her landlord set does not follow Colorado law, which allows tenants 10 days to appeal an eviction in court or leave the property after official notice is given.
A phone number listed for the landlord, AB Property Management, was disconnected, and multiple attempts to contact the owners of Ana's past rental property were unsuccessful.
Though President Joe Biden's proposed emergency pandemic aid package mentions ensuring vaccine access to Americans "regardless of their immigration status," there is no similar statement included for the $30 billion proposed in rental and critical energy and water assistance, or extended unemployment benefits or individual stimulus checks..
California and New York City developed payment programs for undocumented residents. But despite having an undocumented population of almost 200,000 — accounting for about 3% of the state's population in 2016 — Colorado has no financial aid program to address that community.
Ana and her children are now sleeping on the floor in a friend's unfurnished spare room. She recently found a cleaning job that pays $300 a week. It's not much, but she's thankful to have it after nine months of looking for work. She's still terrified of losing her kids if social-service workers find out the family is homeless.
"This is not living. This is just surviving. Let's be clear. This is just surviving, and I want to live. I want a house for my kids," she said.
Many people don't like needles, and that could further slow vaccination efforts as winter turns to spring when supplies are expected to multiply and efforts to get the hesitant to sign up for a dose will intensify.
Each night it's the same. Story after story on the TV news is about the COVID vaccination effort, and they are all illustrated with footage of needles sinking into exposed upper arms.
Could those visuals, ostensibly making this all seem routine, backfire?
More than causing squeamish people to look away or change the channel, researchers say such illustrations could hamper efforts to get a broad swath of U.S. residents vaccinated.
Bottom line: Many people don't like needles, and that could further slow vaccination efforts as winter turns to spring when supplies are expected to multiply and efforts to get the hesitant to sign up for a dose will intensify.
"Fear of needles was one of the barriers that was a significant predictor of people saying, 'I don't think I will get this vaccine,'" said Jeanine Guidry, an assistant professor at Virginia Commonwealth University who researches visual communication and conducted a survey of 500 people in July.
And it's not just TV news using what could be sensitive video footage.
Disinformation spread on social media often incorporates images of giant syringes, Guidry recently told the National Vaccine Advisory Committee, which makes recommendations to federal health officials. Social media has been a source of much incorrect information about vaccines in general, and COVID specifically, designed to dissuade people from getting shots.
Such "fear visuals," Guidry said, "get more attention," and may be remembered longer than other types of illustrations.
Legitimate efforts to encourage vaccination may have also inadvertently sparked fear by showing exaggeratedly large syringes, said Guidry, who urged public health experts to be careful with their messages, too.
"If you use a picture of a huge syringe that looks twice the size of my head, that makes you go, 'OK, that's big,'" said Guidry. "I can't fathom what that would do to someone who has a needle phobia."
Even attempts to reassure people by showing leaders such as Dr. Anthony Fauci or the president and vice president getting their COVID vaccinations on TV can be triggering, said Hillel Hoffmann, an independent communications consultant and freelance writer in Philadelphia.
"I always turn away," said Hoffmann, who recently wrote of his near lifelong fear of needles in a piece for Medicalbag, an online publication aimed at physicians.
"I know those pictures are supposed to psych me up for the fact that the vaccine is safe and available, and I'm not worried at all about the vaccines' safety," said Hoffmann. "But what I can't take because of my fear of needles is looking at a picture of someone with a small-bore needle buried in their deltoid muscle."
Public health experts say it's important to get at least 70% to 80% of the public vaccinated to reach what is called herd immunity, when enough people will either have had the COVID virus or a vaccination, to severely limit its further spread.
But fear of needles contributes to some people's vaccine hesitancy.
An analysis of a broad range of studies from the U.S. and other countries on this topic by researchers at the University of Michigan showed that 20% to 30% of adults studied cited concern about needles, ranging from mild anxiety to a phobia strong enough to keep some from seeking medical care. Even many healthcare workers cited a fear of needles, according to the research, published in the Journal of Advanced Nursing in August 2018.
"There's a perception that people who work in hospitals would be less afraid of needles, because they're surrounded by them all the time, but one study found 27% of hospital employees who did not take the flu vaccine said it was because of needle fear or they did not like needles," said Jennifer McLenon, an infection preventionist at Henry Ford Hospital in Detroit who completed the study while getting her master's degree in epidemiology.
Another study found that 18% of healthcare workers in long-term care facilities felt the same way, she said.
An extreme fear of needles or medical procedures involving injections is technically called trypanophobia, said Jeffrey Geller, president of the American Psychiatric Association.
"Some people avoid needles because of fear of pain, some from fear of fainting," said Geller. "And some people do faint."
It may have an evolutionary basis, said Thea Gallagher, an assistant professor and the director of the clinic at the Center for the Treatment and Study of Anxiety at the University of Pennsylvania. "We know from evolutionary biologists that seeing a sharp object going into our bodies is not something we are supposed to be cool with," said Gallagher.
But Geller and Gallagher said barriers created by this fear or phobia could be lowered with careful public health messaging, along with self-help techniques individuals can practice or, in severe cases, professional assistance from a therapist.
Public health messaging should avoid drawings that exaggerate the size of needles or syringes, "which are not helpful," said Geller, noting that the COVID vaccinations involve "a small syringe and needle."
But, as to the effect of those TV images night after night? Well, it could go either way.
"For those with a fear, it could exacerbate it," said Geller. "For those who don't have the fear, it could be reassuring to show that it's a routine practice."
McLenon, the researcher from Michigan, said she has heard, anecdotally, that those shots on TV "make people more afraid." "Can't we get some pictures of the vials or something else?" she suggested.
For instance, Hoffmann, the writer, said if he were designing the perfect visuals for a COVID vaccination campaign, it would not refer to injections directly at all.
"If I were to drive by a drugstore and it had a poster in the window saying 'Come get it today for your family. Do it for the nation. Do it for the public good' We would all know what the 'it' is. They don't have to show it."
Still, McLenon and others say no one has yet studied the effect specific images about the COVID vaccine have on people because it's so new. And the desire to get back to a more normal society may help those with a fear of needles push themselves to get a COVID vaccine, whereas they might not feel the same way about, say, an annual flu vaccination.
Hoffmann, who said his fear began after extensive dental work as a child, said he intends to get a shot. But when his turn comes, he said, he'll likely be very nervous; his heart will race and he will sweat. Unlike some people with a fear of needles, he does not faint, although he understands that reaction.
"A lot of people assume that what I'm afraid of is the pain," said Hoffmann. The worst part for him, he said, is how he can't control his fear in that public setting. And it's embarrassing. "I'm not alone when it happens. The person giving me the injection sees it. I can't hide it."
The emergency use authorization granted Feb. 27 by the Food and Drug Administration for the single-dose Johnson & Johnson vaccine is good news for people like Hoffmann. Both the Pfizer and Moderna vaccines currently available require two doses, spaced a few weeks apart. Which means facing fears twice.
Whether it's one or two shots, experts suggest a variety of steps to help people who struggle get through the process — bring a support person, take deep breaths, stay positive, just to name a few.
"It's nothing to be ashamed of. We come by it honestly," said Gallagher from the University of Pennsylvania. "Anxiety is likely making it into a bigger monster" than it should be. "It's not worth beating yourself up about."
Facing the Fear
For the millions of Americans who have some fear of needles, there are ways to help yourself cope, say experts.
— Put it in perspective. Be positive about the reasons you are getting the vaccine and remember that the pain will be short-lived, like a stubbed toe, said Thea Gallagher, director of the clinic at the Center for the Treatment and Study of Anxiety at the University of Pennsylvania. For those getting the two-dose regimens, "be objective about how the first one went," she said, "and that you got through it."
— Bring a support person. Some vaccination sites will allow this. Ask.
— Practice deep breathing or other techniques to help stay calm at the site. Eat something and drink water beforehand; it reduces the chance of fainting. And you can request being inoculated in a reclined position.
— Tell your vaccinator of your concerns. "When you get there, you can say, 'Look, I don't like needles.' The healthcare providers are used to that," said Dr. Georges Benjamin, executive director of the American Public Health Association.
— Don't be afraid to seek professional help if your fear is intense but you feel strongly about getting vaccinated. A therapist can use cognitive-behavioral techniques or exposure therapy to help, said Dr. Jeffrey Geller, president of the American Psychiatric Association.