Like tens of millions of other parents nationwide, Jonathan and Sara Sadowski struggle to assist their four children, ages 5 to 11, with their online schooling at home. In addition, their eldest child, who has cerebral palsy and is in a wheelchair, needs special care.
So to help the kids and keep them safe — especially their oldest child — Jonathan opted to take 12 weeks of paid leave from his teaching job under a program authorized by an emergency federal law enacted in March.
“Qualifying for paid leave was a huge relief and has worked out really well,” said Jonathan, who lives in Concord, New Hampshire.
But the family has learned about a new wrinkle: The 11-year old needs surgery in January. The operation is expected to require a month or two of recovery. Unfortunately, Jonathan’s leave will be used up by then; what’s more, the emergency federal paid leave program it is based on lapses Dec. 31.
Unions and workers’ rights and consumer advocacy groups are this week waging a last-ditch effort to get Congress to extend the program into 2021. They argue that the program is a critical component helping to prevent the spread of the virus and providing financial assistance to struggling families.
They also assert that a number of unwise exemptions — plus a lack of enforcement and public awareness — have limited the program’s effectiveness.
“The emergency paid-leave provisions have been one important step in helping American families deal with this crisis,” said Sen. Kirsten Gillibrand (D-N.Y.). “Congress must extend the provision until this crisis is over. Paid leave is critical as the economy recovers.”
The program is among two dozen pandemic-related relief measures set to expire at the end of the year. Those include unemployment benefits, protections against evictions, student loan relief and payments for COVID testing.
The Democratic-controlled House twice approved bills extending most of those, including paid leave. But Republican leaders in the Senate have until this month refused to consider new relief and stimulus legislation. This week, negotiations have intensified on a compromise bill that extends some of the expiring measures. But an extension of paid sick days and paid leave is not included in that bill.
Capitol Hill staffers and workers’ rights advocates say a paid-leave extension could still be added to the relief bill or a government spending bill that Congress must pass this month.
“It’s outrageous that paid leave is not in this legislation,” said Vicki Shabo, a senior fellow for paid-leave policy and strategy at New America, a Washington think tank. “The evidence is very clear paid sick days and leave help prevent spread of the virus, and it’s a benefit families overwhelmingly want and need.”
Neither the Trump administration nor President-elect Joe Biden responded to requests for comment, and neither has announced a position on the issue.
Paid Sick Leave ‘Is in the Public Interest’
The current law requires businesses with fewer than 500 workers to allow their employees to take up to 10 days of sick leave at full pay and up to 50 more at two-thirds pay to care for a child when schools or day care centers are closed because of COVID-19.
The federal government covers the cost via tax credits to employers. The benefit covers mandatory 14-day quarantine periods for those exposed to the virus, whether they get sick or not.
Larger firms were exempted on the theory that most already provide paid sick days and some forms of extended paid leave — and don’t need federal subsidies.
But an analysis after the law was enacted found that the exemption leaves about 70 million workers in large businesses — roughly half the nation’s workforce — without the full protections offered under the COVID law.
The law and subsequent Department of Labor rules also permit firms with 50 or fewer employees to opt out of providing paid sick days or leave if they think their business will be adversely affected.
About 34 million people work for those small businesses — and the majority offer fewer than 10 paid sick days, if any. Few have extended paid leave.
In addition, the law has no guarantee of paid sick days or leave for the nation’s 13 million health care and emergency response workers.
The justification for that when the measure was enacted: Hospitals, clinics, nursing homes and emergency response companies needed to ensure that these essential workers would show up in a time of crisis.
“This was extremely shortsighted and bad policy,” said Pronita Gupta, director of job quality at the Center for Law and Social Policy in Washington, D.C. “We have seen the harmful outcome — the high number of coronavirus cases in health care facilities, especially among low-wage nursing home workers.”
Nor does the law offer extended paid leave for people who have COVID-19 or need to care for a family member with the disease beyond 10 days. Republicans opposed a broad-based benefit beyond at-home child care, advocates for the benefit noted.
“The problem is we now know that thousands of people who have COVID are sick for more than two weeks, some for months,” said Shabo. “These people need to be able to stay home and recover; that’s in the public interest as well.”
In a letter this month, a coalition of nine national public health groups urged Congress to extend the paid-leave benefits. “Paid sick leave can reduce the spread of COVID-19 in workplaces and communities by removing the barrier to employees staying home if they might have the virus,” the groups wrote. “Even one infection can set off an outbreak.”
Business groups are sympathetic, but some still oppose extending paid leave. Chief among them is the National Federation of Independent Business, a lobbying powerhouse that represents small businesses. Beth Milito, the group’s senior executive counsel, said that while small-business owners have been “highly sensitive” to their workers’ needs during the pandemic, mandating paid sick days and extended leave puts an undue burden on them.
“Figuring out who qualifies, monitoring who takes leave and then applying for the tax credit is all too much red tape,” Milito said. “It’s the hassle factor at a time when many businesses are barely making ends meet.”
Estimates of the Program’s Costs Vary Widely
Surveys show a majority of the estimated 70 million private- and public-sector workers covered under the law — after all the exemptions and carve-outs — don’t know about their right to paid sick days or leave.
“The lack of awareness has limited the potential of this benefit,” said Dawn Huckelbridge, director of the Paid Leave for All campaign, which is supported by a coalition of unions and employees and other groups. The Department of Labor, which administers the benefit, “simply fell down on the job,” she said.
Estimates last spring of the use and cost of the benefit varied widely — from around $20 billion to $105 billion.
But more recent estimates suggest it may be less. According to a Government Accountability Office report citing IRS data, as of the end of October about 150,000 employers had filed for paid family and sick leave tax credits, totaling $1.3 billion. The report noted, however, that many employers will likely wait until filing their taxes in the spring to claim the credit and recoup their costs.
The congressional Joint Committee on Taxation last month released fresh projections on the cost of an extension of paid leave — $1.4 billion if extended for two months and $1.8 billion for three months.
Although it’s too early for any full assessment of the paid-leave program’s impact, advocates point to a key study, published online in October in the journal Health Affairs. Researchers at Cornell University and the KOF Swiss Economic Institute found that in states where workers gained the right to paid sick leave under the emergency law, 400 fewer confirmed COVID cases were reported per day.
The researchers conclude: “Our findings suggest that the U.S. emergency sick leave provision was a highly effective policy tool to flatten the curve in the short run.”
As apprehension about the pandemic intensifies, more Americans — nearly three-quarters — say they wear masks every time they leave the house, according to a poll released Friday.
The poll from KFF also found that 68% of American adults were worried someone in their family will get sick from the coronavirus, the highest level since the nonprofit began tracking the question in February. The public was least worried in April, when 53% were concerned the infection might strike their family. Since April, fewer than half of Republicans have consistently expressed fear that a family member will be sickened by COVID-19. (KHN is an editorially independent program of KFF.)
The latest survey, conducted among 1,676 adults from Nov. 30 to Dec. 8, found that 51% of Americans believed the worst is yet to come from the pandemic, which has claimed more than 300,000 lives in the U.S. The height of optimism occurred in September, when 38% of adults expected things to get worse.
Public support has risen for consistent use of masks, which has been a highly politicized marker of partisan affiliation. The poll found 73% of people said they wear a mask every time they leave home, an increase of 21 percentage points since May due to greater compliance among all partisan and age groups. The same percentage of 73% of respondents said they believe wearing a mask is part of the communal responsibility to prevent the spread of COVID, though nearly half of Republicans view it primarily as a personal choice.
While 87% of Democrats said they always wear a mask out of the house, 71% of independents and 55% of Republicans said the same.
Seven in 10 adults said they are prepared to adhere to physical distancing guidelines for another half-year or more until vaccines are widely available. Nearly 9 in 10 Democrats said they had the wherewithal but only half of Republicans did.
Political leanings polarized people in their views about whether their states have enacted enough restrictions to limit the spread of COVID-19. Half of Republicans thought their state had too many restrictions on businesses, while only 7% of Democrats and 24% of independents did. Four of 10 Republicans thought the state had too many restrictions on individuals, while only 3% of Democrats and 19% of independents did.
About half of Americans said stress related to the coronavirus has affected their mental health. The concerns are most widespread among women, young adults, minorities and people who have lost income, either personally or via their spouse, since the start of the outbreak.
She lay behind a glass barrier, heavily sedated, kept alive by a machine that blew oxygen into her lungs through a tube taped to her mouth and lodged at the back of her throat. She had deteriorated rapidly since arriving a short time earlier.
"Her respiratory system is failing, and her cardiovascular system is failing," said Dr. Luis Huerta, a critical care expert in the intensive care unit. The odds of survival for the patient, who could not be identified for privacy reasons, were poor, Huerta said.
The woman, in her 60s, was among 50 patients so ill with COVID-19 that they required constant medical attention this week in ICUs at Los Angeles County+USC Medical Center, a 600-bed public hospital on L.A.'s Eastside. A large majority of them had diabetes, obesity or hypertension.
An additional 100 COVID patients, less ill at least for the moment, were in other parts of the hospital, and the numbers were growing. In the five days that ended Wednesday, eight COVID patients at the hospital died — double the number from the preceding five days.
As COVID patients have flooded into LAC+USC in recent weeks, they've put an immense strain on its ICU capacity and staff — especially since non-COVID patients, with gunshot wounds, drug overdoses, heart attacks and strokes, also need intensive care.
No more ICU beds were available, said Dr. Brad Spellberg, the hospital's chief medical officer.
Similar scenes — packed wards, overworked medical staffers, harried administrators and grieving families — are playing out in hospitals across the state and the nation.
In California, only 3% of ICU beds were available as of Thursday. In the 11-county Southern California region, no ICU beds were open, and in the San Joaquin Valley, just 0.7% were.
The county of Los Angeles, the nation's largest, was perilously close to zero capacity.
County health officials reported Wednesday that the number of daily new COVID cases, deaths and hospitalizations had all soared beyond their previous highs for the entire pandemic.
LAC+USC has had a heavy COVID burden since the beginning of the pandemic, largely because the low-income, predominantly Latino community it serves has been hit so hard. Latinos represent about 39% of California's population but have accounted for nearly 57% of the state's COVID cases and 48% of its COVID deaths, according to data updated this week.
Many people who live near the hospital have essential jobs and "are not able to work from home. They are going out there and exposing themselves because they have to make a living," Spellberg said. And, he said, "they don't live in giant houses where they can isolate themselves in a room."
The worst cases end up lying amid a tangle of tubes and bags, in ICU rooms designed to prevent air and viral particles from flowing out into the hall. The sickest among them, like the woman described above, need machines to breathe for them. They are fed through nose tubes, their bladders draining into catheter bags, while intravenous lines deliver fluids and medications to relieve pain, keep them sedated and raise their blood pressure to a level necessary for life.
To take some pressure off the ICUs, the hospital this week opened a new "step-down" unit, for patients who are still very sick but can be managed with a slightly lower level of care. Spellberg said he hopes the unit will accommodate up to 10 patients.
Hospital staff members have also been scouring the insurance plans of patients to see if they can be transferred to other hospitals. "But at this point, it's become almost impossible, because they're all filling up," Spellberg said.
Two weeks ago, a smaller percentage of COVID patients in the ER were showing signs of severe disease, which meant fewer needed to be admitted to the hospital or the ICU than during the July surge. That was helping, as Spellberg put it, to keep the water below the top of the levee.
But not anymore.
"Over the last 10 days, it is my distinct impression that the severity has worsened again, and that's why our ICU has filled up quickly," Spellberg said Monday.
The total number of COVID patients in the hospital, and the number in its ICUs, are now well above the peak of July — and both are nearly six times as high as in late October. "This is the worst it's been," Spellberg said. And it will only get worse over the coming weeks, he added, if people travel and gather with their extended families over Christmas and New Year's as they did for Thanksgiving.
"Think New York in April. Think Italy in March," Spellberg said. "That's how bad things could get."
They are already bad enough. Nurses and other medical staffers are exhausted from long months of extremely laborious patient care that is only getting more intense, said Lea Salinas, a nurse manager in one of the hospital's ICU units. To avoid being short-staffed, she's been asking her nurses to work overtime.
Normally, ICU nurses are assigned to two patients each shift. But one really sick COVID patient can take up virtually the entire shift — even with help from other nurses. Jonathan Magdaleno, a registered nurse in the ICU, said he might have to spend 10 hours during a 12-hour shift at the bedside of an extremely ill patient.
Even in the best case, he said, he typically has to enter a patient's room every 30 minutes, because the bags delivering medications and fluids empty at different rates. Every time nurses or other care providers enter a patient's room, they must put on cumbersome protective gear — then take it off when they leave.
One of the most delicate and difficult tasks is a maneuver known as "proning," in which a patient in acute respiratory distress is flipped onto his or her stomach to improve lung function. Salinas said it can take a half-hour and require up to six nurses and a respiratory therapist, because tubes and wires have to be disconnected, then reconnected — not to mention the risks involved in moving an extremely fragile person. And they must do it twice, because every proned patient needs to be flipped back later in the day.
For some nurses, working on the COVID ward at LAC+USC feels very personal. That's the case for Magdaleno, a native Spanish speaker who was born in Mexico City. "I grew up in this community," he said. "Even if you don't want to, you see your parents, you see your grandparents, you see your mom in these patients, because they speak the language."
He planned to spend Christmas only with members of his own household and urged everyone else to do the same. "If you lose any member of your family, then what's the purpose of Christmas?" he asked. "Is it worth it going to the mall right now? Is it worth even getting a gift for somebody who's probably going to die?"
That the darkest hour of the pandemic should come precisely at the moment when COVID vaccines are beginning to arrive is especially poignant, said Dr. Paul Holtom, chief epidemiologist at LAC+USC.
"The tragic irony of this is that the light is at the end of the tunnel," he said. "The vaccine is rolling out as we speak, and people just need to keep themselves alive until they can get the vaccine."
Long-term care residents' participation in the fastest and most extensive vaccination effort in U.S. history is clouded by a significant complication: More than half have cognitive impairment or dementia.
This article was published on Thursday, December 17, 2020 in Kaiser Health News.
Imagine this: Your elderly mother, who has dementia, is in a nursing home and COVID-19 vaccines are due to arrive in a week or two.
You think she should be vaccinated, having heard the vaccine is effective in generating an immune response in older adults. Your brother disagrees. He worries that development of the vaccine was rushed and doesn't want your mother to be among the first people to get it.
These kinds of conflicts are likely to arise as COVID vaccines are rolled out to long-term care facilities across the country.
Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America's 45 million seniors and their families navigate the healthcare system.
"This is a highly politicized environment, not only with respect to vaccines but also over the existence of the virus itself," said Michael Dark, a staff attorney with California Advocates for Nursing Home Reform. "It's not hard to imagine disputes arising within families."
About 3 million people — most of them elderly — live in nursing homes, assisted living centers and group homes, where more than 105,000 residents have died of COVID-19. They should be among the first Americans to receive vaccines, along with healthcare workers, according to recommendations from the Centers for Disease Control and Prevention and various state plans.
But long-term care residents' participation in the fastest and most extensive vaccination effort in U.S. history is clouded by a significant complication: More than half have cognitive impairment or dementia.
This raises a number of questions. Will all older adults in long-term care understand the details of the vaccines and be able to consent to getting them? If individual consent isn't possible, how will families and surrogate decision-makers get the information they need on a timely basis?
And what if surrogates don't agree with the decision an elderly person has made and try to intervene?
"Imagine that the patient, who has some degree of cognitive impairment, says 'yes' to the vaccine but the surrogate says 'no' and tells the nursing home, 'How dare you try to do this?" said Alta Charo, a professor of law and bioethics at the University of Wisconsin-Madison Law School.
Addressing these issues will occur against a backdrop of urgency. Deaths in long-term care facilities are rising dramatically, with new estimates suggesting that 19 residents die of COVID-19 every hour. With viral outbreaks increasing, already-overwhelmed staffers may not have much time to sit down with residents to answer questions or have conversations with families over the phone.
Meanwhile, CVS and Walgreens, the companies operating vaccine programs at most long-term care facilities, have aggressive timetables. Both companies have said the large-scale rollout of the Pfizer-BioNTech vaccine — the first one that the Food and Drug Administration has authorized — will begin on Dec. 21.But facilities in some states may get supplies earlier. Altogether, there are more than 15,000 nursing homes and nearly 29,000 assisted living residences in the U.S.
At a meeting of the federal Advisory Committee on Immunization Practices early this month, Dr. Nancy Messonnier, director of the CDC's National Center for Immunization and Respiratory Diseases, acknowledged the agency was "very concerned" that information about vaccines be adequately explained to long-term care residents. "It's very important for the frail elderly not only to ensure that they are understanding the vaccine that they're getting but also that their family members do," she said.
Each vaccine manufacturer will be required to prepare a fact sheet describing what's known about benefits and risks associated with a vaccine, what's not known, and making it clear that a vaccine has received "emergency use authorization" from the FDA — a conditional endorsement that falls short of full approval. A second vaccine, from Moderna, is poised to receive this kind of authorization after an FDA meeting on Thursday.
Something that will need to be made clear to residents: while vaccines have been tested on people age 65 and older, those tests did not include individuals living in long-term care, according to Dr. Sara Oliver, a CDC expert.
Some operators have crafted communication plans around the vaccines and already begun intensive outreach. Others may not be well prepared.
Juniper Communities operates 22 senior housing communities (a standalone nursing home, multiple memory care and assisted living facilities, and two continuing care retirement communities) in Colorado, New Jersey and Pennsylvania. This week, it is planning an hour-long town hall videoconferencing session for residents and families about coronavirus vaccines. Last week, it held a similar event for staffers.
Juniper has contracted with CVS, which is requiring that every resident and staff member fill out consent forms in triplicate before being inoculated. When written consent can't be obtained directly, verbal consent, confirmed independently, may substitute. Walgreens has similar requirements.
For residents with memory impairment, two Juniper nurses will reach out by phone to whomever has decision-making authority. "One will ask questions and obtain verbal consent; the other will serve as a witness," said Lynne Katzmann, Juniper's founder and chief executive officer. Separately, emails, blog posts and prerecorded voice messages about the vaccines have gone out to Juniper residents and staffers, starting at the end of November.
A key message is "we've done this before, not at this scale, mind you, and not at this level of import, but we do flu vaccinations annually," said Katzmann, who plans to be the first Juniper employee to get the Pfizer vaccine when it comes to New Jersey.
At Genesis Healthcare, crucial messages are "these vaccines have been studied thoroughly, tens of thousands of people have received them already, they're very, very effective, and no steps have been skipped in the scientific process," said Dr. Richard Feifer, executive vice president and chief medical officer. Genesis, the nation's largest long-term care company, operates more than 380 nursing homes and assisted living residences in 26 states, with about 45,000 employees and more than 30,000 residents.
Medical directors at each Genesis facility have been scheduling video conferences with families, residents and staffers during the past few weeks to address concerns. They've also distributed a letter and a question-and-answer document prepared by the Society for Post-Acute and Long-Term Care Medicine, in addition to getting information out through closed-circuit TV channels and social media.
In partnership with Brown University researchers, the company will monitor daily the side effects that its long-term care residents experience after getting coronavirus vaccines. Most reactions are expected to be mild or moderate and resolve within a few days. They include fatigue, pain at the injection site, headaches, body aches, fever and, rarely, allergic responses.
Administering the vaccine will occur over three visits for all long-term care facilities. At the first, all Genesis residents and staffers will get inoculations. At the second, three to four weeks later, those same people will get a second dose, and new staffers and residents will get a first dose. At the third, those who still qualify for a second vaccine dose will get one.
What will happen if lots of people experience uncomfortable side effects and employees don't come in for a couple of days while recovering? "It's a very difficult problem and we're making contingency plans to address it," Feifer said.
And what about continuing care retirement communities — also known as "life plan communities" — where residents in skilled nursing, assisted living and independent living can reside in close proximity?
That's the case at Bayview in Seattle, which houses 210 residents in a 10-story building. For the moment, independent living residents aren't on the priority list but "I know there will be a contingent of residents and staff who won't want to be vaccinated and we'll see if we can use those vaccines for our independent living people instead," said Joel Smith, Bayview's health services administrator.
Logistical challenges are sure to arise, but many operators have an acute sense of mission. "It is critical that we lead the way out of this crisis," Feifer of Genesis said. "Nursing homes need to go first and be the first ones to address vaccine hesitancy head-on and be successful at generating a high level of acceptance. There is no alternative, no Plan B right now. We have to be successful."
When her husband was diagnosed with early-stage Alzheimer's disease in 2015, Elizabeth Pan was devastated by the lack of options to slow his inevitable decline. But she was encouraged when she discovered the work of a UCLA neurologist, Dr. Dale Bredesen, who offered a comprehensive lifestyle management program to halt or even reverse cognitive decline in patients like her husband.
After decades of research, Bredesen had concluded that more than 36 drivers of Alzheimer's cumulatively contribute to the loss of mental acuity. They range from chronic conditions like heart disease and diabetes to vitamin and hormonal deficiencies, undiagnosed infections and even long-term exposures to toxic substances. Bredesen's impressive academic credentials lent legitimacy to his approach.
Pan paid $4,000 to a doctor trained in Bredesen's program for a consultation and a series of extensive laboratory tests, then was referred to another doctor, who devised a stringent regimen of dietary changes that entailed cutting out all sugars, eating a high-fat, low-carbohydrate diet and adhering to a complex regimen of meditation, vigorous daily exercise and about a dozen nutritional supplements each day (at about $200 a month). Pan said she had extensive mold remediation done in her home after the Bredesen doctors told her the substance could be hurting her husband's brain.
But two years passed, she said, and her husband, Wayne, was steadily declining. To make matters worse, he had lost more than 60 pounds because he didn't like the food on the diet. In April, he died.
"I imagine it works in some people and doesn't work in others," said Pan, who lives in Oakton, Virginia. "But there's no way to tell ahead of time if it will work for you."
Bredesen wrote the best-selling 2017 book "The End of Alzheimer's" and has promoted his ideas in talks to community groups around the country and in radio and TV appearances like "The Dr. Oz Show." He has also started his own company, Apollo Health, to market his program and train and provide referrals for practitioners.
Unlike other self-help regimens, Bredesen said, his program is an intensely personalized and scientific approach to counteract each individual's specific deficits by "optimizing the physical body and understanding the molecular drivers of the disease," he told KHN in a November phone interview. "The vast majority of people improve" as long as they adhere to the regimen.
Bredesen's peers acknowledge him as an expert on aging. A former postdoctoral fellow under Nobel laureate Stanley Prusiner at the University of California-San Francisco, Bredesen presided over a well-funded lab at UCLA for more than five years. He has been on the UCLA faculty since 1989 and also founded the Buck Institute for Research on Aging in Marin County. He has written or co-authored more than 200 papers.
But colleagues are critical of what they see as his commercial promotion of a largely unproven and costly regimen. They say he strays from long-established scientific norms by relying on anecdotal reports from patients, rather than providing evidence with rigorous research.
"He's an exceptional scientist," said George Perry, a neuroscientist at the University of Texas-San Antonio. "But monetizing this is a turnoff."
"I have seen desperate patients and family members clean out their bank accounts and believe this will help them with every ounce of their being," said Dr. Joanna Hellmuth, a neurologist in the Memory and Aging Center at UCSF. "They are clinging to hope."
Many of the lifestyle changes Bredesen promotes are known to be helpful. "The protocol itself is based on very low-quality data, and I worry that vulnerable patients and family members may not understand that," said Hellmuth. "He trained here" — at UCSF — "so he knows better."
The Bredesen package doesn't come cheap. He has built a network of practitioner-followers by training them in his protocol — at $1,800 a pop — in seminars sponsored by the Institute for Functional Medicine, which emphasizes alternative approaches to managing disease. Apollo Health also offers two-week training sessions for a $1,500 fee.
Once trained in his ReCODE Protocol, medical professionals charge patients upward of $300 for a consultation and as much as $10,500 for eight- to 15-month treatment packages. For the ReCODE protocol, aimed at people already suffering from early-stage Alzheimer's disease or mild cognitive decline, Apollo Health charges an initial $1,399 fee for a referral to a local practitioner that includes an assessment and extensive laboratory tests. Apollo then offers $75-per-month subscriptions that provide cognitive games and online support, and links to another company that offers dietary supplements for an additional $150 to $450 a month. Insurance generally covers little of these costs.
Apollo Health, founded in 1998 and headquartered in Burlingame, California, also offers a protocol geared toward those who have a family history of dementia or want to prevent cognitive decline.
Bredesen estimates that about 5,000 people have done the ReCODE program. The fees are a bargain, Bredesen said, if they slow decline enough to prevent someone from being placed in a nursing home, where yearly costs can climb past $100,000 annually.
Bredesen and his company are tapping into the desperation that has grown out of the failure of a decades-long scientific quest for effective Alzheimer's treatments. Much of the research money in the field has narrowly focused on amyloid — the barnacle-like gunk that collects outside nerve cells and interferes with the brain's signaling system — as the main culprits behind cognitive decline. Drugmakers have tried repeatedly, and thus far without much success, to invent a trillion-dollar anti-amyloid drug. There's been less emphasis in the field on the lifestyle choices that Bredesen stresses.
"Amyloids sucked up all the air in the room," said Dr. Lon Schneider, an Alzheimer's researcher and a professor of psychiatry and behavioral sciences at the Keck School of Medicine at USC.
Growing evidence shows lifestyle changes help delay the progress of the mind-robbing disease. An exhaustive Lancet report in August identified a long list of risk factors for dementia, including excessive drinking, exposure to air pollution, obesity, loss of hearing, smoking, depression, lack of exercise and social isolation. Controlling these factors — which can be done on the cheap — could delay or even prevent up to 40% of dementia cases, according to the report.
Bredesen's program involves all these practices, with personalized bells and whistles like intermittent fasting, meditation and supplements. Bredesen's scientific peers question whether data supports his micromanaged approach over plain-vanilla healthy living.
Bredesen has publishedthree papersshowing positive results in many patients following his approach, but critics say he has fallen short of proving his method's effectiveness.
The papers lack details on which protocol elements were followed, or the treatment duration, UCSF's Hellmuth said. Nor do they explain how cognitive tests were conducted or evaluated, so it's difficult to gauge whether improvements were due to the intervention, to chance variations in performance or an assortment of other variables, she said.
Bredesen shrugs off the criticism: "We want things to be in an open-access journal so everybody can read it. These are still peer-reviewed journals. So what's the problem?"
Another problem raised about Bredesen's enterprise is the lack of quality control, which he acknowledges. Apollo-trained "certified practitioners" can include everyone from nurses and dietitians to chiropractors and health coaches. Practitioners with varying degrees of training and competence can take his classes and hang out a shingle. That's a painful fact for some who buy the package.
"I had the impression these practitioners were certified, but I realize they all had just taken a two-week course," said a Virginia man who requested anonymity to protect his wife's privacy. He said that he had spent more than $15,000 on tests and treatments for his ailing spouse and that six months into the program, earlier this year, she had failed to improve.
Bredesen said he and his staff were reviewing "who's getting the best results and who's getting the worst results," and intended to cut poor performers out of the network. "We'll make it so that you can only see the people getting the best results," he said.
Colleagues say that to test whether Bredesen's method works it needs to be subjected to a placebo-controlled study, the gold standard of medical research, in which half the participants get the treatment while the other half don't.
In the absence of rigorous studies, said USC's Schneider, a co-author of the Lancet report, "saying you can 'end Alzheimer's now and this is how you do it' is overpromising and oversimplifying. And a lot of it is just common sense."
Bredesen no longer says his method can end Alzheimer's, despite the title of his book. Apollo Health's website still makes that claim, however.
The Rochester Healthy Community Partnership has been working to reduce health disparities in the area's immigrant communities, including Somali, Hispanic, Cambodian, South Sudanese and Ethiopian residents, for 15 years.
This article was published on Thursday, December 17, 2020 in Kaiser Health News.
MINNEAPOLIS — Gloria Torres-Herbeck gets the flu vaccine every year, but the 53-year-old teacher in Rochester, Minnesota, isn't yet convinced she wants to be first in line for a potential COVID-19 vaccine.
"I'm not super old, but I'm not as strong as other people," she said. "So, I need to be realistic on my own situation. Do I want to participate in something that might be a big risk for me?"
This month, the Food and Drug Administration gave emergency use authorization for one vaccine and is weighing approval of another. So, public health officials around the country are gearing up for what might be as challenging as figuring out how to store a vaccine at 70 degrees below zero Celsius. They need to persuade people who are part of communities that have been hit hard by the virus — those in low-income families and some minority populations, especially Black and Latino residents — to take a vaccine developed in less than a year and approved under emergency use authorization.
Yet there are a few places where officials think they have a head start. Rochester, Minnesota, home of the Mayo Clinic, is one of them. The Rochester Healthy Community Partnership has been working to reduce health disparities in the area's immigrant communities, including Somali, Hispanic, Cambodian, South Sudanese and Ethiopian residents, for 15 years.
The partnership is composed of Mayo health providers and researchers, county public health officials and community volunteers like Torres-Herbeck, who immigrated to the U.S. 27 years ago from Mexico. One of the first of its kind, other similar efforts have sprung up around the country, but no one officially tracks such partnerships.
"What we realized when the pandemic hit in spades in March was that with long-established partnerships we were uniquely positioned to leverage" trust built up over the years between Mayo experts and their community partners, said Dr. Mark Wieland, who helps direct the group and studies the impact of such partnerships. "We realized we were obligated to jump in with two feet."
Although only preliminary evidence has been gathered so far, there are indications that since the efforts began, Rochester has increased COVID-19 testing, improved contact tracing and boosted preventive behaviors such as mask-wearing, hand-washing and physical distancing in these vulnerable communities, he said. The group is hoping those early successes portend well for vaccine acceptance.
Learning From a Measles Outbreak
The Rochester partnership is banking on a commonsense approach that focuses on shared values, transparency and clear communication.
It's a strategy that has succeeded in the past.
When a measles epidemic hit the large Somali population in Minneapolis-St. Paul in 2017, the Mayo Clinic reached out to community leaders among the 25,000 Somali immigrants in the Rochester area. Many had been frightened of the measles vaccine by baseless claims that it could cause autism, and vaccination rates were low in the community. Medical experts held town hall meetings in mosques and community centers, answering questions about vaccine safety and reassuring people that there was no scientific evidence of a link to autism. Somali actors created YouTube videos to help address common concerns. In the end, there were no recorded cases of measles in Olmsted County, home to Rochester.
About a year ago, Dr. Robert Jacobson, medical director for the Population Health Science Program at Mayo Clinic, at the request of a rabbi visited an Orthodox Jewish community in New York in which vaccine refusal was fueling another measles outbreak. He helped healthcare leaders there allay concerns.
"The Orthodox Jews in that community were refusing that vaccine for the same reason we were recommending it," Jacobson said. "They were trying to protect their children."
Efforts by Jewish leaders, public health experts such as Jacobson and lawmakers who tightened up laws on vaccine exemptions helped quell the outbreak.
Since March, the Rochester partnership has broadcast similar messages about COVID-19 to diverse audiences. Fear or misunderstanding was an issue at the beginning of the pandemic. Health leaders found that members of the immigrant communities were hanging up when the public health department called. So, the partnership developed messaging in several languages to explain the importance of the phone calls. They worked around problems, including that other languages don't always have terms that mesh with English words for illnesses. For example, the word for "cold" and "flu" is the same in Somali.
Now fewer people hang up.
At the same time, these public health teams report back to the medical experts on what the community needs. "They're the experts on the subtleties of their communities," Wieland said.
So when the group learned that many immigrants were intimidated by COVID-19 testing and unsure of the logistics, the group recommended simplifying the process: Now, videos featuring community leaders on social media direct people to testing sites. Once there, anyone who doesn't speak English automatically gets tested — no identification or insurance card necessary.
"We think that's part of the reason that, as a county, we have overtested minority populations in relation to white populations," Wieland said.
The 'Why' Was Missing
Only 40% of older Black adults and 51% of older Hispanics said they are somewhat or very likely to get the COVID-19 vaccination — compared with 63% of older white people, a University of Michigan poll shows. Their concerns mirror Torres-Herbeck's: how well will the vaccine work or how safe it will be.
An even more recent survey of people of all ages for the COVID Collaborative, an advocacy group of national and state health and economic leaders, the NAACP and other groups shows trust in vaccine safety is as low as 14% in Black Americans and 34% in Latinos.
Older adults said they would like recommendations from doctors, health officials, or family and friends — people they trust, according to the Michigan poll. And Black Americans are twice as likely to trust Black messengers versus white messengers, the other survey showed.
"Even if people don't trust doctors in general, they trust their own doctor," said Dr. Preeti Malani, one of the authors of the Michigan survey and chief health officer of the university.
The advantage of groups like the Rochester partnership is that its members are also trusted messengers.
Several weeks ago, Torres-Herbeck said, she talked to a landscaper who didn't wear a mask while working with his business partner. She told him that COVID-19 is a virus and explained how it spreads. He was surprised, and Torres-Herbeck understood. "When I came here 27 years ago, we were not as educated on that," she said. "When I grew up, it was believed that if you walk barefoot you will catch a cold."
Often, she said, public health officials provide directions on how to act and what to do, such as use a mask and clean your hands, but don't explain why.
"That 'why' was missing for him," she said.
Now when she talks to him, he puts a mask on.
In mid-November, Jacobson visited with members of the Rochester partnership via Zoom, part of the group's initial effort to disseminate vaccine information.
Approving a vaccine under emergency use authorization is no less stringent than the normal procedure, he explained. The process has been dramatically sped up and condensed, he said, by the amount of money poured in and newer technology — and by increased FDA resources.
It's not all about disseminating facts, however. Focusing on shared values is key to building trust. So when Adeline Abbenyi, the Mayo Clinic program manager for the Center for Healthy Equity and Community Engagement Research, said her mother, who had never feared vaccines, was hesitant to get a COVID-19 vaccine, Jacobson understood.
"A lot of us are feeling the same way," Jacobson said in that Zoom meeting. "I go into this optimistic that we will have a vaccine that's safe and effective, but I won't use it until I see that evidence" of safety and efficacy the FDA is reviewing.
It's normal for people to hesitate, he said, but that is far different from — and more widespread than — the anti-vaccine movement. Doctors and nurses getting the first doses will likely help many people overcome that hesitancy, he said.
Indeed, one thing that would persuade Torres-Herbeck to be inoculated? Seeing Jacobson get the vaccine, she said.
A Florida taxi driver and his wife had seen enough conspiracy theories online to believe the virus was overblown, maybe even a hoax. So no masks for them. Then they got sick. She died. A college lecturer had trouble refilling her lupus drug after the president promoted it as a treatment for the new disease. A hospital nurse broke down when an ICU patient insisted his illness was nothing worse than the flu, oblivious to the silence in beds next door.
Lies infected America in 2020. The very worst were not just damaging, but deadly.
President Donald Trump fueled confusion and conspiracies from the earliest days of the coronavirus pandemic. He embraced theories that COVID-19 accounted for only a small fraction of the thousands upon thousands of deaths. He undermined public health guidance for wearing masks and cast Dr. Anthony Fauci as an unreliable flip-flopper.
But the infodemic was not the work of a single person.
Anonymous bad actors offered up junk science. Online skeptics made bogus accusations that hospitals padded their coronavirus case numbers to generate bonus payments. Influential TV and radio opinion hosts told millions of viewers that physical distancing was a joke and that states had all of the personal protective equipment they needed (when they didn’t).
It was a symphony of counter-narrative, and Trump was the conductor, if not the composer. The message: The threat to your health was overhyped to hurt the political fortunes of the president.
Every year, PolitiFact editors review the year’s most inaccurate statements to elevate one as the Lie of the Year. The “award” goes to a statement, or a collection of claims, that prove to be of substantive consequence in undermining reality.
It has become harder and harder to choose when cynical pundits and politicians don’t pay much of a price for saying things that aren’t true. For the past month, unproven claims of massive election fraud have tested democratic institutions and certainly qualify as historic and dangerously baldfaced. Fortunately, the constitutional foundations that undergird American democracy are holding.
Meanwhile, the coronavirus has killed more than300,000 in the United States, a crisis exacerbated by the reckless spread of falsehoods.
PolitiFact’s 2020 Lie of the Year: claims that deny, downplay or disinform about COVID-19.
‘I Wanted to Always Play It Down’
On Feb. 7, Trump leveled with book author Bob Woodward about the dangers of the new virus that was spreading across the world, originating in central China. He told the legendary reporter that the virus was airborne, tricky and “more deadly than even your strenuous flus.”
Trump told the public something else. On Feb. 26, the president appeared with his coronavirus task force in the crowded White House briefing room. A reporter asked if he was telling healthy Americans not to change their behavior.
“Wash your hands, stay clean. You don’t have to necessarily grab every handrail unless you have to,” he said, the room chuckling. “I mean, view this the same as the flu.”
Three weeks later, March 19, he acknowledged to Woodward: “To be honest with you, I wanted to always play it down. I still like playing it down. Because I don’t want to create a panic.”
His acolytes in politics and the media were on the same page. Rush Limbaugh told his audience of about 15 million on Feb. 24 that the coronavirus was being weaponized against Trump when it was just “the common cold, folks.” That’s wrong — even in the early weeks, it was clear the virus had a higher fatality rate than the common cold, with worse potential side effects, too.
As the virus was spreading, so was the message to downplay it.
“There are lots of sources of misinformation, and there are lots of elected officials besides Trump that have not taken the virus seriously or promoted misinformation,” said Brendan Nyhan, a government professor at Dartmouth College. “It’s not solely a Trump story — and it’s important to not take everyone else’s role out of the narrative.”
The skeptics cited Centers for Disease Control and Prevention data to claim that only 6% of COVID-19 deaths could actually be attributed to the virus. On Aug. 24, BlazeTV host Steve Deace amplified it on Facebook.
“Here’s the percentage of people who died OF or FROM Covid with no underlying comorbidity,” he said to his 120,000 followers. “According to CDC, that is just 6% of the deaths WITH Covid so far.”
That misrepresented the reality of coronavirus deaths. The CDC had always said people with underlying health problems — comorbidities — were most vulnerable if they caught COVID-19. The report was noting that 6% died even without being at obvious risk.
But for those skeptical of COVID-19, the narrative confirmed their beliefs. Facebook users copied and pasted language from influencers like Amiri King, who had 2.2 million Facebook followers before he was banned. The Gateway Pundit called it a “SHOCK REPORT.”
“I saw a statistic come out the other day, talking about only 6% of the people actually died from COVID, which is very interesting — that they died from other reasons,” Trump told Fox News host Laura Ingraham on Sept. 1.
Fauci, director of the National Institute of Allergy and Infectious Diseases, addressed the claim on “Good Morning America” the same day.
“The point that the CDC was trying to make was that a certain percentage of them had nothing else but just COVID,” he said. “That does not mean that someone who has hypertension or diabetes who dies of COVID didn’t die of COVID-19 — they did.”
Trump retweeted the message from an account that sported the slogans and symbols of QAnon, a conspiracy movement that claims Democrats and Hollywood elites are members of an underground pedophilia ring.
False information moved between social media, Trump and TV, creating its own feedback loop.
“It’s an echo effect of sorts, where Donald Trump is certainly looking for information that resonates with his audiences and that supports his political objectives. And his audiences are looking to be amplified, so they’re incentivized to get him their information,” said Kate Starbird, an associate professor and misinformation expert at the University of Washington.
Weakening the Armor: Misleading on Masks
At the start of the pandemic, the CDC told healthy people not to wear masks, saying they were needed for health care providers on the front lines. But on April 3 the agency changed its guidelines, saying every American should wear non-medical cloth masks in public.
Trump announced the CDC’s guidance, then gutted it.
“So it’s voluntary. You don’t have to do it. They suggested for a period of time, but this is voluntary,” Trump said at a press briefing. “I don’t think I’m going to be doing it.”
Rather than an advance in best practices on coronavirus prevention, face masks turned into a dividing line between Trump’s political calculations and his decision-making as president. Americans didn’t see Trump wearing a mask until a July visit to Walter Reed National Military Medical Center.
In September, the CDC reported a correlation between people who went to bars and restaurants, where masks can’t consistently be worn, and positive COVID-19 test results. Bloggers and skeptical news outlets countered with a misleading report about masks.
On Oct. 13, the story landed on Fox News’ flagship show, “Tucker Carlson Tonight.” During the show, Carlson claimed “almost everyone — 85% — who got the coronavirus in July was wearing a mask.”
“So clearly [wearing a mask] doesn’t work the way they tell us it works,” Carlson said.
That’s wrong, and it misrepresented a small sample of people who tested positive.Public health officials and infectious disease experts have been consistent since April in saying that face masks are among the best ways to prevent the spread of COVID-19.
But two days later, Trump repeated the 85% stat during a rally and at a town hall with NBC’s Savannah Guthrie.
“I tell people, wear masks,” he said at the town hall. “But just the other day, they came out with a statement that 85% of the people that wear masks catch it.”
The Assault on Hospitals
On March 24, registered nurse Melissa Steiner worked her first shift in the new COVID-19 ICU of her southeastern Michigan hospital. After her 13-hour workday caring for two critically ill patients on ventilators, she posted a tearful video.
“Honestly, guys, it felt like I was working in a war zone,” Steiner said. “[I was] completely isolated from my team members, limited resources, limited supplies, limited responses from physicians because they’re just as overwhelmed.”
“I’m already breaking, so for f—’s sake, people, please take this seriously. This is so bad.”
Steiner’s post was one of manyemotionalpleas offered by overwhelmed hospital workers last spring urging people to take the threat seriously. The denialists mounted a counteroffensive.
On March 28, Todd Starnes, a conservative radio host and commentator, tweeted a video from outside Brooklyn Hospital Center. There were few people or cars in sight.
“This is the ‘war zone’ outside the hospital in my Brooklyn neighborhood,” Starnes said sarcastically. The video racked up more than 1.5 million views.
Starnes’ video was one of the first examples of #FilmYourHospital, a conspiratorial social media trend that pushed back on the idea that hospitals had been strained by a rapid influx of coronavirus patients.
Several internet personalities asked people to go out and shoot their own videos. The result: a series of user-generated clips taken outside hospitals, where the response to the pandemic was not easily seen. Over the course of a week, #FilmYourHospital videos were uploaded to YouTube and posted tens of thousands of times on Twitter and Facebook.
Nearly two weeks and more than 10,000 deaths later, Fox News featured a guest who opened a new misinformation assault on hospitals.
Dr. Scott Jensen, a Minnesota physician and Republican state senator, told Ingraham that, because hospitals were receiving more money for COVID-19 patients on Medicare — a result of a coronavirus stimulus bill — they were overcounting COVID-19 cases. He had no proof of fraud, but the cynical story took off.
Trump used the false report on the campaign trail to continue to minimize the death toll.
“Our doctors get more money if somebody dies from COVID,” Trump told supporters at a rally in Waterford, Michigan, on Oct. 30. “You know that, right? I mean, our doctors are very smart people. So what they do is they say, ‘I’m sorry, but, you know, everybody dies of COVID.’”
The Real Fake News: The Plandemic
The most viral disinformation of the pandemic was styled to look as if it had the blessing of people Americans trust: scientists and doctors.
In a 26-minute video called “Plandemic: The Hidden Agenda Behind COVID-19,” a former scientist at the National Cancer Institute claimed the virus was manipulated in a lab, hydroxychloroquine is effective against coronaviruses, and face masks make people sick.
Judy Mikovits’ conspiracies received more than 8 million views, partly credited to the online outrage machine — anti-vaccine activists, anti-lockdown groups and QAnon supporters — that push disinformation into the mainstream. The video was circulated in a coordinated effort to promote Mikovits’ book release.
Around the same time, a similar effort propelled another video of fact-averse doctors to millions of people in only a few hours.
On July 27, Breitbart publisheda clip of a press conference hosted by a group called America’s Frontline Doctors in front of the U.S. Supreme Court. Looking authoritative in white lab coats, these doctors discouraged mask-wearing and falsely said there was already a cure in hydroxychloroquine, a drug used to treat rheumatoid arthritis and lupus.
Trump, who had been talking up the drug since March and claimed to be taking it himself as a preventive measure in May, retweeted clips of the event before Twitter removed them as misinformation about COVID-19. He defended the “very respected doctors” in a July 28 press conference.
When Olga Lucia Torres, a lecturer at Columbia University, heard Trump touting the drug in March, she knew it didn’t bode well for her own prescription. Sure enough, the misinformation led to a run on hydroxychloroquine, creating a shortage for Americans like her who needed the drug for chronic conditions.
A lupus patient, she went to her local pharmacy to request a 90-day supply of the medication. But she was told they were granting only partial refills. It took her three weeks to get her medication through the mail.
“What about all the people who were silenced and just lost access to their staple medication because people ran to their doctors and begged to take it?” Torres said.
No Sickbed Conversion
On Sept. 26, Trump hosted a Rose Garden ceremony to announce his nominee to replace the late Ruth Bader Ginsburg on the U.S. Supreme Court. More than 150 people attended the event introducing Amy Coney Barrett. Few wore masks, and the chairs weren’t spaced out.
In the weeks afterward, more than two dozenpeople close to Trump and the White House became infected with COVID-19. Early on Oct. 2, Trump announced his positive test.
Those hoping the experience and Trump’s successful treatment at Walter Reed might inform his view of the coronavirus were disappointed. Trump snapped back into minimizing the threat during his first moments back at the White House. He yanked off his mask and recorded a video.
“Don’t let it dominate you. Don’t be afraid of it,” he said, describing experimental and mostly out-of-reach therapies he received. “You’re going to beat it.”
In Trump’s telling, his hospitalization was not the product of poor judgment about large gatherings like the Rose Garden event, but the consequence of leading with bravery. Plus, now, he claimed, he had immunity to the virus.
On the morning after he returned from Walter Reed, Trump tweeted a seasonal flu death count of 100,000 lives and added that COVID-19 was “far less lethal” for most populations. More false claims at odds with data — the U.S. average for flu deaths over the past decade is 36,000, and experts said COVID-19 is more deadly for each age group over 30.
When Trump left the hospital, the U.S. death toll from COVID-19 was more than 200,000. Today it is more than 300,000. Meanwhile, this month the president has gone ahead with a series of indoor holiday parties.
The Vaccine War
The vaccine disinformation campaign started in the spring but is still underway.
In April, blogs and social media users falsely claimed Democrats and powerful figures like Bill Gates wanted to use microchips to track which Americans had been vaccinated for the coronavirus. Now, false claims are taking aim at vaccines developed by Pfizer and BioNTech and other companies.
A blogger claimed Pfizer’s head of research said the coronavirus vaccine could cause female infertility. That’s false.
An alternative health website wrote that the vaccine could cause an array of life-threatening side effects, and that the FDA knew about it. The list included all possible — not confirmed— side effects.
Social media users speculated that the federal government would force Americans to receive the vaccine. Neither Trump nor President-elect Joe Biden has advocated for that, and the federal government doesn’t have the power to mandate vaccines, anyway.
As is often the case with disinformation, the strategy is to deliver it with a charade of certainty.
“People are anxious and scared right now,” said Dr. Seema Yasmin, director of research and education programs at the Stanford Health Communication Initiative. “They’re looking for a whole picture.”
Most polls have shown far from universal acceptance of vaccines, with only 50% to 70% of respondents willing to take the vaccine. Black and Hispanic Americans are even less likely to take it so far.
Meanwhile, the future course of the coronavirus in the U.S. depends on whether Americans take public health guidance to heart. The Institute for Health Metrics and Evaluation projected that, without mask mandates or a rapid vaccine rollout, the death toll could rise to more than 500,000 by April 2021.
“How can we come to terms with all that when people are living in separate informational realities?” Starbird said.
PolitiFact staff researcher Caryn Baird contributed to this report.
There is no analogue in recent U.S history to the scale of death brought on by the coronavirus, which now runs unchecked in countless towns, cities and states.
This article was published on Tuesday, December 15, 2020 in Kaiser Health News.
By Will Stone
More than 300,000 people have died from COVID-19 in the United States.
It is the latest sign of a generational tragedy — one still unfolding in every corner of the country — that leaves in its wake an expanse of grief that cannot be captured in a string of statistics.
"The numbers do not reflect that these were people," said Brian Walter, of New York City, whose 80-year-old father, John, died from COVID-19. "Everyone lost was a father or a mother, they had kids, they had family, they left people behind."
There is no analogue in recent U.S history to the scale of death brought on by the coronavirus, which now runs unchecked in countless towns, cities and states.
"We're seeing some of the most deadly days in American history," said Dr. Craig Spencer, director of Global Health in Emergency Medicine at NewYork-Presbyterian/Columbia University Medical Center.
During the past two weeks, COVID-19 was the leading cause of death in the U.S., outpacing even heart disease and cancer.
"That should be absolutely stunning," Spencer said. And yet the most deadly days of the pandemic may be to come, epidemiologists predict.
Even with a rapid rollout of vaccines, the U.S. may reach a total of more than half a million deaths by spring, said Ali Mokdad of the Institute for Health Metrics and Evaluation at the University of Washington.
Some of those deaths could still be averted. If everyone simply began wearing face masks, more than 50,000 lives could be saved, IHME's model shows. And physical distancing could make a difference too.
No other country has come close to the calamitous death toll in the U.S. And the disease has amplified entrenched inequalities. Blacks and Hispanics/Latinos are nearly three times more likely to die from COVID-19 than whites.
"I'm really amazed at how we have this sense of apathy," said Dr. Gbenga Ogedegbe, a professor of medicine and population health at New York University Grossman School of Medicine. He said there's evidence that socioeconomic factors, not underlying health problems, explain the disproportionate share of deaths.
The disease, he said, reveals "the chronic neglect of Black and brown communities" in this country.
Though the numbers are numbing, for bereaved families and for front-line workers who care for people in their dying moments, every life is precious.
Here are reflections from people who've witnessed this loss — how they are processing the grief and what they wish the rest of America understood.
'There Are Things We Can Do to Still Make a Difference'
Darrell Owens, a doctor of nursing practice in Seattle, was startled to learn recently that he had signed more death certificates for COVID-19 than anyone else in Washington.
"I'm feeling much more anger and frustration than I did before because much of what we're dealing with now was preventable," Owens said.
"We're all in this great big storm, but some people are in a yacht and some people are on a cruise ship and some people are on a raft," he added. "We're not all in this together."
Owens still finds moments of grace and meaning as he cares for the dying.
"The other day, there was a lady I was taking care of who'd come from a local nursing home and it was very clear that she was nearing the end," Owens said. "I just picked up her hand. I sat there. I held her hand for about 25 minutes until she took her last breath."
He stepped out of the room and called the patient's daughter.
"It made such a difference for her that her mom was not alone," he said. "What an incredible gift that she gave me and that I was able to give her daughter. So there are things that we can do to still make a difference."
'It's Not a Joke. It's Not a Hoax.'
Since his father died of COVID-19 in the spring, Brian Walter of Queens, New York, has helped run a support group on Facebook for people who've lost family and friends to COVID-19.
It's helped him grieve his father John, whom he describes as a very loving man dedicated to his autistic grandson and to running a youth program for teenagers.
"It's been lifesaving in a lot of ways," Walter said. "Together, we face a lot of issues since we are grieving in isolation. But at the same time, we're also dealing with people that openly tell us that this is not a real condition, that this is not a real issue."
Some in their group admit they denied the severity of the virus and shunned precautions until it was too late.
"It's not a joke. It's not a hoax, and you will not understand how horrible this is until it enters your family and takes away someone," he said.
All of this complicates the grief, but it has also led Walter and others in his group to speak out and share their stories, so that numbers don't obscure the actual people who were leading full lives before dying from COVID-19.
"I know what it's like to have to say goodbye to somebody over a Zoom call and to not have a funeral," Walter said.
'300,000 Stories That Got Shut Down Too Quickly'
Martha Phillips, an ER nurse who took assignments in New York and Texas in the spring and summer, said there is one patient who has become almost a stand-in for the grief of the many whose deaths she witnessed.
It was the very last COVID patient she cared for in Houston.
"I reached down to just adjust her oxygen tubing just a little bit," Phillips recalled. "And she looks up at me and she sees me through my goggles and my mask and my shield and meets my eyes and she goes, 'Do you think I'm going to get better?'"
"What do you say to someone who's not ready to die? Who has so much to live for, but got this and now they're trapped?"
Two months later, Phillips discovered the woman's obituary online.
"That one was the hardest," she said. "But there's 300,000 people who had time left that was stolen from them; 300,000 stories that got shut down too quickly."
'This Is Worse Than Being in War'
ER physician Dr. Cleavon Gilman, a veteran of the Iraq War, said it's still hard to communicate the brutality of a disease that kills people in the privacy of a hospital wing.
When Gilman was in New York City during the spring surge, he never imagined the U.S. would be losing thousands of people each day to COVID-19 so many months later.
"That 300,000 Americans would be dead and life would go on and people would not have empathy for their fellow Americans," he said. "I can tell you this is worse than being in war."
The enemy is invisible, he said, the war zone is everywhere, and many refuse to take the most simple actions to combat the virus, even as morgues fill up in their own community.
Throughout the pandemic, Gilman, who is now working in Yuma, Arizona, has shared photos and stories of people who've died from COVID-19 each day on social media. "It's really important to honor them," he said.
This story is from a reporting partnership with NPR and KHN.
If clinical trials for COVID-19 vaccines aren't expanded soon to include children, it's unlikely that even kids in their teens will be vaccinated in time for the next school year.
The hurdle is that COVID vaccine makers are only in the early stages of testing their products on children. The Pfizer vaccine authorized for use by the Food and Drug Administration on Friday was greenlighted only for people ages 16 and up. Moderna just started trials for 12- to 17-year-olds for its vaccine, likely to be authorized later this month.
It will take months to approve use of the vaccines for middle- and high school-aged kids, and months more to test them in younger children. But some pediatricians say that concerns about the safety of the front-runner vaccines make the wait worthwhile.
Although most pediatricians believe the eventual vaccination of children will be crucial to subduing the COVID virus, they're split on how fast to move toward that, says Dr. James Campbell, professor of pediatrics at the University of Maryland School of Medicine's Center for Vaccine Development and Global Health. Campbell and colleagues say it's a matter of urgency to get the vaccines tested in kids, while others want to hold off on those trials until millions of adults have been safely vaccinated.
Much of the debate centers on two issues: the degree of harm COVID-19 causes children, and the extent to which children are spreading the virus to their friends, teachers, parents and grandparents.
COVID-19's impact on children represents a tiny fraction of the suffering and death experienced by vulnerable adults. Yet it would qualify as a pretty serious childhood disease, having caused 154 deaths and more than 7,500 hospitalizations as of Dec. 3 among people 19 and younger in the United States. Those numbers rank it as worse than a typical year of influenza, and worse than diseases like mumps or hepatitis B in children before the vaccination era.
Studies thus far show that 1%-2% of children infected with the virus end up requiring intensive care, Dr. Stanley Plotkin, professor emeritus of pediatrics at the University of Pennsylvania, told a federal panel. That's in line with the percentage who become gravely ill as result of infections like Haemophilus influenza type B, or Hib, for which doctors have vaccinated children since the 1980s, he pointed out.
Campbell, who with colleagues has developed a plan for how to run pediatric COVID vaccine trials, points out that "in a universe where COVID mainly affected children the way it's affecting them now, and we had potential vaccines, people would be clamoring for them."
The evidence that teens can transmit the disease is pretty clear, and transmission has been documented in children as young as 8. Fear of spread by children has been enough to close schools, and led the American Academy of Pediatrics to demandthat children be quickly included in vaccine testing.
"The longer we take to start kids in trials, the longer it will take them to get vaccinated and to break the chains of transmission," said Dr. Yvonne Maldonado, a professor of pediatrics at Stanford University who chairs the AAP's infectious disease committee. "If you want kids to go back to school and not have the teachers union terrified, you have to make sure they aren't a risk."
Other pediatricians worry that early pediatric trials could backfire. Dr. Cody Meissner, chief of pediatric infectious diseases at Tufts Medical Center and a member of the FDA's advisory committee on vaccines, is worried that whatever causes Multisystem Inflammatory Syndrome in Children, a rare but frightening COVID-related disorder, might also be triggered, however rarely, by vaccination.
Meissner abstained from the committee's vote Thursday that supported, by a 17-4 vote, an emergency authorization of the Pfizer vaccine for people 16 and older.
"I have trouble justifying it for children so unlikely to get the disease," he said during debate on the measure.
But panel member Dr. Ofer Levy, director of the Precision Vaccines Program at Boston Children's Hospital, said the 16-and-up authorization would speed the vaccine's testing in and approval for younger children. That is vital for the world's protection from COVID-19, he said, since in the United States and most places "most vaccines are delivered early in life."
While vaccines given to tens of thousands of people so far appear to be safe, the lack of understanding of the inflammatory syndrome means that children in any trials should be followed closely, said Dr. Emily Erbelding, director of the Division of Microbiology and Infectious Diseases at the National Institute of Allergy and Infectious Diseases.
Under a 2003 law, vaccine companies are required eventually to test all their products on children. By late last month, Pfizer had vaccinated approximately 100 children 12-15 years of age, said spokesperson Jerica Pitts.
Moderna has started enrolling 3,000 children 12 and over in another clinical trial, and other companies have similar plans. Assuming the trials show the vaccines are safe and provide a good immune response, future tests could include progressively younger children, moving to, say, 6- to 12-year-olds next, then 2- to 6-year-olds. Eventually, trials could include younger toddlers and infants.
Similar stepdown approaches were taken to test vaccines against human papillomavirus (HPV), influenza and other diseases in the past, Erbelding noted. Such trials are easiest to conduct when researchers know that a measurable immune response, like antibody levels in the blood, translates to effective protection against disease. Armed with such knowledge, they can see whether children were protected without them having to be exposed to the virus. Federal scientists hope to get that data from the Moderna and Pfizer adult vaccine trials, she said.
Vaccine trials geared to tweens or younger children may involve testing half-doses, which, if protective, would require less vaccine and might cause fewer incidents of sore arms and fevers that afflicted many who've received the Pfizer and Moderna vaccines, Campbell said.
But unless additional studies begin quickly, the window for having an FDA-authorized vaccine available before the next school year "will be closed even for our oldest children," said Dr. Evan Anderson, a pediatrics professor at Emory University. "Our younger children are almost certainly going into next school year without a vaccine option available for them."
In the meantime, teachers are likely to be high on the priority list for vaccination. Protecting school staff could allow more schools to reopen even if most children can't be vaccinated, Erbelding said.
Eventually, if the SARS-CoV-2 virus remains in circulation, governments may want to mandate childhood vaccination against the virus to protect them as they grow up and protect society as a whole, Plotkin said.
In the 1960s, Plotkin invented the rubella vaccine that has been given to hundreds of millions of children since. Like COVID-19, rubella, or German measles, is not usually a serious illness for children. But congenital rubella syndrome afflicted babies in the womb with blindness, deafness, developmental delays and autism. Immunizing toddlers, which, in turn, protects their pregnant mothers, has indirectly prevented hundreds of thousands of such cases.
"We don't want to use children to protect everyone in the community," said Campbell. "But when you can protect both children and their community, that's important."
And while a coronavirus infection may not be bad for most children, missed school, absent friends and distanced families have caused them immense suffering, he said.
"It's a huge burden on a child to have their entire world flipped around," Campbell said. "If vaccinating could help to flip it back, we should begin testing to see if that's possible."
In the final weeks before the Nov. 3 election, supporters of a down-in-the-weeds effort to overturn a tax law in Colorado received a cascade of big checks, for a grand total of more than $2 million.
All came from Kent Thiry, the former CEO of DaVita, one of the largest kidney care companies in the country. This was not the first time he donated big to a ballot initiative aimed at tweaking the nitty-gritty details of how Colorado functions. Nor will it be the last.
Thiry hasgiven at least $5.9 million to Colorado ballot measures since 2011 — and all of them won, according to a KHN review of Colorado campaign finance data. According to data from the National Institute on Money in Politics, Thiry's donations to ballot measures in that state are second only to those of billionaire Pat Stryker, an heiress whose grandfather founded a medical technology company. Campaign finance records show that before that, he gave to ballot issue committees in California, where he used to live, dating to at least 2007.
It's the same playbook his former company has successfully used in California. As KHN has reported, in 2018 DaVita was among several companies to break an industry record in campaign spending for a ballot measure by any one side in California. This year, the industry came close to breaking that record to defeat a measure that would have further regulated dialysis clinics and that DaVita said would have limited access to care.
"Wealthy individuals have been pouring money into ballot measures, even seemingly unrelated to their industry, for over a century," Daniel Smith, a political scientist studying direct democracy at the University of Florida, wrote in an email to KHN.
Given that healthcare is a $3.6 trillion industry, its top executives are among the ranks of those who can have an enormous impact in ballot measure politics. This year, Kent Thiry and Mike Fernandez, chairman and CEO of private equity firm MBF Healthcare Partners, were among the 19 individuals or couples who spent $1 million or more on ballot issue campaigns this year, according to Bloomberg. In previous elections, medical equipment company owner Loren Parks has also given big money to ballot initiatives.
Overall, those in the health industry have spent more on ballot measures in Colorado than in any other state except Missouri and California, according to data from the National Institute on Money in Politics, and that's largely due to Thiry.
"He really has become the 800-pound gorilla of the ballot initiative process in Colorado," said Josh Penry, a Republican campaign strategist in Denver who has worked with Thiry, including on a ballot measure campaign Thiry helped fund. "He wields more power in an informal way than virtually all the elected officials, if you look at the impact he's had."
Even though Thiry and his wife, Denise O'Leary, a former venture capitalist on the board of directors of medical device company Medtronic, have madehefty earnings from healthcare, Thiry's ballot initiative donations as an individual have nothing to do with the industry.
"I prefer things that have systemic impact," said Thiry. Measures he has bankrolled have eliminated the caucus system for presidential primaries, brought unaffiliated voters into the primaries and created a system intended to eliminate gerrymandering.
"Democracy is not a spectator sport," he said.
Thiry previously donated to ballot measure committees in California, to prevent changes to term limits and to create a system for redistricting led jointly by Democrats, Republicans and citizens unaffiliated with a political party.
After moving his company's headquarters from Los Angeles to Denver in 2010, he began backing ballot measures in his new state, too, with equal success and bigger sums, jumping from the tens of thousands to the millions. He spent more than $2 million backing a pair of measures to allow unaffiliated voters to participate in primaries.
In 2018, while his company was helping break an election spending record to defeat a California measure that would have cappedthe industry's profits, Thiry was putting more than $1.2 million toward redistricting efforts in Colorado very similar to the one he backed in his previous home state to help reduce gerrymandering.
His latest donations went to a measure that successfully overturned a tax law from the 1980s that may have helped Colorado homeowners, but which critics saidleft public services like education and fire districts underfunded in some rural areas.
Thiry doesn't just shell out cash. As the online newspaper The Colorado Independent has pointed out, Thiry's offices played a large role in bringing two warring groups with different ideas about redistricting to the same table. His efforts tend to revolve around raising the power of unaffiliated voters, who make up about 40% of Colorado's active voters, according to state data.
Fernandez, the private equity billionaire, said he has similar motivations. He donated $7.3 million to a Florida initiative to change how primaries work in that state and bring unaffiliated voters like himself into the fold.
"I've never spent so much money [on] something that I have no business reason to be in at all," he said.
The effort was, he said, nearly "a one-man show" in terms of financing. But it still failed, garnering 57% of votes when it needed 60% to pass. Fernandez said he'll try again in 2022.
"I come from a country where you can see that control of a government by a single party is deadly," said Fernandez, who was born in Cuba. "Florida has been controlled by the Republican Party for the last three decades. And when I was a Republican, that was great."
But, he said, it quickly became clear that bringing the issue to legislators was a dead end. That's expected, according to John Matsusaka, executive director of the Initiative and Referendum Institute at the University of Southern California. Ballot initiatives are a natural route to tweak electoral machinery, he said, because legislators have a conflict of interest on issues like gerrymandering and term limits.
"I don't look at ballot propositions as a way to drive a progressive agenda or conservative agenda or any sort of agenda," he said. "I view it as a way to put the people in control. And they can go where they want to go."
Even if that means eroding their own power a little. One of the first initiatives Thiry donated to in Colorado is something Matsusaka considers "anti-democracy" — an effort called Raise the Bar, a ballot initiative about ballot initiatives. Itrequired petitioners to get signatures from every corner of the state to put an initiative on the ballot. Some view this as problematic.
"You have to now collect signatures in every senate district of Colorado," said Corrine Rivera Fowler, director of policy and legal advocacy with the Ballot Initiative Strategy Center, a national organization that supports progressive ballot initiatives. "That's a tremendous undertaking for grassroots communities."
Thiry, meanwhile, intends to take what he's learned in Colorado and apply it elsewhere. He said he's getting more involved in several national democracy reform groups, including Unite America, an effort to break what's been called the "doom loop" of partisanship. Thiry said he hopes to help create "a tidal tsunami of political momentum."
"One of my goals is to have this democracy reform energy in places like Colorado — or elsewhere — move from being an ad hoc collection of activist projects to a true movement," he said. "Kind of like the civil rights movement, kind of like the gay marriage movement, and like the #MeToo movement or Black Lives Matter."
He no longer works for DaVita, after stepping down as executive chairman earlier this year.
"I have no title anymore. Just 'citizen.' It's a title I wear with great pride and energy," he said.
As for the next measure Thiry will back, he's open to recommendations.
[Update: This article was revised at 10:15 a.m. ET on Dec. 14, 2020, to provide more context on billionaire Pat Stryker.]