Scientists Examine Kids' Unique Immune Systems as More Fall Victim to COVID

KFF Health News, September 17, 2021

Until the delta variant laid siege this summer, nearly all children seemed to be spared from the worst ravages of COVID, for reasons scientists didn't totally understand.

This article was published on Friday, September 17, 2021 in Kaiser Health News.

By Liz Szabo

Eighteen months into the COVID-19 pandemic, with the delta variant fueling a massive resurgence of disease, many hospitals are hitting a heartbreaking new low. They're now losing babies to the coronavirus.  

The first reported COVID-related death of a newborn occurred in Orange County, Florida, and an infant has died in Mississippi. Merced County in California lost a child under a year old in late August.

"It's so hard to see kids suffer," said Dr. Paul Offit, an expert on infectious diseases at Children's Hospital of Philadelphia, which — like other pediatric hospitals around the country — has been inundated with COVID patients.

Until the delta variant laid siege this summer, nearly all children seemed to be spared from the worst ravages of COVID, for reasons scientists didn't totally understand.

Although there's no evidence the delta variant causes more severe disease, the virus is so infectious that children are being hospitalized in large numbers — mostly in states with low vaccination rates. Nearly 30% of COVID infections reported for the week that ended Sept. 9 were in children, according to the American Academy of Pediatrics.

Doctors diagnosed more than 243,000 cases in children in the same week, bringing the total number of COVID infections in kids under 18 since the onset of the pandemic to 5.3 million, with at least 534 deaths.

Experts say it's a question of basic math. "If 10 times as many kids are infected with delta than previous variants, then, of course, we're going to see 10 times as many kids hospitalized," said Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at the Seattle Children's Research Institute.

But the latest surge gives new urgency to a question that has mystified scientists throughout the pandemic: What protects most children from becoming seriously ill? And why does that protection sometimes fail?

"This is an urgent and complex question," said Dr. Bill Kapogiannis, senior medical officer and infectious-disease expert at the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

"We are doing everything we can to address it, using all the tools we have available," Kapogiannis said. "Answers can't come soon enough."

Investigating Immune Systems

For much of the pandemic, doctors could only guess why children's immune systems were so much more successful at rebuffing the coronavirus.

Despite the alarming number of hospitalized children in the recent surge, young people are much less likely to become critically ill. Fewer than 1% of children diagnosed with COVID are hospitalized and about 0.01% die — rates that haven't changed in recent months, according to the American Academy of Pediatrics. Most children shrug off the virus with little more than a sniffle.

A growing body of evidence suggests that kids' innate immune systems usually nip the infection early on, preventing the virus from gaining a foothold and multiplying unchecked, said Dr. Lael Yonker, an assistant professor of pediatrics at Massachusetts General Hospital.

In a series of studies published in the past year, the husband-and-wife team of Drs. Betsy and Kevan Herold found that children have particularly strong mucosal immunity, so called because the key players in this system are not in the blood but in the mucous membranes that line the nose, throat and other parts of the body that frequently encounter germs.

These membranes act like the layered stone walls that protected medieval cities from invaders. They're made of epithelial cells — these also line many internal organs — which sit side by side with key soldiers in the immune system called dendritic cells and macrophages, said Betsy Herold, chief of the division of pediatric infectious diseases at the Albert Einstein College of Medicine.

Significantly, these cells are covered in proteins — called pattern recognition receptors — that act like sentries, continuously scanning the landscape for anything unusual. When the sentries notice something foreign — like a new virus — they alert cells to begin releasing proteins called interferons, which help coordinate the body's immune response.

In an August study in Nature Biotechnology, Roland Eils and his colleagues at Germany's Berlin Institute of Health found that kids' upper airways are "pre-activated" to fight the novel coronavirus. Their airways are teaming with these sentries, including ones that excel at recognizing the coronavirus.

That allows kids to immediately activate their innate immune system, releasing interferons that help shut down the virus before it can establish a foothold, Eils said.

In comparison, adults have far fewer sentinels on the lookout and take about two days to respond to the virus, Eils said. By that time, the virus may have multiplied exponentially, and the battle becomes much more difficult.

When innate immunity fails to control a virus, the body can fall back on the adaptive immune system, a second line of defense that adapts to each unique threat. The adaptive system creates antibodies, for example, tailored to each virus or bacterium the body encounters.

While antibodies are some of the easiest pieces of the immune response to measure, and therefore often cited as proxies for protection, kids don't seem to need as many to fight COVID, Betsy Herold said. In fact, the Herolds' research shows that children with COVID have fewer neutralizing antibodies than adults. (Both kids and adults usually make enough antibodies to thwart future coronavirus infections after natural infection or vaccination.)

While the adaptive immune system can be effective, it can sometimes cause more harm than good.

Like soldiers who kill their comrades with friendly fire, a hyperactive immune system can cause collateral damage, triggering an inflammatory cascade that tramples not just viruses, but also healthy cells throughout the body.

In some COVID patients, uncontrolled inflammation can lead to life-threatening blood clots and acute respiratory distress syndrome, which occurs when fluid builds up in the air sacs of the lung and makes it difficult to breathe, Betsy Herold said. Both are common causes of death in adult COVID patients.

Because kids typically clear the coronavirus so quickly, they usually avoid this sort of dangerous inflammation, she said.

Research shows that healthy children have large supplies of a type of peacekeeper cell, called innate lymphoid cells, that help calm an overactive immune system and repair damage to the lungs, said Dr. Jeremy Luban, a professor at the University of Massachusetts Medical School.

Kids are born with lots of these cells, but their numbers decline with age. And both children and adults who are sick with COVID tend to have fewer of these repair cells, Luban said.

Men also have fewer repair cells than women, which could help explain why males have a higher risk of dying from COVID than females.

Both children and adults can develop "long COVID," the lingering health issues experienced by about 10% of younger adults and up to 22% of those 70 and older. Studies suggest that 4% to 11% of kids have persistent symptoms.

Unanswered Questions

Scientists have fewer clues about what goes wrong in certain children with COVID, said Kevan Herold, who teaches immunobiology at the Yale School of Medicine.

Research suggests that children have more robust innate immune systems than adults because they have experienced so many recent respiratory infections, within their first few years, which may prime their immune systems for subsequent attacks.

But not all children shrug off COVID so easily, Eils said. Newborns haven't been alive long enough to prime their immune systems for battle. Even toddlers may fail to mount a strong response, he said.

At Children's Hospital New Orleans, half of COVID patients are under 4, said Dr. Mark Kline, a specialist in infectious diseases and physician-in-chief.

"We've had babies as young as 7 weeks, 9 weeks old in the ICU on ventilators," Kline said. "We had a 3-month-old who required ECMO," or extracorporeal membrane oxygenation, in which the patient is connected to a machine similar to the heart-lung bypass machine used in open-heart surgery.

Even previously healthy children sometimes die from respiratory infections, from COVID to influenza or respiratory syncytial virus.

But studies have found that 30% to 70% of children hospitalized with COVID had underlying conditions that increase their risk, such as Down syndrome, obesity, lung disease, diabetes or immune deficiencies. Premature babies are also at higher risk, as are children who've undergone cancer treatment.

One thing hospitalized kids have in common is that almost none are vaccinated, said Dr. Mary Taylor, chair of pediatrics at the University of Mississippi Medical Center.

"There's really no way to know which child with COVID will get a cold and be just fine and which child will be critically ill," Taylor said. "It's just a very helpless sensation for families to feel like there is nothing they can do for their child."

Although scientists have identified genetic mutations associated with severe COVID, these variants are extremely rare.

Scientists have had more success illuminating why certain adults succumb to COVID.

Some cases of severe COVID in adults, for example, have been tied to misguided antibodies that target interferons, rather than the coronavirus. An August study in ScienceImmunology reported that such "autoantibodies" contribute to 20% of COVID deaths.

Autoantibodies are very rare in children and young adults, however, and unlikely to explain why some youngsters succumb to the disease, said study co-author Dr. Isabelle Meyts, a pediatric immunologist at the Catholic University of Leuven in Belgium.

Although hospitalizations are declining nationwide, some of the most serious consequences of infection are only now emerging.

Two months into the delta surge, hospitals throughout the South are seeing a second wave of children with a rare but life-threatening condition called multisystem inflammatory syndrome, or MIS-C.

Unlike kids who develop COVID pneumonia — the major cause of hospitalizations among children — those with MIS-C typically have mild or asymptomatic infections but become very ill about a month later, developing symptoms such as nausea, vomiting, a rash, fever and diarrhea. Some develop blood clots and dangerously low blood pressure. More than 4,661 children have been diagnosed with MIS-C and 41 have died, according to the Centers for Disease Control and Prevention.

Although scientists still don't know the exact cause of MIS-C, research by Yonker of Massachusetts General and others suggests that viral particles may leak from the gut into the bloodstream, causing a system reaction throughout the body.

It's too soon to tell whether children who survive MIS-C will suffer lasting health problems, said Dr. Leigh Howard, a specialist in pediatric infectious diseases at Vanderbilt University Medical Center.

Although an August study in The Lancet shows that delta doubles the risk of hospitalization in adults, scientists don't know whether that's true for kids, said Dr. Anthony Fauci, the country's top infectious-disease official.

"We certainly don't know at this point whether children have more severe disease, but we're keeping our eye on it," he said.

To protect children, Fauci urged parents to vaccinate themselves and children age 12 and up. As for children too young for COVID shots, "the best way to keep them safe is to surround them by people who are vaccinated."

Liz Szabo: lszabo@kff.org, @LizSzabo

COVID-Overwhelmed Hospitals Postpone Cancer Care and Other Treatment

KFF Health News, September 17, 2021

OHSU hospital, Oregon's only public academic medical center, has had to postpone numerous surgeries and procedures in the wake of the delta surge of the pandemic.

This article was published on Friday, September 17, 2021 in Kaiser Health News.

By Erik Neumann, Jefferson Public Radio  

It's a bad time to get sick in Oregon. That's the message from some doctors, as hospitals fill up with COVID-19 patients and other medical conditions go untreated.

Charlie Callagan looked perfectly healthy sitting outside recently on his deck in the smoky summer air in the small Rogue Valley town of Merlin, in southern Oregon. But Callagan, 72, has a condition called multiple myeloma, a blood cancer of the bone marrow.

"It affects the immune system; it affects the bones," he said. "I had a PET scan that described my bones as looking 'kind of Swiss cheese-like.'"

Callagan is a retired National Park Service ranger. Fifty years ago, he served in Vietnam. This spring, doctors identified his cancer as one of those linked to exposure to Agent Orange, the defoliant used during the war.

In recent years, Callagan has consulted maps showing hot spots where Agent Orange was sprayed in Vietnam.

"It turns out the airbase I was in was surrounded," he said. "They sprayed all over."

A few weeks ago, Callagan was driving the nearly four-hour trek to Oregon Health & Science University in Portland for a bone marrow transplant, a major procedure that would have required him to stay in the hospital for a week and remain in the Portland area for tests for an additional two weeks. On the way, he got a call from his doctor.

"They're like, 'We were told this morning that we have to cancel the surgeries we had planned,'" he said.

Callagan's surgery was canceled because the hospital was full. That's the story at many hospitals in Oregon and in other states where they've been flooded with COVID patients.

OHSU spokesperson Erik Robinson said the hospital, which is the state's only public academic medical center and serves patients from across the region, has had to postpone numerous surgeries and procedures in the wake of the delta surge of the pandemic. "Surgical postponements initially impacted patients who needed an overnight hospital stay, but more recently has impacted all outpatient surgeries and procedures," Robinson wrote.

Callagan said his bone marrow transplant has not yet been rescheduled. 

Such delays can have consequences, according to Dr. Mujahid Rizvi, who leads the oncology clinic handling Callagan's care.

"With cancer treatment, sometimes there's a window of opportunity where you can go in and potentially cure the patient," Rizvi said. "If you wait too long, the cancer can spread. And that can affect prognosis and can make a potentially curable disease incurable."

Such high stakes for delaying treatment at hospitals right now extends beyond cancer care.

"I've seen patients get ready to have their open-heart surgery that day. I've seen patients have brain tumor with visual changes, or someone with lung cancer, and their procedures are canceled that day and they have to come back another day," said Dr. Kent Dauterman, a cardiologist and co-director of the regional cardiac center in Medford, Oregon. "You always hope they come back."

In early September, Dauterman said, the local hospital had 28 patients who were waiting for open-heart surgery, 24 who needed pacemakers, and 22 who were awaiting lung surgeries. During normal times, he said, there is no wait.

"I don't want to be dramatic — it's just there's plenty of other things killing Oregonians before this," Dauterman said.

Right now, the vast majority of patients in Oregon hospitals with COVID are unvaccinated, about five times as many as those who got the vaccine, according to the Oregon Health Authority. COVID infections are starting to decline from the peak of the delta wave. But even in non-pandemic times, there's not a lot of extra room in Oregon's healthcare system.

"If you look at the number of hospital beds per capita, Oregon has 1.7 hospital beds per thousand population. That's the lowest in the country," said Becky Hultberg, CEO of the Oregon Association of Hospitals and Health Systems.

A new study focused on curtailing nonemergency procedures looked back at how Veterans Health Administration hospitals did during the first pandemic wave. It found that the VA health system was able to reduce elective treatments by 91%.

It showed that stopping elective procedures was an effective tool to free up beds in intensive care units to care for COVID patients. But the study didn't look at the consequences for those patients who had to wait.

"We clearly, even in hindsight, made the right decision of curtailing elective surgery," said Dr. Brajesh Lal, a professor of surgery at the University of Maryland School of Medicine and the study's lead author. "But we as a society have not really emphatically asked the question 'At what price in the long term?'"

He said they won't know that without more long-term research.

At his home in southern Oregon, Charlie Callagan said he doesn't consider his bone-marrow transplant as urgent as what some people are facing right now.

"There's so many other people who are being affected," he said. "People are dying waiting for a hospital bed. That just angers me. It's hard to stay quiet now."

He said it's hard to be sympathetic for the COVID patients filling up hospitals, when a simple vaccine could have prevented most of those hospitalizations.

This story is from a reporting partnership that includes Jefferson Public Radio, NPR and Kaiser Health News. 

Leader of California's Muscular Obamacare Exchange to Step Down

KFF Health News, September 17, 2021

As executive director of Covered California, Peter Lee has worked closely with the administrations of Democratic presidents Barack Obama and Joe Biden to expand health coverage to millions of people.

This article was published on Friday, September 17, 2021 in Kaiser Health News.

By Bernard J. Wolfson and Angela Hart

 Peter Lee, who has steered California's Affordable Care Act marketplace since late 2011 and helped mold it into a model of what the federal healthcare law could achieve, announced Thursday he will leave his post in March.

As executive director of Covered California, Lee has worked closely with the administrations of Democratic presidents Barack Obama and Joe Biden to expand health coverage to millions of people who don't get it through an employer or government program, most of them aided by income-based financial assistance from the state or federal government. Over 1.6 million people are now enrolled in plans through the exchange, which has covered 5.3 million Californians since it started selling health plans.

Lee lobbied fiercely to fight efforts by the Trump administration and Republicans to repeal the ACA, known popularly as Obamacare. Those efforts appear dead following the U.S. Supreme Court's decision in June to uphold the law for the third time.

"The really terrific thing, and you can't say this of every leader, is that Peter is leaving the organization in a position where it is still poised to have the success it has had recently," said Dr. Mark Ghaly, who chairs the Covered California board and is secretary of the California Health and Human Services Agency.

The board will launch a national search for Lee's successor. The long runway to his departure "gives us time to cast a wide net and find a leader who understands the history of this organization but also has the vision of where we can go," Ghaly said.

Lee said he was leaving largely for personal reasons, including the deaths of his mother, Sharon Girdner, and his uncle, Dr. Philip R. Lee. The latter was part of the original Medicare brain trust under President Lyndon Johnson, and the younger Lee described him as a health policy mentor. Lee's father and grandfather were also deeply involved in healthcare policy.

The past two years have prodded him to reflect, he said. "COVID reminds you that life's too short. It's a good time to say, 'What else do I want to do?'"

But, at 62, he has no intention of retiring. In his next job, Lee said, he wants to tackle what he believes are flaws in employer-based health insurance that leave many workers, especially low-wage earners, at financial risk if they get sick.

He said he has no idea whether he'll land in the private sector, a nonprofit or government. First, he plans to take time off to travel and think about his next move.

Covered California's enrollment is at its highest level since the exchange opened for business — credited partly to longer enrollment periods due to COVID and the expansion of federal premium assistance, at least through 2022, under the American Rescue Plan Act.

The expanded federal subsidies were based on California's first-in-the-nation state-funded financial aid, which — with Lee's ardent support and implementation — extended subsidized coverage well into the middle class.

The percentage of Californians who don't have insurance has dropped sharply, from 17% before the ACA began expanding coverage in 2014 to 7% now — mostly due to the expansion of Medicaid rather than the Covered California marketplace.

Those who have worked with Lee credit him for innovations that transcend the provisions of Obamacare and have either set California apart or served as templates for other states.

Covered California, unlike many state exchanges, has standardized health plan designs, so that plans within each coverage level offer the same services with the same deductibles and other out-of-pocket costs.

"Instead of insurers submitting and selling dozens and dozens of plans with differences that just cause consumer confusion, he established standardized benefit packages so you could make apples-to-apples comparisons," said Anthony Wright, executive director of Health Access California, a consumer advocacy group. Consumers need only compare provider networks and price, Wright said, "but you don't have to worry that, 'Oh, in this plan the deductible is $50 less but the copays are $30 more.' That stuff is crazy-making."

Paul Markovich, CEO of Blue Shield of California, Covered California's second-largest insurer, said the health plans didn't want to standardize benefits at first, but "Peter stuck to his guns."

As a result, Markovich said, "there was no way to game the system. The only way to compete was to work on your costs and your quality and the access that the members had."

Another Covered California initiative that was unpopular at first with health plans "but very effective," Markovich said, is its ambitious advertising and marketing strategy — across racial, ethnic and linguistic communities — which is financed by a surcharge on plans.

Because many people don't know they are eligible for subsidies, Lee believed no amount of outreach was too much, Markovich said. "And again, he was right."

Lee has frequently expressed pride in his ability to negotiate relatively low premium increases, noting that over the past three years rate hikes for exchange-based health plans have averaged only about 1%.

Some analysts believe premiums could have been even lower, and that Lee hasn't pushed the health plans hard enough.

"I think that Covered California has been too eager to see health plans as partners," said Michael Johnson, a former Blue Shield of California executive turned industry critic.

Lee said he and his team strive to ensure that insurers don't make excessive profits in the exchange. "Every year we sit down with health plans and look at their books to ask, 'What profit are you making this year? And what profit are you making next year?'" he said.

Lee has seen healthcare from the business, consumer and regulatory sides. He held two healthcare-related jobs in the Obama administration and previously served as CEO of the Pacific Business Group on Health (since renamed the Purchaser Business Group on Health), which represents large employers, and as executive director of the Center for Healthcare Rights, a consumer advocacy group.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

Angela Hart: ahart@kff.org, @ahartreports

 

No Papers, No Care: Disabled Migrants Seek Help Through Lawsuit, Activism

KFF Health News, September 16, 2021

Advocates accuse ICE and DHS of discriminating against detainees by failing to provide adequate mental and physical healthcare.

This article was published on Thursday, September 16, 2021 in Kaiser Health News.

By Heidi de Marco   

Desperation led José Luis Hernández to ride atop a speeding train through northern Mexico with hopes of reaching the United States 13 years ago. But he didn't make it. Slipping off a step above a train coupling, he slid under the steel wheels. In the aftermath, he lost his right arm and leg, and all but one finger on his left hand.

He had left his home village in Honduras for the U.S. "to help my family, because there were no jobs, no opportunities," he said. Instead, he ended up undergoing a series of surgeries in Mexico before heading home "to the same miserable conditions in my country, but worse off."

It would be years before he finally made it to the United States. Now, as a 35-year-old living in Los Angeles, Hernández has begun organizing fellow disabled immigrants to fight for the right to healthcare and other services.

No statistics are available on the number of undocumented disabled immigrants in the United States. But whether in detention, working without papers in the U.S. or awaiting asylum hearings on the Mexican side of the border, undocumented immigrants with disabling conditions are "left without any right to services," said Monica Espinoza, the coordinator of Hernández's group, Immigrants With Disabilities.

People granted political or other types of asylum can buy private health insurance through the Affordable Care Act or get public assistance if they qualify. In addition, Medi-Cal, California's Medicaid program, provides services to people under 26, regardless of immigration status. Those benefits will expand next spring to include income-eligible undocumented people age 50 and up.

"That's a small victory for us," said Blanca Angulo, a 60-year-old undocumented immigrant from Mexico now living in Riverside, California. She was a professional dancer and sketch comedian in Mexico City before emigrating to the United States in 1993. At age 46, Angulo was diagnosed with retinitis pigmentosa, a rare genetic disorder that gradually left her blind.

"I was depressed for two years after my diagnosis," she said — nearly sightless and unemployed, without documents, and struggling to pay for medical visits and expensive eye medication.

The situation is particularly grim for undocumented immigrants with disabilities held in detention centers, said Pilar Gonzalez Morales, a lawyer for the Civil Rights Education and Enforcement Center in Los Angeles.

"They always suffer more because of the lack of care and the lack of accommodations," she said. Furthermore, "COVID has made it harder to get the medical attention that they need."

Gonzalez Morales is one of the attorneys working on a nationwide class action lawsuit filed by people with disabilities who have been held in U.S. immigration detention facilities. The complaint accuses U.S. Immigration and Customs Enforcement and the Department of Homeland Security of discriminating against the detainees by failing to provide them with adequate mental and physical healthcare.

The 15 plaintiffs named in the lawsuit, which is set for trial in April, have conditions ranging from bipolar disorder to paralysis, as well as deafness or blindness. They are not seeking monetary damages but demand the U.S. government improve care for those in its custody, such as by providing wheelchairs or American Sign Language interpreters, and refraining from prolonged segregation of people with disabilities.

Most of the plaintiffs have been released or deported. José Baca Hernández, now living in Santa Ana, California, is one of them.

Brought to Orange County as a toddler, Baca has no memory of Cuernavaca, the Mexican city where he was born. But his lack of legal status in the U.S. has overshadowed his efforts to get the care he needs since being blinded by a gunshot six years ago. Baca declined to describe the circumstances of his injury but has filed for a special visa provided to crime victims.

ICE detained Baca shortly after his injury, and he spent five years in detention. An eye doctor saw Baca once during that time, he says; he relied on other detainees to read him information on his medical care and immigration case. Mostly, he was alone in a cell with little to do.

"I had a book on tape," said Baca. "That was pretty much it."

According to the lawsuit, treatment and care for disabilities are practically nil in government detention centers, said Rosa Lee Bichell, a fellow with Disability Rights Advocates, one of the groups that filed the case.

Her clients say that "unless you are writhing or fainted on the floor, it's nearly impossible to get any kind of medical care related to disabilities," she said.

"There is kind of a void in the immigration advocacy landscape that doesn't directly focus on addressing the needs of people with disabilities," said Munmeeth Soni, litigation and advocacy director at the Immigrant Defenders Law Center in Los Angeles. "It's a population that I think has really gone overlooked."

ICE and Homeland Security did not respond to requests for comment on the lawsuit.

COVID-19 poses a particular threat to people with disabilities who are detained by ICE. On Aug. 25, for example, 1,089 of the 25,000-plus people in ICE facilities were under isolation or observation for the virus.

In an interim ruling, the federal judge hearing Baca's class action lawsuit this summer ordered ICE to offer vaccination to all detained immigrants who have chronic medical conditions or disabilities or are 55 or older. The Biden administration appealed the order on Aug. 23.

Hernández, who lost his limbs in the train accident, was among the hundreds of thousands of Central American immigrants who annually ride north through Mexico atop the trains, known collectively as "La Bestia," or "the Beast," according to the Migration Policy Institute. Injuries are common on La Bestia. And more than 500 deaths have been reported in Mexico since 2014 among people seeking to enter the U.S.

Hernández, who finally made it to the U.S. in 2015, was granted humanitarian asylum after spending two months in a detention center in Texas but quickly realized there was little support for people with his disadvantages.

In 2019, with the help of a local church, he formed the Immigrants With Disabilities group, which tries to hold regular gatherings for its 40-plus members, though the pandemic has made meetups difficult. Hernández is the only person in the group with legal papers and health benefits, he said.

Angulo has found solace in connecting with others in the group. "We encourage each other," she said. "We feel less alone."

She volunteers as a guide for people recently diagnosed with blindness at the Braille Institute, teaching them how to cook, shower and groom themselves in pursuit of self-sufficiency. Angulo would like to have a job but said she lacks opportunities.

"I want to work. I'm capable," she said. "But people don't want to take a chance on me. They see me as a risk."

She's also wary of any organization that offers medical or financial assistance to undocumented immigrants. "They ask for all my information and, in the end, they say I don't qualify," she said. "Being blind and without papers makes me feel especially vulnerable."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Heidi de Marco: heidid@kff.org, @Heidi_deMarco

When COVID Deaths Are Dismissed or Stigmatized, Grief Is Mixed With Shame and Anger

KFF Health News, September 16, 2021

Americans who have lost loved ones to COVID in communities where the disease isn't taken seriously may encounter efforts to shift responsibility from the virus to the victim.

This article was published on Thursday, September 16, 2021 in Kaiser Health News.

By Brett Sholtis, WITF   

Months after Kyle Dixon died, his old house in Lanse, Pennsylvania, is full of reminders of a life cut short.

His tent and hiking boots sit on the porch where he last put them. The grass he used to mow has grown tall in his absence. And on the kitchen counter, there are still bottles of the over-the-counter cough medicine he took to try to ease his symptoms at home as COVID-19 began to destroy his lungs.

Dixon was a guard at a nearby state prison in rural, conservative Clearfield County, Pennsylvania. He died of the virus in January at age 27. His older sister Stephanie Rimel was overwhelmed with emotion as she walked through Dixon's home and talked about him.

"I'll never get to be at his wedding," Rimel said. "I'll never see him old."

Her expressions of grief, however, quickly turned to anger. Rimel recounted the misinformation that proliferated last year: Masks don't work. The virus is a Democratic hoax to win the election. Only old people or people who are already sick are at risk.

Rimel said her brother believed some of that. He heard it from other prison guards, from family and friends on Facebook, she said, and from the former president, whom he voted for twice.

Falsehoods and conspiracies have fostered a dismissive attitude about the coronavirus among many people in rural Pennsylvania, where she and her siblings grew up, Rimel said. And, because of the misinformation, her brother didn't always wear a mask or practice physical distancing.

When family members expressed dismissive beliefs about COVID, Rimel's grief became even more painful and isolating. Rimel recalled a particularly tough time right after her brother had to be hospitalized. Even then, family members were repeating conspiracy theories on social media and bragging about not wearing masks, Rimel said.

Some of the people who attended Dixon's funeral are still sharing COVID misinformation online, said another sister, Jennifer Dixon.

"I wish that they could have been there his last days and watched him suffer," she said. "Watch his heart still be able to beat. His kidneys still producing urine because [they were] so strong. His liver still working. Everything. It was his lungs that were gone. His lungs. And that was only due to COVID."

Both sisters wanted their brother's death notice to be unambiguous about what had killed him. It reads, "Kyle had so much more of life to live and COVID-19 stopped his bright future."

While these sisters have chosen to be outspoken about what happened, other families have opted to keep quiet about deaths from COVID, according to Mike Kuhn, a funeral director in Reading, Pennsylvania.

Kuhn's business did not handle Kyle Dixon's funeral, but his chain of three funeral homes has helped bury hundreds of people who died from the coronavirus. He said about half of those families asked that COVID not be mentioned in obituaries or death notices.

"You know, I've had people say, 'My mother or my father was going to die, probably in the next year or two anyway, and they were in a nursing home, and then they got COVID, and you know, I don't really want to give a lot of credence to COVID,'" Kuhn said.

Some families wanted to have their loved one's official death certificate changed so that COVID was not listed as the cause of death, Kuhn added. Death certificates are official state documents, so Kuhn could not make that change even if he wanted to. But the request shows how badly some people want to minimize the role of the coronavirus in a loved one's death.

Refusing to face the truth about what killed a family or community member can make the grieving process much harder, said Ken Doka, who works as an expert in end-of-life care for the Hospice Foundation of America and has written books about aging, dying, grief and end-of-life care.

When a person dies from something controversial, Doka said, that's called a "disenfranchising death." The term refers to a death that people don't feel comfortable talking about openly because of social norms.

So, for instance, if I say my brother died of lung cancer, what's the first question you're going to ask — was he a smoker? And somehow, if he was a smoker, he's responsible."

Doka first explored the concept in the 1980s, along with a related concept: "disenfranchised grief." This occurs when mourners feel they don't have the right to express their loss openly or fully because of the cultural stigma about how the person died. For example, deaths from drug overdoses or suicide are frequently viewed as stemming from a supposed "moral" failure, and those left behind to mourn often fear others are judging them or the dead person's choices and behaviors, Doka said.

"So, for instance, if I say my brother died of lung cancer, what's the first question you're going to ask — was he a smoker?" Doka said. "And somehow, if he was a smoker, he's responsible."

Doka predicts that Americans who have lost loved ones to COVID in communities where the disease isn't taken seriously may also encounter similar efforts to shift responsibility — from the virus to the person who died.

Dixon's sisters said that's the attitude they often perceive in people's responses to the news of their brother's death — asking whether he had preexisting conditions or if he was overweight, as if he were to blame.

Those who criticize or dismiss victims of the pandemic are unlikely to change their minds easily, said Holly Prigerson, a sociologist specializing in grief. She said judgmental comments stem from a psychological concept known as cognitive dissonance.

If people believe the pandemic is a hoax, or that the dangers of the virus are overblown, then "anything, including the death of a loved one from this disease … they compartmentalize it," Prigerson said. "They're not going to process it. It gives them too much of a headache to try to reconcile."

She advises that people whose families or friends aren't willing to acknowledge the reality of COVID might have to set new boundaries for those relationships.

As Rimel continues to mourn her brother's death, she has found relief by joining bereavement support groups with others who agree on the facts about COVID. In August, she and her mother attended a remembrance march for COVID victims in downtown Pittsburgh, organized by the group COVID Survivors for Change.

And in June, a headstone was placed on Dixon's grave.

Near the bottom is a blunt message for the public, and for posterity: F— COVID-19.

Long after they are gone, the family wants the truth to endure.

"We want to make sure that people know Kyle's story, and that he passed away from the virus," Rimel said.

This story is from a partnership that includes NPR, WITF and KHN.

Brett Sholtis, WITF: brett_sholtis@witf.org, @BrettSholtis

How Fauci and the NIH Got Ahead of the FDA and CDC in Backing Boosters

KFF Health News, September 16, 2021

The FDA and CDC were seeing much of the same data, but as regulatory agencies, they were more cautious.

This article was published on Thursday, September 16, 2021 in Kaiser Health News.

By Sarah Jane Tribble and Arthur Allen

In January — long before the first jabs of COVID-19 vaccine were even available to most Americans — scientists working under Dr. Anthony Fauci at the National Institute of Allergy and Infectious Diseases were already thinking about potential booster shots.

A month later, they organized an international group of epidemiologists, virologists and biostatisticians to track and sequence COVID variants. They called the elite group SAVE, or SARS-Cov-2 Variant Testing Pipeline. And by the end of March, the scientists at NIAID were experimenting with monkeys and reviewing early data from humans showing that booster shots provided a rapid increase in protective antibodies — even against dangerous variants.

Fauci, whose team has closely tracked research from Israel, the United Kingdom and elsewhere, said in an exclusive interview with KHN on Wednesday that "there's very little doubt that the boosters will be beneficial." But, he emphasized, the official process, which includes reviews by scientists at the Food and Drug Administration and the Centers for Disease Control and Prevention, needs to take place first.

"If they say, 'We don't think there's enough data to do a booster,' then so be it," Fauci said. "I think that would be a mistake, to be honest with you."

The support for an extra dose of COVID vaccine clearly emerged, at least in part, from an NIH research dynamo, built by Fauci, that for months has been getting intricate real-time data about COVID variants and how they respond to vaccine-produced immunity. The FDA and CDC were seeing much of the same data, but as regulatory agencies, they were more cautious. The FDA, in particular, won't rule on a product until the company making it submits extensive data. And its officials are gimlet-eyed reviewers of such studies.

On boosters, Americans have heard conflicting messages from various parts of the U.S. government. Yet, Fauci said, "there is less disagreement and conflicts than seem to get out into the tweetosphere." He ticked off a number of prominent scientists in the field — including Surgeon General Vivek Murthy, acting FDA Commissioner Janet Woodcock and COVID vaccine inventor Barney Graham — who were on board with his position. All but Graham are members of the White House COVID task force.

Another task force member, CDC Director Rochelle Walensky, said her agency was tracking vaccine effectiveness and "we're starting to see some waning in terms of infections that foreshadows what we may be seeing soon in regard to hospitalizations and severe disease." As to when so-called boosters should start, she told PBS NewsHour on Tuesday, "I'm not going to get ahead of the FDA's process."

Differences in the scientific community are likely to be voiced Friday when the FDA's vaccine advisory board meets to review Pfizer-BioNTech's request for approval of a third shot. Indeed, even the FDA's official briefing paper before the meeting expressed skepticism. "Overall," agency officials noted, "data indicate that currently US-licensed or authorized COVID-19 vaccines still afford protection against severe COVID-19 disease and death." The agency also stated that it's unclear whether an additional shot might increase the risk of myocarditis, which has been reported, particularly in young men, following the second Pfizer and Moderna shots.

Part of the disagreement arose because President Joe Biden had announced that Americans could get a booster as soon as Sept. 20, a date Fauci and colleagues had suggested to him as practical and optimal in one of their frequent meetings just days before — though he cautioned that boosters would need CDC and FDA approval.

Now it appears that that decision and the timing rest with the FDA, which is the normal procedure for new uses of vaccines or drugs. And Fauci said he respects that process — but he thinks it should come as quickly as possible. "If you're doing it because you want to prevent people from getting sick, then the sooner you do it, the better," Fauci said.

Researchers at the NIH typically focus on early-stage drug development, asking how a virus infects and testing ways to treat the infection. The job of reviewing and approving a drug or vaccine for public use is "just not how the NIH was set up. NIH does relatively little research on actual products," said Diana Zuckerman, a former senior adviser to Hillary Clinton and president of the nonprofit National Center for Health Research in Washington, D.C.

"It's no secret that FDA doesn't have the disease experts in the way that the NIH does," Zuckerman said. "And it's no secret that the NIH doesn't have the experts in analyzing industry data."

'Data in Spades'

Yet no other infectious disease expert in any branch of the U.S. government has Fauci's influence. And while other scientific leaders support boosters, many scientists believe Fauci and his colleagues at the NIAID — some of the world's leaders in immunology and vaccinology, men and women in daily contact with their foreign peers and their research findings — are leading the charge.

Fauci was hard-pressed to give exact dates for when his thinking turned on the need for boosters. The past 18 months are a blur, he said. But "there's very little doubt that the boosters will be beneficial. The Israelis already have that data in spades. They boost, they get an increase by tenfold in the protection against infection and severe disease."

In July, Israel, which started vaccinating its population early and used only the Pfizer-BioNTech vaccine, began reporting severe breakthrough cases in previously vaccinated elderly people. Israel's Ministry of Health announced boosters July 29. Fauci noted that Israel and — to a lesser extent — the U.K. were about a month and a half ahead of the U.S. at every stage of dealing with COVID.

And once Israel had boosted its population, the Israeli scientists showed their NIH counterparts, hospitalizations of previously vaccinated people, which had been rising, dropped dramatically. Emerging evidence suggests boosters make people far less likely to transmit the virus to others, an important added benefit.

To be sure, members of the White House COVID response team — including Fauci and former FDA Commissioner David Kessler — had begun preparing a timeline for boosters months earlier. Kessler, speaking to Congress in May, said that it was unclear then whether the boosters would be needed but that the U.S. had the money to purchase them and ensure they were free.

Fauci explained that "practically speaking, the earliest we could do it would be the third week in September. Hence the date of the week of September the 20th was chosen." The hope was that would give regulators enough time. The FDA's advisory board meeting Friday is set to be followed next week by a gathering of the CDC's immunization advisory committee, which offers recommendations for vaccine use that can lead to legal mandates.

Tuesday, Dr. Sharon Alroy-Preis, Israel's head of public health services, told a Hebrew-language webinar that her country's booster launch came at a critical time. She provided supporting data that Israeli scientists are bringing to the FDA meeting Friday.

Some U.S. scientists have discussed limiting the boosters mostly to those over 60, Alroy-Preis noted, but "if you don't keep it under control, it's like a pot on the flame. If you don't start lowering the flames of the pandemic, you can't control it."

Real-Time Science

Scientists tracking the coronavirus are swimming in data. Hundreds of COVID studies are published or released onto pre-publication servers every day. Scientists also share their findings on group email lists and in Zoom meetings every week — and on Twitter and in news interviews.

Kessler, chief science officer of the White House COVID response team, said the case for boosters is "rooted in NIH science" but includes data from Israel, the Mayo Clinic, the pharmaceutical companies and elsewhere.

As Fauci put it: "Every 15 minutes, a pre-print server comes out with something I don't know."

The SAVE group, active since February, was organized by NIH officials who in normal times track influenza epidemics. The 60 to 70 scientists are mostly from U.S. agencies such as the NIH, CDC, FDA and Biomedical Advanced Research and Development Authority, but also from other countries, including Israel and the Netherlands.

"This is very much the basic scientists who are in the weeds trying to figure things out," said Dr. Daniel Douek, chief of the human immunology section within NIAID. Douek said the larger SAVE group meets every Friday but several subgroups meet several times a week, focusing on different aspects of the virus, such as early detection of viral variants and testing suspicious variants for their ability to evade vaccine-induced immunity and sicken vaccinated mice and monkeys.

The sharing of data and information is free-flowing, Douek said. SAVE is "an amazing thing."

Matthew Frieman, a participant and associate professor of microbiology at the University of Maryland School of Medicine, said the data makes it clear that the time for boosters is approaching. Biden's booster announcement "may have gotten ahead of the game, but the trajectory is pointing toward the need for boosters," Frieman said. "The level of antibody you need to protect against delta is higher because it replicates faster."

While SAVE is an elite group, it's not the only forum for discussing late-breaking data, said Natalie Dean, a biostatistician at the Rollins School of Public Health at Emory University. "We all saw the same data out of Israel," she said. Dean, like many other scientists, found that data unconvincing.

Monday, an international group of scientists led by Dr. Philip Krause, deputy chief of the FDA's vaccine regulation office, and including his boss, Dr. Marion Gruber, published an essay in The Lancet that questioned the need for widespread booster shots at this time.

Krause and Gruber had announced their retirements from the FDA on Aug. 30 — at least partly in response to the booster announcement, according to four scientists who know them. Gruber, who will remain at the agency until later this fall, is listed as a participant in Friday's meeting.

The Lancet paper argues that vaccine-based protection against severe COVID is still strong, while evidence is lacking that booster shots will be safe and effective. University of Florida biostatistician Ira Longini, a co-author on the Lancet paper, said it would be "immoral" to begin widespread boosters before the rest of the world was better vaccinated. As the disease continues its global spread, he noted, it is likely to develop deadlier and more vaccine-evasive mutants.

Longini was also skeptical of an August study, which Israeli scientists are to present to the FDA on Friday, that NIH officials had touted as strong evidence in support of boosters. On an Aug. 24 call with Israeli officials, Fauci urged them to publish that data, and a version appeared in the New England Journal of Medicine on Wednesday.

That study found that people receiving a third dose of the Pfizer-BioNTech vaccine were 11 times more likely to be protected from COVID infection than those who had gotten only two doses. But the study observed people for less than two weeks after their booster vaccinations kicked in. Biostatisticians felt it had irregularities that raised questions about its worth.

"I don't want to say the study isn't correct, but it hasn't been reviewed and there are possible biases," said Longini, who helped design the 2015 trial that resulted in a successful Ebola vaccine and now works on global COVID vaccine trials.

Fauci emphasized that no single study or piece of data led Biden or the members of the White House COVID response team to conclude that boosting was necessary. The compilation of evidence of waning immunity combined with reams of research was a factor. Now the crucial decisions are in the hands of the regulators, awaiting the FDA and CDC's judgment on how the nation should proceed.

"It isn't as if," Fauci said, "one day we're sitting in the Oval Office saying, 'You know, Mr. President, I think we need to boost.' And he says, 'Tony, go ahead and do it.' You can't do it that way. You've got to go through the process."

Journalist Nathan Guttman contributed to this report.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Sarah Jane Tribble: sjtribble@kff.org, @SJTribble

Arthur Allen: ArthurA@kff.org, @ArthurAllen202

Biden Releases a New Plan to Combat COVID, but Experts Say There's Still a Ways to Go

KFF Health News, September 15, 2021

Both signs of progress and setbacks have cropped up along the way.

This article was published on Wednesday, September 15, 2021 in Kaiser Health News.

By Victoria Knight and Julie Appleby  

Promise: "I'm never going to raise the white flag and surrender. We're going to beat this virus. We're going to get it under control, I promise you."

On the campaign trail last year, Joe Biden promised that, if elected president, he would get COVID-19 under control. Since assuming office in January, Biden has continued to pledge that his administration would do its best to get Americans vaccinated against COVID and allow life to return to some semblance of normal.

Both signs of progress and setbacks have cropped up along the way.

Initially, as COVID vaccines became available early this year, demand exceeded supply, frustrating many. Eventually, all those who wanted to were able to become fully vaccinated.

In May and June, new COVID cases, hospitalizations and deaths dramatically fell, prompting the Biden administration to ease mask requirements and guidance for fully vaccinated people. But many states and localities responded by dropping mask mandates altogether, even for people who were not inoculated.

The summer also ushered in the highly contagious delta variant, causing another pandemic wave. By Labor Day, daily cases in the U.S. were at their highest point since last winter. Deaths, too, were rising.

On Sept. 9, Biden announced a six-part plan to combat the delta variant and step up efforts to get control of COVID. The plan includes vaccine mandates for federal workers, government contractors and those working at private companies with 100 or more employees; requirements that employers offer paid time off for those getting a shot; increased distribution and lower costs for COVID tests, including rapid at-home tests; and stronger COVID safety protocols in schools and on interstate transportation.

The vaccine mandate for private employers includes an option for workers to be tested weekly instead of getting the shot. Federal workers won't have that option.

KHN teamed up with our partners at PolitiFact to analyze Biden's promises during the 2020 presidential campaign. We asked the experts for their take on whether this list of action items will help make this promise — to beat the virus — a reality.

Limitations and Benefits of Biden's Plan

While the plan is a "big step in the right direction," according to Dr. Leana Wen, a visiting professor of health policy and management at George Washington University, it should have been released two months ago. That would have slowed the delta variant from gaining such a strong foothold in the U.S.

"Had they acted much earlier, we would be in a different position," she said.

And the current plan doesn't go far enough, said Wen, who urged the Biden administration to give companies and jurisdictions incentives to require proof of vaccination for entry into restaurants and other businesses, as New York City and San Francisco did.

"That would send the message of 'You don't get to enjoy the privileges of pre-pandemic life unless you're vaccinated,'" said Wen. "Right now, the vaccinated are being held hostage by the unvaccinated. The vaccinated are having breakthrough infections and the unvaccinated are endangering those who cannot get vaccinated, like kids."

Dr. Marcus Plescia, chief medical officer at the Association of State and Territorial Health Officials, is optimistic that Biden's plan will move the needle, "but it's hard to know how much."

The vaccination mandates for employers, for example, will definitely be helpful in states where similar measures, such as requirements that state workers get vaccinated or test regularly, have already started, he said. It "will reinforce what the state is trying to do."

But it's less clear what will happen in states with strong political opposition to mandates. "There will be partisan disagreement on this," Plescia predicted.

Biden's proposal has elicited broad opposition from many Republican governors, with some pledging to fight it. Others issued more tempered statements. Ohio Gov. Mike DeWine, a Republican, told a Cincinnati radio station the plan may hamper efforts to educate people on the importance of vaccines, because "we're going to now be talking about a federal mandate, which no one likes, instead of talking about 'Look, here's the science.'"

But Plescia is pleased the vaccination mandate broadly extends the requirement for health care workers to get vaccinated. It now goes beyond an earlier announcement affecting only nursing home workers to include staffers at nearly all health facilities that receive federal funding, such as Medicare or Medicaid.

An August announcement that targeted mainly nursing home workers raised concern that some employees would simply quit and find work in health care settings where vaccines were not required, further exacerbating a shortage of nursing home workers.

With the president's new move, "this levels the playing field," Plescia said. The same goes for other industries.

And the mandate might prove less objectionable for some unvaccinated adults, said Dr. Georges Benjamin, executive director of the American Public Health Association, because the employer becomes the enforcer.

"The person telling them what to do is their boss at their job," he said. "That's a different leverage point than the government."

However, Jen Kates, director of global health and HIV policy at KFF, said the testing option for companies with 100 or more workers could slow any positive impact of the vaccine push.

It will also take time to see how the mandates and requirements are implemented. Possible legal challenges could delay results, as could the regulatory steps involved in the enforcement of the employer vaccination requirement, which will rely on the Occupational Safety and Health Administration for enforcement.

The goal to get more testing kits to health centers and to make home test kits available through major retailers for a lower price could also be helpful, Plescia said.

Benjamin gives Biden a "healthy B-plus" on progress in getting COVID under control, citing the more than 200 million Americans who have had at least one shot, even as he acknowledges that, "as a nation, we haven't achieved critical vaccination levels in enough of the country." Currently, 63% of the U.S. population age 12 and over is fully vaccinated.

But, in many pockets of the country, not even half the population is vaccinated, far short of the levels many public health experts believe necessary to tamp down the virus.

"It's pretty clear the carrot has not worked," said Benjamin, referring to the carrot-and-stick metaphor. "We have enormous forces pushing back, both the usual anti-vaccine community plus the politicization at the most senior levels."

Disparities remain in vaccination rates among people of color compared with that of white people, though the gap has been shrinking recently. Still, the share of doses Black and Hispanic people have received is disproportionately smaller than their share of COVID cases in most states.

Continuing to reach out to these populations will be an important tool to boost the vaccination rate across the U.S. — and to slow the delta variant surge.

When Will We (If Ever) Get COVID Under Control?

Despite all this, Dr. William Schaffner, a professor of medicine in the Division of Infectious Diseases at Vanderbilt University in Nashville, Tennessee, is hopeful.

If things move forward expeditiously, "by sometime this winter we could have COVID under control," he said. By that, he does not mean the virus will be vanquished. Instead, Schaffner said, "we would be on the same track as before delta, entering a new normal."

Kates envisions COVID becoming manageable if the U.S. can achieve a much higher rate of vaccination coverage. But she also thinks it's likely the virus will continue to circulate and COVID will become an endemic disease.

"The likelihood of it not being an issue is diminishing since vaccine coverage is so poor in other countries. Containing COVID depends on what we do globally, too," said Kates. "The likely scenario of the U.S. is we'll be living with it for a while and containment will be dependent on vaccination rates." We continue to rate this promise In the Works.

Victoria Knight: vknight@kff.org, @victoriaregisk

Julie Appleby: jappleby@kff.org, @Julie_Appleby

Over Half of States Have Rolled Back Public Health Powers in Pandemic

KFF Health News, September 15, 2021

President Joe Biden last Thursday announced sweeping vaccination mandates and other COVID measures, saying he was forced to act partly because of such legislation.

This article was published on Wednesday, September 15, 2021 in Kaiser Health News.

By Lauren Weber and Anna Maria Barry-Jester

Republican legislators in more than half of U.S. states, spurred on by voters angry about lockdowns and mask mandates, are taking away the powers state and local officials use to protect the public against infectious diseases.

A KHN review of hundreds of pieces of legislation found that, in all 50 states, legislators have proposed bills to curb such public health powers since the COVID-19 pandemic began. While some governors vetoed bills that passed, at least 26 states pushed through laws that permanently weaken government authority to protect public health.

In three additional states, an executive order, ballot initiative or state Supreme Court ruling limited long-held public health powers. More bills are pending in a handful of states whose legislatures are still in session.

In Arkansas, legislators banned mask mandates except in private businesses or state-run healthcare settings, calling them "a burden on the public peace, health, and safety of the citizens of this state." In Idaho, county commissioners, who typically have no public health expertise, can veto countywide public health orders. And in Kansas and Tennessee, school boards, rather than health officials, have the power to close schools.

President Joe Biden last Thursday announced sweeping vaccination mandates and other COVID measures, saying he was forced to act partly because of such legislation: "My plan also takes on elected officials in states that are undermining you and these lifesaving actions."

All told:

  • In at least 16 states, legislators have limited the power of public health officials to order mask mandates, or quarantines or isolation. In some cases, they gave themselves or local elected politicians the authority to prevent the spread of infectious disease.
     
  • At least 17 states passed laws banning COVID vaccine mandates or passports, or made it easier to get around vaccine requirements.
     
  • At least nine states have new laws banning or limiting mask mandates. Executive orders or a court ruling limit mask requirements in five more.

Much of this legislation takes effect as COVID hospitalizations in some areas are climbing to the highest numbers at any point in the pandemic, and children are back in school.

"We really could see more people sick, hurt, hospitalized or even die, depending on the extremity of the legislation and curtailing of the authority," said Lori Tremmel Freeman, head of the National Association of County and City Health Officials.

Public health academics and officials are frustrated that they, instead of the virus, have become the enemy. They argue this will have consequences that last long beyond this pandemic, diminishing their ability to fight the latest COVID surge and future disease outbreaks, such as being able to quarantine people during a measles outbreak.Bottom of Form

"It's kind of like having your hands tied in the middle of a boxing match," said Kelley Vollmar, executive director of the Jefferson County Health Department in Missouri.

But proponents of the new limits say they are a necessary check on executive powers and give lawmakers a voice in prolonged emergencies. Arkansas state Sen. Trent Garner, a Republican who co-sponsored his state's successful bill to ban mask mandates, said he was trying to reflect the will of the people.

"What the people of Arkansas want is the decision to be left in their hands, to them and their family," Garner said. "It's time to take the power away from the so-called experts, whose ideas have been woefully inadequate."

After initially signing the bill, Republican Gov. Asa Hutchinson expressed regret, calling a special legislative session in early August to ask lawmakers to carve out an exception for schools. They declined. The law is currently blocked by an Arkansas judge who deemed it unconstitutional. Legal battles are ongoing in other states as well.

A Deluge of Bills

In Ohio, legislators gave themselves the power to overturn health orders and weakened school vaccine mandates. In Utah and Iowa, schools cannot require masks. In Alabama, state and local governments cannot issue vaccine passports and schools cannot require COVID vaccinations.

Montana's legislature passed some of the most restrictive laws of all, severely curbing public health's quarantine and isolation powers, increasing local elected officials' power over local health boards, preventing limits on religious gatherings and banning employers — including in healthcare settings — from requiring vaccinations for COVID, the flu or anything else.

Legislators there also passed limits on local officials: If jurisdictions add public health rules stronger than state public health measures, they could lose 20% of some grants.

Losing the ability to order quarantines has left Karen Sullivan, health officer for Montana's Butte-Silver Bow department, terrified about what's to come — not only during the COVID pandemic but for future measles and whooping cough outbreaks.

"In the midst of delta and other variants that are out there, we're quite frankly a nervous wreck about it," Sullivan said. "Relying on morality and goodwill is not a good public health practice."

While some public health officials tried to fight the national wave of legislation, the underfunded public health workforce was consumed by trying to implement the largest vaccination campaign in U.S. history and had little time for political action.

Freeman said her city and county health officials' group has meager influence and resources, especially in comparison with the American Legislative Exchange Council, a corporate-backed conservative group that promoted a model bill to restrict the emergency powers of governors and other officials. The draft legislation appears to have inspired dozens of state-level bills, according to the KHN review. At least 15 states passed laws limiting emergency powers. In some states, governors can no longer institute mask mandates or close businesses, and their executive orders can be overturned by legislators.

When North Dakota's legislative session began in January, a long slate of bills sought to rein in public health powers, including one with language similar to ALEC's. The state didn't have a health director to argue against the new limits because three had resigned in 2020.

Fighting the bills not only took time, but also seemed dangerous, said Renae Moch, public health director for Bismarck, who testified against a measure prohibiting mask mandates. She then received an onslaught of hate mail and demands for her to be fired.

Lawmakers overrode the governor's veto to pass the bill into law. The North Dakota legislature also banned businesses from asking whether patrons are vaccinated against or infected with the coronavirus and curbed the governor's emergency powers.

The new laws are meant to reduce the power of governors and restore the balance of power between states' executive branches and legislatures, said Jonathon Hauenschild, director of the ALEC task force on communications and technology. "Governors are elected, but they were delegating a lot of authority to the public health official, often that they had appointed," Hauenschild said.

'Like Turning Off a Light Switch'

When the Indiana legislature overrode the governor's veto to pass a bill that gave county commissioners the power to review public health orders, it was devastating for Dr. David Welsh, the public health officer in rural Ripley County.

People immediately stopped calling him to report COVID violations, because they knew the county commissioners could overturn his authority. It was "like turning off a light switch," Welsh said.

Another county in Indiana has already seen its health department's mask mandate overridden by the local commissioners, Welsh said.

He's considering stepping down after more than a quarter century in the role. If he does, he'll join at least 303 public health leaders who have retired, resigned or been fired since the pandemic began, according to an ongoing KHN and AP analysis. That means 1 in 5 Americans have lost a local health leader during the pandemic.

"This is a deathblow," said Brian Castrucci, CEO of the de Beaumont Foundation, which advocates for public health. He called the legislative assault the last straw for many seasoned public health officials who have battled the pandemic without sufficient resources, while also being vilified.

Public health groups expect further combative legislation. ALEC's Hauenschild said the group is looking into a Michigan law that allowed the legislature to limit the governor's emergency powers without Democratic Gov. Gretchen Whitmer's signature. 

Curbing the authority of public health officials has also become campaign fodder, particularly among Republican candidates running further on the right. While Republican Idaho Gov. Brad Little was traveling out of state, Lt. Gov. Janice McGeachin signed a surprise executive order banning mask mandates that she later promoted for her upcoming campaign against him. He later reversed the ban, tweeting, "I do not like petty politics. I do not like political stunts over the rule of law."

At least one former lawmaker — former Oregon Democratic state Sen. Wayne Fawbush — said some of today's politicians may come to regret these laws.

Fawbush was a sponsor of 1989 legislation during the AIDS crisis. It banned employers from requiring healthcare workers, as a condition of employment, to get an HIV vaccine, if one became available. 

But 32 years later, that means Oregon cannot require healthcare workers to be vaccinated against COVID. Calling lawmaking a "messy business," Fawbush said he certainly wouldn't have pushed the bill through if he had known then what he does now.

"Legislators need to obviously deal with immediate situations," Fawbush said. "But we have to look over the horizon. It's part of the job responsibility to look at consequences."

KHN data reporter Hannah Recht, Montana correspondent Katheryn Houghton and Associated Press writer Michelle R. Smith contributed to this report.

Lauren Weber: LaurenW@kff.org, @LaurenWeberHP

Anna Maria Barry-Jester: annab@kff.org, @annabarryjester

Census: Insured Population Holds Steady, With a Slight Shift From Private to Public Coverage

KFF Health News, September 15, 2021

Twenty-eight million people, or 8.6% of Americans, were uninsured for all of 2020. In 2019, 8% of people were uninsured during the full year; in 2018, it was 8.5%.

This article was published on Wednesday, September 15, 2021, in Kaiser Health News.

By Victoria Knight and Julie Appleby

Despite a pandemic-fueled recession, the number of uninsured Americans has increased only slightly since 2018, according to Census Bureau health insurance data released Tuesday.

Twenty-eight million people, or 8.6% of Americans, were uninsured for all of 2020. In 2019, 8% of people were uninsured during the full year; in 2018, it was 8.5%.

During a press conference, Census officials said there was no statistically significant difference in the number of uninsured when comparing 2018 and 2020 data. (The Census Bureau has cautioned against comparing 2020 data to 2019 data because of a disruption in data collection and individual responses due to the COVID-19 pandemic — which is why 2018 served as the primary comparison.)

"It's remarkable that, during a pandemic with massive job losses, the share of Americans uninsured did not go up," said Larry Levitt, executive vice president for health policy at KFF. "This is likely a testament to what is now a much more protective health insurance safety net."

Still, the annual report shows a shift in where Americans get their insurance coverage. Private insurance coverage decreased by 0.8 percentage points from 2018. Public coverage rose by 0.4 percentage points from 2018. That shift was likely driven partly by older Americans becoming eligible for Medicare, at age 65, and showed a 0.5 percentage point increase from 2018 to 2020.

Coverage through employers also dropped significantly, said Joseph Antos, a senior fellow in healthcare policy at the American Enterprise Institute, and low-income people were hit especially hard as pandemic cutbacks led to job and health insurance losses. Employment-based coverage dropped by 0.7 percentage points compared with 2018.

The Census 2020 data did show a decline in the number of workers employed full time year-round, and an increase in the number of workers who worked less than full time, suggesting that many individuals shifted to part-time work.

This changing nature of work is "part of the overall story," said Sharon Stern, assistant division chief of employment characteristics at the Census Bureau. For the group that didn't work full time, the uninsured rate increased to 16.4% in 2020 from 14.6% in 2018. And that impact was concentrated at the bottom of the earnings index.

"Almost certainly, the people most prone to lose coverage because they lost their jobs were lower-paid workers to begin with," Antos said.

Antos said the Census Bureau data, which showed there wasn't a significant difference between 2018 and 2020 in the percentage of Americans covered by the Affordable Care Act, misses the larger role the ACA played in helping those who lost coverage get it through the program. Many of those who looked into ACA plans may have met income requirements for Medicaid and joined those rolls instead. Medicaid is a federal-state program for the poor and coverage is free or available at a very low cost. Even with a subsidy, many ACA enrollees may face premium or deductibles or both.

Joan Alker, executive director of the Center for Children and Families at Georgetown University, said one of the main points that jumped out for her was the sharp rise in children below the federal poverty level who were uninsured, rising from 7.8% in 2018 to 9.3% in 2020.

"The rich kids actually did a little bit better, and the poor kids did a whole lot worse," said Alker.

Overall, the percentage of uninsured children ticked up only slightly and wasn't considered statistically significant.

Further research is needed to determine the causes of rising uninsurance among the poorest children, Alker said.

Oddly, the Census report did not show an uptick in Medicaid enrollment, although other reports have shown a big increase.

Data from the Centers for Medicare & Medicaid Services, which comes from state insurance records, shows a 15.6% increase in the number of Medicaid and Children's Health Insurance Program enrollees from February 2020 to March 2021.

A recent report from KFF, which analyzed the CMS data, found enrollment in Medicaid and CHIP increased by 10.5 million from February 2020 to March 2021. Enrollment increased steadily each consecutive month, with increases attributed to people losing their jobs and thus becoming eligible for public coverage and the Families First Coronavirus Response Act, which passed in 2020 and ensured continuous Medicare coverage.

This disconnect may be a result of the nature of Census data, which is self-reported by individuals.

"That's always subject to error, and probably especially so right now," said Levitt. "It could also be a result of particularly high non-response rates among some groups."

Census officials acknowledged during the Tuesday press conference that response rates to their surveys were lower than normal in 2020 and have only just started rebounding in 2021. Other data sources do seem to confirm that the uninsured rate has remained relatively constant over the past couple of years.

Another important takeaway from the data was illustrating the continuing gap in the number of uninsured people between states that chose to expand Medicaid under the ACA and states that didn't. The Census data showed that in 2020, 38.1% of poor, non-elderly adults were uninsured in non-expansion states, compared with 16.7% in expansion states.

"That became a huge gap after the ACA, and it's not surprising at all that it remains a huge gap," said Gideon Lukens, director of research and data analysis for health policy at the Center on Budget and Policy Priorities. "That highlights the need to close the coverage gap."

The Census Bureau report also offered insights into national income and poverty rates:

  • The official poverty rate in 2020 was 11.4%, up 1 percentage point from 2019, marking the first increase in poverty after five consecutive annual declines. In 2020, 37.2 million people lived in poverty, approximately 3.3 million more than in 2019.
     
  • Medical expenses boosted the number of impoverished people by 5 million in 2020.
     
  • The median household income in 2020 decreased 2.9% from 2019 to 2020. This is the first statistically significant decline in median household income since 2011.

Victoria Knight: vknight@kff.org, @victoriaregisk

Julie Appleby: jappleby@kff.org, @Julie_Appleby  

ICUs are filled with COVID — and regret

KFF Health News, September 14, 2021

In hospitals throughout the South as well as in parts of California and Oregon, more than 50% of the inpatients are being treated for COVID.

This article was published on Tuesday, September 14, 2021 in Kaiser Health News.

By Blake Farmer, Nashville Public Radio  

It's a struggle for Joe Gammon to talk. Lying in his bed in the intensive care unit at Ascension Saint Thomas Hospital in Nashville, Tennessee, this month, he described himself as "naive." 

"If I would have known six months ago that this could be possible, this would have been a no-brainer," said the 45-year-old father of six, who has been in critical condition with COVID-19 for weeks. He paused to use a suction tube to dislodge some phlegm from his throat. "But I honestly didn't think I was at any risk."

Tennessee hospitals are setting new records each day, caring for more COVID patients than ever, including 3,846 of the more than 100,000 Americans hospitalized with the virus as of Sept. 9. The most critical patients are almost all unvaccinated, hospital officials say, meaning ICUs are filled with regretful patients hoping for a second chance.

In hospitals throughout the South as well as in parts of California and Oregon, more than 50% of the inpatients are being treated for COVID, an NPR analysis shows.

Gammon is a truck driver from rural Lascassas in Middle Tennessee who said he listens to a lot of conservative talk radio. The daily diatribes downplaying the pandemic and promoting personal freedom were enough to dissuade him from vaccination.

Gammon said he's not an "anti-vaxxer." And he said he's a committed believer in the COVID vaccine now. He's also thankful he didn't get anyone else so sick they're in an ICU like him.

"Before you say no, seek a second opinion," he advised people who think the way he did before being hospitalized. "Just to say 'no' is irresponsible. Because it might not necessarily affect you. What if it affected your spouse? Or your child? You wouldn't want that. You sure wouldn't want that on your heart."

Gammon's lungs are too damaged from COVID for a ventilator. He is on the last-resort life support ECMO, which stands for extracorporeal membrane oxygenation. Unlike previous generations of life support, people on ECMO can be fully conscious, can speak to their loved ones (or even reporters), and can even move around with the help of a team of nurses and technicians. 

But it is an intense treatment, with a machine doing the work of both the heart and the lungs. Thick tubes run out of a hole in Gammon's neck, and pump all of his blood through the ECMO machine to be oxygenated, then back into his body through other tubes. A mask over his nose forces air into his lungs as they're given time to heal.

Even for patients who survive ECMO, many face months of rehabilitation or even permanent disability or dependence on oxygen.

This Saint Thomas West ICU is treating COVID patients only, and that data point should be pretty convincing to vaccine holdouts, said critical care nurse Angie Gicewicz.

"We don't have people in the hospital suffering horrible reactions to the vaccine," she noted.

If all the patients on this hall could talk — and some can't because they're sedated on ventilators — Gicewicz said they'd tell people to learn from their mistakes. She recounted the story of an elderly woman who was admitted in recent weeks and spent her first days in isolation to control infection.

Gicewicz said she'd wave at the nurses from her sealed room, desperate for anyone to talk to. "The first day I took care of her, she said, 'I guess I should have taken that vaccine.' I said, 'Well, yeah honey, probably. But we're here where we are now, and let's do what we can for you.' "

That woman, like so many who didn't take the vaccine, never recovered, Gicewicz said. She died at this hospital, which averaged more than one COVID death every day during the month of August.

This story is part of a partnership that includes Nashville Public Radio, NPR and KHN.

Blake Farmer, Nashville Public Radio: bfarmer@wpln.org, @flakebarmer

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