In the most recent election, Roseville voters had chosen three school board members who campaigned primarily on a message of reopening classrooms full time.
Brandon Dell’Orto listened to the comments and complaints as the school board meeting dragged on hour after hour. Many parents were angry. Their kids were sad, bored, borderline depressed, fed up with a school model that didn’t allow them to be on campus every day. The parents wanted schools open. They demanded it.
Dell’Orto, a history teacher and teachers union leader in the Roseville Joint Union High School District near Sacramento, knew it wasn’t so simple. Many of the district’s classrooms couldn’t meet new state guidelines for resuming safe on-campus instruction. Further, 4 in 5 teachers in his union, the Roseville Secondary Education Association, opposed a full return to the physical classroom. They feared for their safety and that of some students, and many preferred to wait to be vaccinated before once again teaching in person.
Dell’Orto also knew that the protocols and opinions were unlikely to affect the ultimate decision. In the most recent election, Roseville voters had chosen three school board members who campaigned primarily on a message of reopening classrooms full time. It was clear, Dell’Orto said, that the new members were going to do exactly that.
California has 1,037 public school districts, each empowered to make its own decision about reopening schools during the covid-19 pandemic. Politics and public health are at war in many districts, including this one. So, while classrooms had been closed nearly a year in neighboring Sacramento County, the Roseville schools were going the other way.
The night of the meeting, Jan. 26, the school board rushed out an online survey to parents. Within three days, 94% of those households had responded, and the results were clear: They overwhelmingly wanted the schools to reopen five days a week for in-person instruction. On Jan. 31, the board approved such a reopening, effective immediately.
“We are not going to move backwards,” Lisa Mendenhall, parent of a student at Oakmont High School, had declared at the board meeting.
For years, Dell’Orto said, Roseville’s teachers have enjoyed a good relationship with the district, its families and the school board. But when it came to discussing the continuation of a hybrid model versus a full return to campus, the teachers union, which had proposed the hybrid, was largely ignored. During the 5 ½-hour meeting on Jan. 26, Dell’Orto said he was allotted 90 seconds to weigh in.
“We really try to be a pragmatic, productive partner,” he told California Healthline. “Lately, though, everything has gone to ‘Pick a side.’”
“This is why the country is in this situation,” Dell’Orto told the board. “Because people don’t want to follow guidelines.”
The board approved a back-to-school order even though three of the six high schools in the district had been unable to meet guidelines for keeping the recommended distance between students. In a previous attempt at reopening, following winter vacation, one of the schools, Roseville High, had to quickly shut down after a covid outbreak forced hundreds of students and staff members into quarantine.
Jess Borjon, the district’s interim superintendent, told California Healthline that administrators were “confident that we can arrive at the minimum distance” of 4 feet between desks allowed under new California Department of Public Health guidelines issued in mid-January. The Roseville High outbreak, he said, “was a reminder of how diligent we have to be to stay open.”
Roseville, with a population of about 141,500, is a mostly suburban city northeast of Sacramento. Unlike Sacramento, though, it’s in largely rural Placer County, which sprawls all the way to Lake Tahoe and has voted for the Republican candidate in five straight presidential elections.
Placer County, with nearly 400,000 people, has tended to resist health and safety protocols during the pandemic, with many businesses and churches defying orders to close.
Last summer, the county supervisors, unhappy with their public health officer’s reluctance to arbitrarily terminate covid emergency declarations, stripped her of that authority, then lifted the emergency themselves. The officer, Dr. Aimee Sisson, promptly resigned and was hired to the same position in nearby Yolo County, whose supervisors have closely followed her guidance and kept schools closed.
In fall’s Roseville school board election, one returning member and two new candidates were elected on the promise that they would reopen schools. Newly elected Heidi Hall is listed as a Placer “county coordinator” of the statewide petition to recall California Gov. Gavin Newsom.
Hall blamed the Democratic governor for the confusing and shifting state guidelines for reopening schools. At the Jan. 26 meeting, she declared that California’s distancing recommendations were “not making a difference in these positivity rates” and that it was “irresponsible to listen to this guideline coming down that is not based in any science.”
In fact, the CDPH guidelines on reopening schools closely follow protocols produced recently by the Centers for Disease Control and Prevention. That set of guidelines stirred vigorous debate among experts, some of whom said it would be impossible to reopen schools while following them. President Joe Biden has repeatedly said he wants most U.S. schools open by the end of April. While children rarely get seriously ill from covid, their ability to transmit the disease remains a subject of intense interest, and the CDC recently found that teachers and staffers may act as vectors of covid in schools where distancing recommendations aren’t followed and masks are not worn.
None of it mattered in Roseville. The three newly elected board members voted against a motion that would have opened elementary schools (where children are easier to manage) and kept the high schools in the hybrid model, with some students coming to campus on selected days. That would have allowed its six high schools, with a combined enrollment of more than 10,000, to more closely follow the CDPH guidelines. Their votes defeated that motion, 3-2. They later voted to return to full on-campus learning. (None of the three responded to questions posed by KHN.)
The health department’s memo calls for a distance of 6 feet between students’ desks unless, after a “good-faith effort,” such a distance is determined to be impossible. In that case, 4 feet is allowed as the absolute minimum. Three of the Roseville district’s schools were not able to meet the 4-foot requirement, either. They opened anyway.
Doug Ginn, who teaches science at Oakmont, noted that the heating system in his lab “only brings in 10% fresh air” for classes that often have 40 students or more. Ginn’s solution on a recent day was to open the front and back windows and turn on a fan to keep fresh air moving through. It was 35 degrees outside when school began, he said.
“I’ve already lost two students [who returned to remote learning] because they don’t feel safe,” said Ginn. “We do everything we can, but for classes like labs where being there in person is so critical, there are only so many ways to modify a crowded room.”
As the district scrambled to redesign classrooms to meet safety mandates, students were already back on campus. Jennifer Leighton, principal at Granite Bay High School, told families in an email shared with The Sacramento Bee that “any form of distancing will not happen — sorry — classes have been large and could likely grow since 300 more than we’ve had are planning to return.”
Borjon said the suggested distancing guidelines weren’t practicable if all the students were on campus for all their classes.
“The spacing issue in full classrooms is a real concern for us, and is at the forefront of our thinking,” the superintendent told KHN. “We share the concerns of teachers, students, parents and staff regarding classroom safety.”
But most parents remain viscerally opposed to the hybrid model. “It does not work. It’s a failure,” said Mark Anderson, whose son attends Oakmont. Added Jennifer Scott, parent of a Granite Bay student, “It makes no sense, as this pandemic is coming to a tail end, that we would go backwards.”
With Roseville schools open, teachers have had to adjust. The schools continue to offer a Zoom option for students to remotely monitor instruction if they don’t feel safe returning to their campuses. So far, though, school officials said they are gaining students on campus with each passing week, which further strains their ability to even approach the state guidelines for a covid-safe environment.
“We’re professionals. We were asked to try to make this work, and so we’re trying to make it work,” said Ginn, whose science classes had to be moved to larger areas, including the library. “It’s not in a teacher to just say no. These are our students you’re talking about.”
Kaiser's CEO, Greg Adams, acknowledged the frustrations of his company's California patients in a Jan. 30 email, explaining that the health system had received only a small fraction of the vaccine supply it needed.
This article was published on Thursday, March 4, 2021 in Kaiser Health News.
As managed-care giant Kaiser Permanente assumes a prominent role in California’s new covid-19 vaccination strategy, it is drawing mixed reviews from members across the country for the way it has run its own vaccine program over the past two months.
Conversations with 10 Kaiser enrollees in five states — Colorado, Washington, Virginia, Maryland and California — revealed a common frustration: difficulty snagging an appointment. Many also described receiving sporadic and sometimes confusing information from the company, though some said Kaiser has been doing better recently.
All of those who spoke to California Healthline were over age 65. Many were long-standing Kaiser members and, aside from the vaccine rollout, had mostly positive opinions of the health system. Some ended up going elsewhere for their shots; others said they would wait for Kaiser because its services were familiar to them and they felt more comfortable going there than to another site. (KHN is an editorially independent program of KFF, which is not affiliated with Kaiser Permanente.)
Kaiser’s CEO, Greg Adams, acknowledged the frustrations of his company’s California patients in a Jan. 30 email, explaining that the health system had received only a small fraction of the vaccine supply it needed.
Members did not blame Kaiser for the lack of vaccines, noting that insufficient supply has been the bane of providers across the country. But Kaiser could have been quicker to administer the vaccines it did receive and should have communicated more clearly about the shortage, they said.
Nino Maida, a San Francisco resident who’s been a Kaiser member for 14 years, said he couldn’t figure out why he was unable to get an appointment. “The frustration lasted about a month, until I got a clear indication from Kaiser that any waiting was due to a lack of vaccine,” said Maida, 74. “I thought they were being very inefficient instead of just poor at communicating.”
A Kaiser spokesperson defended the company’s communication strategy, saying that a page on its website (kp.org/covidvaccine) provides detailed answers about vaccine eligibility and appointments, and that a link prominently displayed on Kaiser’s homepage directs people there. The organization sends regular emails to members with information about their eligibility and instructions on how to set up an appointment, and call center operators also can answer members’ questions, he said.
Clearly, Kaiser Permanente isn’t the only organization encountering vaccination roadblocks. Sutter Health, the large Northern California health system, for example, may have to cancel 95,000 vaccination appointments because it doesn’t have enough vaccine on hand, company spokesperson Amy Thoma Tan said Wednesday.
But Kaiser, which is both an insurer and medical provider, has drawn particular scrutiny because of its size and because it has been chosen to play a significant part in state efforts to speed covid vaccinations.
The company, which covers 12.4 million people in the U.S., including 9.3 million Californians, was also fined nearly $500,000 for workplace safety violations early in the pandemic.
A memorandum of understanding with the state, released last week, stipulates that Kaiser will be part of a vaccination provider network assembled and overseen by Blue Shield of California, which signed a contract on Feb. 1 to administer the statewide inoculation plan. Kaiser will also serve as an adviser to Blue Shield to help the state meet its goal of expanding vaccine access to the most vulnerable communities, the memorandum says.
Under the agreement, Kaiser will receive no state funds. It will operate two mass vaccination sites — one at San Francisco’s Moscone Center, the other at California State Polytechnic University-Pomona, in Los Angeles County — and “may consider the establishment of future mass vaccination sites” that would target rural Californians and those with historically lower vaccination rates. Importantly, Kaiser will vaccinate members and nonmembers, as it has already been doing on a smaller scale.
The memorandum acknowledges the supply constraints Kaiser has faced, saying the state “shall ensure that Blue Shield understands that Kaiser is dependent on sufficient supply of the vaccine.”
Kaiser did not start vaccinating people age 65 and older — in line with state guidelines — until well after other providers had begun doing so. And some longtime Kaiser members were disappointed by the lag.
“It is not good PR to have week after week of news showing the four largest health care providers in Northern California, and Kaiser is the only one still working on staff and people over 75 years old,” said Elizabeth Wieland, 66, of Elk Grove, California, a member for 30 years.
When Kaiser sent an email to patients on Feb. 13 encouraging them to “get vaccinated somewhere outside Kaiser Permanente” if possible, it felt as if they were “throwing in the towel,” Wieland said. “It’s ‘fend for yourself.’ Not what I would have expected, but that seems to be the new normal.”
On Feb. 20, Adams sent an update to members informing them the supply outlook had improved, because “the state has increased Kaiser Permanente’s weekly vaccine allocation to better match the number of members we serve.” As a result, the CEO said, Kaiser was able to start scheduling appointments for people 65 and up.
Kaiser is also vaccinating people 65 and up in Washington state, Virginia and Georgia, a spokesperson said.
Member complaints were not only about the slow rollout. Members said that Kaiser sometimes posted key vaccination information in hard-to-find places, and that they often heard things by word of mouth before they heard it from the company. Some said that, once they managed to sign up for a vaccination, they were promised email updates that never arrived. Still others said that, after getting on Kaiser’s vaccination waiting list, they were suddenly bumped further back in the line with no explanation.
Janet Vorwerk, a retired Kaiser operating room nurse who lives in a suburb of Denver, said that when she got on Kaiser’s waiting list in January, she was No. 20,991 in line. On Feb. 15, she dropped all the way down to 9,989, then inexplicably bounced up to 11,258 two days later, which she said was “so disheartening.” As of last Friday, she was No. 10,269.
“I don’t understand how the numbers are getting jacked around, up and down,” said Vorwerk, 66. Still, she blames the circumstances more than she blames Kaiser. “I understand where they’re coming from,” she said. “You can’t pull a vaccine out of your backside. But at the same time, it would be good to have a better idea of when it might happen.”
Some members said Kaiser’s performance has improved recently.
For Tom Spradley, an 84-year old resident of Citrus Heights, California, initial frustration with Kaiser gave way to a happy ending. He said he called Kaiser for an appointment about a month ago and was on hold for two hours before giving up. He then started checking Kaiser’s vaccine page every day for updates, but said none came for several days.
Finally, he was able to get an appointment for himself and his wife at a Kaiser site in Sacramento, about 20 minutes away. The appointment, he said, was a model of efficiency. They got their first shots and were scheduled for second doses March 12.
“After a week of bad information on getting a shot, I think they have really come through, and I was really impressed by the job they did,” Spradley said.
[Correction: This article was updated at 3 p.m. ET on March 4, 2021, to correct the amount Kaiser Permanente was fined for workplace safety violations early in the pandemic.]
There have been tens of thousands of covid-19 cases and hundreds of deaths reported among U.S. farmworkers and meat plant workers.
This article was published on Thursday, March 4, 2021 in Kaiser Health News. This story is part of a reporting partnership that includes NPR, Illinois Public Media and KHN.
With more than 20 million acres of corn and soybeans, Illinois is among the top U.S. producers of those crops. To make it all happen, the state relies on thousands of farmworkers — some of whom travel to the state for seasonal work and others, like 35-year-old Saraí, who call Illinois home.
Being an agricultural worker “is the most beautiful thing,” Saraí said in an interview in Spanish.
She moved to the U.S. from Mexico to find work that would allow her to better support her family. KHN agreed to identify Saraí by only her first name because she’s undocumented. Since the onset of the pandemic, she’s spent most of her time shepherding her three kids through their virtual school classes.
There have been tens of thousands of covid-19 cases and hundreds of deaths reported among U.S. farmworkers and meat plant workers. Because no official tracking system is in place, these numbers — based largely on media reports — are likely an undercount.
And yet, agricultural workers like Saraí struggle to access the most basic tool to fight the spread of the coronavirus: testing. Saraí, for example, has been tested only once since the start of the pandemic. The nearest testing site is the next town over, and without a car or a public transportation option, she had to borrow a friend’s vehicle to get there. She hasn’t gotten covid, but Saraí knows many others who’ve gotten sick. She said the pandemic has made the past year a sad and difficult one.
“Many farmworkers are both working and living in sometimes isolated rural regions of the country,” said Diana Tellefson Torres, executive director of the California-based United Farm Workers Foundation.
Besides living far from testing sites, these workers often lack reliable information in their native language and have a general mistrust of the health care system. And missing work to get a test, or to isolate or quarantine, could be financially devastating.
While the rollout of the coronavirus vaccines provides some hope for a better future, the virus is still spreading across the U.S., and efforts to expand access to testing and build trust with farmworkers are still needed, Tellefson Torres said.
She said these efforts will also be critical for ensuring that these hard-to-reach, vulnerable populations are vaccinated when the time comes.
Leverage Long-Standing Community Connections
Early on in the pandemic, Gilberto Rosas, an anthropologist at the University of Illinois at Urbana-Champaign, was struck by how easy it was for him — a work-from-home professor — to get a test, compared with workers in nearby towns who were more vulnerable to catching the virus and developing a severe case of covid.
The university has its own mass testing program for students and employees. The Urbana-Champaign campus is just 15 miles south of Rantoul, where virus outbreaks at a meat processing plant and a hotel housing migrant farmworkers were among the worst in Champaign County last year.
“We can walk down two flights of stairs, go out the back door and we can get testing,” Rosas said. “Whereas these people who are at the forefront — who work in the fields, who work in the plants — they lack that kind of access.”
Rosas is part of a team at the University of Illinois that had set out to study what was causing the virus to spread in the agricultural community. They also decided to do something to address testing access.
“We want to both unearth inequalities, but also mitigate them,” Rosas said.
The researchers teamed up with medical professionals from clinics in the area to organize pop-up coronavirus testing events in Rantoul.
The events are advertised in English and Spanish. The group has tried to leverage long-standing community connections to bolster turnout, reaching out to churches and organizations that cater to the area’s immigrant and agricultural workforce.
Even with that outreach, they’ve been frustrated by low attendance. At an event held before Christmas outside a community center, for example, only 15 people came for a test. Four of those 15 tested positive — a very high rate.
Structural Barriers: Financial and Immigration Worries
Sofia Bolanos Robinette suspects the reason more people don’t turn out for coronavirus testing, even at convenient times and locations, is that a positive result can be financially devastating.
Bolanos Robinette has worked with farmworkers for the past 10 years, most recently as an advocate for students in the Illinois Migrant Education Program. She recently joined Rosas and the other University of Illinois anthropologists to study issues like barriers to testing.
She recalls helping last summer with a coronavirus testing effort aimed at farmworkers who travel to the region for seasonal work. The clinic tried to make it as easy as possible for the workers to attend by setting up a station during off-hours right outside the migrant housing area.
“But some of them said they didn’t even want to take the test, because, in the case they get back [a positive result], they will have to stop working,” Bolanos Robinette said. “And then that means, for them, they will not get any money for at least two weeks.”
That’s a big deal, she said, especially for farmworkers, who earn the bulk of their yearly income doing this seasonal work.
For low-wage farmworkers, “every penny counts,” said Tellefson Torres of the UFW Foundation. In the most recent National Agricultural Workers Survey, one-third of farmworkers reported family incomes below the poverty line.
And they don’t have the same safety net that documented workers in the U.S. have.
“When you have to worry about putting food on your own table for your family, sometimes that is the focus, because there isn’t another option,” Tellefson Torres said.
For undocumented workers, she said, there are even more disincentives to get tested. They may worry it could jeopardize their efforts to obtain a visa — a common misperception. And after years of the Trump administration being more aggressive with immigration enforcement, Tellefson Torres said, there’s a huge lack of trust and a real fear of deportation.
Despite lower-than-ideal turnout at the pop-up events, University of Illinois anthropologist Ellen Moodie said attempts to host “a few small-scale testing events, irregularly scheduled and located in different sites” have made a difference for handfuls of people who might not otherwise have known they had the virus.
However, Moodie said, the U.S. needs a comprehensive strategy to address the virus and protect vulnerable workers. Many public health experts have been calling for such a strategy since the start of the pandemic.
So far, President Joe Biden has made that a priority of his administration. In a document published in January, Biden outlined a covid strategy focused on boosting the production and distribution of vaccines. His plan includes efforts to address supply shortfalls for testing materials, implement stronger worker safety guidelines, expand emergency paid leave and otherwise strengthen the social service safety net.
Vaccine Implications: Mistrust Breeds Skepticism
Building trust with farmworkers remains critical, Tellefson Torres said, not just to get more to show up for testing — but also to get them to show up for vaccination as soon as they are eligible.
At a recent virtual town hall hosted by the UFW Foundation, Tellefson Torres said she has heard from many farmworkers across the U.S. who are eager to get a vaccine. But others have reservations.
The biggest concern she’s heard has been about the potential cost, especially for the many workers who lack health insurance. Tellefson Torres said her organization is working to get the word out that covid vaccination is free for everyone.
Others, she said, worry about vaccine safety, asking questions like: “What is this vaccine? What does it contain? … What are you putting in my body?”
Vaccine safety is something Saraí — the farmworker in Illinois — worries about too. After finding some information online, she grew concerned about the possibility of adverse reactions, so, at least for now, she isn’t planning to be vaccinated.
However, Saraí said, if someone she trusts shows her evidence the vaccines are safe, she could change her mind.
In Illinois, food and agriculture workers are now eligible for the vaccines. Public health administrator Julie Pryde said the Champaign-Urbana Public Health District — which serves Champaign County, including Rantoul — plans to work with a federally supported migrant clinic to host mobile vaccination events targeting migrant and seasonal farmworkers.
Tellefson Torres said partnerships like that will be critical to ensure that agricultural workers, who have faced so many challenges throughout the pandemic, have equitable access to the vaccines — their best hope of staying healthy.
“The norms that we have seen prior to the pandemic — of not prioritizing worker health or just basic safety-net needs — need to be addressed both by state, local, federal governments and employers,” she said. “We’re literally talking about a life-and-death situation here.”
There’s a reason soldiers go through basic training before heading into combat: Without careful instruction, green recruits armed with powerful weapons could be as dangerous to one another as to the enemy.
The immune system works much the same way. Immune cells, which protect the body from infections, need to be “educated” to recognize bad guys — and to hold their fire around civilians.
In some covid patients, this education may be cut short. Scientists say unprepared immune cells appear to be responding to the coronavirus with a devastating release of chemicals, inflicting damage that may endure long after the threat has been eliminated.
“If you have a brand-new virus and the virus is winning, the immune system may go into an ‘all hands on deck’ response,” said Dr. Nina Luning Prak, co-author of a January study on covid and the immune system. “Things that are normally kept in close check are relaxed. The body may say, ‘Who cares? Give me all you’ve got.’”
While all viruses find ways to evade the body’s defenses, a growing field of research suggests that the coronavirus unhinges the immune system more profoundly than previously realized.
All these conditions can be triggered by “autoantibodies” — rogue antibodies that target the patient’s own proteins and cells.
In a report published in October, researchers even labeled the coronavirus “the autoimmune virus.”
“Covid is deranging the immune system,” said John Wherry, director of the Penn Medicine Immune Health Institute and another co-author of the January study. “Some patients, from their very first visit, seem to have an immune system in hyperdrive.”
Although doctors are researching ways to overcome immune disorders in covid patients, new treatments will take time to develop. Scientists are still trying to understand why some immune cells become hyperactive — and why some refuse to stand down when the battle is over.
Key immune players called “helper T cells” typically help antibodies mature. If the body is invaded by a pathogen, however, these T cells can switch jobs to hunt down viruses, acting more like “killer T cells,” which destroy infected cells. When an infection is over, helper T cells usually go back to their old jobs.
In some people with severe covid, however, helper T cells don’t stand down when the infection is over, said James Heath, a professor and president of Seattle’s Institute for Systems Biology.
About 10% to 15% of hospitalized covid patients Heath studied had high levels of these cells even after clearing the infection. By comparison, Heath found lingering helper T cells in fewer than 5% of covid patients with less serious infections.
In affected patients, helper T cells were still looking for the enemy long after it had been eliminated. Heath is now studying whether these overzealous T cells might inflict damage that leads to chronic illness or symptoms of autoimmune disease.
“These T cells are still there months later and they’re aggressive,” Heath said. “They’re on the hunt.”
Friendly Fire
Covid appears to confuse multiple parts of the immune system.
In October, a study published in Science led by Rockefeller University’s Jean-Laurent Casanova showed that about 10% of covid patients become severely ill because they have antibodies against an immune system protein called interferon.
Disabling interferon is like knocking down a castle’s gate. Without these essential proteins, invading viruses can overwhelm the body and multiply wildly.
New research shows that the coronavirus may activate preexisting autoantibodies, as well as prompt the body to make new ones.
In the January study, half of the hospitalized covid patients had autoantibodies, compared with fewer than 15% of healthy people. While some of the autoantibodies were present before patients were infected with SARS-CoV-2, others developed over the course of the illness.
Other research has produced similar findings. In a study out in December, researchers found that hospitalized covid patients harbored a diverse array of autoantibodies.
While some patients studied had antibodies against virus-fighting interferons, others had antibodies that targeted the brain, thyroid, blood vessels, central nervous system, platelets, kidneys, heart and liver, said Dr. Aaron Ring, assistant professor of immunology at Yale School of Medicine and lead author of the December study, published online without peer review. Some patients had antibodies associated with lupus, a chronic autoimmune disorder that can cause pain and inflammation in any part of the body.
In his study, Ring and his colleagues found autoantibodies against proteins that help coordinate the immune system response. “These are the air traffic controllers,” Ring said. If these proteins are disrupted, “your immune system doesn’t work properly.”
Covid patients rife with autoantibodies tended to have the severest disease, said Ring, who said he was surprised at the level of autoantibodies in some patients. “They were comparable or even worse than lupus,” Ring said.
Although the studies are intriguing, they don’t prove that autoantibodies made people sicker, said Dr. Angela Rasmussen, a virologist affiliated with Georgetown’s Center for Global Health Science and Security. It’s possible that the autoantibodies are simply markers of serious disease.
“It’s not clear that this is linked to disease severity,” Rasmussen said.
The studies’ authors acknowledge they have many unanswered questions.
“We don’t yet know what these autoantibodies do and we don’t know if [patients] will go on to develop autoimmune disease,” said Dr. PJ Utz, a professor of immunology and rheumatology at Stanford University School of Medicine and a co-author of Luning Prak’s paper.
But recent discoveries about autoantibodies have excited the scientific community, who now wonder if rogue antibodies could explain patients’ differing responses to many other viruses. Scientists also want to know precisely how the coronavirus turns the body against itself — and how long autoantibodies remain in the blood.
'An Unfortunate Legacy'
Scientists working round-the-clock are already beginning to unravel these mysteries.
A study published online in January, for example, found rogue antibodies in patients’ blood up to seven months after infection.
Ring said researchers would like to know if lingering autoantibodies contribute to the symptoms of “long covid,” which afflicts one-third of covid survivors up to nine months after infection, according to a new study in JAMA Network Open.
“Long haulers” suffer from a wide range of symptoms, including debilitating fatigue, shortness of breath, cough, chest pain and joint pain, according to the Centers for Disease Control and Prevention. Other patients experience depression, muscle pain, headaches, intermittent fevers, heart palpitations and problems with concentration and memory, known as brain fog.
Less commonly, some patients develop an inflammation of the heart muscle, abnormalities in their lung function, kidney issues, rashes, hair loss, smell and taste problems, sleep issues and anxiety.
The National Institutes of Health has announced a four-year initiative to better understand long covid, using $1.15 billion allocated by Congress.
Ring said he’d like to study patients over time to see if specific symptoms might be explained by lingering autoantibodies.
“We need to look at the same patients a half-year later and see which antibodies they do or don’t have,” he said. If autoantibodies are to blame for long covid, they could “represent an unfortunate legacy after the virus is gone.”
Widening the Investigation
Scientists say the coronavirus could undermine the immune system in several ways.
For example, it’s possible that immune cells become confused because some viral proteins resemble proteins found on human cells, Luning Prak said. It’s also possible that the coronavirus lurks in the body at very low levels even after patients recover from their initial infection.
“We’re still at the very beginning stages of this,” said Luning Prak, director of Penn Medicine’s Human Immunology Core Facility.
Dr. Shiv Pillai, a Harvard Medical School professor, notes that autoantibodies aren’t uncommon. Many healthy people walk around with dormant autoantibodies that never cause harm.
For reasons scientists don’t completely understand, viral infections appear able to tip the scales, triggering autoantibodies to attack, said Dr. Judith James, vice president of clinical affairs at the Oklahoma Medical Research Foundation and a co-author of Luning Prak’s study.
For example, the Epstein-Barr virus, best known for causing mononucleosis, has been linked to lupus and other autoimmune diseases. The bacteria that cause strep throat can lead to rheumatic fever, an inflammatory disease that can cause permanent heart damage. Doctors also know that influenza can trigger an autoimmune blood-clotting disorder, called thrombocytopenia.
Researchers are now investigating whether autoantibodies are involved in other illnesses — a possibility scientists rarely considered in the past.
Doctors have long wondered, for example, why a small number of people — mostly older adults — develop serious, even life-threatening reactions to the yellow fever vaccine. Three or four out of every 1 million people who receive this vaccine — made with a live, weakened virus — develop yellow fever because their immune systems don’t respond as expected, and the weakened virus multiplies and causes disease.
In a new paper in the Journal of Experimental Medicine, Rockefeller University’s Casanova has found that autoantibodies to interferon are once again to blame.
Casanova led a team that found three of the eight patients studied who experienced a dangerous vaccine reaction had autoantibodies that disabled interferon. Two other patients in the study had genes that disabled interferon.
“If you have these autoantibodies and you are vaccinated against yellow fever, you may end up in the ICU,” Casanova said.
Casanova’s lab is now investigating whether autoantibodies cause critical illness from influenza or herpes simplex virus, which can cause a rare brain inflammation called encephalitis.
Calming the Autoimmune Storm
Researchers are looking for ways to treat patients who have interferon deficiencies — a group at risk for severe covid complications.
In a small study published in February in the Lancet Respiratory Medicine, doctors tested an injectable type of interferon — called peginterferon-lambda — in patients with early covid infections.
People randomly assigned to receive an interferon injection were four times more likely to have cleared their infections within seven days than the placebo group. The treatment, which used a type of interferon not targeted by the autoantibodies Casanova discovered, had the most dramatic benefits in patients with the highest viral loads.
Lowering the amount of virus in a patient may help them avoid becoming seriously ill, said Dr. Jordan Feld, lead author of the 60-person study and research director at the Toronto Centre for Liver Disease in Canada. In his study, four of the placebo patients went to the emergency room because of breathing issues, compared with only one who received interferon.
“If we can bring the viral levels down quickly, they might be less infectious,” Feld said.
Feld, a liver specialist, notes that doctors have long studied this type of interferon to treat other viral infections, such as hepatitis. This type of interferon causes fewer side effects than other varieties. In the trial, those treated with interferon had similar side effects to those who received a placebo.
Doctors could potentially treat patients with a single injection with a small needle — like those used to administer insulin — in outpatient clinics, Feld said. That would make treatment much easier to administer than other therapies for covid, which require patients to receive lengthy infusions in specialized settings.
Many questions remain. Dr. Nathan Peiffer-Smadja, a researcher at the Imperial College London, said it’s unclear whether this type of interferon does improve symptoms.
Similar studies have failed to show any benefit to treating patients with interferon, and Feld acknowledged that his results need to be confirmed in a larger study. Ideally, Feld said, he would like to test interferon in older patients to see whether it can reduce hospitalizations.
“We’d like to look at long haulers, to see if clearing the virus quickly could lead to less immune dysregulation,” Feld said. “People have said to me, ‘Do we really need new treatments now that vaccines are rolling out?’ Unfortunately, we do.”
For nearly a year, nursing homes and assisted living centers have been mostly closed to visitors. Now, it's time for them to open back up and relieve residents of crushing isolation, according to a growing chorus of long-term care experts, caregivers, consumer groups and physicians.
They're calling for federal health authorities to relax visitation restrictions in long-term care institutions, replacing guidance that's been in place since September. And they want both federal and state authorities to grant special status to "essential caregivers" — family members or friends who provide critically important hands-on care — so they have the opportunity to tend to relatives in need.
Richard Fornili, 84, who lives in a nursing home in St. Marys, Georgia, supports a change in policies. He hasn't seen any family members since last summer, when a granddaughter, her husband and her two children stood outside his window and called him on the phone. "The depression and sense of aloneness affecting my fellow residents, it's terrible," he said. "Having our relatives come back in to see us, it's an absolute necessity for our well-being."
"At this point, residents are becoming more likely to die of isolation and neglect than COVID," said Jocelyn Bogdan, program and policy specialist at the National Consumer Voice for Quality Long-Term Care, citing new data linking COVID-19 vaccination to sharp declines in COVID-related deaths. Her organization has launched a petition drive calling for nursing homes to safely reopen and for essential caregivers to have unrestricted access to loved ones.
Since late December, when vaccinations began, COVID cases in nursing home residents have plunged 83%, while deaths have dropped by 66%, according to an analysis by KFF. As of Monday, 4.6 million residents and staff members in nursing homes and other congregate facilities had received at least one shot of the Pfizer-BioNTech or Moderna vaccine, including more than 2 million who had received a second dose.
Vaccines have "changed everything" and nursing homes are now among "the safest places you can be in your community in terms of COVID," said Ruth Katz, senior vice president of public policy at LeadingAge, an association representing more than 5,000 nonprofit nursing homes, assisted living centers and senior housing providers.
Last week, LeadingAge called for federal authorities to expand visitation in a letter to top officials at the White House, the Centers for Medicare & Medicaid Services and the Centers for Disease Control and Prevention. In an email, the American Healthcare Association, which represents more than 14,000 long-term care providers, also urged CMS and the CDC to review its visitation guidance. AARP, the nation's most powerful seniors' lobby, chimed in with a letter noting "a critical need" for new recommendations.
Medical directors at long-term care facilities are also weighing in while sounding a cautious note in new guidance about resuming communal activities and visitation in long-term care facilities. With new COVID variants circulating and significant numbers of staffers and potential visitors still unvaccinated, "we're recommending a measured, step-wise approach," said Dr. Swati Gaur, chair of the infection advisory committee for AMDA — the Society for Post-Acute and Long-Term Care Medicine.
Facilities that reopen to family members should do so "carefully," she said, scheduling visits, screening those visitors for symptoms and ideally requiring a negative COVID test before entry; limiting the number of visitors in a facility at any time; sending them to designated visitor sites, not residents' rooms; and requiring the use of masks and gloves, among other precautions.
No one wants to see COVID outbreaks reappear in long-term care facilities, Gaur said — the site of nearly 173,000 COVID-related deaths, about 35% of the nation's total.
CMS instructed nursing homes to lock down almost a year ago, on March 13, as the coronavirus pandemic accelerated and the CDC said no one except relatives making end-of-life visits should be let in. In September, new recommendations allowed outdoor visits, so long as safety precautions such as physical distancing were in place, and indoor visits, so long as a facility was COVID-free for 14 days and the positivity rate for COVID cases in the surrounding community was under 10%.
Federal recommendations apply to nursing homes. States regulate assisted living and other congregate care facilities but tend to follow the CDC's lead. In practice, long-term care facilities vary considerably in how they implement recommended policies.
Also, federal authorities recommended that relatives be able to make "compassionate care" visits when a resident is emotionally distressed, grieving the loss of friends or family members, losing weight or adjusting poorly to the recent loss of family support. But many nursing homes continue to deny these visits, and enforcement needs to be strengthened, AARP observed in its letter.
Melody Taylor Stark said her request for a compassionate care visit with her husband, Bill Stark, was denied in October, when his congestive heart failure worsened. Bill, 84, a resident at Huntington Drive Health and Rehabilitation in Arcadia, California, for five years, was subsequently hospitalized with pneumonia. Stark said she was permitted only one 15-minute visit with him, on Nov. 17, after he returned to Huntington — the last time she saw Bill before his death on Nov. 22. The administrator at Huntington Drive did not respond to a request for comment.
The Essential Caregivers Coalition, of which Stark is a member, is asking that every long-term care resident be able to designate one or two essential caregivers who can come in and out of facilities regularly to provide hands-on care to loved ones, as they did before the pandemic. As the anniversary of lockdowns approaches, the coalition has organized email blasts and letter-writing campaigns to federal and state authorities, a traveling lawn sign campaign in more than a dozen states and gatherings at several state capitols. The campaign's slogan: Isolation Kills, Too.
Mikko Cook, 49, of Ventura, California, is one of the group's co-founders. Her father, Ron Von Ronne, 77, has late-stage Alzheimer's disease and lives in a 200-bed nursing home in Albany, New York. Before the pandemic, Cook's brother visited almost every day.
"The home was severely understaffed and when my family members would go in to take care of him, my father's sheets would be soiled. He wouldn't have showered. The bathroom was never clean. But they would take care of that," Cook said.
After the lockdown, Von Ronne went more than three months without seeing or talking to family members. Over the past year, he nearly stopped communicating, was assaulted by a fellow resident and lost almost all his belongings, which were either misplaced or stolen, Cook said. Von Ronne has since had two outdoor visits with relatives, and three short visits in family members' homes at Christmas and in January and February.
Mary Daniel, 58, founded another activist group, Caregivers for Compromise, after getting a part-time job in July at her husband's assisted living center in Jacksonville, Florida — the only way she could see him. Steve Daniel, 67, has early-onset Alzheimer's, and she had visited every evening before the pandemic.
After stories about her went viral, Daniel created Facebook groups in every state for caregivers who wanted more access to their loved ones. Now, Caregivers for Compromise chapters in Connecticut, Florida, Illinois, Kentucky, North Carolina, New York, Pennsylvania, Tennessee, Texas and West Virginia are active in the Isolation Kills, Too campaign.
"We're getting impatient: Our loved ones' quality of life is deteriorating every single day. My husband has been vaccinated and he wants to go outside and feel the sunlight on his face. It's time to open back up and let him live whatever time he has left with freedom," Daniel said. "You cannot protect people like him forever, from everything."
The incidents range from 335 discarded doses in Lee County, North Carolina, that were damaged in shipping, to nearly 5,000 doses that went to waste in Tennessee in February.
This article was published on Thursday, March 4, 2021 in Kaiser Health News.
By Blake Farmer, Nashville Public Radio As the speed of COVID vaccinations picks up, so do the reports of doses going to waste. And it's more than just a handful at the end of the day because of a few appointment cancellations. Health officials are trying to rein in waste without slowing down vaccinations.
The incidents range from 335 discarded doses in Lee County, North Carolina, that were damaged in shipping, to nearly 5,000 doses that went to waste in Tennessee in February, prompting additional federal oversight.
"I definitely have been losing some sleep over this, for sure," said Beth Ann Wilmore, nursing director at Mercy Community Healthcare in Franklin, Tennessee. She manages the COVID vaccine inventory at the nonprofit clinic, which started receiving shipments a month ago.
Clinics like Mercy are accustomed to handling vaccines, but none so precious as those for COVID, which have special refrigeration needs.
"I was definitely waking up in the middle of the night wondering how the temperatures were doing, and thinking, 'OK, I hope it's good, and it's not giving me a flag or anything.'"
Many community health centers are receiving the Moderna vials, which are easier to handle than the Pfizer-BioNTech vaccine but still tricky. The vials last 30 days after they're out of the deep freeze, compared with only about five for Pfizer. But once the seal on the vial is broken, there are just six hours to use the shots.
So far, no waste has occurred at Mercy. But Wilmore has heard horror stories from around the state.
In neighboring Murfreesboro, Tennessee, the local school district received a thousand doses for a teacher vaccination event the last weekend of February. But they were put in an unapproved freezer. The temperature sensor on the shipment flashed an error code. Out of caution, they were advised to throw them all away.
"It hurts my heart," said Dr. Lisa Piercey, health commissioner of Tennessee, which has disclosed one of the country's biggest spikes in reported spoilage.
She said the losses are painful because the shots are "priceless" in the midst of this deadly pandemic. But it's one risk of having so many places to get the vaccine.
To increase access and equity, there are now more than 700 vaccination sites across Tennessee, with more planned to open as vaccine shipments grow in the coming weeks.
"It definitely raises the level of concern when you have more partners — particularly partners that are not under your direct control," she said.
Even Tennessee's large, urban health departments — which operate independently of the state health department — are running into trouble.
In Knoxville, a thousand doses were thrown out, apparently confused for a related shipment of dry ice. In Memphis, the county health director has resigned after being slow to disclose that nearly 2,500 doses were allowed to expire on several occasions — related to winter weather as well as poor management in the county's pharmacy.
The state has called in staff from the Centers for Disease Control and Prevention to monitor vaccine distribution in Shelby County and stepped up audits for all local health departments in the state.
There are so many opportunities for doses to go bad. In West Palm Beach, Florida, the power on a mobile refrigerator was turned off. In Connecticut, a fridge door didn't close properly, though the doses were salvaged in time in consultation with Moderna.
Health officials have gone to great lengths to avoid wasting doses, like an impromptu mass vaccination event in Nashville's homeless shelters after winter storms canceled hundreds of appointments.
Dr. Kelly Moore, deputy director of the Immunization Action Coalition, said a little spoilage is expected. It's still well less than 1% of doses, even in states like Tennessee and Florida that have disclosed big losses.
"I would be more worried if I saw reports of zero doses wasted," Moore said, because then her concern would be a lack of transparency.
"You want to see some waste because that means people are paying attention and that real-world accidents happen and that they're being responded to properly," she said. "You just don't want to see negligence."
There's hope that mishaps will be easier to avoid with the newly authorized Johnson & Johnson vaccine. Aside from being a single dose, it can last in a normal refrigerator for months.
To get vaccinated, caregivers need to show a personalized letter — attesting they are family caregivers of a child with disabilities — from their regional center.
This article was published on Wednesday, March 3, 2021 in Kaiser Health News.
By Jackie Fortiér, KPCC In California, confusion and botched communication has caused some eligible parents and family caregivers of people with disabilities to be turned away at COVID vaccination sites.
Oscar Madrigal is one of those caregivers. His two sons are on the autism spectrum and his youngest requires almost constant care.
As the vaccination effort began, Madrigal hoped he and others like him would be prioritized, and he didn't have long to wait. In January, the California Department of Developmental Services issued a general letter stating that family members like him are considered health workers and immediately qualify for the vaccine.
Through Facebook groups, parents of kids with disabilities excitedly shared the news.
Madrigal was relieved. As his youngest son's primary caregiver, he didn't know how his family would cope if he came down with the coronavirus.
But he soon noticed the tone of the messages on social media changed. Parents reported they'd been turned away at the vaccine sites. Only families who receive services from one of California's regional centers — nonprofits that help people with disabilities — are eligible.
To get vaccinated, caregivers need to show a personalized letter — attesting they are family caregivers of a child with disabilities — from their regional center. Some were mistakenly presenting the more general form letter issued by the Department of Developmental Services from January as proof of their eligibility.
"Lots of people were xeroxing it. Frankly, lots of people were using it inappropriately to claim that they were in fact the healthcaretakers of their children," said Barbara Ferrer, director of the L.A. County Public Health Department.
Madrigal, whose children do get services from a regional center, dutifully got the required personalized paperwork and brought it to an L.A. County vaccination site. And, still, he was turned away.
"She didn't even look at my documentation," he said. "She just said, 'We have no way of verifying this.'"
The county has hundreds of vaccination sites, and Madrigal found out the new rules haven't trickled down to all staff members.
"I think to give families some kind of expectation and then have that expectation taken away becomes really, really draining on us," he said.
Vaccine Deployment Is the 'Wild West'
"The culture of the vaccine deployment world right now is the Wild West," said Andy Imparato, executive director of Disability Rights California and a member of the state's vaccine advisory council.
Imparato has heard stories like Madrigal's from around the state.
"Lots of things are happening on the ground in different ways, depending on who is screening people for the vaccine, and how much training they're giving the people that are doing the screening. It's not consistent," he said.
That's because each of dozens of city and county public health departments has its own approach to the vaccination process.
After weeks of confusion, the California Department of Public Health clarified on its website that parents and caregivers of people with disabilities should be getting the vaccine now.
It's still a patchwork system. CDPH left the decision of who qualifies as a family caregiver to each regional center. In an emailed statement, CDPH said regional centers can determine who the "individuals who have specialized healthcare needs are." That means some parents of children with autism may receive a letter from their regional center letting them know they qualify for the vaccine, while other parents could be turned away by their regional center.
Imparato said he's afraid the early confusion caused damage — especially with non-English-speaking caregivers who've already met frustration at a vaccination site.
"The authority figure has told them that they're not eligible, and they're going to go home and wait until they are eligible. And that makes me very sad, because that's not accurate," Imparato said.
But parents with the means and knowledge to navigate the system — people like Oscar Madrigal — have pushed back. After writing to his elected officials about the mix-up with his vaccination, Madrigal got another appointment.
'Our Lives Matter. We're Not Castaways'
Cindy Liu and her husband wanted to get the vaccine to help protect their daughter, who has Down syndrome. It's on the list of conditions the Centers for Disease Control and Prevention has linked to serious illness from COVID-19.
Liu is paid by the state to care for her daughter because the girl's condition is severe.
Liu brought her paperwork to her vaccination appointment at the Goebel Adult Community Center in Ventura County, the same place her husband had gotten the shot just days before with the same documents from their regional center.
"They barely even looked at my paperwork," she said. "They saw the letterhead and said, 'That doesn't qualify you.'"
Liu said staff questioned her repeatedly and implied her documentation could have been faked, leaving her frustrated and demoralized.
"Just give us the benefit of the doubt," she said. "Our lives matter. We're not castaways."
Liu eventually got her first vaccination after staff members accepted a state-issued pay stub as proof. But she wonders if she'll have to go through it all again in a few weeks when she returns for her second shot.
This story is part of a partnership that includes KPCC, NPR and KHN.
As the Biden administration accelerates a plan to use pharmacies to distribute COVID-19 vaccines, significant areas of the country lack brick-and-mortar pharmacies capable of administering the protective shots.
A recent analysis by the Rural Policy Research Institute found that 111 rural counties, mostly between the Mississippi River and the Rocky Mountains, have no pharmacy that can give the vaccines. That could leave thousands of vulnerable Americans struggling to find vaccines, which in turn threatens to prolong the pandemic in many hard-hit rural regions.
And in those areas without pharmacies, rural residents may have to drive long distances to get shots, and do so twice for two-dose vaccines. An analysis by the University of Pittsburgh School of Pharmacy and the West Health Policy Center found that 89% of Americans live within 5 miles of a pharmacy. But more than 1.6 million people must travel more than 20 miles to the nearest pharmacy, which can mean facing difficult weather and road conditions in remote areas.
"If pharmacies are closed, especially in places where there's no other healthcare provider, then you've got essentially a healthcare desert," said Michael Hogue, president of the American Pharmacists Association. "You have to be dependent on either a mobile clinic coming in from another area to provide vaccines, or the citizens are going to have to drive farther to get a vaccine."
So far, with a limited quantity of doses and strict limitations on who is eligible, that hasn't been a problem. But as vaccination opens up to the general public and supplies of the vaccines increase, local health departments may be overwhelmed with demand and may need to offload the task of vaccinating local residents to other healthcare providers.
"It's probably not playing out yet because we're not getting enough supply," said Keith Mueller, director of the Rural Policy Research Institute's Center for Rural Health Policy Analysis. "That means we have some time for those local health departments to figure this out: Who in my radius, if you will, has the capacity to administer vaccines?"
From 2003 to 2018, 1,231 independent rural pharmacies closed, Mueller's team found, leaving some 630 rural communities with no retail drugstore. The changing economics in the pharmacy industry did them in, a combination of national pharmacy chains expanding and consolidating, big-box stores and supermarkets opening their own competing pharmacies and pharmacy benefit managers eating into small-pharmacy profits. Mail-order options siphoned off business.
And you can't get vaccines in the mail.
In many towns, those pharmacies represented the last bastion of healthcare in their communities. Now more than ever, residents are feeling the void.
"We have no medical infrastructure," said DeAnne Gallegos, a spokesperson for the San Juan County health department in southwestern Colorado. "We don't even have a doctor."
With the closest pharmacy located in a neighboring county an hour away in Durango, vaccinations in San Juan County have been handled by the public health director and two nurses. They hold weekly vaccination clinics if they get any doses. As of Feb. 18, the health department had fully vaccinated 298 of its 700 residents.
Counties are allocated doses based on their year-round populations, but the health department hopes to vaccinate out-of-staters who visit as well. San Juan County deals with an influx of tourists and second-home owners coming from states such as Texas, Arizona and Florida, where the pandemic has hit harder and vaccination rates are lagging. So the health department could end up vaccinating more than 200% of San Juan County's official population to keep COVID out.
"Our attitude is, no matter what your driver's license or your ZIP code says, if you are living within our tightknit community, that is someone we hope the state would allow us to bring into the fold," Gallegos said.
But that stresses what she called the frail structure the department had in the first place.
"It's our responsibility to make appointments, manage the data, make contact, receive phone calls," Gallegos said. "When you don't have the staff or the budget to hire additional staff, that also makes it very difficult."
Farther east, Custer County hasn't had a pharmacy for years. Only recently, a pharmacist who lives in the county but works in an adjacent county an hour away has started delivering prescriptions to Custer residents when she returns home after each shift.
But she can't bring vaccines home from work.
Instead, a public health nurse who was due to retire at the end of 2020 decided to stay on to vaccinate residents with the help of another nurse and retired healthcare workers who maintained their licenses. According to Custer County Public Health Agency Director Dr. Clifford Brown, they have vaccinated more than 630 of the county's 5,200 residents.
In an ideal world, they could have handed off the task to a pharmacy.
"We do feel the pinch," Brown said. "I wake up about 3 o'clock in the morning thinking about, how in the world are we going to stretch things to cover for this day?"
Pharmacies offer distinct advantages as vaccine providers. Hospitals, which didn't traditionally vaccinate the general public, have had to create programs to distribute their allocated doses.
In Colorado, pharmacies give over a million flu shots a year, said Emily Zadvorny, executive director of the Colorado Pharmacists Society, and, particularly in smaller towns, have a much closer relationship with their customers than larger healthcare providers do. She pointed to a pharmacist in Kiowa County, Colorado, who pulled a list of all his customers age 70 and up and called each of them to schedule their COVID vaccinations.
"They have so much more capacity than they have supplies," Zadvorny said. "It's just a slow process of ramping up."
Even where pharmacies exist, it's been a challenge for independent drugstores to participate in the COVID vaccine rollout. For influenza, pneumonia or shingles vaccines, stores typically order as many doses as they think they can sell, which get delivered alongside the pills they distribute.
The COVID vaccines, on the other hand, are being distributed through a national program that comes with a significant learning curve for pharmacies. The federal Centers for Disease Control and Prevention partnered with 21 pharmacy chains, including four networks of independent community pharmacies that give smaller drugstores more purchasing power. According to the National Community Pharmacists Association, those four networks include about 8,000 of the 21,000 community pharmacies nationwide. Pharmacies that are not part of those networks can apply to be vaccine providers in their states.
"The biggest hurdle for most pharmacies is just getting approved," said Kyle Lancaster, pharmacy director for Our Valley Pharmacy, a three-pharmacy chain in rural Lincoln County, Wyoming.
Our Valley applied to federal and state health agencies and had to upgrade its freezers with digital data loggers, which upload the pharmacies' refrigerator and freezer temperatures and report them directly to the CDC.
Most small pharmacies like his, he said, had been limited to the Moderna vaccine, which has less stringent temperature requirements than Pfizer's version. The Johnson & Johnson vaccine, which was recently approved, would be even easier for rural pharmacies to handle.
Lancaster said he's unsure how many doses of the vaccine his chain will get or when.
Those uncertainties leave residents such as Nan Burton, 63, worried about how to get vaccinated. Last year, she and her husband decided to ride out the pandemic in their vacation home in Lincoln County, trading apartment living in Seattle for the wide-open, physically distanced spaces of Star Valley Ranch, about 8 miles from the nearest Our Valley branch. With plans to retire fully next year, now they're staying for good.
So far, Lincoln County — more than three times the size of Rhode Island — has vaccinated about 2,500 of its nearly 20,000 residents, mainly through the local hospital. But with no major chain pharmacies in the region, the county must wait for independent community pharmacies, such as Our Valley, to get up to speed.
Burton said she and her husband have little choice but to wait and hope that the vaccine distribution logistics are sorted out. They'd be willing to drive hours to get a vaccine if they knew they weren't taking it away from someone else in need.
"Until there's some kind of a national push to do outreach to rural communities, I think we're going to be in trouble," Burton said.
While statistics indicate that children have largely been spared from the worst effects of COVID, little is known about what causes a small percentage of them to develop serious illness.
This article was published on Wednesday, March 3, 2021 in Kaiser Health News.
A slumber party to celebrate Delaney DePue's 15th birthday last summer marked a new chapter — one defined by illness and uncertainty.
The teen from Fort Walton Beach, Florida, tested positive for COVID-19 about a week later, said her mother, Sara, leaving her bedridden with flu-like symptoms. However, her expected recovery never came.
Delaney — who used to train 20 hours a week for competitive dance and had no diagnosed underlying conditions — now struggles to get through two classes in a row, she said. If she overexerts herself, she becomes bedridden with extreme fatigue. And shortness of breath overcomes her in random places like the grocery store.
Doctors ultimately diagnosed Delaney with COPD — a chronic lung inflammation that affects a person's ability to breathe — said Sara, 47. No one has been able to pinpoint the cause of her daughter's decline.
"There's just no research there," she said. "Kids are not supposed to have this kind of condition."
While statistics indicate that children have largely been spared from the worst effects of COVID, little is known about what causes a small percentage of them to develop serious illness. Doctors are now reporting the emergence of downstream complications that mimic what's seen in adult "long haulers."
In response, pediatric hospitals are creating clinics to provide a one-stop shop for care and to catch any anomalies that could otherwise go unnoticed. However, the treatment offered by these centers could come at a steep price tag to patients, health finance experts warned, especially given that so much about the condition is unknown.
Nonetheless, the increasing number of patients like Delaney is leading to a more structured follow-up plan for kids recovering from COVID, said Dr. Uzma Hasan, division chief of pediatric infectious diseases at St. Barnabas Medical Center in New Jersey.
"The cost of missing these children means a horrible event," she said.
Unanswered Questions
More than 3 million children and young adults had tested positive for COVID in the United States as of Feb. 18, the American Academy of Pediatrics and the Children's Hospital Association report. Most of these kids experience mild, if any, symptoms.
Over the course of the pandemic, though, it has become apparent that some children develop serious and potentially long-term problems.
The most well-known of these complications is called "multisystem inflammatory syndrome in children," or MIS-C. Symptoms — which include high fever, a skin rash and stomach pain — can appear up to a month after getting COVID. Around 2,000 cases have been identified in the United States. Black and Hispanic children make up a disproportionate share: 69%.
But clinicians also said they're increasingly hearing of children seeking help for different complications, such as fatigue, shortness of breath and loss of smell, that don't go away.
Clinics for Child Long Haulers
At Norton Children's Hospital in Louisville, Kentucky, clinicians set up a clinic in October after receiving calls from area pediatricians who had patients with long-haul symptoms.
No one knows how often children develop these symptoms, how many already have the illness or even what to name it, said Dr. Kris Bryant, president of the Pediatric Infectious Diseases Society, who works at the hospital.
The children see an infectious diseases doctor who then refers them or orders tests as necessary.
So far, the clinic has seen about 25 patients with a wide range of symptoms, said Dr. Daniel Blatt, a pediatric infectious diseases specialist involved with the clinic. Because COVID mimics symptoms associated with a variety of other illnesses, he said, part of his job is to rule out any other possible causes.
"Because the virus is so new," Blatt said, "there's a presumption that everything is COVID."
Similarly, an ad hoc clinic for other young patients has been set up within the cardiology department at the Children's Hospital & Medical Center in Omaha, Nebraska. Patients are screened to assess the heart's structure and how it functions. She said they've been seeing six to eight patients per week.
"The question I can never answer for the parents," said Dr. Jean Ballweg, a pediatric cardiologist at the hospital who also works at the clinic, "is why one child and not another?"
So far, Ballweg said, she's seen no published literature on the heart health of children who develop these symptoms after recovering from COVID. By standardizing how doctors in the clinic collect data and treat patients, Ballweg said, she hopes the information will provide some clues as to how the virus affects a child's heart. "Hopefully, we can look at the collective experience and recognize patterns and provide better care."
University Hospitals Rainbow Babies & Children's Hospital in Cleveland is involved in creating a multidisciplinary clinic that will consolidate care by giving patients access to specialists and integrative medicine like acupuncture.
Clinicians saw a need for the unit after teenagers with post-COVID symptoms began arriving at the hospital system's clinic for adults with long-haul symptoms, said Dr. Amy Edwards, a pediatric infectious diseases specialist at the hospital involved with the project. So far, she said, she's heard of about eight to 10 children who could need care.
The clinic, yet to open, intends to recruit more children through announcements, said Edwards. Identifying the right patient for the clinic will be complicated, she added. There's no test to check for post-COVID symptoms and there's no agreed-on definition for the condition. Doctors also don't know whether some symptoms can be cured, she said, or last a lifetime.
"The question is if we're going to be able to do anything about it," Edwards said.
'I Don't Know' Is a Difficult Answer
Even Dr. Abby Siegel, a 51-year-old pediatrician who works in Stamford, Connecticut, couldn't find answers for her daughter. Siegel tested positive for the virus last March after being exposed at work. She believes she passed on the virus to her husband and their then-17-year-old daughter, Lauren.
The family recovered by early April, but then both Siegel's daughter and husband took a turn for the worse. Lauren — who played rugby — started feeling fatigued, shortness of breath and a racing heart rate. Siegel took her to multiple specialists — including a friend who is a cardiologist — all of whom doubted her.
Lauren, now 18, receives care at Mount Sinai Hospital's adult COVID care center and is improving. Siegel said the clinic has affirmed her daughter's experience and helped her get more information about this condition. She wishes the doctors they had visited earlier had been more honest about the unknowns surrounding post-COVID health problems.
"It's amazing how we're met with the denial rather than the 'I don't know,'" she said.
There's another wrinkle that often comes with the I-don't-know response.
The uncertainty swirling around these symptoms in children will likely require clinicians to run a battery of tests — procedures that could potentially cost their families a lot of money, said Glenn Melnick, a health economist and professor at USC Sol Price School of Public Policy. Pediatric hospitals usually have little regional competition, he said, allowing them to charge more for their specialized services.
For families without comprehensive health insurance or who face high deductibles, many tests could mean big bills.
Gerard Anderson, a professor of health policy and management at Johns Hopkins University, said these clinics' potential profitability hinges on several factors. If a clinic serves a large enough area, it could attract enough patients to earn substantial dollars for the affiliated pediatric hospital. A child's healthcare coverage plays a role as well — those who are privately insured are more lucrative patients than those covered by public programs like Medicaid, but only as long as the family can shoulder the financial burden.
"If I had a kid who had this problem," said Anderson, "I'd be very concerned about my out-of-pocket liability."
Many parents are filled with angst as they prepare for their children to exit a year of pandemic isolation: Will it be OK to send them to school, per the recent recommendation from the Centers for Disease Control and Prevention? Will school feel like school if students are masked and can’t trade snacks? Will children’s development be impaired by nearly a year of seeing few friends?
With 20-20 hindsight, I can provide some reassurance, because my kids were 8 and 10 when SARS hit Beijing nearly two decades ago, shutting down the city for months: Your children will likely be fine, and maybe even better as human beings for having lived through this tragic experience.
I’ve heard Americans say that SARS was not as bad as covid-19. It was if you lived in Beijing in 2002-03, as my family did. SARS didn’t hit the United States, probably in part because it was much harder for Chinese to get passports or visas in those days, and there were far fewer flights between the countries.
While SARS, as far as we know, isn’t spread as readily — especially by people who were asymptomatic — it was far deadlier than covid, killing more than 50% of those older than 64 who were infected, and 14% to 15% of patients overall.
For about five months, my family’s SARS lockdown was similar to your family’s covid experience: Fear was ever-present. Schools, movie houses, restaurants and stores closed. Vacations were canceled. Everyone wore masks, many of them makeshift. Pharmacy shelves emptied. Temperature checks were everywhere, even at random stops on country roads. (And under an authoritarian government, quarantines are not suggestions — people could be forcibly removed from their family homes and sent to quarantine sites.)
Making matters worse, the Chinese government covered up the SARS epidemic, posting soldiers outside of hospital gates as ambulances streamed in. The public had — probably still has — no idea how many were ill and dying.
Though many foreigners left Beijing, we stayed and kept our kids in the International School, one of the few schools that remained open.
My logic was that they were safer in the controlled environment of their well-run elementary school than going through a crowded airport and getting on a plane to return to New York. And safer than hanging out at home, with a babysitter and a few friends coming and going.
Studies in the United States and Europe in the past six months suggest that a similar logic should apply now. Rates of covid are lower in communities where schools have opened than in nearby areas where they have not. That makes sense: In elementary school, kids’ days are filled with many requirements they hate but abide by: sitting at a desk. Standing in line. The daily math quiz. Some new anti-covid rules can join the list.
When SARS came to Beijing, the rules at school multiplied and were more strictly enforced. Students washed their hands for 20 seconds, as frequently as instructed. Their temperatures were taken every time they walked in the door. (There were no tests for SARS.) They sat a good distance apart, and couldn’t share snacks. Parents were warned, on pain of punishment, not to send their children to school if they were the slightest bit ill.
With only about 10 to 15 kids per class after many had fled, the density was such that they did not have to wear masks, which were hard to score anyway. Today, some public health officials feel that masking is not essential for children when good classroom hygiene measures and distancing are in place. Masks aren’t used in many European primary schools that have remained open, without serious consequence. Still, if I had young kids right now, I would want them masked in school — it’s not a big deal for some extra security, so why not?
As the CDC notes, American schools need to be given resources to, for example, improve ventilation. Maybe schools will have to be creative to keep students better-spaced: splitting days, where half the children go in the morning and half later. Maybe nearby office buildings could offer room for classes. Maybe no indoor sports or choir concerts.
Schooling can be made safe during the pandemic without waiting for every teacher and staff member to be vaccinated, as some teachers unions are demanding. The parental angst that is entirely justified now is the concern about how far their children might have fallen behind academically during a year of remote instruction. Children from low-income families, especially, need in-person school.
Living through SARS, I think, taught my children important lessons, and not just about hygiene. It taught them how to make sacrifices for the sake of friends, family and community. It helped them model how to live carefully, but not paralyzed by fear.
Today, both 20-somethings, they don’t remember much about that period, though they have vivid memories of birthday parties before and after. The months lived with a thousand restrictions were just filed away as one of those formative life experiences. SARS helped teach them that most important life lesson — resilience — and the understanding that during hard times you don’t get everything you want.