Coronavirus Deranges the Immune System in Complex and Deadly Ways

KFF Health News, March 4, 2021

Immune cells, which protect the body from infections, need to be "educated" to recognize bad guys — and to hold their fire around civilians.

This article was published on Thursday, March 4, 2021 in Kaiser Health News. This story also ran on USA Today.

By Liz Szabo

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.

Some covid survivors have developed serious autoimmune diseases, which occur when an overactive immune system attacks the patient, rather than the virus. Doctors in Italy first noticed a pattern in March 2020, when several covid patients developed Guillain-Barré syndrome, in which the immune systems attacks nerves throughout the body, causing muscle weakness or paralysis. As the pandemic has surged around the world, doctors have diagnosed patients with rare, immune-related bleeding disorders. Other patients have developed the opposite problem, suffering blood clots that can lead to stroke.

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 some patients, covid triggers autoantibodies that target the immune system itself, leaving patients without a key defense against the coronavirus.

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.”

Reopening of Long-Term Care Facilities Is 'an Absolute Necessity for Our Well-Being'

KFF Health News, March 4, 2021

Since late December, when vaccinations began, COVID cases in nursing home residents have plunged 83%, while deaths have dropped by 66%.

This article was published on Thursday, March 4, 2021 in Kaiser Health News.

By Judith Graham

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."

Judith Graham: khn.navigatingaging@gmail.com, @judith_graham

Accidentally Trashed, Thawed or Expired: Reports of COVID Vaccine Spoilage

KFF Health News, March 4, 2021

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. 

This story was produced in partnership with Nashville Public Radio, NPR and KHN.

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

In California, Caregivers of People With Disabilities Are Being Turned Away at COVID Vaccine Sites

KFF Health News, March 3, 2021

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.

Jackie Fortiér, KPCC: @jackiefortier

Rural Americans in Pharmacy Deserts Hurting for COVID Vaccines

KFF Health News, March 3, 2021

In areas without pharmacies, rural residents may have to drive long distances to get shots, and do so twice for two-dose vaccines.

This article was published on Wednesday, March 3, 2021 in Kaiser Health News.

By Markian Hawryluk

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.

Markian Hawryluk: MarkianH@kff.org, @MarkianHawryluk

Children's Hospitals Grapple With Young COVID 'Long Haulers'

KFF Health News, March 3, 2021

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.

By Carmen Heredia Rodriguez

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."

Carmen Heredia Rodriguez: CarmenH@kff.org, @ByCHRodriguez

Beijing's SARS Lockdown Taught My Children Resilience. Your Covid Kids Will Likely Be Fine.

KFF Health News, March 2, 2021

For about five months, my family's SARS lockdown was similar to your family's covid experience: Fear was ever-present.

This article was published on Tuesday, March 2, 2021 in Kaiser Health News. This story also ran on The Washington Post.

By Elisabeth Rosenthal

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.

Sorting Out How Politics, Policies Figure in Flap Over New York Nursing Home COVID Death Rates

KFF Health News, March 2, 2021

Did the governor intentionally fudge nursing home death counts to deflect attention from the impact of an ill-advised directive?

This article was published on Tuesday, March 2, 2021 in Kaiser Health News.

By Michelle Andrews

The plaudits have faded for New York Gov. Andrew Cuomo. Once hailed as a paragon of pandemic governing, he's since come under scorching criticism for undercounting the state's COVID deaths among nursing home residents by as much as half. The tallying flap drew attention to another misstep: a policy last March that directed nursing homes to accept COVID-positive patients from hospitals, potentially exposing high-risk, medically vulnerable nursing home residents to the deadly virus.

Did the governor intentionally fudge nursing home death counts to deflect attention from the impact of an ill-advised directive? That depends on whom you ask. The governor's allies say the policy was a good-faith effort to assist hospitals that feared they were going to be overrun by COVID patients. The counting snafu, they say, arose out of an excess of caution because the administration didn't want to double count deaths. Critics, and there are many, point to a different motivation. They suggest the governor didn't want his image as a competent pandemic leader to be tarnished by a wrongheaded policy that the administration withdrew within weeks.

Interest in these issues is unlikely to abate anytime soon. Following the critical report by the New York attorney general that highlighted the undercounting problem, the governor's top aide came under fire for admitting to state legislators that the administration withheld complete nursing home COVID death data from them. Now the FBI and the U.S. attorney's office in Brooklyn have reportedly opened an investigation into the handling of long-term care facilities during the pandemic.

Judging from the number of questions and comments KHN and PolitiFact have fielded on the subject, it's clear that many readers are confused and concerned. Here's a quick guide to help sort it out.

By the Numbers

Cuomo frequently touts how well New York stacks up against other states in preventing nursing home COVID deaths. In September, he said New York ranked 46th out of 50 states, a claim we examined and found to be Mostly False. A key problem is that until recently the New York totals didn't include deaths of nursing home residents that occurred in hospitals.

State comparisons are tricky. But most other states, perhaps all of them, do include hospital deaths in their COVID nursing home totals, said Priya Chidambaram, a senior policy analyst at KFF, the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.)

"New York's decision to pull out the hospital-based deaths was not based on standard practice," she said, noting that federal rules for reporting COVID nursing home deaths require that states include off-site deaths in hospitals.

New York's unorthodox exclusion of hospital deaths was always noted in the fine print on the data sheets. But the governor didn't offer a disclaimer when he boasted of the state's better-than-average performance based on an incomplete count.

Just how incomplete became evident when New York Attorney General Letitia James released a report in late January that found the state's published data on nursing home COVID deaths undercounted the total by up to 50%. The reason: the exclusion of hospital deaths as well as underreporting by some nursing homes.

The state soon released a revised total of nearly 15,000 deaths among residents of long-term care facilities, about double the earlier tally of roughly 8,500, as reported by news outlets such as The New York Times and The Associated Press. The Empire Center set that number higher, around 8,940.

Using the updated, more comprehensive figures, the state's COVID death rate for nursing homes of roughly 29% is still somewhat better than the national average of 37%, said Chidambaram, who tracks COVID mortality in long-term care facilities. Last month, we published a fact check examining Cuomo's recent claims about below-average nursing home COVID deaths and found them to be Mostly True.

Advocates and public health officials agree it's crucial to incorporate hospital COVID deaths into the nursing home mortality figures.

"If you can't source [the infection] back to the place it occurred, you can't stop it," said Christopher Laxton, executive director of the Society for Post-Acute and Long-Term Care Medicine, which represents medical personnel who work in those settings.

The New York State Senate passed a bill last month that would require the Department of Health to record the COVID deaths of nursing home residents who subsequently die in hospitals as nursing home deaths.

The March 25 Policy

Last March, New York was the epicenter of a disease outbreak whose scope was still unknown. More than a thousand people were being hospitalized every day in the state, and experts were genuinely concerned that hospitals would run out of space to treat the influx of COVID patients.

Cuomo issued the controversial March directive instructing nursing homes to take in recovering COVID patients who'd been hospitalized. There was an almost immediate outcry that the policy seemed to put frail, elderly nursing home residents, who were particularly vulnerable to the virus, at enormous risk.

The governor said he was simply following Centers for Disease Control and Prevention guidance, a claim we investigated and found to be Mostly False. But was the administration's policy responsible for sowing the seeds of infection that killed thousands of nursing home residents, as a top Trump administration official claimed? We examined that claim and found it, too, was Mostly False.

On May 8, the administration amended the March directive and said hospitals could not discharge patients to nursing homes without a negative COVID test.

Last summer, the state health department put out a self-serving report claiming the timeline of when the 6,327 recovering COVID patients entered the nursing homes and when nursing home residents died showed that the COVID-positive patients could not have been a driver of infections or deaths in nursing homes. The report pinned the blame for spreading disease on staff members and visitors.

Epidemiologists said the report's position that the governor's policy didn't open nursing homes to COVID infections was nonsense. But they agreed that staff and visitors likely played a larger role in introducing the virus.

The Empire Center for Public Policy, a conservative think tank, released a report last month that found the March 25 directive was associated with 4.2 additional deaths per facility, on average.

Showing an association is not the same as showing that one thing caused another, the report notes. And analysts pointed out other shortcomings in the study, such as not incorporating the precise dates when COVID-positive patients were admitted, which made any findings of associated deaths unreliable.

In a statement, New York state health commissioner Dr. Howard Zucker said, "The Empire Center's conclusion that 'the data indicate that the March 25 memo was not the sole or primary cause of the heavy death toll in nursing homes'" is consistent with the health department's analysis that the policy "was not a driver of COVID infections and fatalities and COVID was introduced to nursing homes primarily through staff and visitors."

Bill Hammond, a senior fellow for health policy at the Empire Center and the study's co-author, said he believed that deflecting criticism of the governor's March policy was at the root of the administration's decision to withhold the hospital COVID deaths of nursing home residents. The center sued the state health department to release the numbers. The Associated Press made a Freedom of Information Act request for the data.

"If it hadn't been for a court order, they would still be hiding this data," Hammond said.

Beyond the Numbers

New York's nursing home COVID controversy goes beyond whether Cuomo intentionally tried to obscure some numbers.

Nationally, fewer than 1% of people live in long-term care facilities but make up 35% of COVID deaths, according to the COVID Tracking Project.

The bullet point from the New York attorney general's report that has gotten the most attention was the assertion that nursing home deaths may have been undercounted.

But other troubling factors documented in the report put nursing home residents at risk, including poor infection control practices, insufficient staffing and inadequate personal protective equipment and COVID testing.

These findings are preliminary and the AG's office continues to investigate.

The report highlighted the "catastrophe" that many nursing home residents and their families have experienced, said Richard Mollot, executive director of the Long Term Care Community Coalition, which represents people in long-term care settings.

"It's part of the broader issue that we face, that the lives of nursing home residents are not counted much to begin with," Mollot said.

Without a vaccine last year, "it really laid bare the need for better infection control: really good mask-wearing, a lot of testing of staff," said Denis Nash, an epidemiologist at the City University of New York School of Public Health.

Sources:

New York State Department of Health, Advisory: Hospital Discharges and Admissions to Nursing Homes, March 25, 2020, via Skilled Nursing News

New York State Attorney General, Attorney General James Releases Report on Nursing Homes' Response to COVID-19, Jan. 28, 2021

Times Union, "FBI, U.S. Attorney in Brooklyn Probing Cuomo Administration on Nursing Homes," Feb. 17, 2021

Telephone interview, Priya Chidambaram, senior policy analyst, KFF, Feb. 24, 2021

CDC National Healthcare Safety Network, Instructions for Completion of the COVID-19 Long-term Care Facility (LTCF) Resident Impact and Facility Capacity Form (CDC 57.144), March 1, 2021

Telephone interview, Christopher Laxton, executive director, Society for Post-Acute and Long-Term Care Medicine, Feb. 23, 2021

New York Senate Bill S3061A, an act to amend the public health law, in relation to reporting COVID-19, communicable diseases and deaths caused by such communicable diseases

New York State Department of Health, New York State Department of Health Issues Report on COVID-19 in Nursing Homes, July 6, 2020

Empire Center for Public Policy, COVID-Positive Admissions Were Correlated With Higher Death Rates in New York Nursing Homes, Feb. 18, 2021

Telephone interview, Bill Hammond, senior fellow for health policy, Empire Center, Feb. 24, 2021

The COVID Tracking Project, COVID deaths in long-term care facilities

Telephone interview, Richard Mollot, executive director of the Long Term Care Community Coalition, Feb. 23, 2021

Telephone interview, Denis Nash, epidemiologist at the City University of New York School of Public Health, Feb. 23, 2021

Email interview, Gary Holmes, assistant commissioner, New York State Department of Health, Feb. 25, 2021

Email interview, Dr. Sally Aiken, Spokane County medical examiner, Feb. 23 and 24, 2021

Email interview, Erin Kissane, managing editor, the COVID Tracking Project, Feb. 23, 2021

Telephone interview, Dr. James Gill, president, National Association of Medical Examiners, Feb. 24, 2021

New York Post, "Melissa DeRosa's Admission on Nursing Home Coverup Sparks Calls for Probe — And Cuomo's Prosecution," Feb. 12, 2021

Michelle Andrews: andrews.khn@gmail.com, @mandrews110

States Aim to Chip Away at Abortion Rights With Supreme Court in Mind

KFF Health News, March 2, 2021

Similar legislation has been introduced in a dozen of states, according to the National Right to Life Committee.

This article was published on Tuesday, March 2, 2021 in Kaiser Health News.

By Justin Franz

When Rep. Lola Sheldon-Galloway introduced a bill in the Montana House two years ago that would have prohibited abortions after 20 weeks of pregnancy, the Republican legislator knew it was unlikely to survive the veto pen of the Democratic governor.

Sure enough, then-Gov. Steve Bullock vetoed that bill and two other anti-abortion measures passed by the Republican-led state legislature. In his veto message, Bullock wrote that "for over 40 years, the U.S. Supreme Court has recognized that the U.S. Constitution prohibits a state from banning abortion."

But now Bullock's gone, replaced by Republican Greg Gianforte, who has promised to sign any bill that puts new limits on abortion. And abortion-rights advocates worry the court ruling that Bullock based his vetoes on — the landmark 1973 Roe v. Wade decision — is on shaky ground.

The Supreme Court tilted further right with last year's confirmation of Justice Amy Coney Barrett, giving the high court a makeup of six justices appointed by Republican presidents and three appointed by Democrats.

That has emboldened lawmakers in Montana and other right-leaning states to introduce dozens of anti-abortion bills this year in the hope that the high court will hear lawsuits against new state laws and side with the states. The goal is to chip away at Roe v. Wade.

According to Kristin Ford, national communications director for NARAL Pro-Choice America, more than 60 bills have been introduced or passed in state legislatures so far this year to restrict abortion. Most are in conservative-leaning states like Montana, Kansas and Wyoming.

"These legislators are willing to do whatever it takes to advance their extreme agenda of gutting Roe v. Wade and pushing abortion care as far out of reach as possible," Ford said. "With Roe in the crosshairs, the stakes for women, people who are pregnant and families are higher than ever."

Ford and other abortion-rights advocates said any one of those bills could be challenged and make its way to the Supreme Court.

That's the apparent aim of the conservative state lawmakers pushing bills. In Montana, legislators have introduced six anti-abortion measures so far this year, including Sheldon-Galloway's proposed ban on abortions after 20 weeks.

"If this legislation made it all the way to the Supreme Court, that would be a good thing, because we need to revisit Roe v. Wade," Sheldon-Galloway said.

Eric Scheidler, executive director of the Pro-Life Action League, based in Chicago, said the rash of bills exemplifies the changing methods of the anti-abortion movement. When his father founded the Pro-Life Action League in the 1970s, the organization's goal was simply to get the Roe v. Wade decision overturned, either in the courts or in the statehouses. But now anti-abortion groups are taking a piecemeal approach.

He said it's more likely that the current Supreme Court will overturn Roe v. Wade incrementally rather than all at once.

"Will this court overturn Roe v. Wade? It's possible," Scheidler said. "But I think we're more likely to see this court put more restrictions on abortion. I think five years from now we'll realize that Roe v. Wade was slowly overturned without it ever making a big headline."

For anti-abortion groups, pushing legislation through at the state level may be their only option since Democrats control Congress and the White House. President Joe Biden has said he wants to "codify" Roe v. Wade and appoint federal judges who will respect the precedent.

Sheldon-Galloway said her bill, dubbed the Pain-Capable Unborn Child Protection Act, would protect unborn children who might feel pain during an abortion.

Abortion advocates said that the bill is based on dubious science and that abortions at that point in pregnancy are rare and usually happen only for medical reasons. Similar bills are being introduced in Florida, Hawaii, New Jersey and Oregon.

"There are very few abortions that happen after 20 weeks, and when they do they usually occur because of a significant medical issue," said Alison James, chairperson of Montanans for Choice, an abortion-rights group. "These are usually wanted pregnancies, and so these unnecessary laws put women and families through the wringer. It will treat them like criminals."

Groups like Montanans for Choice have stepped up their efforts this year because they know that any abortion bill that passes the Montana legislature will be signed into law. Other bills working their way through the legislature would prohibit people from accessing abortion medication through the mail and require doctors to offer an ultrasound before terminating a pregnancy. Another would create a ballot initiative asking Montanans to decide whether fetuses that live through an abortion are people with legal rights.

Similar legislation has been introduced in a dozen other states, according to the National Right to Life Committee.

Nicole Smith, a fellow of the Society of Family Planning and a board member for Montanans for Choice, said it is highly likely that any abortion bills that become law would be challenged in court, making the states the first battleground in the new laws' journey to the Supreme Court.

"We're seeing an onslaught of bills," Smith said. "And it will result in a legal battle."

'An Arm and a Leg': Revisiting Insulin: How the Medicine Got So Expensive

KFF Health News, March 2, 2021

"An Arm and a Leg" is a podcast about healthcare costs, and its second season is co-produced by KHN.

This article was published on Tuesday, March 2, 2021 in Kaiser Health News.

By Dan Weissmann

Can't see the audio player? Click here to listen.\

About This Podcast

Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and its second season is co-produced by KHN.

We're re-releasing a story we first reported in 2019, about how insulin got to be so expensive. And this 2021 update  includes a check-in with people working to make the potentially lifesaving medicine more available.

The story seems especially relevant right now, for two reasons:

The rollout of the COVID vaccine has reminded all of us how vital it is to make  breakthroughs in the lab and make sure everyone can afford to benefit from them.

The second half of the episode — about ways that people who need insulin are taking action on their own behalf — fits An Arm and a Leg's current focus on financial self-defense.

The updates from the people we spoke with in 2019 are more encouraging than expected.

Here's a transcript of this episode.

"An Arm and a Leg" is a co-production of Kaiser Health News and Public Road Productions.

To keep in touch with "An Arm and a Leg," subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you've got stories to tell about the healthcare system, the producers would love to hear from you.

To hear all Kaiser Health News podcasts, click here.

And subscribe to "An Arm and a Leg" on iTunes, Pocket Casts, Google Play or Spotify.

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