Dr. Robert Redfield, former director of the Centers for Disease Control and Prevention, has joined Big Ass Fans, lending his scientific credibility to a company division that says its ion-generating technology kills the coronavirus. The company charges $9,450 for a fan with technology that academic air quality experts question.
As strategic health and safety adviser, he follows Dr. Deborah Birx, former White House coronavirus response coordinator, into the booming air purifying industry. Last month, she signed on with ActivePure, a company that also makes a pitch about virus-destroying technology, but markets some devices that run afoul of California indoor air quality rules, according to a KHN investigation.
The two bring name recognition to companies selling products that are advertised to make it safer for people to gather maskless inside schools, offices, gyms and stores. The companies market 99.9%coronavirus kill rates.
Academic indoor air quality experts who criticize certain claims about COVID-killing technology say the industry-funded studies often focus on results of tests run in a space ranging in size from a shoebox to a cabinet that do not reflect the conditions in a large room. Studies backed by the industry rarely make it clear whether the touted "virus-killing" ions or molecules are doing the work, experts say, or if improvements come from a fan or filter on a device.
"There's no other way to say it — it's completely unproven whether these devices would work in a real-world setting," Timothy Bertram said of devices that claim to attack molecules in midair. He is a chemistry professor who studies aerosol particles at the University of Wisconsin-Madison.
Redfield, who led the CDC during the Trump administration's pandemic response, did not respond to requests for comment before publication. "Proper ventilation has a major role to play in mitigating transmission of COVID-19 and other respiratory pathogens," Redfield said in a Big Ass Fans news release. "Big Ass Fans is a leader in designing airflow systems and making places where we live, work, and play, safer."
Academic air quality experts, though, say high-profile physician sign-ons amount to celebrity endorsements.
"I'd much rather see good data transparently released than listen to Deborah Birx talk about how good this technology is when I know she isn't an expert on air disinfection," said William Bahnfleth, an architectural engineering professor at Penn State who studies indoor air quality and leads the American Society of Heating, Refrigerating and Air-Conditioning Engineers Epidemic Task Force.
Bertram said he studied the performance of various ion- and hydroxyl-releasing devices in classrooms and found that some emitted ozone, a gas associated with the onset or worsening of asthma. Others created other new small particles. When it came to improving ventilation, none performed as well as a HEPA filter, he said, which together with a MERV-13 filter in a heating system and increased outside ventilation is the standard recommendation. Bertram did not say which specific devices he reviewed, but said that will be detailed in a forthcoming study.
Big Ass Fans is entering the coronavirus air purifying market with brand recognition based on its uncontroversial air-moving mega-fans. Its Clean Air System fans are already used in schools and by companies such as Toyota, Tiffany & Co. and Orangetheory Fitness.
Some Clean Air System fans use UVC light, widely considered an effective air cleaning technology. Other fans use bipolar ionization, a technique that the Environmental Protection Agency warns is "an emerging technology, and little research is available that evaluates it outside of lab conditions," adding that evidence of its effectiveness is less documented than the evidence for far more established choices like air filtration.
Big Ass Fans spokesperson Alex Risen stressed in an interview that its technology is just one layer of protection against the coronavirus. The company, headquartered in Lexington, Kentucky, says its technology "pairs scientifically proven air purifying technologies with powerful airflow solutions. This results in a system that kills 99.99% of pathogens to keep your people protected and your business booming."
The company charges about $500 to $1,500 more for fans with Clean Air System technology.
In the pandemic, federal funding to buy such devices for schools has exploded, with roughly $193 billion available so far. Congressional Democrats are pushing for $100 billion more. With community pressure to reopen classrooms, school officials have begun to invest heavily in air cleaning technology, though some experts worry risks are not being considered.
The EPA has warned about bipolar ionization's ability to generate ozone and other potentially harmful byproducts indoors. A study by top indoor air quality experts in the Building and Environment journal found that another company's bipolar ionization technology created other byproducts, including toluene, which can have developmental effects after long-term inhalation exposure.
Risen, the Big Ass Fans spokesperson, stressed that its ionization technology does not emit ozone or other byproducts and is not "putting bad things into your lungs." He said the products do not emit hydrogen peroxide. ActivePure, the air cleaning company Birx has signed on with, makes air cleaners that emit gaseous hydrogen peroxide, which it claims can seek out and destroy viruses, mold and bacteria, according to the KHN investigation.
"We know that we're not producing any negative products," Risen said. "We know that at the concentrations that you're at, you're not getting negative effects."
Joe Urso, ActivePure Technologies CEO, said the "FDA has cleared a number of devices that emit hydrogen peroxide into the ambient air at a safe level for people to breathe, including our ActivePure Medical Guardian."
Bahnfleth said Big Ass Fans had made more of a good faith effort with its studies than others in the market. But he added that, without measuring potential gaseous byproducts, the research was not complete.
"They still do nothing to address potential adverse impacts of chemical byproduct exposure," said Brent Stephens, an indoor air quality expert who reviewed Big Ass Fans Clean Air System's reports and leads the civil, architectural and environmental engineering department at the Illinois Institute of Technology.
Stephens added that the controlled testing spaces — without people or furniture or other products that would be in a classroom or office — did not reflect real-world circumstances. And he worried about the "really high" ion counts, saying he would not recommend them for occupied spaces.
Bahnfleth echoed Stephens' concerns, pointing to a study that showed adverse health effects such as increased oxidative stress levels — which are linked to cancer and other neurological diseases — for those exposed to a high number of negative ions. Experts said more research is needed, as bipolar ionization, like that used by Big Ass Fans, produces both positive and negative ions.
Risen defended the safety of ions in an interview, noting they occur naturally.
It's hard to tell if the fan moving the air or the bipolar ionization is having an impact on the virus in the studies provided by Big Ass Fans, said Delphine Farmer, a Colorado State University associate professor who specializes in atmospheric and indoor chemistry. Also, she said, without real-world testing, it's unclear what sort of reaction this product could have when exposed to classroom fumes from paint, glue or markers.
"Anything that actually destroys a virus is potentially doing other chemistry as well," she said.
Another Clean Air System study claimed a 99.999% reduction of the virus that causes COVID from the air.
"When they give you 99.999%, that's a red flag to any scientist. We don't know anything to that degree," Bertram said. "That's just nuts."
COVID-related transplants are surging as hospitals grapple with a growing subset of patients whose organs — most often hearts and lungs — are damaged by the virus.
This article was published on Tuesday, April 13, 2021 in Kaiser Health News.
In a year when COVID-19 shattered the pleas of so many who prayed for miracles, a Georgia man with two new lungs is among the fortunate.
Mark Buchanan, of Roopville, received a double-lung transplant in October, nearly three months after COVID left him hospitalized and sedated, first on a ventilator and then on the last-resort treatment known as ECMO.
"They said that it had ruined my lungs," said Buchanan, 53, who was a burly power company lineman when he fell ill. "The vent and the COVID ruined 'em completely."
At the time, only a handful of U.S. hospitals were willing to take a chance on organ transplants to treat the sickest COVID patients. Too little was known about the risks of the virus and lasting damage it might cause, let alone whether such patients could survive the surgery. Buchanan was turned down at Emory University Hospital in Atlanta, according to his wife, Melissa, who said doctors advised her to withdraw treatment and allow him to die peacefully.
"They were telling me to end his life. I told them absolutely not," recalled Melissa Buchanan, 49. "We all started Googling any place that would take someone who needed a lung transplant."
It took calls to several hospitals, plus a favor from a hometown physician, before Buchanan was accepted at the University of Florida Health Shands Hospital, 350 miles away in Gainesville, Florida. He received his new lungs Oct. 28.
Nearly six months later, the transplant landscape has radically changed. COVID-related transplants are surging as hospitals grapple with a growing subset of patients whose organs — most often hearts and lungs — are "basically destroyed by the virus," said Dr. Jonathan Orens, a lung transplant expert at Johns Hopkins University School of Medicine in Baltimore.
Nearly 60 transplants were performed through March 31 for patients with COVID-related organ disease, according to figures released Monday by the United Network for Organ Sharing, which oversees transplants in the U.S. That includes at least 54 lung and four heart transplants recorded since new codes for COVID-specific diagnoses were adopted in late October. One patient received a combination heart-lung transplant. Another 26 patients eligible for COVID-related lung transplants and one eligible for a heart transplant remain on waiting lists, UNOS data show.
Nearly two dozen hospitals have performed the surgeries, with new sites added every month.
"You're seeing it move around the country, and it's moving around pretty quick," said Dr. David Weill, former director of the Stanford University Medical Center's lung and heart-lung transplant program who now works as a consultant. "It's like wildfire, where centers are saying, 'We did our first one, too.'"
The upsurge in transplants has been fueled largely by the broad reach of the virus. As U.S. COVID cases top 31 million, with more than 560,000 deaths, thousands of patients who survived particularly serious infections are left with badly damaged organs that pose life-threatening complications.
"I think this is just the beginning," said Dr. Tae Song, surgical director of the lung transplant program at the University of Chicago Medical Center. "I expect this to be a completely new category of transplant patients."
Tens of thousands of patients whose organs were otherwise healthy have developed severe, chronic lung disease after contracting COVID. Because it's a novel disease, exactly how many will go on to need lung transplants isn't yet clear, said Weill, who has called for the development of a lung transplant registry to track outcomes.
So far, the rise in COVID-related transplants has not dramatically affected the existing waiting lists for organs. Of the more than 107,000 patients on waiting lists, about 3,500 need hearts and more than 1,000 need lungs. Most of the rest are waiting for kidney transplants, which have not been subject to a significant increase because of COVID.
Organs for transplant are allocated according to complicated metrics, including how long the patients have been waiting, how ill they are, how likely they are to survive with a transplant and how close they are to donor hospitals. The goal is to treat the most medically urgent cases first. The rules don't necessarily bump COVID patients to the front of the line, experts said, but many become sick enough to require immediate care.
That was the case for Al Brown, a 31-year-old car salesman in the Chicago suburb of Riverdale, Illinois, who caught COVID in May and was diagnosed with congestive heart failure several weeks later. In September, he woke up with severe chest pains that sent him to the emergency room.
"Shortly after, they told me my heart was working at only, like, 10%," Brown said. "It wasn't pumping blood through my whole body."
Medications didn't fix the problem, so doctors offered him several choices, including a mechanical pump to help his heart temporarily — or a transplant. "They told me, basically, I was young and I had a lot of life left in me," said Brown, the father of two young daughters. "I actually picked the option of a heart transplant."
Brown, who had hit the gym regularly, was an ideal candidate, said Dr. Sean Pinney, co-director of the heart and vascular center at University of Chicago Medicine. "This guy was healthy except for COVID, except for heart failure." Brown received his transplant in October and continues to recuperate.
Most COVID-related transplants are performed on patients whose lungs have been irreversibly weakened by the disease. Thousands of COVID survivors have developed ARDS, or acute respiratory distress syndrome, which allows fluid to leak into the lungs. Others develop pulmonary fibrosis, which occurs when lung tissue becomes scarred.
"What was once a scaffold of soft, living cells turns into a stiff mesh that's not capable of exchanging gases," said Song.
While conditions like pulmonary fibrosis typically develop over months or years, often in response to toxins or medications, COVID patients seem to get much sicker, much faster. "Instead of months, it's more on the order of weeks," Song said.
These patients are often placed on mechanical ventilation and then ECMO, or extracorporeal membrane oxygenation, in which a machine takes over the functions of the heart and lungs. Many become stranded on the machines, so sick that their only options are transplantation or death.
Even then, not everyone is eligible for a transplant. In many COVID patients, damage isn't limited to a single organ. Others have preexisting conditions such as diabetes or obesity that can complicate recovery from surgery or preclude it entirely. And, often, those who have been sedated for weeks or months aren't likely to survive the trauma of transplant.
Successful transplant candidates are likely patients younger than 65 who are otherwise healthy and whose lungs will not heal on their own, said Dr. Tiago Machuca, chief of thoracic surgery at UF Health Shands Hospital, who helped draft suggested guidance for COVID-related lung transplants.
"This is a very different profile of patients," said Machuca. "These patients had normal lung function. They're young, and now they find themselves on mechanical ventilation or ECMO, fighting for their lives."
Mark Buchanan landed in that situation last fall after his entire family caught COVID. His children, Jake, 22, and Lauren, 18, had mild cases. His wife, Melissa, was quite ill, though never hospitalized, and quickly had to turn to helping her husband.
"I had to rely solely on God and my family and friends," she said. "It's hard to explain how stressful it was."
Buchanan survived the transplant and then spent three months recovering at the Florida hospital. He lost more than 70 pounds and was weak. "I couldn't brush my teeth or feed myself," he said. "I had to learn to eat, swallow, talk, walk all over again."
Buchanan arrived home in January to a parade of 400 neighbors and friends. He has begun speaking to church groups and others about his fight for a transplant. Many people in his small community remain skeptical about COVID. Wearing a mask and keeping his distance, he tries to set them straight.
"People still make a joke of it," he said. "But I was in the hospital 170 days. You tell me: Is it real or not?"
Buchanan was one of at least 17 patients to receive COVID-related lung transplants at Shands in the past year, the most of any hospital in the country. Machuca credits its dedicated lung unit, which had already focused on patients with complex respiratory conditions.
It remains unclear whether widespread vaccination will stem the number of COVID patients who require transplants — or whether transplant candidates among survivors will continue to rise. There's no doubt, however, that the pandemic has changed the profile of those considered for lung transplantation, Machuca said.
"Before COVID, transplanting patients with acute respiratory failure was a 'no,'" he said. "I think this is expanding the limits of what we felt was possible."
Hoag argues that remaining a "captive affiliate" of the nation's 10th-largest health system, headquartered nearly 1,200 miles away in Washington state, constrains its ability to meet the needs of the local population.
This article was published on Tuesday, April 13, 2021 in Kaiser Health News.
In early 2013, Hoag Memorial Hospital Presbyterian in Orange County, California, joined with St. Joseph Health, a local Catholic hospital chain, amid enthusiastic promises that their affiliation would broaden access to care and improve the health of residents across the community.
Eight years later, Hoag says this vision of achieving "population health" is dead, and it wants out. It is embroiled in a legal battle for independence from Providence, a Catholic health system with 51 hospitals across seven states, which absorbed St. Joseph in 2016, bringing Hoag along with it.
In a lawsuit filed in Orange County Superior Court last May, Hoag argues that remaining a "captive affiliate" of the nation's 10th-largest health system, headquartered nearly 1,200 miles away in Washington state, constrains its ability to meet the needs of the local population.
Hoag doctors say that Providence's drive to standardize treatment decisions across its chain — largely through a shared Epic electronic records system — often conflicts with their own judgment of best medical practices. And they recoil against restrictions on reproductive care they say Providence illegally imposes on them through its adherence to the Catholic health directives established by the United States Conference of Catholic Bishops.
"Their large widespread system is very different than the laser focus Hoag has on taking care of its community," said Hoag CEO Robert Braithwaite. "When Hoag needed speed and agility, we got inadequate responses or policies that were just wrong for us. We found ourselves frustrated with a big health system that had a generic approach to healthcare."
Providence insists it wants to stay with Hoag, a financial powerhouse — even as the two sides engage in secret settlement talks that could end the marriage.
"We believe we are better together," said Erik Wexler, president of Providence South, which includes the group's operations in California, Texas and New Mexico. "The best way to do that is to collaborate." He cited joint investments in Hoag Orthopedic Institute and in Be Well OC, a kind of mental health collaborative, as fruits of the affiliation.
"If we are separate," Wexler added, "there is a chance we may begin to cannibalize each other and drive the cost of care up."
Research over the past several years, however, has shown that it is the consolidation of hospitals into fewer and larger groups, with greater bargaining clout, that tends to raise medical prices — often with little improvement in the quality of care.
"Mergers are a self-centered pursuit of stability by hospitals and hospital systems that hope to get so big that they can survive the anarchy of U.S. healthcare," said Alan Sager, a professor at Boston University's School of Public Health.
Wexler argued that price increases linked to consolidation are less of a worry in Orange County, geographically small but densely populated with 3.2 million residents and 28 acute care hospitals. Given the proximity of so many hospitals, Wexler said, counterproductive duplication of medical services is more of a concern.
Unlike many local community hospitals that seek larger partners to survive, Hoag, one of Orange County's premier medical institutions, is financially robust and perfectly able to stand on its own. It has the advantage of operating in one of Orange County's most affluent areas, with two acute care hospitals and an orthopedic specialty hospital in Newport Beach and Irvine. It is the beneficiary of numerous wealthy donors, including bond market billionaire Bill Gross and thriller novelist Dean Koontz.
In 2020, Hoag's net assets, essentially its net worth, stood at about $3.3 billion — nearly 20% of the total for all Providence-affiliated facilities, even though Hoag has only three of the group's 51 hospitals. Hoag generated operating income of $38 million last year, while Providence posted a $306 million operating loss.
But Providence is hardly a financial weakling. It is sitting on a mountain of unrestricted cash and investments worth $15.3 billion as of Dec. 31. And despite its hefty reserves, it received $1.1 billion in coronavirus relief grants last year under the federal CARES Act, and millions more from the Federal Emergency Management Agency.
Providence does not own Hoag, since no money changed hands and their assets were not commingled. But Providence is able to keep Hoag from walking away because it has a majority on the governing body that was set up to oversee the original affiliation with St. Joseph.
Hoag executives also express frustration at what they describe as efforts by Providence to interfere with their financial, labor and supply decisions.
Providence, in turn, worries that "if Hoag disaffiliates with Providence, it has the potential to impact our credit rating," Wexler said.
Despite its insistence on the value of the affiliation, Providence officials are said to be willing to end the affiliation in exchange for payment of an undisclosed amount that Hoag considers unwarranted. Wexler and Hoag executives declined to comment on their discussions. A trial start date has not been set, but on April 26 the court will hear a motion from Hoag to expedite it.
While its financial fortitude distinguishes it from many other community hospitals tied to larger partners, Hoag's experience with Providence is hardly uncommon amid widespread consolidation in the hospital industry and the growing influence of Catholic healthcare in the U.S.
"The bigger your parent organization becomes, the smaller your voice is within the system, and that's part of what Hoag has been complaining about," said Lois Uttley, director of the women's health program at Community Catalyst, a Boston-based patient advocacy group that monitors hospital mergers.
"Compounding the problem is the fact that the system in this case is Catholic-run, because then, in addition to having an out-of-town system headquarters calling the shots, you also have to contend with governance from Catholic bishops," Uttley said. "So you have two bosses, in a sense."
Hoag is not the only hospital seeking to flee this dynamic. Last year, for example, Virginia Mason Memorial hospital in Yakima, Washington, said it would separate from its parent, Seattle-based Virginia Mason Health System, to avoid a pending merger with CHI Franciscan, part of the Catholic hospital giant CommonSpirit Health.
Mergers and acquisitions have led to the increasing dominance of mega hospital chains in U.S. healthcare over the past several years. From 2013 to 2018, the revenue of the 10 largest health systems grew 82%, compared with 45% for all other hospital groups, according to a recent study by Deloitte, the consulting and auditing firm.
Researchers expect the trend to accelerate as large health systems swallow smaller facilities economically weakened by the pandemic, and a growing trend toward outpatient care reduces demand for hospital beds.
Four of the 10 largest U.S. hospital systems are Catholic, including Chicago-based CommonSpirit Health, St. Louis-based Ascension, Livonia, Michigan-based Trinity Health and Providence. A study by Community Catalyst found that 1 in 6 acute care hospital beds are in Catholic facilities, and that 52 hospitals operating under Catholic restrictions were the sole acute care facilities in their regions last year, up from 30 in 2013.
"We need to make this a national conversation," said Dr. Jeffrey Illeck, a Hoag OB-GYN.
He was among a group of Hoag OB-GYNs who signed a letter to then-California Attorney General Xavier Becerra in October, alleging that Providence frequently declined to authorize contraceptive treatments, such as intrauterine devices and tubal ligations — in breach of the conditions imposed by Becerra's predecessor, Kamala Harris, when she approved the original affiliation with St. Joseph in 2013.
Wexler said he is confident the attorney general's probe will provide "clarity that Providence has done nothing wrong."
A particularly bitter disagreement between the two sides concerns a rupture last year within St. Joseph Heritage Healthcare, a physician group belonging to Providence that included both St. Joseph and Hoag doctors. In November, the group notified thousands of patients that their Hoag specialists were no longer part of the network and that they needed to choose new doctors.
Wexler said that was the inevitable result of a decision by the Hoag physicians to negotiate separate HMO contracts, an assertion Braithwaite contested. The move disrupted patient care just as the winter COVID surge was gaining momentum, he said.
Perhaps the biggest frustration for most Hoag administrators and physicians is Providence's desire to standardize care across all 51 hospitals through their shared Epic electronic records system.
Hoag doctors say Providence controls the contents of the Epic system and that the care protocols in it, often driven by cost considerations, frequently collide with their own clinical decisions. Any changes must be debated among all the hospitals in the system and adopted by consensus — a laborious undertaking.
Dr. Richard Haskell, a cardiologist at Hoag, recalled a dispute over intravenous Tylenol, which Hoag's orthopedists prefer because they say it works well and furthered a concerted effort to reduce opioid addiction. Providence took IV Tylenol off its list of accepted drugs, and the Hoag orthopedists "were very upset," Haskell said.
They eventually got it back on that list, but with the condition that they could order it only one dose at a time. That meant nurses had to call the doctor every four hours for a new order. "Doctors probably felt, 'Screw it, I don't want to get woken up every four hours,' so they probably just gave them narcotics,'" Haskell said.
He said that before agreeing to adopt Providence's Epic system, Hoag had received written assurances it could make changes that included its preferred treatment choices for various conditions. But it quickly became clear that was not going to happen, he said.
"We couldn't make any changes at all, so we were stuck with their system," Haskell said. "I don't want to be in a system bogged down by bureaucracy that requires 51 hospitals to vote on it."
Wexler said Hoag understood exactly what it had signed up for. "They knew full well that there would be a collaborative approach across all of Providence, including Hoag, to make decisions on what standardizations would happen across the entire system," he said. "It is not easy if one hospital wants to create its own specific pathway."
Despite Hoag's concerns about lesser standards of care, Braithwaite could not cite an example of an adverse outcome that had resulted from it. And Hoag's strong reputation seems untarnished, as reflected in the high rankings and awards it continues to garner — and tout on its website.
Still, the affiliation's days seem numbered. Hoag is no longer on the Providence website or in its marketing materials, and in many cases — such as the St. Joseph Heritage schism — the two groups are already going their separate ways.
"They are certainly acting like we are competitors, and I assume that means they know the disaffiliation is imminent," Braithwaite said.
Wexler, while reiterating that Providence wants to maintain the current arrangement, was nonetheless able to imagine a different outcome: "What we would do post-affiliation," he said, "is to continue to look for opportunities to collaborate."
It comes as the coronavirus pandemic has wreaked havoc in nursing homes, assisted living facilities and group homes, killing more than 174,000 people and triggering awareness of the need for more long-term care options.
There's widespread agreement that it's important to help older adults and people with disabilities remain independent as long as possible. But are we prepared to do what's necessary, as a nation, to make this possible?
That's the challenge President Joe Biden has put forward with his bold proposal to spend $400 billion over eight years on home and community-based services, a major part of his $2 trillion infrastructure plan.
It's a "historic and profound" opportunity to build a stronger framework of services surrounding vulnerable people who need considerable ongoing assistance, said Ai-jen Poo, director of Caring Across Generations, a national group advocating for older adults, individuals with disabilities, families and caregivers.
It comes as the coronavirus pandemic has wreaked havoc in nursing homes, assisted living facilities and group homes, killing more than 174,000 people and triggering awareness of the need for more long-term care options.
"There's a much greater understanding now that it is not a good thing to be stuck in long-term care institutions" and that community-based care is an "essential alternative, which the vast majority of people would prefer," said Ari Ne'eman, senior research associate at Harvard Law School's Project on Disability.
"The systems we do have are crumbling" due to underfunding and understaffing, and "there has never been a greater opportunity for change than now," said Katie Smith Sloan, president of LeadingAge, at a recent press conference where the president's proposal was discussed. LeadingAge is a national association of more than 5,000 nonprofit nursing homes, assisted living centers, senior living communities and home care providers.
But prospects for the president's proposal are uncertain. Republicans decry its cost and argue that much of what the proposed American Jobs Plan contains, including the emphasis on home-based care, doesn't count as real infrastructure.
"Though this [proposal] is a necessary step to strengthen our long-term care system, politically it will be a challenge," suggested Joseph Gaugler, a professor at the University of Minnesota's School of Public Health, who studies long-term care.
Even advocates acknowledge the proposal doesn't address the full extent of care needed by the nation's rapidly growing older population. In particular, middle-income seniors won't qualify directly for programs that would be expanded. They would, however, benefit from a larger, better paid, better trained workforce of aides that help people in their homes — one of the plan's objectives.
"This [plan] isn't everything that's needed, not by any step of the imagination," Poo said. "What we really want to get to is universal access to long-term care. But that will be a multistep process."
Understanding what's at stake is essential as communities across the country and Congress begin discussing Biden's proposal.
The services in question. Home and community-based services help people who need significant assistance live at home as opposed to nursing homes or group homes.
Services can include home visits from nurses or occupational therapists; assistance with personal care such as eating or bathing; help from case managers; attendance at adult day centers; help with cooking, cleaning and other chores; transportation; and home repairs and modifications. It can also help pay for durable medical equipment such as wheelchairs or oxygen tanks.
The need. At some point, 70% of older adults will require help with dressing, hygiene, moving around, managing finances, taking medications, cooking, housekeeping and other daily needs, usually for two to four years. As the nation's aging population expands to 74 million in 2030 (the year all baby boomers will have entered older age), that need will expand exponentially.
Younger adults and children with conditions such as cerebral palsy, blindness or intellectual disabilities can similarly require significant assistance.
The burden on families. Currently, 53 million family members provide most of the care that vulnerable seniors and people with disabilities require — without being paid and often at significant financial and emotional cost. According to AARP, family caregivers on average devote about 24 hours a week, to helping loved ones and spend around $7,000 out-of-pocket.
This reflects a sobering reality: Long-term care services are simply too expensive for most individuals and families. According to a survey last year by Genworth, a financial services firm, the hourly cost for a home health aide averages $24. Annually, assisted living centers charge an average $51,600, while a semiprivate room in a nursing home goes for $93,075.
Medicare limitations. Many people assume that Medicare — the nation's health program for 61 million older adults and people with severe disabilities — will pay for long-term care, including home-based services. But Medicare coverage is extremely limited.
In the community, Medicare covers home health only for older adults and people with severe disabilities who are homebound and need skilled services from nurses and therapists. It does not pay for 24-hour care or care for personal aides or homemakers. In 2018, about 3.4 million Medicare members received home health services.
In nursing homes, Medicare pays only for rehabilitation services for a maximum of 100 days. It does not provide support for long-term stays in nursing homes or assisted living facilities.
Medicaid options. Medicaid — the federal-state health program for 72 million children and adults in low-income households — can be an alternative, but financial eligibility standards are strict and only people with meager incomes and assets qualify.
Medicaid supports two types of long-term care: home and community-based services and those provided in institutions such as nursing homes. But only care in institutions is mandated by the federal government. Home and community-based services are provided at the discretion of the states.
Although all states offer home and community-based services of some kind, there's enormous variation in the types of services offered, who is served (states can set caps on enrollment) and state spending. Generally, people need to be frail enough to need nursing home care to qualify.
Nationally, 57% of Medicaid's long-term care budget goes to home and community-based services — $92 billion in the 2018 federal budget year. But half of states still spend twice as much on institutional care as they do on community-based care. And 41 states have waiting lists, totaling nearly 820,000 people, with an average wait of 39 months.
Based on the best information available, between 4 million and 5 million people receive Medicaid-funded home and community-based services — a fraction of those who need care.
Workforce issues. Biden's proposal doesn't specify how $400 billion in additional funding would be spent, beyond stating that access to home and community-based care would be expanded and caregivers would receive "a long-overdue raise, stronger benefits, and an opportunity to organize or join a union."
Caregivers, including nursing assistants and home health and personal care aides, earn $12 an hour, on average. Most are women of color; about one-third of those working for agencies don't receive health insurance from their employers.
By the end of this decade, an extra 1 million workers will be needed for home-based care — a number of experts believe will be difficult, if not impossible, to reach given poor pay and working conditions.
"We have a choice to keep these poverty-wage jobs or make them good jobs that allow people to take pride in their work while taking care of their families," said Poo of Caring Across Generations.
Next steps. Biden's plan leaves out many details. For example: What portion of funding should go to strengthening the workforce? What portion should be devoted to eliminating waiting lists? What amount should be spent on expanding services?
How will inequities of the current system — for instance, the lack of accessible services in rural counties or for people with dementia — be addressed? "We want to see funding to states tied to addressing those inequities," said Amber Christ, directing attorney of the health team at Justice in Aging, an advocacy organization.
Meanwhile, supporters of the plan suggest it could be just the opening of a major effort to shore up other parts of the safety net. "There are huge gaps in the system for middle-income families that need to be addressed," said David Certner, AARP's legislative counsel.
Reforms that should be considered include tax credits for caregivers, expanding Medicare's home health benefit and removing the requirement that people receiving Medicare home health be homebound, said Christ of Justice in Aging.
"We should be looking more broadly at potential solutions that reach people who have some resources but not enough to pay for these services as well," she said.
Public health experts cited many reasons for the difference, including that women make up three-quarters of the workforce in healthcare and education, sectors prioritized for initial vaccines.
This article was published on Monday, April 12, 2021 in Kaiser Health News.
Mary Ann Steiner drove 2½ hours from her home in the St. Louis suburb of University City to the tiny Ozark town of Centerville, Missouri, to get vaccinated against COVID-19. After pulling into the drive-thru line in a church parking lot, she noticed that the others waiting for shots had something in common with her.
"Everyone in the very short line was a woman," said Steiner, 70.
Her observation reflects a national reality: More women than men are getting COVID vaccines, even as more men are dying of the disease. KHN examined vaccination dashboards for all 50 states and the District of Columbia in early April and found that each of the 38 that listed gender breakdowns showed more women had received shots than men.
Public health experts cited many reasons for the difference, including that women make up three-quarters of the workforce in healthcare and education, sectors prioritized for initial vaccines. Women's longer life spans also mean that older people in the first rounds of vaccine eligibility were more likely to be female. But as eligibility expands to all adults, the gap has continued. Experts point to women's roles as caregivers and their greater likelihood to seek out preventive healthcare in general as contributing factors.
In Steiner's case, her daughter spent hours on the phone and computer, scoping out and setting up vaccine appointments for five relatives. "In my family, the women are about a million times more proactive" about getting a COVID vaccine, Steiner said. "The females in families are often the ones who are more proactive about the health of the family."
As of early April, statistics showed the vaccine breakdown between women and men was generally close to 60% and 40% — women made up 58% of those vaccinated in Alabama and 57% in Florida, for example.
States don't measure vaccinations by gender uniformly, though. Some break down the statistics by total vaccine doses, for example, while others report people who have gotten at least one dose. Some states also have a separate category for nonbinary people or those whose gender is unknown.
A handful of states report gender vaccination statistics over time. That data shows the gap has narrowed but hasn't disappeared as vaccine eligibility has expanded beyond people in long-term care and healthcare workers.
In Kentucky, for instance, 64% of residents who had received at least one dose of vaccine by early February were women and 36% were men. As of early April, the stats had shifted to 57% women and 43% men.
In Rhode Island — one of the states furthest along in rolling out the vaccines, with nearly a quarter of the population fully vaccinated — the gap has narrowed from 30 percentage points (65% women and 35% men) the week of Dec. 13 to 18 points (59% women and 41% men) the week of March 21.
A few states break the numbers down by age as well as gender, revealing that the male-female difference persists across age groups. In South Carolina, for example, the gender breakdown of vaccine recipients as of April 4 was slightly wider for younger people: 61% of vaccinated people ages 25-34 were women compared with 57% female for age 65 and older.
Dr. Elvin Geng, a professor at the medical school at Washington University in St. Louis, said women of all age groups, races and ethnicities generally use health services more than men — which is one reason they live longer.
Arrianna Planey, an assistant professor who specializes in medical geography at the University of North Carolina-Chapel Hill, said it's often women who manage medical appointments for their households so they may be more familiar with navigating health systems.
Decades of research have documented how and why men are less likely to seek care. A 2019 study in the American Journal of Men's Health, for example, examined healthcare use in religious heterosexual men and concluded masculine norms — such as a perception that they are supposed to be tough — were the main reason many men avoided seeking care.
Attitudes about the COVID pandemic and the vaccines also affect who gets the shots.
Dr. Rebecca Wurtz, director of public health administration and policy at the University of Minnesota, said women have been more likely to lose jobs during the pandemic, and in many cases bear the brunt of teaching and caring for children at home.
"Women are ready for this to be done even more than men are," Wurtz said.
Political attitudes, too, play a part in people's views on coping with the pandemic, experts said. A Gallup poll last year found that among both Democrats and Republicans, women were more likely to say they took precautions to avoid COVID, such as always practicing physical distancing and wearing masks indoors when they couldn't stay 6 feet apart from others.
In a recent national poll by KFF, 29% of Republicans and 5% of Democrats said they definitely would not get the shot.
Paul Niehaus IV of St. Louis, who described himself as an independent libertarian with conservative leanings, said he won't get a COVID vaccine. He said the federal government, along with Big Tech and Big Pharma, are pushing an experimental medicine that is not fully approved by the Food and Drug Administration, and he doesn't trust those institutions.
"This is a freedom issue. This is a civil liberties issue," said Niehaus, a 34-year-old self-employed musician. "My motto is 'Let people choose.'"
Steiner, who plans to retire at the end of the month from editing a magazine for the Catholic Health Association, said she was eager to be vaccinated. She has an immune disorder that puts her at high risk for severe illness from COVID and hasn't seen some of her grandchildren in a year and a half.
But she said some of the men in her life were willing to wait longer for the shots, and a few nephews haven't wanted them. She said her brother, 65, received the one-shot Johnson & Johnson vaccine in early April after her daughter made it easy by arranging it for him.
Steiner, who has now received both doses of the Moderna vaccine, said she doesn't regret taking the more difficult step of traveling five hours round trip to get her first shot in February. (She was able to find a closer location for her second dose.)
"It's for my safety, for my kids' safety, for my neighbors' safety, for the people who go to my church's safety," she said. "I really don't understand the resistance."
The daughter of an internist in the Bronx, the father of a nurse practitioner in Southern California and the son of a nurse in McAllen, Texas, share how grief over their loved ones' deaths from COVID-19 has affected them.
These healthcare workers were profiled in KHN and The Guardian's yearlong "Lost on the Frontline" project.
Reza Chowdhury
Dr. Reza Chowdhury was a beloved internist with a private practice in the Bronx and a trusted voice in New York's Bengali community. His daughter, Nikita Rahman, said that despite underlying health issues putting him at higher risk of developing COVID complications, he saw patients through mid-March last year, when he developed symptoms. He died on April 9, 2020.
Nikita Rahman, Reza Chowdhury's daughter:
My therapist says grief is the final act of love. Every time I miss him, I think about how that is my love for him, showing up again. I like that framing of it. I think I only recently realized just how much I loved him.
He was so beloved by the community for just being a general practitioner who did his job really well and cared and was honest. He was so present and could find life and enjoyment in the little things, like taking a walk. He loved his breakfast, even if it was the same breakfast every day.
In March, I flew home from California to be with my family. I was reading about COVID cases spiking in Italy and was freaking out. My mom and I tried to convince my dad, who was immunocompromised, to stay home from work. He said: "No, it's not a big deal."
Then in mid- to late March he started to feel sick. At that time, everyone was so worried about hospitals being over capacity that the [guidance] was not to come in unless you're insanely sick. We eventually took him to the hospital. He was there for about 10 days and then he had a heart attack.
I'll sometimes visit my dad's grave by myself and bring tea, because my dad always drank tea, and read letters my friends have written over the past year. He was into growing nice grass, so whenever [my mother, brother and I] go, we bring nice grass to make sure his plot is nicely manicured. He told really good stories. I would do anything for audio recordings of him telling stories. Now I've started recording conversations with family members.
When someone dies, the world carries on. You'll take a walk and you're so upset, but people around you may be laughing or carrying on with their lives. You want the world to reflect how you feel inside. You want it to rain. Because of the pandemic, everyone's kind of miserable. Everyone's at home, having to process a lot. It has been nice, in a way, to be forced to sit down and process it. There's no running away from confronting your feelings.
Nueva Parazo
Nueva Parazo was a nurse practitioner in Southern California and one of scores of healthcare workers from the Philippines who have died of COVID-19. Her father, Chito Parazo, described her as a skilled and compassionate nurse and doting daughter. She died on Sept. 5, 2020.
Chito Parazo, Nueva Parazo Singian's father:
It's true, life has to go on, but it will never be the same. I'm 70 years old. I have maybe 10, 15 years left. Maybe less. Of course, I'm happy I'm still alive, but for me, we're just going through the motions of living. We lost our 9-year-old son, Xerxes, years ago in an accident and I still cannot accept the fact that he died. My children were the priceless jewels in my life, and I lost both of them.
During the early days of the pandemic, I asked [Nueva] to file a leave of absence. She said, "I cannot just turn my back on these helpless people. This is the job that I chose."
Her youngest son brought her to the hospital on Aug. 3 because she was complaining about difficulty breathing. She probably suspected that she had contracted the virus. When my wife was admitted to the same hospital in December with COVID, the staff remembered Nueva. They said: "We tried to save her, Mr. Parazo, but we couldn't. Her lungs were so badly damaged."
I'm so proud of her. She did her best to save people despite all the dangers she faced.
I shaved my head after Nueva died and made a vow to let it grow after the first anniversary of her death. I've been taking medication to combat my depression. Despite the fact that I have psoriatic arthritis in both of my knees, a bone spur in my left foot and spinal stenosis, I still go bowling to forget what happened. It's hard, but I have to be strong for the sake of my three grandkids and my wife.
Jessica Cavazos
Jessica Cavazos was a nurse in McAllen, Texas, and the family member everyone turned to for sage advice and a dose of optimism. Cavazos had not seen her son, Jayden Arrington, since 2013. After she died on July 12, 2020, Arrington, 19, reunited with her family.
Jayden Arrington, Jessica Cavazos' son:
I called her Mamo. There were some family issues that kept me from having more time with her, and that is hard for me to live with. I hadn't seen her since I was 10. When I was 17, I called her and we spoke for two or three hours, and I assumed after I turned 18 I'd start seeing her again. She passed without having her own son with her.
Some days I can't function or accept that some people's expiration dates are not what you want them to be.
I've learned that God's not going to give it to you how you want it. He's going to give it to you in a way to see how you're going to bounce back. I've grown over the last several months. I've learned how to control my feelings, and be more open to what's given to me in life. And also be more thankful for what I have.
I see things a little differently since [my mom died]. I try to find ways where every day is a good day, where I don't regret anything or have a negative effect on anyone. I try to keep people around me who I know can help me get through my days.
Sometime this month, I'm hoping to receive an acceptance letter [to a nursing program]. I want to become a registered nurse, just like Mamo.
These conversations have been condensed and edited.
Dr. Anthony Fauci thanked America's healthcare workers, who "every single day put themselves at risk" during the pandemic, even as he acknowledged that PPE shortages had contributed to the deaths of more than 3,600 of them.
KHN and The Guardian are tracking healthcare workers who died from COVID-19 and writing
"We rightfully refer to these people without hyperbole — that they are true heroes and heroines," he said in an exclusive interview with The Guardian. The deaths of so many health workers from COVID-19 are "a reflection of what healthcare workers have done historically, but putting themselves in harm's way by living up to the oath they take when they become physicians and nurses," said Fauci.
KHN and The Guardian have tracked healthcare workers' deaths throughout the pandemic in the "Lost on the Frontline" database. More than 3,600 health worker deaths have been tallied in the database, considered the most authoritative accounting in the country.
Personal protective equipment — including gloves, gowns and critical masks — have been in short supply since the pandemic began and heightened the toll. The U.S. is the world's largest importer of PPE, which made it especially vulnerable to the demand shock and export restrictions that hit the global market last spring.
"During the critical times when there were shortages was when people had to use whatever was available to them," said Fauci. "I'm sure that increased the risk of getting infected among healthcare providers."
Shortages were compounded by the federal government's failure to maintain a national stockpile of personal protective equipment, and the Trump administration's refusal to order more domestic manufacturing of PPE. That left health workers to use trash bags as gowns, reuse N95s for weeks and, at times, go totally without gloves.
The shortages led to protests by health workers, who said working amid the pandemic without equipment left them like "sheep going to slaughter." Nina Forbes, a nurse at an assisted living facility, was forced to wear a trash bag at times, according to her daughter, and later die.
Nearly 560,000 Americans have died in the COVID pandemic, with many more experiencing long-term symptoms of COVID.
Health workers have been especially vulnerable through the pandemic, as they have treated patients through early waves when the lack of personal protective equipment was especially acute, through summer surges and a disastrous peak in the winter.
A study of health workers in the U.S. and the United Kingdom in The Lancet found health workers are three times more likely than the general public to become infected with the COVID virus, with disproportionate impacts on minority health workers.
"It's very clear when you just go to the media and see the images on television — the stress and the strain on the faces of healthcare providers, nurses, doctors, other people involved in the healthcare enterprise," said Fauci.
Nevertheless, the U.S. government has failed to systematically count health worker deaths. Members of Congress, the Health and Human Services Department and academic reports have cited The Guardian and KHN's reporting as the most comprehensive. A growing chorus of policy experts and unions have called for a comprehensive count of health worker deaths.
"We certainly want to find an accurate count of the people who die," said Fauci, without noting when the government should undertake such an effort. "Certainly, that's something I think would fall under the auspices of the federal government."
Even as the vaccine rollout picks up speed, health workers continue to be imperiled. More than 400 died between the time the rollout began and late February. Infections among vaccinated health workers have steeply declined, but because deaths are a lagging indicator of the spread of COVID, some health workers will have been sickened before widespread vaccination.
At the same time, immunity to coronaviruses generally wanes over time and variants may blunt the efficacy of some vaccines. A global shortage of vaccines means dozens of poor nations have not inoculated a single person. Advocates argue this has led to a global "vaccine apartheid," which will contribute to the continued emergence of variants. Both scenarios could imperil health workers anew and necessitate a new round of adult mass vaccination.
Studies into the duration of immunity for vaccines, and variants' impact on vaccines, are ongoing. "If we're going to need to do boosting with a variant-specific boost, [we] will be prepared for it because we're already doing a study," Fauci said, with such research taking place at the National Institute of Allergy and Infectious Diseases, which he leads. Even so, "it looks like our ability to protect against variants with the standard vaccine might be better than we anticipated."
Regardless of how future vaccination campaigns play out, Fauci said, U.S. policymakers should learn from what has transpired over the past year.
"We better make sure the lesson we will learn is that we will never again be in a situation where people who are putting their health and their safety on the line don't have the appropriate equipment to protect themselves safely," he said.
People who didn't test positive for COVID — due either to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits.
This article was published on Friday, April 9, 2021 in Kaiser Health News.
Kristin Novotny once led an active life, with regular CrossFit workouts and football in the front yard with her children — plus a job managing the kitchen at a middle school. Now, the 33-year-old mother of two from De Pere, Wisconsin, has to rest after any activity, even showering. Conversations leave her short of breath.
Long after their initial coronavirus infections, patients with a malady known as "long COVID" continue to struggle with varied symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain, and neurological issues. Novotny has been contending with these and more, despite testing negative for COVID-19 seven months ago.
Experts don't yet know what causes long COVID or why some people have persistent symptoms while others recover in weeks or even days. They also don't know just how long the condition — referred to formally by scientists as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC — lasts.
But the people who didn't test positive for COVID — due either to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits. Their cases are not always included in studies of long COVID despite their lingering symptoms. And, sometimes as aggravating, many find that family, friends or even doctors have doubts they contracted COVID at all.
Novotny, who first became ill in August, initially returned to work at the beginning of the school year, but her symptoms snowballed and, one day months later, she couldn't catch her breath at work. She went home and hasn't been well enough to return.
"It is sad and frustrating being unable to work or play with my kids," Novotny said via email, adding that it's devastating to see how worried her family is about her. "My 9-year-old is afraid that if I'm left alone, I will have a medical emergency and no one will be here to help."
Data about the frequency of false-negative diagnostic COVID tests is extremely limited. A study at the Johns Hopkins School of Medicine and Bloomberg School of Public Health, which focused on the time between exposure and testing, found a median false-negative rate of 20% three days after symptoms start. A small study in China conducted early in the pandemic found a high rate of negative tests even among patients sick enough to be hospitalized. And given the dearth of long-hauler research, patients dealing with lingering COVID symptoms have organized to study themselves.
The haphazard protocols for testing people in the United States, the delays and difficulties accessing tests and the poor quality of many of the tests left many people without proof they were infected with the virus that causes COVID-19.
"It's great if someone can get a positive test, but many people who have COVID simply will never have one, for a variety of different reasons," said Natalie Lambert, an associate research professor at the Indiana University School of Medicine and director of research for the online COVID support group Survivor Corps.
Lambert's work with computational analytics has found that long haulers face such a wide variety of symptoms that no single symptom is a good screening tool for COVID. "If PCR tests are not always accurate or available at the right time and it's not always easy to diagnose based on someone's initial symptoms, we really need to have a more flexible, expansive way of diagnosing for COVID based on clinical presentations," she said.
Dr. Bobbi Pritt, chair of the division of clinical microbiology at Mayo Clinic in Minnesota, said four factors affect the accuracy of a diagnostic test: when the patient's sample is collected, what part of the body it comes from, the technique of the person collecting the sample and the test type.
"But if one of those four things isn't correct," said Pritt, "you could still have a false-negative result."
Timing is one of the most nebulous elements in accurately detecting SARS-CoV-2. The body doesn't become symptomatic immediately after exposure. It takes time for the virus to multiply and this incubation period tends to last four or five days before symptoms start for most people. "But we've known that it can be as many as 14 days," Pritt said.
Testing during that incubation period — however long it may be — means there may not be enough detectable virus yet.
"Early on after infection, you may not see it because the person doesn't have enough virus around for you to find," said Dr. Yuka Manabe, an infectious-disease expert and a professor at the Johns Hopkins University School of Medicine.
Novotny woke up with symptoms on Aug. 14 and got a COVID test later that day. Three days later — the same day her test result came back negative — she went to the hospital because of severe shortness of breath and chest pressure.
"The hospital chose not to test me due to test shortages and told me to presume positive," Novotny wrote, adding that hospital staffers told her she likely tested too early and received a false negative.
As the virus leaves the body, it becomes undetectable, but patients may still have symptoms because their immune responses kicked in. At that point, "you're seeing more of an inflammatory phase of illness," Manabe said.
An autoimmune response, in which the body's defense system attacks its own healthy tissue, may be behind persistent COVID symptoms in many patients, though small amounts of virus hiding in organs is another explanation.
Andréa Ceresa is nearing a year of long COVID and has an extensive list of symptoms, topped by gastrointestinal and neurological issues. When the 47-year-old from Branchburg, New Jersey, got sick last April, she had trouble getting a COVID test. Once she did, her result was negative.
Ceresa has seen so many doctors since then that she can't keep them straight. She considers herself lucky to have finally found some "fantastic" doctors, but she's also seen plenty who didn't believe her or tried to gaslight her — a frequent complaint of long haulers.
A couple of doctors told her they didn't think her condition had anything to do with COVID. One told her it was all in her head. And after a two-month wait to see one neurologist, he didn't order any tests and simply told her to take vitamin B, leaving her "crying and devastated."
"I think the negative test absolutely did that," Ceresa said.
Fortunately, among a growing number of physicians specifically treating patients with long COVID, positive test results aren't vital. In the patient-led research, symptoms patients reported were not significantly different between those who had positive COVID tests and those who had negative tests.
Dr. Monica Verduzco-Gutierrez, a rehabilitation and physical medicine doctor who leads University Health's Post-COVID Recovery program in San Antonio, said about 12% of the patients she's seen never had a positive COVID test.
"The initial test, to me, is not as important as the symptoms," Gutierrez said. "You have to spend a lot of time with these patients, provide education, provide encouragement and try to work on all the issues that they're having."
She said she tells people "what's done is done" and, regardless of test status, "now we need to treat the outcome."
In the preceding weeks, as covid made its first advance through California, Gov. Gavin Newsom had called on cities and counties to persuade hotel operators to open their doors to people living on the streets whose age and health made them vulnerable. But in Santa Rosa, a town that thrives on tourist dollars, city leaders knew they would never find enough owners to volunteer their establishments.
SANTA ROSA, Calif. — They knew the neighborhood would revolt.
It was early May, and officials in this Northern California city known for its farm-to-table dining culture and pumped-up housing prices were frantically debating how to keep covid-19 from infiltrating the homeless camps proliferating in the region’s celebrated parks and trails. For years, the number of people living homeless in Santa Rosa and the verdant hills and valleys of broader Sonoma County had crept downward — and then surged, exacerbated by three punishing wildfire seasons that destroyed thousands of homes in four years.
Seemingly overnight, the city’s homeless crisis had burst into view. And with the onset of covid, it posed a devastating health threat to the hundreds of people living in shelters, tents and makeshift shanties, as well as the service providers and emergency responders trying to help them.
In the preceding weeks, as covid made its first advance through California, Gov. Gavin Newsom had called on cities and counties to persuade hotel operators to open their doors to people living on the streets whose age and health made them vulnerable. But in Santa Rosa, a town that thrives on tourist dollars, city leaders knew they would never find enough owners to volunteer their establishments. City Council member Tom Schwedhelm, then serving as mayor, settled on an idea to pitch dozens of tents in the parking lot of a gleaming community center in an affluent neighborhood known as Finley Park, a couple of miles west of Santa Rosa’s central business district.
Neighborhood residents weren’t keen on the idea of accepting homeless people into their enclave of tree-lined streets and sleepy cul-de-sacs. Yet in short order, thousands of residents and businesses received letters notifying them of the city’s plans to erect 70 tents that could shelter as many as 140 people at the Finley Community Center, a neighborhood jewel that draws scores of families and fitness enthusiasts to its manicured picnic grounds, sparkling pool and tennis courts.
The backlash was fierce. For three hours on a Thursday evening in mid-May, Santa Rosa officials defended their plans as hundreds of residents flooded the phone lines to register their discontent.
“Will there be a list of everybody who decided to do this to us and our park, in case we want to vote them out?” one resident barked.
“This is a family neighborhood,” another fumed.
“How can we feel safe using our park?” others pleaded.
In Santa Rosa, like so many other communities, strenuous neighborhood objections typically would drive a stake through a proposal for homeless housing and services. Not this time. Elected officials were not asking; they were telling. The project would move ahead.
“Go ahead and vote me out,” said Schwedhelm, recounting his mindset at the time. “You want to shout at me and get angry? Go ahead. It’s important for government to listen, but the reality is these are our neighbors, so let’s help them.”
Within days, the spacious parking lot at the Finley Community Center was cordoned off with green mesh fencing. Inside, spaced 12 feet apart, were 68 blue tents, each equipped with sleeping bags and storage bin. A neat row of portable toilets lined one side of the encampment, and it was fitted throughout with hand-washing stations and misters for the summer heat.
The city contracted with Catholic Charities of Santa Rosa to manage the camp, and social workers fanned out to the city shelters and unsanctioned encampments, where they found dozens of takers. The first dozen residents were in their tents four days after the site was approved, and the population quickly swelled to nearly 70. In exchange for shelter, showers and three daily meals, camp residents agreed to an 8 p.m. curfew and a contract pledging to honor mask and physical-distancing requirements and act as good neighbors.
Santa Rosa’s tent city opened May 18. And, not too long after, something remarkable happened. Finley Park residents stopped protesting and started dropping off donations of goods — food, clothing, hand sanitizer. The tennis and pickleball courts, an afternoon favorite for retirees, were bustling again. Parents and kids once more crowded the nearby playground.
And inside that towering green perimeter, people started getting their lives together.
From May to late November, Santa Rosa would spend $680,000 to supply and manage the site, a six-month experiment that would chart a new course for the city’s approach to homeless services. As cities across California wrestle with a crisis of homelessness that has drawn international condemnation, the Santa Rosa experience suggests a way forward. Rather than engage in months of paralyzing discussion with neighborhood opponents before committing to a housing or shelter project, city officials decided their role was to lead and inform. They would identify project sites and drive forward, using neighborhood feedback to tailor improvements to a plan — but not to kill it.
It was a watershed moment of action that would echo across Sonoma County.
“We know we’re pissing off a lot of people — they’re rising up and saying, ‘Hell, no!’” said county Supervisor James Gore, president of the California State Association of Counties. “But we can’t just keep saying no. That’s been the failed housing policy of the last 30 to 40 years. Everybody wants a solution, but they don’t want to see that solution in their neighborhoods.”
‘Death by a Thousand Cuts’
About a quarter of the nation’s homeless reside in California, nearly 160,000 people living in cars, on borrowed couches, in temporary shelters or on the streets. The pandemic has exacerbated the crisis for a host of reasons, including covid-related job loss and prison releases and new capacity limits at homeless shelters.
From Los Angeles to Fresno to San Francisco and Sacramento, homeless encampments have multiplied. And without toilets or trash bins, unsanctioned encampments have become magnets for neighborhood complaints about seedy, unsanitary conditions. That leads to regular law enforcement sweeps that raze an encampment only to see it rise elsewhere.
California’s capital city offers a telling example of the dynamic. An estimated 6,000 people are living homeless in Sacramento, a population that has grown more visible since covid brought office life to a standstill. Tents and tarps crowd freeway underpasses throughout the downtown grid, accompanied by wafting piles of trash and clutter.
The mayor, Darrell Steinberg, is known as a champion on homelessness issues. During his years in the state legislature, he pushed through measures that exponentially increased funding to address homelessness and mental illness. But in more than four years as mayor he has struggled to muscle through a cohesive policy for moving people off the streets and into supportive housing.
“The problem with our approach,” Steinberg said earlier this year, “is that every time we seek to build a project, there is a neighborhood controversy. Our own constituents say, ‘Solve it, but please don’t solve it here,’ and we end up experiencing death by a thousand cuts.”
With community uproar building, he is leading the charge on a new initiative to build a continuum of city-sanctioned housing, including triage shelters, sanctioned campgrounds and permanent housing with social services. The city has allocated up to $1 million in an initial outlay for tiny homes and safe camping, but as of March had gotten consensus on just one site: a parking lot beneath a busy freeway where the city will install toilets and hand-washing stations and allow up to 150 people to set up camp.
Donta Williams, homeless the past five years, shakes his head at how long it’s taken the city to sanction a campsite. Priced out of the South Sacramento neighborhood he considers home, Williams has subsisted in a series of squalid lots, regularly packing up and moving from one to the next in response to law enforcement sweeps.
“We’ve got nowhere to go,” said Williams, 40, who is a plaintiff in a legal battle with the city over encampment sweeps. “We need housing. We need services like bathrooms and hand-washing stations. Or how about just some dumpsters so we can pick up the trash?”
A Real Job, a New Beginning
Like Sacramento, Sonoma County has battled unruly homeless encampments for years. Before the fires, the crisis was more hidden, with people sheltering in creek beds and wooded glens abutting hiking and biking trails. The wildfires of 2017, 2019 and 2020 brought many out of the backcountry. And the 5,300 homes decimated by flames meant even more people displaced.
Politicians in Sonoma County described their soul-searching over how to cut through the community gridlock when it comes to finding locations to provide housing and services.
“It’s fear and anger that you’re going to take something away from me if you build this housing — that’s a big part of it, and I saw that anger directed at me, too,” said Shirlee Zane, a vocal backer of homeless services who lost her reelection bid last year after 12 years on the county board of supervisors. “It’s a psychology we see here too often, a sense of entitlement from white middle-class people.”
In creating the Finley Park model, Santa Rosa leaders drew on a few basic tenets. Neighbors were worried about crime and drug use, so the city deployed police officers and security guards for 24/7 patrols. Neighbors worried about trash and disease; the city brought in hand-washing stations, showers and toilets. Catholic Charities enrolled dozens of camp residents in neighborhood beautification projects, giving them gift cards to stores like Target and Starbucks in exchange for picking up trash — usually $50 for a couple of hours of work.
A few times a week, a mobile clinic serviced the camp, dispensing basic health care and medications. Residents had access to virtual mental health treatment and were screened regularly for covid symptoms; only one person tested positive for the coronavirus during the 256 days the site was in operation.
“We were serious about providing access to care,” said Jennifer Ammons, a nurse practitioner who led the mobile clinic. “You can get them inhalers, take care of their cellulitis with antibiotics, get rid of their pneumonia or skin infections.”
Rosa Newman was among those who turned their lives around. Newman, 56, said she had sunk into homelessness and addiction after leaving an abusive partner years before. She moved into her designated tent in September and in a matter of days was enrolled in California’s version of Medicaid, connected to a doctor and receiving treatment for a painful bladder infection. After two months in the camp, she was able to get into subsidized housing and landed a job at a Catholic Charities homeless drop-in center.
“Before, I was so sick I didn’t have any hope. I didn’t have to show up for anything,” she said. “But now I have a real job, and it’s just the beginning.”
James Carver, 50, who for years slept in the doorway of a downtown Santa Rosa business with his wife, said he felt happy just to have a tent over his head. Channeling his energy into cleanup projects and odd jobs around camp, Carver said, his morale began to improve.
“It’s such a comfort; I’m looking for work again,” Carver, an unemployed construction worker, said in November while cleaning stacks of storage totes handed out to camp residents. “I don’t have to sleep with one eye open.”
Jennielynn Holmes, who runs Catholic Charities’ homeless services in Northern California, said the Finley Park experiment helped in ways she didn’t expect.
“This taught us valuable lessons on how to keep the unsheltered population safe, but also we were able to get people signed up for health care and ready for housing faster because we knew where they were,” Holmes said. Of the 208 people served at the site, she said, 12 were moved into permanent housing and nearly five dozen placed in shelters while they await openings.
When Santa Rosa officials conceived of the Finley site, they sold it to the community as temporary, believing covid would run its course by winter. And though covid still raged, they kept that promise and closed the site Nov. 30, then held a community meeting to get feedback. “Only three or four people called in, and they all had positive things to say,” said David Gouin, who has since retired as director of housing and community services.
Several area residents said they changed their mind about the project because of the way the site was managed.
“I was amazed I never saw anything negative at all,” said Boyd Edwards, who plays pickleball at the Finley Community Center a few times a week.
“I thought they were going to be noisy and have crap all over the place. Now, they can have it all year round for all I care,” said his friend Joseph Gernhardt.
Of the 108 calls for police service, almost all were in response to other homeless people wanting to sleep at the site when it was at capacity, records show. And there was no violent behavior, said Police Chief Rainer Navarro.
With the Finley encampment closed, Santa Rosa has expanded its primary shelter while drafting plans to set up year-round managed camps in several neighborhoods, this time with hardened structures. County supervisors, meanwhile, are using $16 million in state grants to purchase and convert two hotels into housing, and have stood their ground in pushing through two Finley Park-style managed encampments, one on county property, the other at a mountain retreat center.
The time has come, they said, to stop debating and embrace solutions.
“We have estates that sell for $20 million, and then you walk by people sleeping in tents with no access to hot food or running water,” said Lynda Hopkins, chair of the county board of supervisors. “These tiny villages — they’re not perfect, but we’re trying to provide some dignity.”
The absence of reliable federal data exacerbated critical problems such as shortages of personal protective equipment that left many workers exposed, with fatal results.
This article was published on Thursday, April 8, 2021 in Kaiser Health News.
Calls are mounting for the Biden administration to set up a national tracking system of COVID-19 deaths among front-line healthcare workers to honor the thousands of nurses, doctors and support staffers who have died and ensure that future generations are not forced to make the same ultimate — and, in many cases, needless — sacrifice.
KHN and The Guardian are tracking healthcare workers who died from COVID-19 and writing about their lives and what happened in their final days.
Health policy experts and union leaders are pressing the White House to move quickly to fill the gaping hole left by the Trump administration through its failure to create an accurate count of COVID deaths among front-line workers. The absence of reliable federal data exacerbated critical problems such as shortages of personal protective equipment that left many workers exposed, with fatal results.
In the absence of federal action, "Lost on the Frontline," a joint project between The Guardian and KHN, has compiled the most comprehensive account of healthcare worker deaths in the nation. It has recorded 3,607 lost lives in the first year of the pandemic, with nurses, healthcare support staffers and doctors, as well as workers under 60 and people of color, affected in tragically high numbers.
The Guardian/KHN investigation, which involved more than 100 reporters, is drawing to a close this week. Pressure is now growing for the federal government to step into the breach.
Harvey Fineberg, a leading health policy expert who approved a recent National Academy of Sciences report that cited the "Frontline" project and recommended the formation of a national tracking system run by the federal government, backed the calls for change. He said his ideal solution would be a nationwide record.
"There would be a combination of a selective look backward to gain more accurate tabulations of the past burden, and a system of data-gathering looking forward to ensure more complete counts in [the] future," he said.
Zenei Triunfo-Cortez, a president of National Nurses United, the largest body of registered nurses in the U.S., said it was unconscionable how many healthcare workers have died of COVID-19. The KHN/Guardian interactive found that almost a third of those who died were nurses — the largest single occupation — followed by support staff members (20%) and physicians (17%).
Triunfo-Cortez said the death toll was an unacceptable tragedy aggravated by the lack of federal data, which made identifying problem areas more difficult. "We as nurses do not deserve this — we signed up to take care of patients, we did not sign up to die," she said.
Dr. Anthony Fauci, the nation's top expert on infectious diseases, also sees a role for federal agencies in tracking mortality among front-line healthcare workers. In an interview with The Guardian, he expressed a desire for a definitive picture of the human toll.
"We certainly want to find an accurate count of the people who died," he said. "That's something that I think would fall under the auspices of the federal government, likely Health and Human Services."
The lack of federal intelligence on deaths among front-line healthcare workers was one of the running failures of the Trump administration's botched response to the crisis. The main health protection agency, the Centers for Disease Control and Prevention, does curate some information but has itself acknowledged that its own record of 1,527 health worker fatalities — more than 2,000 fewer than the joint Guardian/KHN tally — is an undercount based on limitations in its data collection.
Overall, healthcare workers were revealed to be singularly at risk from the pandemic. Some studies have shown they were more than three times as likely to contract COVID as was the general population.
To date, there is no sign of the Biden administration taking active steps to set up a comprehensive data system. An HHS spokesperson said the department has no plans to launch a comprehensive count. However, Triunfo-Cortez said there is a new willingness on the part of the White House and key federal agencies to listen and engage.
"We have been working with the Biden administration and they have been receptive to the changes we are proposing," Triunfo-Cortez said. "We are hopeful that they will start to mandate the reporting of deaths, because if we don't have that data how can we know how effective we are being in stopping the pandemic?"
The responsiveness of the new administration is likely to be heightened by the fact that Biden's chief of staff, Ron Klain, has a track record in fighting infectious disease outbreaks. In 2014, President Barack Obama appointed him "Ebola tsar."
In an article in The Guardian last August, Klain drew on the findings of "Lost on the Frontline" to decry the ultimate price paid by healthcare workers: "Although America has applauded health workers, banged pots in their honor and offered grateful video tributes, we have consistently failed them where it mattered most."
David Blumenthal, the national coordinator for health information technology under Obama, said a national tracking system is an important step in healing the wounds of the pandemic. "So many healthcare workers feel as though their devotion and sacrifice weren't valued," he said. "We must combat the widespread fatigue and disappointment."
KHN senior correspondent Christina Jewett contributed to this report.