Category: From California Healthline.org

As the covid-19 pandemic heads for a showdown with vaccines it’s expected to lose, many experts in the field of emerging infectious diseases are already focused on preventing the next one.

They fear another virus will leap from wildlife into humans, one that is far more lethal but spreads as easily as SARS-CoV-2, the strain of coronavirus that causes covid-19. A virus like that could change the trajectory of life on the planet, experts say.

“What keeps me up at night is that another coronavirus like MERS, which has a much, much higher mortality rate, becomes as transmissible as covid,” said Christian Walzer, executive director of health at the Wildlife Conservation Society. “The logistics and the psychological trauma of that would be unbearable.”

SARS-CoV-2 has an average mortality rate of less than 1%, while the mortality rate for Middle East respiratory syndrome, or MERS — which spread from camels into humans — is 35%. Other viruses that have leapt the species barrier to humans, such as bat-borne Nipah, have a mortality rate as high as 75%.

“There is a huge diversity of viruses in nature, and there is the possibility that one has the Goldilocks characteristics of pre-symptomatic transmission with a high fatality rate,” said Raina Plowright, a virus researcher at the Bozeman Disease Ecology Lab in Montana. (Covid-19 is highly transmissible before the onset of symptoms but fortunately is far less lethal than several other known viruses.) “It would change civilization.”

That’s why in November the German Federal Foreign Office and the Wildlife Conservation Society held a virtual conference called One Planet, One Health, One Future, aimed at heading off the next pandemic by helping world leaders understand that killer viruses like SARS-CoV-2 — and many other less deadly pathogens — are unleashed on the world by the destruction of nature.

With the world’s attention gripped by the spread of the coronavirus, infectious disease experts are redoubling their efforts to show the robust connection between the health of nature, wildlife and humans. It is a concept known as One Health.

While the idea is widely accepted by health officials, many governments have not factored it into policies. So the conference was timed to coincide with the meeting of the world’s economic superpowers, the G20, to urge them to recognize the threat that wildlife-borne pandemics pose, not only to people but also to the global economy.

The Wildlife Conservation Society — America’s oldest conservation organization, founded in 1895 — has joined with 20 other leading conservation groups to ask government leaders “to prioritize protection of highly intact forests and other ecosystems, and work in particular to end commercial wildlife trade and markets for human consumption as well as all illegal and unsustainable wildlife trade,” they said in a recent press release.

Experts predict it would cost about $700 billion to institute these and other measures, according to the Wildlife Conservation Society. On the other hand, it’s estimated that covid-19 has cost $26 trillion in economic damage. Moreover, the solution offered by those campaigning for One Health goals would also mitigate the effects of climate change and the loss of biodiversity.

The growing invasion of natural environments as the global population soars makes another deadly pandemic a matter of when, not if, experts say — and it could be far worse than covid. The spillover of animal, or zoonotic, viruses into humans causes some 75% of emerging infectious diseases.

But multitudes of unknown viruses, some possibly highly pathogenic, dwell in wildlife around the world. Infectious disease experts estimate there are 1.67 million viruses in nature; only about 4,000 have been identified.

SARS-CoV-2 likely originated in horseshoe bats in China and then passed to humans, perhaps through an intermediary host, such as the pangolin — a scaly animal that is widely hunted and eaten.

While the source of SARS-CoV-2 is uncertain, the animal-to-human pathway for other viral epidemics, including Ebola, Nipah and MERS, is known. Viruses that have been circulating among and mutating in wildlife, especially bats, which are numerous around the world and highly mobile, jump into humans, where they find a receptive immune system and spark a deadly infectious disease outbreak.

“We’ve penetrated deeper into eco-zones we’ve not occupied before,” said Dennis Carroll, a veteran emerging infectious disease expert with the U.S. Agency for International Development. He is setting up the Global Virome Project to catalog viruses in wildlife in order to predict which ones might ignite the next pandemic. “The poster child for that is the extractive industry — oil and gas and minerals, and the expansion of agriculture, especially cattle. That’s the biggest predictor of where you’ll see spillover.”

When these things happened a century ago, he said, the person who contracted the disease likely died there. “Now an infected person can be on a plane to Paris or New York before they know they have it,” he said.

Meat consumption is also growing, and that has meant either more domestic livestock raised in cleared forest or “bush meat” — wild animals. Both can lead to spillover. The AIDS virus, it’s believed, came from wild chimpanzees in central Africa that were hunted for food.

One case study for how viruses emerge from nature to become an epidemic is the Nipah virus.

Nipah is named after the village in Malaysia where it was first identified in the late 1990s. The symptoms are brain swelling, headaches, a stiff neck, vomiting, dizziness and coma. It is extremely deadly, with as much as a 75% mortality rate in humans, compared with less than 1% for SARS-CoV-2. Because the virus never became highly transmissible among humans, it has killed just 300 people in some 60 outbreaks.

One critical characteristic kept Nipah from becoming widespread. “The viral load of Nipah, the amount of virus someone has in their body, increases over time” and is most infectious at the time of death, said the Bozeman lab’s Plowright, who has studied Nipah and Hendra. (They are not coronaviruses, but henipaviruses.) “With SARS-CoV-2, your viral load peaks before you develop symptoms, so you are going to work and interacting with your family before you know you are sick.”

If an unknown virus as deadly as Nipah but as transmissible as SARS-CoV-2 before an infection was known were to leap from an animal into humans, the results would be devastating.

Plowright has also studied the physiology and immunology of viruses in bats and the causes of spillover. “We see spillover events because of stresses placed on the bats from loss of habitat and climatic change,” she said. “That’s when they get drawn into human areas.” In the case of Nipah, fruit bats drawn to orchards near pig farms passed the virus on to the pigs and then humans.

“It’s associated with a lack of food,” she said. “If bats were feeding in native forests and able to nomadically move across the landscape to source the foods they need, away from humans, we wouldn’t see spillover.”

A growing understanding of ecological changes as the source of many illnesses is behind the campaign to raise awareness of One Health.

One Health policies are expanding in places where there are likely human pathogens in wildlife or domestic animals. Doctors, veterinarians, anthropologists, wildlife biologists and others are being trained and training others to provide sentinel capabilities to recognize these diseases if they emerge.

The scale of preventive efforts is far smaller than the threat posed by these pathogens, though, experts say. They need buy-in from governments to recognize the problem and to factor the cost of possible epidemics or pandemics into development.

“A road will facilitate a transport of goods and people and create economic incentive,” said Walzer, of the Wildlife Conservation Society. “But it will also provide an interface where people interact and there’s a higher chance of spillover. These kinds of costs have never been considered in the past. And that needs to change.”

The One Health approach also advocates for the large-scale protection of nature in areas of high biodiversity where spillover is a risk.

Joshua Rosenthal, an expert in global health with the Fogarty International Center at the National Institutes of Health, said that while these ideas are conceptually sound, it is an extremely difficult task. “These things are all managed by different agencies and ministries in different countries with different interests, and getting them on the same page is challenging,” he said.

Researchers say the clock is ticking. “We have high human population densities, high livestock densities, high rates of deforestation — and these things are bringing bats and people into closer contact,” Plowright said. “We are rolling the dice faster and faster and more and more often. It’s really quite simple.”

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Funeral director Kevin Spitzer has been overwhelmed with covid-related deaths in the small city of Aberdeen, South Dakota.

He and his two colleagues at the Spitzer-Miller Funeral Home have been working 12-15 hours a day, seven days a week, to keep up with the demand in the community of 26,000. The funerals are sparsely attended, which would have been unthinkable before the pandemic.

“We had a funeral for a younger man one recent Saturday, and not 20 people came, because most everyone was just afraid,” he said.

As covid-19 has spread from big cities to rural communities, it has stressed not only hospitals, but also what some euphemistically call “last responders.” The crush has overwhelmed morgues, funeral homes and religious leaders, required ingenuity and even changed the rituals of honoring the dead.

Officials in many smaller cities and towns learned from seeing the overflow of bodies during last spring’s first wave of covid deaths in places such as Detroit, where nurses at Detroit Medical Center Sinai-Grace Hospital alerted the media to bodies accumulating in hospital storage rooms. They watched as New York hospitals and funeral homes marshaled refrigerated trucks to store bodies. More than 600 bodies of people who died in the spring COVID surge remain in freezer trucks on the Brooklyn waterfront because officials can’t find next of kin, or relatives are also sick or unable to pay for burial.

People like Dr. Robert Kurtzman, Montana’s chief medical examiner, took heed. Last spring, he worked with funeral directors and others to study the state’s morgue capacity. After looking at covid projections, the state arranged with the Montana National Guard to have 13 refrigerated semitrucks ready to dispatch anywhere in the state.

“We are already in a precarious position, and the projections present a scary proposition,” he said. “We need to be ready for worst-case scenarios.”

Chad Towner, CEO of St. Joseph Health System, which has two hospitals in northern Indiana, ordered two refrigerated semitrailers in April. For a time, things were relatively quiet. But the pandemic has hit.

“I told a friend who was a covid doubter that if my wife needed a bed today, I could not arrange one. That’s the dire situation we face here,” Towner said. “All our competitors in the area are in the same boat, and we’re working together instead of competing.”

Although the freezer trucks have not yet been needed, he worries that the sharp increase in cases, and those anticipated from holiday gatherings, will make last-resort measures necessary.

“We recently had four deaths in one afternoon,” said Towner. “A priest approached me to say he’d been asked to provide last rites to three patients in one hour.”

Moving bodies from the hospital morgue is a slower process than usual, he said. “Morticians and funeral homes are overflowing as well. Families that are sick or quarantined at the time of the loved one’s death often can’t work with us on a transfer, meaning bodies are here longer. The entire system is stressed to the tipping point,” said Towner.

Private enterprise has created a solution for smaller communities. In Bozeman, Montana, a specialty truck company has retrofitted trailers that can be pulled by an SUV or a pickup.

Acela Truck Co. has already sold hundreds of the pull-behind refrigerated units created in response to the covid pandemic. They range from 9 to 53 feet and have racks that each hold four body trays. “We’re very busy and have orders in all of the lower 48 states,” said CEO David Ronsen. Acela has partnered with Mopec, a Michigan autopsy supply company, to help sell and deliver the new product.

Billings Clinic in Montana also anticipated a flood of deaths last spring by reserving a semitrailer for delivery, if needed. The clinic, which has just two morgue spaces, has dealt with 80 covid deaths, including seven on the weekend after Thanksgiving.

Chief Nursing Officer Laurie Smith said the hospital is at capacity, despite adding beds by converting office space and building an addition. The hospital, which currently has 335 beds, so far has handled the additional deaths through what she calls a “sad partnership” with funeral homes, which have been quickly picking up bodies the hospital cannot store.

The hospital does its best to allow relatives to say goodbye, but that often involves family members standing at an interior window outside the patient’s room, using a computer tablet to communicate their last words.

That is just one way in which the rituals of grieving have changed during the covid pandemic.

Typical congregational hymns are pretty much gone, as are choirs.

“We are using mostly recordings, sometimes a soloist,” said Spitzer.

Funeral home directors who pride themselves on spending time comforting grieving families say they are so busy that some days they have to rush out from one funeral to begin the next one.

“Families are being robbed of the whole funeral rite experience and losing the support of having friends and family around them,” said Shauna Kjos-Miotke of Fiksdal Funeral Home in Webster, South Dakota.

Native communities have not only been among the hardest hit with covid illnesses and deaths, but their grieving rituals have been among the most seriously disrupted.

“Normally a funeral is a two- or three-day process with hundreds of people,” said Josiah Hugs, a Crow tribal member who is the outreach coordinator for Billings Urban Indian Health and Wellness Center. “Now there is no time to tell stories about the person, not a lot of singing and praying. I’ve been to three recent covid funerals, and everything was at the burial site, with maybe 30 people sitting in their cars and not getting out.”

Covid has even affected body disposal. A survey by the National Funeral Directors Association found that more than half of their members reported increased cremation rates due to covid. The NFDA also found that half its members have clients who have postponed services to hold a memorial later.

In the largely impoverished Hidalgo County, a Texas border area, county officials began using covid funds to help cover the burial costs for struggling families. Then they begin hearing of the emotional costs, including the anguish of videoconferenced funerals, such as for a family that had lost a husband, a mother and an aunt in one month. They wondered if there would be interest in an alternative way to honor the dead.

“We sent out a social media post asking if anyone wanted to post a photograph of a relative who died of covid if we created a county memorial page,” said county spokesperson Carlos Sanchez, who himself barely survived a bout with covid in July. “Within minutes, we got more than 20 emails. Several sent photos of multiple relatives. They want them to be remembered.”

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Ted Howard started taking Truvada a few years ago because he wanted to protect himself against HIV, the virus that causes AIDS. But the daily pill was so pricey he was seriously thinking about giving it up.

Under his insurance plan, the former flight attendant and customer service instructor owed $500 in copayments every month for the drug and an additional $250 every three months for lab work and clinic visits.

Luckily for Howard, his doctor at Las Vegas’ Huntridge Family Clinic, which specializes in LGBTQ care, enrolled him in a clinical trial that covered his medication and other costs in full.

“If I hadn’t been able to get into the trial, I wouldn’t have kept taking PrEP,” said Howard, 68, using the shorthand term for “preexposure prophylaxis.” Taken daily, these drugs — like Truvada — are more than 90% effective at preventing infection with HIV.

Starting this month, most people with private insurance will no longer have to decide whether they can afford to protect themselves against HIV. Most health plans must begin to cover the drugs then without charging consumers anything out-of-pocket (some plans already began doing so last year).

Drugs in this category — Truvada, Descovy and, newly available, a generic version of Truvada — received an “A” recommendation by the U.S. Preventive Services Task Force. Under the Affordable Care Act, preventive services that receive an “A” or “B” rating by the task force, a group of medical experts in prevention and primary care, must be covered by most private health plans without making members share the cost, usually through copayments or deductibles. Only plans that are grandfathered under the health law are exempt.

The task force recommended PrEP for people at high risk of HIV infection, including men who have sex with men and injection drug users.

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In the United States, more than 1 million people live with HIV, and nearly 40,000 new HIV cases are diagnosed every year. Yet fewer than 10% of people who could benefit from PrEP are taking it. One key reason is that out-of-pocket costs can exceed $1,000 annually, according to a study published in the American Journal of Public Health last year. Required periodic blood tests and doctor visits can add hundreds of dollars to the cost of the drug, and it’s not clear whether insurers are required to pick up all those costs.

“Cost sharing has been a problem,” said Michael Crews, policy director at One Colorado, an advocacy group for the LGBTQ community. “It’s not just getting on PrEP and taking a pill. It’s the lab and clinical services. That’s a huge barrier for folks.”

California officials have already sought to address the problem, including guarantees that PrEP drugs and care provided along with the drugs are covered without cost sharing for patients. The state also bans requiring prior approval from insurers to take the drugs and restrictions on the use of some of the drugs if cheaper ones are available.

“California did go further issuing the guidance to cover ancillary services with no cost sharing and we also have the bill preventing [prior authorization] and step therapy for PrEP meds,” said Anne Donnelly, director of state health care policy at the San Francisco AIDS Foundation.

The California requirements, however, apply only to health insurance policies regulated by the state. Employers that pay their workers’ claims directly, rather than buying health insurance, don’t have to comply with the California rules.

Whether you’re shopping for a new plan during open enrollment or want to check out what your current plan covers, here are answers to questions you may have about the new preventive coverage requirement.

Q: How can people find out whether their health plan covers PrEP medications without charge?

The plan’s list of covered drugs, called a formulary, should spell out which drugs are covered, along with details about which drug tier they fall into. Drugs placed in higher tiers generally have higher cost sharing. That list should be online with the plan documents that give coverage details.

Sorting out coverage and cost sharing can be tricky. Both Truvada and Descovy can also be used to treat HIV, and if they are taken for that purpose, a plan may require members to pay some of the cost. But if the drugs are taken to prevent HIV infection, patients shouldn’t owe anything out-of-pocket, no matter which tier they are on.

In a recent analysis of online formularies for plans sold on the ACA marketplaces, Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, found that many plans seemed out of compliance with the requirement to cover PrEP without cost sharing this year.

But representatives for Oscar and Kaiser Permanente, two insurers that were called out in the analysis for lack of compliance, said the drugs are covered without cost sharing in plans nationwide if they are taken to prevent HIV. Schmid later revised his analysis to reflect Oscar’s coverage.

Coverage and cost-sharing information needs to be transparent and easy to find, Schmid said.

“I acted like a shopper of insurance, just like any person would do,” he said. “Even when the information is correct, [it’s so] difficult to find [and there’s] no uniformity.”

It may be necessary to call the insurer directly to confirm coverage details if the information on the website is unclear.

Q: Are all three drugs covered without cost sharing?

Health plans have to cover at least one of the drugs in this category — Descovy and the brand and generic versions of Truvada — without cost sharing. People may have to jump through some hoops to get approval for a specific drug, however. For example, Oscar plans sold in 18 states cover the three PrEP options without cost sharing. The generic version of Truvada doesn’t require prior authorization by the insurer. But if someone wants to take the name-brand drug, they have to go through an approval process. Descovy, a newer drug, is available without cost sharing only if people are unable to use Truvada or its generic version because of clinical intolerance or other issues.

Q: What about the lab work and clinical visits that are necessary while taking PrEP? Are those services also covered without cost sharing?

That is the thousand-dollar question. People who are taking drugs to prevent HIV infection need to meet with a clinician and have bloodwork every three months to test for HIV, hepatitis B and sexually transmitted infections, and to check their kidney function.

The task force recommendation doesn’t specify whether these services must also be covered without cost sharing, and advocates say federal guidance is necessary to ensure they are free.

“If you’ve got a high-deductible plan and you’ve got to meet it before those services are covered, that’s going to add up,” said Amy Killelea, senior director of health systems and policy at the National Alliance of State & Territorial AIDS Directors. “We’re trying to emphasize that it’s integral to the intervention itself.”

A handful of states have programs that help people cover their out-of-pocket costs for lab and clinical visits, generally based on income.

There is precedent for including free ancillary care as part of a recommended preventive service. After consumers and advocates complained, the Centers for Medicare & Medicaid Services (CMS) clarified that under the ACA removing a polyp during a screening colonoscopy is considered an integral part of the procedure and patients shouldn’t be charged for it.

CMS officials declined to clarify whether PrEP services such as lab work and clinical visits are to be covered without cost sharing as part of the preventive service and noted that states generally enforce such insurance requirements. “CMS intends to contact state regulators, as appropriate, to discuss issuer’s compliance with the federal requirements and whether issuers need further guidance on which services associated with PrEP must be covered without cost sharing,” the agency said in a statement.

Q: What if someone runs into roadblocks getting a plan to cover PrEP or related services without cost sharing?

If an insurer charges for the medication or a follow-up visit, people may have to go through an appeals process to fight it.

“They’d have to appeal to the insurance company and then to the state if they don’t succeed,” said Nadeen Israel, vice president of policy and advocacy at the AIDS Foundation of Chicago. “Most people don’t know to do that.”

Q: Are uninsured people also protected by this new cost-sharing change for PrEP?

Unfortunately, no. The ACA requirement to cover recommended preventive services without charging patients applies only to private insurance plans. People without insurance don’t benefit. Gilead, which makes both Truvada and Descovy, has a patient assistance program for the uninsured.

This story also ran on Fortune. It can be republished for free.

Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.

Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn’t afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.

Every year, however, Clark has to find new grants to cover her expensive cancer drug.

“It’s shameful that people should have to scramble to find funding for medical care,” she said. “I count my blessings, because other patients have stories that are a lot worse than mine.”

Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It’s often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients’ 5% coinsurance costs once they hit $6,550 in drug spending for this year (rising from $6,350 in 2020), except for very low-income beneficiaries.

President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there’s disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.

That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America’s uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.

Growing Expense of Specialty, Cancer Medicines

Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)

The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.

For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark’s drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes “pricing should be put in the context of the value, or benefit, the medicine delivers to patients, health care systems and society overall,” a spokesperson for Bristol Myers Squibb said via email.

As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program’s catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees’ average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.

The median annual income for Medicare beneficiaries is $26,000.

Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor’s office and they have a Medigap or Medicare Advantage plan, which caps those expenses.

But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.

“With the high cost of drugs today, that 5% can be a third or more of a patient’s Social Security check,” said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.

This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn’t allowed by Medicare.

‘This Is a Little Nuts’

All this has caused financial and emotional turmoil for people who face a life-threatening disease.

Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That’s because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.

But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.

Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she’d pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won’t know until sometime this month.

“It’s just strange you have to make a decision about your treatment based on your finances rather than what’s the right drug for you,” she said. “I always thought that when I get to Medicare age I’ll be able to breathe a sigh of relief. This is a little nuts.”

Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.

“If I didn’t do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn’t get the drug, which is awful,” said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. “Patients would just say, ‘I can’t afford it. I’ll just die.’”

The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.

But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.

“If you are a normal consumer, you don’t know much about any of this until you get sick and all of a sudden you find out you can’t afford your medication,” he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.

Yet many don’t. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.

Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. “People tell me they haven’t started treatment because they don’t have money to pay,” she said. “No one in this country should have to choose between housing, food or medicine. It should never be that way, never.”

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Yolanda Coar was 40 when she died of COVID-19 in August 2020 in Augusta, Georgia. She was also a nurse manager, and one of nearly 3,000 frontline workers who have died in the U.S. fighting this virus, according to an exclusive investigation by The Guardian and KHN.

Read more of the health workers’ stories behind the statistics — their personalities, passions and quirks. “Lost on the Frontline” examines: Did they have to die?

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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ERIE, Colo. — Whenever Larry Kelderman looks up from the car he’s fixing and peers across the street, he’s looking across a border. His town of 28,000 straddles two counties, separated by County Line Road.

Kelderman’s auto repair business is in Boulder County, whose officials are sticklers for public health and have topped the county website with instructions on how to report COVID violations. Kelderman lives in Weld County, where officials refuse to enforce public health rules.

Weld County’s test positivity rate is twice that of its neighbor, but Kelderman is pretty clear which side he backs.

“Which is worse, the person gets the virus and survives and they still have a business, or they don’t get the virus and they lose their livelihood?” he said.

Boulder boasts one of the most highly educated populations in the nation; Weld boasts about its sugar beets, cattle and thousands of oil and gas wells. Summer in Boulder County means concerts featuring former members of the Grateful Dead; in Weld County, it’s rodeo time. Boulder voted for Biden, Weld for Trump. Per capita income in Boulder is nearly 50% higher than in Weld.

Even their COVID outbreaks are different: In Boulder County, the virus swirls around the University of Colorado. In Weld County, some of the worst outbreaks have swept through meatpacking plants.

It’s not the first time County Line Road has been a fault line.

“I’ve been in politics seven years and there’s always been a conflict between the two counties,” said Jennifer Carroll, mayor of Erie, once a coal mining town and now billed as a good place to raise a family, about 30 minutes north of Denver.

Shortly before the coronavirus hit Colorado, Erie’s board of trustees extended a moratorium on new oil and gas operations in the town. Weld County was not pleased.

“They got really angry at us for doing that, because oil and gas is their thing,” Carroll said.

Most of the town’s businesses are on the Weld side. To avoid public health whiplash, Carroll and other town leaders have asked residents to comply with the more restrictive stance of the Boulder side.

The feud got ugly in a dispute over hospital beds. At one point, the state said Weld County had only three intensive care beds, while Weld County claimed it had 43.

“It made my job harder, because people were doubting what I was saying,” said Carroll. “Nobody trusted anyone because they were hearing conflicting information.”

Weld’s number, it turned out, included not just the beds in its two hospitals, but also those in 10 other hospitals across the county line, including in the city of Longmont.

Longmont sits primarily in Boulder County but spills into Weld, where its suburbs taper into fields pockmarked with prairie dog holes. Its residents say they can tell snow is coming when the winds deliver a pungent smell of livestock from next door. Longmont Mayor Brian Bagley worried that Weld’s behavior would deliver more than a stench: It might also deliver patients requiring precious resources.

“They were basically encouraging their citizens to violate the emergency health orders … with this cowboy-esque, you know, ‘Yippee-ki-yay, freedom, Constitution forever, damn the consequences,’” said Bagley. “Their statement is, ‘Our hospitals are full, but don’t worry, we’re just going to use yours.’”

So, “for 48 hours, I trolled Weld County,” he said. Bagley asked the city council to consider an ordinance that could have restricted Weld County residents’ ability to receive care at Longmont hospitals. Bagley, who retracted his proposal the next day, said he knew it was never going to come to fruition — after all, it was probably illegal — but he wanted to prove a point.

“They’re going to be irresponsible? Fine. Let me propose a question,” he said. “If there is only one ICU bed left and there are two grandparents there — one from Weld, one from Boulder — and they both need that bed, who should get it?”

Weld County commissioners volleyed back, calling Bagley a “simple mayor.” They wrote that the answer to the pandemic was “not to continually punish working-class families or the individuals who bag your groceries, wait on you in restaurants, deliver food to your home while you watch Netflix and chill.”

“I know we’re all trying to get along, but people are starting to do stupid and mean things and so I’ll be stupid and mean back,” Bagley said during a Dec. 8 council meeting.

In another Longmont City Council meeting, Bagley (who suspects the commissioners don’t know what “Netflix and chill” typically means) often referred to Weld simply as “our neighbors to the East,” declining to name his foe. The council shrugged off his statement about withholding medical treatment but demanded that Weld County step up to fight the pandemic.

“We would not deny medical care to anybody. It’s illegal and it’s immoral,” said council member Polly Christensen. “But it is wrong for people to expect us to bear the burden of what they’ve been irresponsible enough to let loose.”

“They’re the reason why I can’t be in the classroom in front of my kids,” said council member and teacher Susie Hidalgo-Fahring, whose school district straddles the counties. “I’m done with that. Everybody needs to be a good neighbor.”

The council decided Dec. 15 to send a letter to Weld County’s commissioners encouraging them to enforce state restrictions and to make a public statement about the benefits of wearing masks and practicing physical distancing. They’ve also backed a law allowing Democratic Gov. Jared Polis to withhold relief money from counties that don’t comply with restrictions.

Weld County Commissioner Scott James said his county doesn’t have the authority to enforce public health orders any more than a citizen has the authority to give a speeding ticket.

“If you want me as an elected official to assume authority that I don’t have and arbitrarily exert it over you, I dare you to look that up in the dictionary,” said James, who is a rancher turned country radio host. “It’s called tyranny.”

James doesn’t deny that COVID-19 is ravaging his community. “We’re on fire, and we need to put that fire out,” he said. But he believes that individuals will make the right decisions to protect others, and demands the right of his constituents to use the hospital nearest them.

“To look at Weld County like it has walls around it is shortsighted and not the way our health care system is designed to work,” James said. “To use a crudity, because I am, after all, just a ranch kid turned radio guy, there’s no ‘non-peeing’ section in the pool. Everybody’s gonna get a little on ’em. And that’s what’s going on right now with COVID.”

The dispute is not just liberal and conservative politics clashing. Bagley, the Longmont mayor, grew up in Weld County and “was a Republican up until Trump,” he said. But it is an example of how the virus is tapping into long-standing Western strife.

“There’s decades of reasons for resentment at people from a distance — usually from a metropolis and from a state or federal governmental office — telling rural people what to do,” said Patty Limerick, faculty director at the Center of the American West at the University of Colorado-Boulder, and previously state historian.

In the ’90s, she toured several states performing a mock divorce trial between the rural and urban West. She played Urbana Asphalt West, married to Sandy Greenhills West. Their child, Suburbia, was indulged and clueless and had a habit of drinking everyone else’s water. A rural health care shortage was one of many fuels of their marital strife.

Limerick and her colleagues are reviving the play now and adding COVID references. This time around, she said, it’ll be a last-ditch marriage counseling session for high school classes and communities to adopt and perform. It likely won’t have a scripted ending; she’s leaving that up to each community.

Nine months into the pandemic that has killed more than 320,000 people in the U.S., Kim Larson is still trying to convince others in her northern Montana county that COVID-19 is dangerous.

As Hill County Health Department director and county health officer, Larson continues to hear people say the coronavirus is just like a bad case of the flu. Around the time Montana’s governor mandated face coverings in July, her staffers saw notices taped in several businesses’ windows spurning the state’s right to issue such emergency orders.

For a while, the county with a population of 16,000 along the Canadian border didn’t see much evidence of the pandemic. It had only one known COVID case until July. But that changed as the nation moved into its third surge of the virus this fall. By mid-December, Hill County had recorded more than 1,500 cases — the vast majority since Oct. 1 — and 33 people there had died.

When Larson hears people say pandemic safety rules should end, she talks about how contagious the COVID virus is, how some people experience lasting effects and how hospitals are so full that care for any ailment could face delays.

“In public health, we’ve seen the battle before, but you typically have the time to build your evidence, research showing that this really does save lives,” Larson said. “In the middle of a pandemic, you have no time.”

Public health laws typically come long after social norms shift, affirming a widespread acceptance that a change in habits is worth the public good and that it’s time for stragglers to fall in line. But even when decades of evidence show a rule can save lives — such as wearing seat belts or not smoking indoors — the debate continues in some places with the familiar argument that public restraints violate personal freedoms. This fast-moving pandemic, however, doesn’t afford society the luxury of time. State mandates have put local officials in charge of changing behavior while general understanding catches up.

Earlier this month, U.S. Surgeon General Jerome Adams stood next to Montana’s governor in Helena and said he hopes people wear masks because it’s the right thing to do — especially as COVID hospitalizations rise.

“You don’t want to be the reason that a woman in labor can’t get a hospital bed,” Adams said, adding a vaccine is on the way. “It’s just for a little bit longer.”

He spoke days after state lawmakers clashed over masks as a majority of Republican lawmakers arrived for a committee meeting barefaced and at least one touted false information on the dangers of masks. As of Dec. 15, the Republican majority hadn’t required masks for the upcoming legislative session, set to begin Jan. 4.

And now a group opposed to masks from Gallatin and Flathead counties has filed a lawsuit asking a Montana judge to block the state’s pandemic-related safety rules.

Public health laws typically spark political battles. Changing people’s habits is hard, said Lindsay Wiley, director of the health law and policy program at American University in Washington, D.C. Despite the misconception that there was universal buy-in for masks during the 1918 pandemic, Wiley said, some protesters intentionally built rap sheets of arrests for going maskless in the name of liberty.

She said health officials realize any health restrictions amid a pandemic require the public’s trust and cooperation for success.

“We don’t have enough police to walk around and force everyone to wear a mask,” she said. “And I’m not sure we want them to do it.”

Local officials have the best chance to win over that support, Wiley said. And seeing elected leaders such as President Donald Trump rebuff his own federal health guidelines makes that harder. Meanwhile, public shaming like calling unmasked people selfish or stupid can backfire, Wiley said, because if they were to give in to mask-wearing, they would essentially be accepting those labels.

In the history of public health laws, even rules that have had time to build widely accepted evidence weren’t guaranteed support.

It’s illegal in Montana to go without a seat belt in a moving car. But, as in 13 other states, authorities aren’t allowed to pull people over for being unbuckled. Every few years, a Montana lawmaker, backed by a collection of public health and law enforcement organizations, proposes a law to allow seat belt traffic stops, arguing it would save lives. In 2019, that request didn’t even make it out of committee, squelched by the arguments of personal choice and not giving too much power to the government.

Main opposition points against public health laws — whether it’s masks, seat belts, motorcycle helmets or smoking — can sound alike.

When Missoula County became the first place in Montana to ban indoor smoking in public spaces in 1999, opponents said the change would destroy businesses, be impossible to enforce and violate people’s freedom of choice.

“They are the same arguments in a lot of ways,” said Ellen Leahy, director of the Missoula City-County Health Department. “Public health was right at that intersection between what’s good for the whole community and the rights and responsibilities of the individual.”

Montana adopted an indoor smoking ban in 2005, but many bars and taverns were given until 2009 to fall in line. And, in some places, debate and court battles continued for a decade more on how the ban could be enforced.

Amid the COVID pandemic, Missoula County was again ahead of much of the state when it passed its own mask ordinance. The county has two hospitals and a university that swells its population with students and commuters.

“If you have to see it to believe it, you’re going to see the impact of a pandemic first in a city, most likely,” Leahy said.

Compliance hasn’t been perfect and she said the need for strict enforcement has been limited. As of early December, out of the more than 1,500 complaints the Missoula health department followed up on since July, it sent closure notices to four businesses that flouted the rules.

In Hill County, when the health department gets complaints that a business is violating pandemic mandates, two part-time health sanitarians, who perform health inspections of businesses, talk with the owners about why the rules exist and how to live by them. Often it works. Other times the complaints keep coming.

County attorney Karen Alley said the local health officials have reached out to her office with complaints of noncompliance on COVID safety measures, but she has not seen enough evidence to bring a civil case against a business. Unlike other health laws, she said, mask rules have no case studies yet to offer a framework for enforcing them through the Montana courts. (A handful of cases against businesses skirting COVID rules were still playing out as of mid-December.)

“Somebody has to be the test case, but you never want to be the test case,” said Alley, who is part of a team of three. “It’s a lot of resources, a lot of time.”

Larson, with the Hill County Health Department, said her focus is still on winning over the community. And she’s excited about some progress. The town’s annual live Nativity scene, which typically draws crowds with hot cocoa, turned into a drive-by event this year.

She doesn’t expect everyone to follow the rules — that’s never the case in public health. But Larson hopes enough people will to slow down the virus. That could be happening. By mid-December, the county’s tally of daily active cases was declining for the first time since its spike began in October.

“You just try to figure out the best way for your community and to get their input,” Larson said. “Because we need the community’s help to stop it.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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This story also ran on The New York Times. It can be republished for free.

WASHINGTON — Even before there was a vaccine, some seasoned doctors and public health experts warned, Cassandra-like, that its distribution would be “a logistical nightmare.”

After Week 1 of the rollout, “nightmare” sounds like an apt description.

Dozens of states say they didn’t receive nearly the number of promised doses. Pfizer says millions of doses sat in its storerooms, because no one from President Donald Trump’s Operation Warp Speed task force told them where to ship them. A number of states have few sites that can handle the ultra-cold storage required for the Pfizer product, so, for example, front-line workers in Georgia have had to travel 40 minutes to get a shot. At some hospitals, residents treating COVID patients protested that they had not received the vaccine while administrators did, even though they work from home and don’t treat patients.

The potential for more chaos is high. Dr. Vivek Murthy, named as the next surgeon general under President-elect Joe Biden, said this week that the Trump administration’s prediction — that the general population would get the vaccine in April — was realistic only if everything went smoothly. He instead predicted wide distribution by summer or fall.

The Trump administration had expressed confidence that the rollout would be smooth, because it was being overseen by a four-star general, Gustave Perna, an expert in logistics. But it turns out that getting fuel, tanks and tents into war-torn mountainous Afghanistan is in many ways simpler than passing out a vaccine in our privatized, profit-focused and highly fragmented medical system. Gen. Perna apologized this week, saying he wanted to “take personal responsibility.” It’s really mostly not his fault.

Throughout the COVID pandemic, the U.S. health care system has shown that it is not built for a coordinated pandemic response (among many other things). States took wildly different COVID prevention measures; individual hospitals varied in their ability to face this kind of national disaster; and there were huge regional disparities in test availability — with a slow ramp-up in availability due, at least in some part, because no payment or billing mechanism was established.

Why should vaccine distribution be any different?

In World War II, toymakers were conscripted to make needed military hardware airplane parts, and commercial shipyards to make military transport vessels. The Trump administration has been averse to invoking the Defense Production Act, which could help speed and coordinate the process of vaccine manufacture and distribution. On Tuesday, it indicated it might do so, but only to help Pfizer obtain raw materials that are in short supply, so that the drugmaker could produce — and sell — more vaccines in the United States.

Instead of a central health-directed strategy, we have multiple companies competing to capture their financial piece of the pandemic health care pie, each with its patent-protected product as well as its own supply chain and shipping methods.

Add to this bedlam the current decision-tree governing distribution: The Centers for Disease Control and Prevention has made official recommendations about who should get the vaccine first — but throughout the pandemic, many states have felt free to ignore the agency’s suggestions.

Instead, Operation Warp Speed allocated initial doses to the states, depending on population. From there, an inscrutable mix of state officials, public health agencies and lobbyists seem to be determining where the vaccine should go. In some states, counties requested an allotment from the state, and then they tried to accommodate requests from hospitals, which made their individual algorithms for how to dole out the precious cargo. Once it became clear there wasn’t enough vaccine to go around, each entity made its own adjustments.

Some doses are being shipped by FedEx or UPS. But Pfizer — which did not fully participate in Operation Warp Speed — is shipping much of the vaccine itself. In nursing homes, some vaccines will be delivered and administered by employees of CVS and Walgreens, though issues of staffing and consent remain there.

The Moderna vaccine, rolling out this week, will be packaged by the “pharmaceutical services provider” Catalent in Bloomington, Indiana, and then sent to McKesson, a large pharmaceutical logistics and distribution outfit. It has offices in places like Memphis, Tennessee, and Louisville, which are near air hubs for FedEx and UPS, which will ship them out.

Is your head spinning yet?

Looking forward, basic questions remain for 2021: How will essential workers at some risk (transit workers, teachers, grocery store employees) know when it’s their turn? (And it will matter which city you work in.) What about people with chronic illness — and then everyone else? And who administers the vaccine — doctors or the local drugstore?

In Belgium, where many hospitals and doctors are private but work within a significant central organization, residents will get an invitation letter “when it’s their turn.” In Britain, the National Joint Committee on Vaccination has settled on a priority list for vaccinations — those over 80, those who live or work in nursing homes, and health care workers at high risk. The National Health Service will let everyone else “know when it’s your turn to get the vaccine ” from the government-run health system.

In the United States, I dread a mad scramble — as in, “Did you hear the CVS on P Street got a shipment?” But this time, it’s not toilet paper.

Combine this vision of disorder with the nation’s high death toll, and it’s not surprising that there is intense jockeying and lobbying — by schools, unions, even people with different types of preexisting diseases — over who should get the vaccine first, second and third. It’s hard to “wait your turn” in a country where there are 200,000 new cases and as many as 2,000 new daily COVID deaths — a tragic per capita order of magnitude higher than in many other developed countries.

So kudos and thanks to the science and the scientists who made the vaccine in record time. I’ll eagerly hold out my arm — so I can see the family and friends and colleagues I’ve missed all these months. If only I can figure out when I’m eligible, and where to go to get it.

This story also ran on The Guardian. It can be republished for free.

More than 2,900 U.S. health care workers have died in the COVID-19 pandemic since March, a far higher number than that reported by the government, according to a new analysis by KHN and The Guardian.

Fatalities from the coronavirus have skewed young, with the majority of victims under age 60 in the cases for which there is age data. People of color have been disproportionately affected, accounting for about 65% of deaths in cases in which there is race and ethnicity data. After conducting interviews with relatives and friends of around 300 victims, KHN and The Guardian learned that one-third of the fatalities involved concerns over inadequate personal protective equipment.

Many of the deaths — about 680 — occurred in New York and New Jersey, which were hit hard early in the pandemic. Significant numbers also died in Southern and Western states in the ensuing months.

The findings are part of “Lost on the Frontline,” a nine-month data and investigative project by KHN and The Guardian to track every health care worker who dies of COVID-19.

One of those lost, Vincent DeJesus, 39, told his brother Neil that he’d be in deep trouble if he spent much time with a COVID-positive patient while wearing the surgical mask provided to him by the Las Vegas hospital where he worked. DeJesus died on Aug. 15.

Another fatality was Sue Williams-Ward, a 68-year-old home health aide who earned $13 an hour in Indianapolis, and bathed, dressed and fed clients without wearing any PPE, her husband said. She was intubated for six weeks before she died May 2.

“Lost on the Frontline” is prompting new government action to explore the root cause of health care worker deaths and take steps to track them better. Officials at the Department of Health and Human Services recently asked the National Academy of Sciences for a “rapid expert consultation” on why so many health care workers are dying in the U.S., citing the count of fallen workers by The Guardian and KHN.

“The question is, where are they becoming infected?” asked Michael Osterholm, a member of President-elect Joe Biden’s COVID-19 advisory team and director of the Center for Infectious Disease Research and Policy at the University of Minnesota. “That is clearly a critical issue we need to answer and we don’t have that.”

The Dec. 10 report by the national academies suggests a new federal tracking system and specially trained contact tracers who would take PPE policies and availability into consideration.

Doing so would add critical knowledge that could inform generations to come and give meaning to the lives lost.

“Those [health care workers] are people who walked into places of work every day because they cared about patients, putting food on the table for families, and every single one of those lives matter,” said Sue Anne Bell, a University of Michigan assistant professor of nursing and co-author of the national academies report.

The recommendations come at a fraught moment for health care workers, as some are getting the COVID-19 vaccine while others are fighting for their lives amid the highest levels of infection the nation has seen.

The toll continues to mount. In Indianapolis, for example, 41-year-old nurse practitioner Kindra Irons died Dec. 1. She saw seven or eight home health patients per week while wearing full PPE, including an N95 mask and a face shield, according to her husband, Marcus Irons.

The virus destroyed her lungs so badly that six weeks on the most aggressive life support equipment, ECMO, couldn’t save her, he said.

Marcus Irons said he is now struggling financially to support their two youngest children, ages 12 and 15. “Nobody should have to go through what we’re going through,” he said.

In Massachusetts, 43-year-old Mike “Flynnie” Flynn oversaw transportation and laundry services at North Shore Medical Center, a hospital in Salem, Massachusetts. He and his wife were also raising young children, ages 8, 10 and 11.

Flynn, who shone at father-daughter dances, fell ill in late November and died Dec. 8. He had a heart attack at home on the couch, according to his father, Paul Flynn. A hospital spokesperson said he had full access to PPE and free testing on-site.

Since the first months of the pandemic, more than 70 reporters at The Guardian and KHN have scrutinized numerous governmental and public data sources, interviewed the bereaved and spoken with health care experts to build a count.

The total number includes fatalities identified by labor unions, obituaries and news outlets and in online postings by the bereaved, as well as by relatives of the deceased. The previous total announced by The Guardian and KHN was approximately 1,450 health care worker deaths. The new number reflects the inclusion of data reported by nursing homes and health facilities to the federal and state governments. These deaths include the facility names but not worker names. Reporters cross-checked each record to ensure fatalities did not appear in the database twice.

The tally has been widely cited by other media as well as by members of Congress.

Rep. Norma Torres (D-Calif.) referenced the data citing the need for a pending bill that would provide compensation to the families of health care workers who died or sustained long-term disabilities from COVID-19.

Sen. Ron Wyden (D-Ore.) mentioned the tally in a Senate Finance Committee hearing about the medical supply chain. “The fact is,” he said, “the shortages of PPE have put our doctors and nurses and caregivers in grave danger.”

This story is part of “Lost on the Frontline,” an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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This story can be republished for free (details).

This story also ran on The Guardian. It can be republished for free.

Workers at Garfield Medical Center in suburban Los Angeles were on edge as the pandemic ramped up in March and April. Staffers in a 30-patient unit were rationing a single tub of sanitizing wipes all day. A May memo from the CEO said N95 masks could be cleaned up to 20 times before replacement.

Patients showed up COVID-negative but some still developed symptoms a few days later. Contact tracing took the form of texts and whispers about exposures.

By summer, frustration gave way to fear. At least 60 staff members at the 210-bed community hospital caught COVID-19, according to records obtained by KHN and interviews with eight staff members and others familiar with hospital operations.

The first to die was Dawei Liang, 60, a quiet radiology technician who never said no when a colleague needed help. A cardiology technician became infected and changed his final wishes — agreeing to intubation — hoping for more years to dote on his grandchildren.

Few felt safe.

Ten months into the pandemic, it has become far clearer why tens of thousands of health care workers have been infected by the virus and why so many have died: dire PPE shortages. Limited COVID tests. Sparse tracking of viral spread. Layers of flawed policies handed down by health care executives and politicians, and lax enforcement by government regulators.

All of those breakdowns, across cities and states, have contributed to the deaths of more than 2,900 health care workers, a nine-month investigation by over 70 reporters at KHN and The Guardian has found. This number is far higher than that reported by the U.S. government, which does not have a comprehensive national count of health care workers who’ve died of COVID-19.

The fatalities have skewed young, with the majority of victims under age 60 in the cases for which there is age data. People of color have been disproportionately affected, accounting for about 65% of deaths in cases in which there is race and ethnicity data. After conducting interviews with relatives and friends of around 300 victims, KHN and The Guardian learned that one-third of the fatalities involved concerns over inadequate personal protective equipment.

Many of the deaths occurred in New York and New Jersey, and significant numbers also died in Southern and Western states as the pandemic wore on.

Workers at well-funded academic medical centers — hubs of policymaking clout and prestigious research — were largely spared. Those who died tended to work in less prestigious community hospitals like Garfield, nursing homes and other health centers in roles in which access to critical information was low and patient contact was high.

Garfield Medical Center and its parent company, AHMC Healthcare, did not respond to multiple calls or emails regarding workers’ concerns and circumstances leading to the worker deaths.

So as 2020 draws to a close, we ask: Did so many of the nation’s health care workers have to die?

New York’s Warning for the Nation

The seeds of the crisis can be found in New York and the surrounding cities and suburbs. It was the region where the profound risks facing medical staff became clear. And it was here where the most died.

As the pandemic began its U.S. surge, city paramedics were out in force, their sirens cutting through eerily empty streets as they rushed patients to hospitals. Carlos Lizcano, a blunt Queens native who had been with the New York City Fire Department (FDNY) for two decades, was one of them.

He was answering four to five cardiac arrest calls every shift. Normally he would have fielded that many in a month. He remembered being stretched so thin he had to enlist a dying man’s son to help with CPR. On another call, he did chest compressions on a 33-year-old woman as her two small children stood in the doorway of a small apartment.

“I just have this memory of those kids looking at us like, ‘What’s going on?’”

After the young woman died, Lizcano went outside and punched the ambulance in frustration and grief.

The personal risks paramedics faced were also grave.

More than 40% of emergency medical service workers in the FDNY went on leave for confirmed or suspected coronavirus during the first three months of the pandemic, according to a study by the department’s chief medical officer and others.

In fact, health care workers were three times more likely than the general public to get COVID-19, other researchers found. And the risks were not equally spread among medical professions. Initially, CDC guidelines were written to afford the highest protection to workers in a hospital’s COVID-19 unit.

Yet months later, it was clear that the doctors initially thought to be at most risk — anesthesiologists and those working in the intensive care unit — were among the least likely to die. This could be due to better personal protective equipment or patients being less infectious by the time they reach the ICU.

Instead, scientists discovered that “front door” health workers like paramedics and those in acute-care “receiving” roles — such as in the emergency room — were twice as likely as other health care workers to be hospitalized with COVID-19.

For FDNY’s first responders, part of the problem was having to ration and reuse masks. Workers were blind to an invisible threat that would be recognized months later: The virus spread rapidly from pre-symptomatic people and among those with no symptoms at all.

In mid-March, Lizcano was one of thousands of FDNY first responders infected with COVID-19.

At least four of them died, city records show. They were among the 679 health care workers who have died in New York and New Jersey to date, most at the height of the terrible first wave of the virus.

“Initially, we didn’t think it was this bad,” Lizcano said, recalling the confusion and chaos of the early pandemic. “This city wasn’t prepared.”

Neither was the rest of the country.

An Elusive Enemy

The virus continued to spread like a ghost through the nation and proved deadly to workers who were among the first to encounter sick patients in their hospital or nursing home. One government agency had a unique vantage point into the problem but did little to use its power to cite employers — or speak out about the hazards.

Health employers had a mandate to report worker deaths and hospitalizations to the Occupational Safety and Health Administration.

When they did so, the report went to an agency headed by Eugene Scalia, son of conservative Supreme Court Justice Antonin Scalia who died in 2016. The younger Scalia had spent part of his career as a corporate lawyer fighting the very agency he was charged with leading.

Its inspectors have documented instances in which some of the most vulnerable workers — those with low information and high patient contact — faced incredible hazards, but OSHA’s staff did little to hold employers to account.

Beaumont, Texas, a town near the Louisiana border, was largely untouched by the pandemic in early April.

That’s when a 56-year-old physical therapy assistant at Christus Health’s St. Elizabeth Hospital named Danny Marks called in sick with a fever and body aches, federal OSHA records show.

He told a human resources employee that he’d been in the room of a patient who was receiving a breathing treatment — the type known as the most hazardous to health workers. The CDC advises that N95 respirators be used by all in the room for the so-called aerosol-generating procedures. (A facility spokesperson said the patient was not known or suspected to have COVID at the time Marks entered the room.)

Marks went home to self-isolate. By April 17, he was dead.

The patient whose room Marks entered later tested positive for COVID-19. And an OSHA investigation into Marks’ death found there was no sign on the door to warn him that a potentially infected patient was inside, nor was there a cart outside the room where he could grab protective gear.

The facility did not have a universal masking policy in effect when Marks went in the room, and it was more than likely that he was not wearing any respiratory protection, according to a copy of the report obtained through a public records request. Twenty-one more employees contracted COVID by the time he died.

“He was a beloved gentleman and friend and he is missed very much,” Katy Kiser, Christus’ public relations director, told KHN.

OSHA did not issue a citation to the facility, instead recommending safety changes.

The agency logged nearly 8,700 complaints from health care workers in 2020. Yet Harvard researchers found that some of those desperate pleas for help, often decrying shortages of PPE, did little to forestall harm. In fact, they concluded that surges in those complaints preceded increases in deaths among working-age adults 16 days later.

One report author, Peg Seminario, blasted OSHA for failing to use its power to get employers’ attention about the danger facing health workers. She said issuing big fines in high-profile cases can have a broad impact — except OSHA has not done so.

“There’s no accountability for failing to protect workers from exposure to this deadly virus,” said Seminario, a former union health and safety official.

More ‘Lost on the Frontline’ Stories

Desperate for Safety Gear

There was little outward sign this summer that Garfield Medical Center was struggling to contain COVID-19. While Medicare has forced nursing homes to report staff infections and deaths, no such requirement applies to hospitals.

Yet as the focus of the pandemic moved from the East Coast in the spring to Southern and Western states, health care worker deaths climbed. And behind the scenes at Garfield, workers were dealing with a lack of equipment meant to keep them safe.

Complaints to state worker-safety officials filed in March and April said Garfield Medical Center workers were asked to reuse the same N95 respirator for a week. Another complaint said workers ran out of medical gowns and were directed to use less-protective gowns typically provided to patients.

Staffers were shaken by the death of Dawei Liang. And only after his death and a rash of infections did Garfield provide N95 masks to more workers and put up plastic tarps to block a COVID unit from an adjacent ward. Yet this may have been too late.

The coronavirus can easily spread to every corner of a hospital. Researchers in South Africa traced a single ER patient to 119 cases in a hospital — 80 among staff members. Those included 62 nurses from neurology, surgical and general medical units that typically would not have housed COVID patients.

By late July, Garfield cardiac and respiratory technician Thong Nguyen, 73, learned he was COVID-positive days after he collapsed at work. Nguyen loved his job and was typically not one to complain, said his youngest daughter, Dinh Kozuki. A 34-year veteran at the hospital, he was known for conducting medical tests in multiple languages. His colleagues teased him, saying he was never going to retire.

Kozuki said her father spoke up in March about the rationing of protective gear, but his concerns were not allayed.

The PPE problems at Garfield were a symptom of a broader problem. As the virus spread around the nation, chronic shortages of protective gear left many workers in community-based settings fatally exposed. Nearly 1 in 3 family members or friends of around 300 health care workers interviewed by KHN or The Guardian expressed concerns about a fallen workers’ PPE.

Health care workers’ labor unions asked for the more-protective N95 respirators when the pandemic began. But Centers for Disease Control and Prevention guidelines said the unfitted surgical masks worn by workers who feed, bathe and lift COVID patients were adequate amid supply shortages.

Mary Turner, an ICU nurse and president of the Minnesota Nurses Association, said she protested alongside nurses all summer demanding better protective gear, which she said was often kept from workers because of supply-chain shortages and the lack of political will to address them.

“It shouldn’t have to be that way,” Turner said. “We shouldn’t have to beg on the streets for protection during a pandemic.”

At Garfield, it was even hard to get tested. Critical care technician Tony Ramirez said he started feeling ill on July 12. He had an idea of how he might have been exposed: He’d cleaned up urine and feces of a patient suspected of having COVID-19 and worked alongside two staffers who also turned out to be COVID-positive. At the time, he’d been wearing a surgical mask and was worried it didn’t protect him.

Yet he was denied a free test at the hospital, and went on his own time to Dodger Stadium to get one. His positive result came back a few days later.

As Ramirez rested at home, he texted Alex Palomo, 44, a Garfield medical secretary who was also at home with COVID-19, to see how he was doing. Palomo was the kind of man who came to many family parties but would often slip away unseen. A cousin finally asked him about it: Palomo said he just hated to say goodbye.

Palomo would wear only a surgical mask when he would go into the rooms of patients with flashing call lights, chat with them and maybe bring them a refill of water, Ramirez said.

Ramirez said Palomo had no access to patient charts, so he would not have known which patients had COVID-19: “In essence, he was helping blindly.”

Palomo never answered the text. He died of COVID-19 on Aug. 14.

And Thong Nguyen had fared no better. His daughter, a hospital pharmacist in Fresno, had pressed him to go on a ventilator after seeing other patients survive with the treatment. It might mean he could retire and watch his grandkids grow up. But it made no difference.

“He definitely should not have passed [away],” Kozuki said.

Nursing Homes Devastated

During the summer, as nursing homes recovered from their spring surge, Heather Pagano got a new assignment. The Doctors Without Borders adviser on humanitarianism had been working in cholera clinics in Nigeria. In May, she arrived in southeastern Michigan to train nursing home staffers on optimal infection-control techniques.

Federal officials required worker death reports from nursing homes, which by December tallied more than 1,100 fatalities. Researchers in Minnesota found particular hazards for these health workers, concluding they were the ones most at risk of getting COVID-19.

Pagano learned that staffers were repurposing trash bin liners and going to the local Sherwin-Williams store for painting coveralls to backfill shortages of medical gowns. The least-trained clinical workers — nursing assistants — were doing the most hazardous jobs, turning and cleaning patients, and brushing their teeth.

She said nursing home leaders were shuffling reams of federal, state and local guidelines yet had little understanding of how to stop the virus from spreading.

“No one sent trainers to show people what to do, practically speaking,” she said.

As the pandemic wore on, nursing homes reported staff shortages getting worse by the week: Few wanted to put their lives on the line for $13 an hour, the wage for nursing assistants in many parts of the U.S.

The organization GetusPPE, formed by doctors to address shortages, saw almost all requests for help were coming from nursing homes, doctors’ offices and other non-hospital facilities. Only 12% of the requests could be fulfilled, its October report said.

And a pandemic-weary and science-wary public has fueled the virus’s spread. In fact, whether or not a nursing home was properly staffed played only a small role in determining its susceptibility to a lethal outbreak, University of Chicago public health professor Tamara Konetzka found. The crucial factor was whether there was widespread viral transmission in the surrounding community.

“In the end, the story has pretty much stayed the same,” Konetzka said. “Nursing homes in virus hot spots are at high risk and there’s very little they can do to keep the virus out.”

The Vaccine Arrives

From March through November, 40 complaints were filed about the Garfield Medical Center with the California Department of Public Health, nearly three times the statewide average for the time. State officials substantiated 11 complaints and said they are part of an ongoing inspection.

For Thanksgiving, AHMC Healthcare Chairman Jonathan Wu sent hospital staffers a letter thanking “frontline healthcare workers who continue to serve, selflessly exposing themselves to the virus so that others may cope, recover and survive.”

The letter made no mention of the workers who had died. “A lot of people were upset by that,” said critical care technician Melissa Ennis. “I was upset.”

By December, all workers were required to wear an N95 respirator in every corner of the hospital, she said. Ennis said she felt unnerved taking it off. She took breaks to eat and drink in her car.

Garfield said on its website that it is screening patients for the virus and will “implement infection prevention and control practices to protect our patients, visitors, and staff.”

On Dec. 9, Ennis received notice that the vaccine was on its way to Garfield. Nationwide, the vaccine brought health workers relief from months of tension. Nurses and doctors posted photos of themselves weeping and holding their small children.

At the same time, it proved too late for some. A new surge of deaths drove the toll among health workers to more than 2,900.

And before Ennis could get the shot, she learned she would have to wait at least a few more days, until she could get a COVID test.

She found out she’d been exposed to the virus by a colleague.

Shoshana Dubnow and Anna Sirianni contributed to this report.Video by Hannah NormanWeb production by Lydia Zuraw

This story is part of “Lost on the Frontline,” an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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