Healthcare workers on the front lines of the COVID crisis have spent exhausting months working and self-quarantining off-duty to keep from infecting others. Encountering people who indignantly refuse face coverings can feel like a slap in the face.
This article was first published on Tuesday, July 7, 2020 in Kaiser Health News.
When an employee told a group of 20-somethings they needed face masks to enter his fast-food restaurant, one woman fired off a stream of expletives. "Isn't this Orange County?" snapped a man in the group. "We don't have to wear masks!"
The curses came as a shock, but not really a surprise, to Nilu Patel, a certified registered nurse anesthetist at nearby University of California-Irvine Medical Center, who observed the conflict while waiting for takeout. Health care workers suffer these angry encounters daily as they move between treacherous hospital settings and their communities, where mixed messaging from politicians has muddied common-sense public health precautions.
"Healthcare workers are scared, but we show up to work every single day," Patel said. Wearing masks, she said, "is a very small thing to ask."
Patel administers anesthesia to patients in the operating room, and her husband is also a health care worker. They've suffered sleepless nights worrying about how to keep their two young children safe and schooled at home. The small but vocal chorus of people who view face coverings as a violation of their rights makes it all worse, she said.
That resistance to the public health advice didn't grow in a vacuum. Health care workers blame political leadership at all levels, from President Donald Trump on down, for issuing confusing and contradictory messages.
"Our leaders have not been pushing that this is something really serious," said Jewell Harris Jordan, a 47-year-old registered nurse at the Kaiser Permanente Oakland Medical Center in Oakland, California. She's distraught that some Americans see mandates for face coverings as an infringement upon their rights instead of a show of solidarity with health care workers. (Kaiser Health News produces California Healthline, is not affiliated with Kaiser Permanente.)
"If you come into the hospital and you're sick, I'm going to take care of you," Jordan said. "But damn, you would think you would want to try to protect the people that are trying to keep you safe."
In Orange County, where Patel works, mask orders are particularly controversial. The county's chief health officer, Dr. Nichole Quick, resigned June 8 after being threatened for requiring residents to wearthem in public. Three days later, county officials rescinded the requirement. On June 18, a few days after Patel visited the restaurant, Gov. Gavin Newsom issued a statewide mandate.
The county's flip-flop illustrates the national conflict over masks. When the coronavirus outbreak emerged in February, officials from the U.S. Centers for Disease Control and Prevention discouraged the public from buying masks, which were needed by health care workers. It wasn't until April that federal officials began advising most everyone to wear cloth face coverings in public.
One recent study showed that masks can reduce the risk of coronavirus infection, especially in combination with physical distancing. Another study linked policies in 15 states and Washington, D.C., mandating community use of face coverings with a decline in the daily COVID-19 growth rate and estimated that as many as 450,000 cases had been prevented as of May 22.
But the use of masks has become politicized. Trump's inconsistency and nonchalance about them sowed doubt in the minds of millions who respect him, said Jordan, the Oakland nurse. That has led to "very disheartening and really disrespectful" rejection of masks.
"They truly should have just made masks mandatory throughout the country, period," said Jordan, 47. Out of fear of infecting her family with the virus, she hasn't flown to see her mother or two adult children on the East Coast during the pandemic, Jordan said.
But a mandate doesn't necessarily mean authorities have the ability or will to enforce it. In California, where the governor left enforcement up to local governments, some sheriff's departments have said it would be inappropriate to penalize mask violations. This has prompted some health care workers to make personal appeals to the public.
After the Fresno County Sheriff-Coroner's Office announced it didn't have the resources to enforce Newsom's mandate, Amy Arlund, a 45-year-old nurse at the COVID unit at the Kaiser Permanente Fresno Medical Center, took to her Facebook account to plead with friends and family about the need to wear masks.
"If I'm wrong, you wore a silly mask and you didn't like it," she posted on June 23. "If I'm right and you don't wear a mask, you better pray that all the nurses aren't already out sick or dead because people chose not to wear a mask. Please tell me my life is worth a LITTLE of your discomfort?"
To protect her family, Arlund lives in a "zone" of her house that no other member may enter. When she must interact with her 9-year-old daughter to help her with school assignments, they each wear masks and sit 3 feet apart.
Every negative interaction about masks stings in the light of her family's sacrifices, said Arlund. She cites a woman who approached her husband at a local hardware store to say he looked "ridiculous" in the N95 mask he was wearing.
"It's like mask-shaming, and we're shaming in the wrong direction," Arlund said. "He does it to protect you, you cranky hag!"
After seeing a Facebook comment alleging that face masks can cause low oxygen levels, Dr. Megan Hall decided to publish a small experiment. Hall, a pediatrician at the Conway Medical Center in Myrtle Beach, South Carolina, wore different kinds of medical masks for five minutes and then took photos of her oxygen saturation levels, as measured by her pulse oximeter. As she predicted, there was no appreciable difference in oxygen levels. She posted the photo collection on June 22, and it quickly went viral.
that about 75% of residents in her community do not wear masks in public. She doesn't feel she has the time or energy to educate people about the risk. (Courtesy of Cynthia Butler)
"Some of our officials and leaders have not taken the best precautions," said Hall, who hopes for "a change of heart" about masks among local officials and the public. South Carolina Gov. Henry McMaster has urged residents to wear face coverings in public, but he said a statewide mandate was unenforceable.
In Florida, where Gov. Ron DeSantis has resisted calls for a statewide order on masks despite a massive surge of COVID-19 cases and hospitalizations, Cynthia Butler, 62, recently asked a young man at the register of a pet store why he wasn't wearing a mask.
"His tone was more like, this whole mask thing is ridiculous," said Butler, a registered nurse at Fawcett Memorial Hospital in Port Charlotte. She didn't tell him that she had just recovered from a COVID-19 infection contracted at work. The exchange saddened her, but she hasn't the time to lecture everyone she encounters without a mask — about three-quarters of her community, Butler estimated.
"They may think you're stepping on their rights," she said. "It's not anything I want to get shot over."
For months, Patricia Merryweather-Arges, a health care expert, has fielded questions about the coronavirus pandemic from fellow Rotary Club members in the Midwest.
Recently people have wondered "Is it safe for me to go see my doctor? Should I keep that appointment with my dentist? What about that knee replacement I put on hold: Should I go ahead with that?"
These are pressing concerns as hospitals, outpatient clinics and physicians' practices have started providing elective medical procedures — services that had been suspended for several months.
Late last month, KFF reported that 48% of adults had skipped or postponed medical care because of the pandemic. Physicians are deeply concerned about the consequences, especially for people with serious illnesses or chronic medical conditions.
To feel comfortable, patients need to take stock of the precautions providers are taking. This is especially true for older adults, who are particularly vulnerable to COVID-19. Here are suggestions that can help people think through concerns and decide whether to seek elective care:
Before you go in. Give yourself at least a week to learn about your medical provider's preparations. "You want to know in advance what's expected of you and what you can expect from your providers," said Lisa McGiffert, co-founder of the Patient Safety Action Network.
Merryweather-Arges' organization, Project Patient Care, has developed a guide with recommended questions. Among them: Will I be screened for COVID-19 upon arrival? Do I need to wear a mask and gloves? Are there any restrictions on what I can bring (a laptop, books, a change of clothing)? Are the areas I'll visit cleaned and disinfected between patients?
Also ask whether patients known to have COVID are treated in the same areas you'll use. Will the medical staffers who interact with you also see these patients?
If you're getting care in a hospital, will you be tested for COVID-19 before your procedure? Is the staff being tested and, if so, under what circumstances?
Hospitals, medical clinics and physicians are offering this kind of information to varying degrees. In the New York City metropolitan area, Mount Sinai Health System has launched a comprehensive "Safety Hub" on its website featuring extensive information and videos.
Mount Sinai also encourages physicians to reach out to patients with messages tailored to their conditions. People "want to hear directly from their providers," said Karen Wish, the system's chief marketing officer.
Don't hesitate to press for more details, said Dr. Allen Kachalia, senior vice president of patient safety and quality at Johns Hopkins Medicine: "Where people get in trouble is when they're afraid to bring their concerns forward."
Seeking care. Wendy Hayum-Gross, 57, a counselor who lives in Naperville, Illinois, had been waiting since mid-March to get blood tests that would help doctors diagnose the underlying cause of a new condition, a goiter. A few weeks ago, she decided it was time.
The hospital lab she went to, operated by Edward-Elmhurst Health, told Hayum-Gross to wear a mask and gave her a number to call when she arrived in the parking lot. Outside the front door, she was met by a staffer who took her temperature, asked several screening questions and gave her hand sanitizer.
"Once I passed that, a phlebotomist met me on the other side of the door and took me to a chair that was still wet with disinfectant. She wore a mask and gloves, and there was no one else around," Hayum-Gross said. "When I saw the precautions they had put in place and the almost military precision with which they were carrying them out, I felt much better."
Marjorie Helsel DeWert, 67, of Athens, Ohio, was similarly impressed when she visited her dentist recently and noticed circular yellow signs on the floor of the office, spaced 6 feet apart, indicating where people should stand. Staffers had even put pens used to fill out paperwork in individual containers and arranged to disinfect them after use.
DeWert, a learning scientist, came up with a patient safety checklist and distributed it to family and friends. Among her questions: Can necessary forms be completed online before a medical visit? Can I wait in the car outside until called? What kind of personal protective equipment is the staff using? And is the staff being checked for symptoms daily?
Bringing a caregiver. Some medical centers are allowing caregivers to accompany patients; others are not. Be sure to ask what policies are in place.
If you feel your presence is necessary — for instance, if you want to be there for a relative who is frail or cognitively compromised — be firm but also respectful, said Ilene Corina, president of the Pulse Center for Patient Safety Education & Advocacy.
Be prepared to wear a gown, gloves and mask. "You're not there for yourself: You're there to support the health care team and the patient," said Corina, whose organization offers training to caregivers.
In Orland Park, Illinois, debi Ross, an interior designer, and her sister live with her 101-year-old mother. Eight years ago, when her mother had a tumor removed from her colon, Ross and her sister wiped down every electric socket, cord, surface and door handle in her mother's hospital room.
"Unless Mom absolutely needs [medical] care, we're not going to take her anywhere," Ross said. "But I assure you, if she does have to go see somebody, we're going to clean that place down from top to bottom, I don't care what anybody says."
If you are not allowed into a medical facility, get a phone number for the physician caring for a loved one and make sure they have your number as well, Merryweather-Arges said. Ask that you be contacted immediately if there are any complications.
Afterward. Patients leaving hospitals are fearful these days that they may have become infected with COVID-19, unwittingly. Ask your physician or a nurse what equipment you'll need to monitor yourself. Will a pulse oximeter and a thermometer be necessary? Will you need masks and gloves at home if someone is coming in to help you out with the transition? Can someone provide that equipment?
"Family caregivers need instructions that are clear," said Martin Hatlie, chief executive of Project Patient Care. "They need to know who to call 24/7 if they have a question. And they need clear guidance about infection control in the home."
If home care is being ordered, ask the agency whether they have trained staff to recognize COVID symptoms. And have home care workers been tested for COVID-19 or had symptoms?
If follow-up care is being provided via telehealth, make sure the setup works before your loved one comes home. Ask your physician's office what kind of equipment you will need, which service they use (Zoom? Skype?) and whether you can arrange a test in advance.
Finally, as you resume activities, help protect others against COVID-19 as well as yourself. When you go out into the world again, "mask up, socially distance and wash your hands," said Kachalia of Johns Hopkins. "And if you're sick or have symptoms, by all means, let your doctor's office know before you come in for a checkup."
Without medication to manage her plaque psoriasis, Jennifer Brown's face, scalp, trunk and neck periodically become covered in painful red, flaky patches so dry they crack and bleed.
She has gotten relief from medications, but they come at a high price. For a while she was on Humira, made by AbbVie, with an average retail price of roughly $8,600 for two monthly injections. When that drug stopped working for her, Brown's doctor switched her to a different drug. Today she is using another injectable, Skyrizi, also by AbbVie, which costs about $36,000 for two quarterly injections — nearly 40% more annually than Humira.
The pharmaceutical company offers an assistance program to help consumers like Brown pay their share of the drug, and that has helped her cover her copayments. However, she faces the possibility of higher drug costs under a federal rule finalized this spring by the Trump administration.
The rule, an annual directive that sets health plan standards for 2021, permits employers and insurers not to apply drug company copayment assistance toward enrollees' deductibles and out-of-pocket maximums for any drug. That means only payments made by the patients themselves would factor into the calculations to reach those spending targets and could make individuals responsible for thousands of dollars in drug costs.
Advocates for consumers with chronic conditions say the rule will make it harder for patients with conditions such as cancer and multiple sclerosis who rely on very expensive drugs to afford them.
"I understand that the administration doesn't want to encourage patients to take higher-priced drugs," said Carl Schmid, executive director of the HIV + Hepatitis Policy Institute. "But … these are people who have HIV and other chronic conditions who take drugs that don't have generics."
Patient advocates had hoped the administration would allow employers and insurers to apply these restrictions only if a patient was taking a brand-name drug that had an appropriate generic alternative. In the rule that set standards for 2020, the administration initially seemed to take that approach. But, faced with criticism by employers and insurers, it said last summer that it would reconsider the position.
Drug company programs that provide copayment assistance to consumers have long been controversial. Employers and insurers say they encourage people to take expensive brand-name drugs instead of equally effective but cheaper generics.
Consumer advocates counter that many of the drugs consumers take for chronic conditions have no alternative. Research has shown that generics exist for about half of the drugs that offer copayment assistance.
Drugs to treat patients with hemophilia cost an average $275,000 annually, said Kollet Koulianos, senior director of payer relations at the National Hemophilia Foundation. There are no generic alternatives.
"We're not talking about $5 coupons in the Sunday paper," Koulianos said. "We're talking about high-cost specialty drugs, where they have to take this drug month in and month out for years. [Patients] just can't make the math work" without financial help.
The medication that Jennifer Brown, of Roanoke, Virginia, uses to treat her plaque psoriasis costs about $36,000 for two quarterly injections. The drugmaker offers an assistance program to help consumers pay their share of the expense, but Brown is concerned she could face higher out-of-pocket costs under a new federal rule. (Courtesy of Jennifer Brown)
The Business Group on Health, which represents large employers, supported the provisions in the final rule that allow employers to opt not to apply the value of drug company copayments for any drug toward their employees' out-of-pocket spending limits, said Steve Wojcik, vice president of public policy. About a third of large employers have such programs in place, according to the organization's annual survey.
The final rule gives employers flexibility, Wojcik said.
"If there's not a generic alternative available, a drug coupon may make sense," Wojcik said. "But it also begs the question: Why doesn't the manufacturer just lower the price at the beginning rather than issue a coupon?"
The final rule allows state laws regarding "copay accumulators," as these health plan programs are often called, to supersede the federal rule. Four states — Arizona, Illinois, Virginia and West Virginia — have passed laws that limit or prohibit their use, according to Ben Chandhok, senior director of state legislative affairs at the Arthritis Foundation. Seventeen states have considered similar bills this year, but it's unlikely any will pass given the pressure states are under because of the coronavirus pandemic, he said.
When lawmakers next meet, "they will most likely consider budget-related bills," Chandhok said.
Brown, 44, who works in auto insurance claims settlements, lives in Roanoke, Virginia. Her state is one of the few that require insurers to count payments made by drug companies on consumers' behalf toward their out-of-pocket spending limits. But her company is self-insured, meaning it pays its employees' claims directly instead of buying state-regulated insurance for that purpose. So the company isn't bound by Virginia's law and instead follows federal regulation.
A few years ago, her employer put a copay accumulator feature on her health insurance plan so the copayment assistance she received from the drug company for Humira no longer counted toward her deductible and out-of-pocket maximum spending limit for the year. That meant that once AbbVie's assistance maxed out for the year, she would be on the hook for the drug's full cost until she reached her deductible and then for cost sharing until she reached her plan's annual out-of-pocket limit.
The insurance change made her so anxious that she had a stress-related flare-up of her psoriasis, and for the first time broke out on her legs.
"I can't even describe to you how stressful that was," said Brown.
Fortunately, her doctor was able to provide Brown with drug samples, saving her from paying out-of-pocket for Humira.
There is no generic alternative for Skyrizi, the drug Brown takes now. This year, she aimed to reduce the odds that she'd be responsible for high drug payments by switching to a plan with a $2,000 deductible and a $3,000 maximum out-of-pocket spending limit. It's more expensive than her previous plan, but it reduces how much she may owe in drug copayments.
The AbbVie program will cover up to $16,000 annually in copay assistance for Skyrizi before Brown has to start paying out-of-pocket. She doesn't expect to exceed that level, so she hopes she's off the hook for this year.
But Brown acknowledges this problem isn't going away, and it's a constant source of worry.
"If I don't have the drug, my quality of life would just not be worth living," she said. "So I'll just keep accumulating debt if it comes down to that."
This article was first published on Wednesday, July 1, 2020 in Kaiser Health News.
With a tiny brush, briefly swab the vagina to collect cells. Then slide the swab into a screening kit and drop it into the mail.
Proponents believe a simple test like this, which can be done at home, may help the U.S. move closer to eradicating cervical cancer. The National Cancer Institute plans to launch a multisite study next year involving roughly 5,000 women to assess whether self-sampling at home is comparable to screening in the office by a clinician.
Nearly 14,000 Americans this year will be diagnosed with the highly preventable cancer, and more than 4,000 will die. Women who are uninsured or can't get regular medical care are more likely to miss out on lifesaving screening, said Vikrant Sahasrabuddhe, a program director in the NCI's Division of Cancer Prevention. If women could collect the vaginal and cervical cells to be tested for human papillomavirus (HPV) — the virus that causes virtually all cervical cancers — they could get screened from home, just as home-based stool samples can be used to detect colon cancer, he said.
"What we have seen is this persistent group of women who continue to get cervical cancer every year," said Sahasrabuddhe, who oversees studies involving HPV-related cancers. "And that number is really not going down."
Federal officials hope the research will fast-track a test approved by the Food and Drug Administration that could be part of screening guidelines if self-sampling is proved effective, Sahasrabuddhe said. Rather than wait for self-sampling studies to be done by the individual companies that make the HPV tests for clinicians, federal officials will team up with the companies, academic institutions and others in a public-private partnership, he explained. NCI officials, who expect to spend about $6 million in federal funds, will oversee the study's data and analysis.
"If every company goes and does their own trial, they may take years to achieve it," Sahasrabuddhe said. "We want to accelerate that process."
HPV self-sampling, already promoted in countries such as Australia and the Netherlands, is one of several approaches that U.S. cervical cancer researchers are pursuing. Another key strategy involves vaccinating adolescents against HPV, which is transmitted through sexual activity. As of 2018, nearly 54% of girls had been fully vaccinated by age 17, as had almost 49% of boys, according to the most recent federal data. The countries that have had better success in reducing cervical cancer — one analysis predicts that Australia is on track to eliminate the disease — have emphasized HPV vaccination for adolescents.
Federal officials still advise vaccinated women to get regularly screened, as the vaccine doesn't guard against all the strains that cause cervical cancer. But persuading some women to come into the office for the physical exam is sometimes a tough sell.
For some, access or cost may be an issue. Most insurance plans cover screening and there are also some public programs, but uninsured women who are unaware of them may have to pay for an office visit and test. Besides, women can't always break away from work or find child care, or they may have had "negative emotions or experiences in the past with pelvic exams," said Rachel Winer, a professor of epidemiology at the University of Washington School of Public Health who studies HPV self-sampling.
Reversing The Trend
Roughly 4 out of 5 women get regularly screened for cervical cancer, but the rates peaked around 2000 and have been on a slight decline since, according to federal data. That figure, which is based on patient self-reporting, may be optimistic. Another analysis, which looked at the medical records of 27,418 Minnesota women ages 30 to 65, found that nearly 65% were up to date as of 2016, according to the findings, published last year in the Journal of Women's Health.
"Sadly, I think our data is probably more reflective of what's happening with screening rates in our country," said Dr. Kathy MacLaughlin, a study author and researcher at Mayo Clinic in Rochester, Minnesota.
One hurdle to getting screened may be the complexity of the guidelines, MacLaughlin said. Rather than an easy-to-remember annual exam, screenings occur at intervals of longer than a year. A woman's age helps determine when the HPV test or a Pap smear, which collects cells from the cervix to look for precancerous changes, is recommended by the U.S. Preventive Services Task Force.
"It's just that challenge of, how do any of us remember to do something every three years or every five years?" MacLaughlin said. "That's hard."
At-Home Logistics
While the NCI hasn't yet settled on the precise self-sampling approach it will use, the technique generally requires the woman to insert a tiny brush into her vagina and rotate it several times to collect the cells. Then she slides the brush into a specimen container that has a preservative solution and returns the kit for HPV analysis.
According to a review of studies published in 2018 in the medical journal BMJ, the accuracy of identifying HPV was similar when the samples were collected by women at home as when collected by clinicians. A urine-based HPV test, which may prove easier for women to perform, also is being studied, said Jennifer Smith, a professor of epidemiology at the University of North Carolina's Gillings School of Global Public Health.
Before companies can pursue applications for an FDA-approved home test, self-sampling by women has to be shown comparable to detect HPV, though perhaps it may not be quite as accurate as when a clinician is involved, Sahasrabuddhe said. NCI officials are still finalizing study details. But the plan is to invite four companies that already manufacture HPV tests for clinicians to participate, Sahasrabuddhe said. The companies will pick up the tab for the cost of the tests as well as future fees related to pursuing license applications through the FDA, he said. Sahasrabuddhe expects the study results to be available by 2024, if not sooner.
Any woman who tests positive for HPV will be referred for procedures, including possibly a biopsy, to look for abnormal cells or cervical cancer, Sahasrabuddhe said.
If an FDA-approved home test is developed, it's crucial that uninsured women and others who don't have easy access to medical care be able to get those procedures, Smith said.
"You just don't send random kits out to people's homes," Smith said, "and not ensure that they have someone to talk to about the results and are going to be able to be integrated into a follow-up system."
Carmen Quintero works an early shift as a supervisor at a 3M distribution warehouse that ships N95 masks to a nation under siege from the coronavirus. On March 23, she had developed a severe cough, and her voice, usually quick and enthusiastic, was barely a whisper.
A human resources staff member told Quintero she needed to go home.
“They told me I couldn’t come back until I was tested,” said Quintero, who was also told that she would need to document that she didn’t have the virus.
Her primary care doctor directed her to the nearest emergency room for testing because the practice had no coronavirus tests.
The Corona Regional Medical Center is just around the corner from her house in Corona, California, and there a nurse tested her breathing and gave her a chest X-ray. But the hospital didn’t have any tests either, and the nurse told her to go to Riverside County’s public health department. There, a public health worker gave her an 800 number to call to schedule a test. The earliest the county could test her was April 7, more than two weeks later.
At the hospital, Quintero got a doctor’s note saying she should stay home from work for a week, and she was told to behave as if she had COVID-19, isolating herself from vulnerable household members. That was difficult — Quintero lives with her grandmother and her girlfriend’s parents — but she managed. No one else in her home got sick, and by the time April 7 came, she felt better and decided not to get the coronavirus test.
Then the bill came.
The Patient: Carmen Quintero, 35, a supervisor at a 3M distribution warehouse who lives in Corona, California. She has an Anthem Blue Cross health insurance plan through her job with a $3,500 annual deductible.
Total Bill: Corona Regional Medical Center billed Quintero $1,010, and Corona Regional Emergency Medical Associates billed an additional $830 for physician services. She also paid $50 at Walgreens to fill a prescription for an inhaler.
Service Provider: Corona Regional Medical Center, a for-profit hospital owned by Universal Health Services, a company based in King of Prussia, Pennsylvania, which is one of the largest health care management companies in the nation. The hospital contracts with Corona Regional Emergency Medical Associates, part of Emergent Medical Associates.
Medical Service: Quintero was evaluated in the emergency room for symptoms consistent with COVID-19: a wracking cough and difficulty breathing. She had a chest X-ray and a breathing treatment and was prescribed an inhaler.
What Gives: On that day in late March when her body shook from coughing, Quintero’s immediate worry was infecting her family, especially her girlfriend’s parents, both over 65, and her 84-year-old grandmother.
“If something was to happen to them, I don’t know if I would have been able to live with it,” said Quintero.
Quintero wanted to isolate in a hotel, but she could hardly afford to for the week that she stayed home. She had only three paid sick days and was forced to take vacation time until her symptoms subsided and she was allowed back at work. At the time, few places provided publicly funded hotel rooms for sick people to isolate, and Quintero was not offered any help.
For her medical care, Quintero knew she had a high-deductible plan yet felt she had no choice but to follow her doctor’s advice and go to the nearest emergency room to get tested. She assumed she would get the test and not have to pay. Congress had passed the CARES Act just the week before, with its headlines saying coronavirus testing would be free.
That legislation turned out to be riddled with loopholes, especially for people like Quintero who needed and wanted a coronavirus test but couldn’t get one early in the pandemic.
“I just didn’t think it was fair because I went in there to get tested,” she said.
Some insurance companies are voluntarily reducing copayments for COVID-related emergency room visits. Quintero said her insurer, Anthem Blue Cross, would not reduce her bill. Anthem would not discuss the case until Quintero signed its own privacy waiver; it would not accept a signed standard waiver KHN uses. The hospital would not discuss the bill with a reporter unless Quintero could also be on the phone, something that has yet to be arranged around Quintero’s workday, which begins at 4 a.m. and ends at 3:30 p.m.
Three states have gone further than Congress to waive cost sharing for testing and diagnosis of pneumonia and influenza, given these illnesses are often mistaken for COVID-19. California is not one of them, and because Quintero’s employer is self-insured — the company pays for health services directly from its own funds — it is exempt from state directives anyway. The U.S. Department of Labor regulates all self-funded insurance plans. In 2019, nearly 2 in 3 covered workers were in these types of plans.
Resolution: As lockdown restrictions ease and coronavirus cases rise around the country, public health officials say quickly isolating sick people before the virus spreads through families is essential.
But isolation efforts have gotten little attention in the U.S. Nearly all local health departments, including Riverside County, where Quintero lives, now have these programs, according to the National Association of County and City Health Officials. Many were designed to shelter people experiencing homelessness but can be used to isolate others.
Raymond Niaura, interim chairman of the Department of Epidemiology at New York University, said these programs are used inconsistently and have been poorly promoted to the public.
“No one has done this before and a lot of what’s happening is that people are making it up as they go along,” said Niaura. “We’ve just never been in a circumstance like this.”
Quintero still worries about bringing the virus home to her family and fears being in the same room with her grandmother. Quintero returns from work every day now, puts her clothes in a separate hamper and diligently washes her hands before she interacts with anyone.
The bills have been another constant worry. Quintero called the hospital and her insurance company and complained that she should not have to pay since she was seeking a test on her doctor’s orders. Neither budged, and the bills labeled “payment reminders” soon became “final notices.” She reluctantly agreed to pay $100 a month toward her balance — $50 to the hospital and $50 to the doctors.
“None of them wanted to work with me,” Quintero said. “I just have to give the first payment on each bill so they wouldn’t send me to collections.”
The Takeaway: If you suspect you have COVID-19 and need to isolate to protect vulnerable members of your household, call your local public health department. Most counties have isolation and quarantine programs, but these resources are not well known. You may be placed in a hotel, recreational vehicle or other type of housing while you wait out the infection period. You do not need to have a positive COVID test to qualify for these programs and can use these programs while you await your test result. But this is an area in which public health officials repeatedly offer clear guidance — 14 days of isolation — which most people find impossible to follow.
At this point in the pandemic, tests are more widely available and federal law is very clearly on your side: You should not be charged any cost sharing for a coronavirus test.
Be wary, though, if your doctor directs you to the emergency room for a COVID test, because any additional care you get there could come at a high price. Ask if there are any other testing sites available.
If you do find yourself with a big bill related to suspected COVID, push beyond a telephone call with your insurance company and file a formal appeal. If you feel comfortable, ask your employer’s human resources staff to argue on your behalf. Then, call the help line for your state insurance commissioner and file a separate appeal. Press insurers — and big companies that offer self-insured plans — to follow the spirit of the law, even if the letter of the law seems to let them off the hook.
Bill of the Month is a crowdsourced investigation by Kaiser Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
Since March, more than 4,100 COVID-related complaints regarding health care facilities have poured into the nation's network of federal and state OSHA offices.
This article was first published on Tuesday, June 30, 2020 in Kaiser Health News.
COVID-19 cases were climbing at Michigan's McLaren Flint hospital. So Roger Liddell, 64, who procured supplies for the hospital, asked for an N95 respirator for his own protection, since his work brought him into the same room as COVID-positive patients.
But the hospital denied his request, said Kelly Indish, president of the American Federation of State, County and Municipal Employees Local 875.
On March 30, Liddell posted on Facebook that he had worked the previous week in both the critical care unit and the ICU and had contracted the virus. "Pray for me God is still in control," he wrote. He died April 10.
The hospital's problems with personal protective equipment (PPE) were well documented. In mid-March, the state office of the Occupational Safety and Health Administration (OSHA) received five complaints, which described employees receiving "zero PPE." The cases were closed April 21, after the hospital presented paperwork saying problems had been resolved. There was no onsite inspection, and the hospital's written response was deemed sufficient to close the complaints, a local OSHA spokesperson confirmed.
The grief and fear gripping workers and their families reflect a far larger pattern. Since March, more than 4,100 COVID-related complaints regarding health care facilities have poured into the nation's network of federal and state OSHA offices, which are tasked with protecting workers from harm on the job.
A KHN investigation found that at least 35 health care workers died after OSHA received safety complaints about their workplaces. Yet by June 21, the agency had quietly closed almost all of those complaints, and none of them led to a citation or a fine.
The complaint logs, which have been made public, show thousands of desperate pleas from workers seeking better protective gear for their hospitals, medical offices and nursing homes.
The quick closure of complaints underscores the Trump administration's hands-off approach to oversight, said former OSHA official Deborah Berkowitz. Instead of cracking down, the agency simply sent letters reminding employers to follow Centers for Disease Control and Prevention guidelines, said Berkowitz, now a director at the National Employment Law Project.
"This is a travesty," she said.
A third of the health care-related COVID-19 complaints, about 1,300, remain open and about 275 fatality investigations are ongoing.
During a June 9 legislative hearing, Labor Secretary Eugene Scalia said OSHA had issued one coronavirus-related citation for violating federal standards. A Georgia nursing home was fined $3,900 for failing to report worker hospitalizations on time, OSHA'srecords show.
"We have a number of cases we are investigating," Scalia said at the Senate Finance Committee hearing. "If we find violations, we will certainly not hesitate to bring a case."
A March 16 complaint regarding Clara Maass Medical Center in Belleville, New Jersey, illustrates the life-or-death stakes for workers on the front lines. The complaint says workers were "not allowed to wear" masks in the hallway outside COVID-19 patients' rooms even though studies have since shown the highly contagious virus can spread throughout a health care facility. It also said workers "were not allowed adequate access" to PPE.
Nine days later, veteran Clara Maass registered nurse Barbara Birchenough texted her daughter: "The ICU nurses were making gowns out of garbage bags. … Dad is going to pick up large garbage bags for me just in case."
Kristin Carbone, the eldest of four, said her mother was not working in a COVID area but was upset that patients with suspicious symptoms were under her care.
In a text later that day, Birchenough admitted: "I have a cough and a headache … we were exposed to six patients who we are now testing for COVID 19. They all of a sudden got coughs and fevers."
"Please pray for all health care workers," the text went on. "We are running out of supplies."
By April 15, Birchenough, 65, had died of the virus. "They were not protecting their employees in my opinion," Carbone said. "It's beyond sad, but then I go to a different place where I'm infuriated."
OSHA records show six investigations into a fatality or cluster of worker hospitalizations at the hospital. A Labor Department spokesperson said the initial complaints about Clara Maass remain open and did not explain why they continue to appear on a "closed" case list.
Nestor Bautista, 62, who worked closely with Birchenough, died of COVID-19 the same day as she did, according to Nestor's sister, Cecilia Bautista. She said her brother, a nursing aide at Clara Maass for 24 years, was a quiet and devoted employee: "He was just work, work, work," she said.
Responding to allegations in the OSHA complaint, Clara Maass Medical Center spokesperson Stacie Newton said the virus has "presented unprecedented challenges."
"Although the source of the exposure has not been determined, several staff members" contracted the virus and "a few" have died, Newton said in an email. "Our staff has been in regular contact with OSHA, providing notifications and cooperating fully with all inquiries."
Other complaints have been filed with OSHA offices across the U.S.
Twenty-one closed complaints alleged that workers faced threats of retaliation for actions such as speaking up about the lack of PPE. At a Delaware hospital, workers said they were not allowed to wear N95 masks, which protected them better than surgical masks, "for fear of termination or retaliation." At an Atlanta hospital, workers said they were not provided proper PPE and were also threatened to be fired if they "raise[d] concerns about PPE when working with patients with Covid-19."
Of the 4,100-plus complaints that flooded OSHA offices, over two-thirds are now marked as "closed" in an OSHA database. Among them was a complaint that staffers handling dead bodies in a small room off the lobby of a Manhattan nursing home weren't given appropriate protective gear.
More than 100 of those cases were resolved within 10 days. One of those complaints said home health nurses in the Bronx were sent to treat COVID-19 patients without full protective gear. At a Massachusetts nursing home that housed COVID patients, staff members were asked to wash and reuse masks and disposable gloves, another complaint said. A complaint about an Ohio nursing home said workers were not required to wear protective equipment when caring for COVID patients. That complaint was closed three days after OSHA received it.
It remains unclear how OSHA resolved hundreds of the complaints. A Department of Labor spokesperson said in an email that some are closed based on an exchange of information between the employer and OSHA, and advised reporters to file Freedom of Information Act requests for details on others.
"The Department is committed to protecting America's workers during the pandemic," the Labor Department said in a statement. "OSHA has standards in place to protect employees, and employers who fail to take appropriate steps to protect their employees may be violating them."
The agency advised its inspectors on May 19 to place reports of fatalities and imminent danger as a top priority, with a special focus on health care settings. Since late March, OSHA has opened more than 250 investigations into fatalities at health care facilities, government records show. Most of those cases are ongoing.
According to the mid-March complaints against McLaren Flint, workers did not receive needed N95 masks and "are not allowed to bring them from home." They also said patients with COVID-19 were kept throughout the hospital.
Filing complaints, though, did little for Liddell, or for his colleague, Patrick Cain, 52. After the complaints were filed, Cain, a registered nurse, was treating people still awaiting the results of COVID-19 diagnostic tests — potentially positive patients ― without an N95 respirator. He was also working outside a room where potential COVID-19 patients were undergoing treatments that research supported by the University of Nebraska has since shown can spread the virus widely in the air.
At the time, there was a debate over whether supply chain breakdowns of PPE and weakened CDC guidelineson protective gear were putting workers at risk.
Cain felt vulnerable working outside of rooms where COVID patients were undergoing infection-spreading treatments, he wrote in a text to Indish on March 26.
"McLaren screwed us," he wrote.
He fell ill in mid-March and died April 4.
McLaren has since revised its face-covering policy to provide N95s or controlled air-purifying respirators (CAPRs) to workers on the COVID floor, union members said.
A spokesperson for the McLaren Health Care system said the OSHA complaints are "unsubstantiated" and that its protocols have consistently followed government guidelines. "We have always provided appropriate PPE and staff training that adheres to the evolving federal, state, and local PPE guidelines," Brian Brown said in an email.
Separate from the closed complaints, OSHA investigations into Liddell and Cain's deaths are ongoing, according to a spokesperson for the state's Department of Labor and Economic Opportunity.
Nurses at Kaiser Permanente Fresno Medical Center also said the complaints they aired before a nurse's death have not been resolved. (KHN is not affiliated with Kaiser Permanente.)
On March 18, nurses filed an initial complaint. They told OSHA they were given surgical masks, instead of N95s. Less than a week later, other complaints said staffers were forced to reuse those surgical masks and evaluate patients for COVID without wearing an N95 respirator.
Several nurses who cared for one patient who wasn't initially suspected of having COVID-19 in mid-March wore no protective gear, according to Amy Arlund, a Kaiser Fresno nurse and board member of the National Nurses Organizing Committee board of directors. Sandra Oldfield, a 53-year-old RN, was among them.
Arlund said Oldfield had filed an internal complaint with management about inadequate PPE around that time. Arlund said the patient's illness was difficult to pin down, so dozens of workers were exposed to him and 10 came down with COVID-19, including Oldfield.
Lori Rodriguez, Oldfield's sister, said Sandra was upset that the patient she cared for who ended up testing positive for COVID-19 hadn't been screened earlier.
"I don't want to see anyone else lose their life like my sister did," she said. "It's just not right."
Wade Nogy, senior vice president and area manager of Kaiser Permanente Fresno, confirmed that Oldfield had exposure to a patient before COVID-19 was suspected. He said Kaiser Permanente "has years of experience managing highly infectious diseases, and we are safely treating patients who have been infected with this virus."
Kaiser Permanente spokesperson Marc Brown said KP "responded to these complaints with information, documents and interviews that demonstrated we are in compliance with OSHA regulations to protect our employees." He said the health system provides nurses and other staff "with the appropriate protective equipment."
California OSHA officials said the initial complaints were accurate and the hospital was not in compliance with a state law requiring workers treating COVID patients to have respirators. However, the officials said the requirement had been waived due to global shortages.
Kaiser Fresno is now in compliance, Cal/OSHA said in a statement, but the agency has ongoing investigations at the facility.
Arlund said tension around protective gear remains high at the hospital. On each shift, she said, nurses must justify their need for a respirator, face shield or hair cap. She expressed surprise that the OSHA complaints were considered "closed."
"I'm very concerned to hear they are closing cases when I know they haven't reached out to front-line nurses," Arlund said. "We do not consider any of them closed."
Prosecutors allege that Jorge A. Perez, 60, and nine others exploited federal regulations that allow some rural hospitals to charge substantially higher rates for laboratory testing.
This article was first published on Tuesday, June 30, 2020 in Kaiser Health News.
A Miami entrepreneur who led a rural hospital empire was charged in an indictmentunsealed Monday in what federal prosecutors called a $1.4 billion fraudulent lab-billing scheme.
In the indictment, prosecutors said Jorge A. Perez, 60, and nine others exploited federal regulations that allow some rural hospitals to charge substantially higher rates for laboratory testing than other providers. The indictment, filed in U.S. District Court in Jacksonville, Florida, alleges Perez and the other defendants sought out struggling rural hospitals and then contracted with outside labs, in far-off cities and states, to process blood and urine tests for people who never set foot in the hospitals. Insurers were billed using the higher rates allowed for the rural hospitals.
Perez and the other defendants took in $400 million since 2015, according to the indictment. Many of the hospitals run or managed by Perez's Empower companies have since failed as they ran out of money when insurers refused to pay for the suspect billing. Half of the nation's rural hospital bankruptcies in 2019 were affiliated with his empire.
"This was allegedly a massive, multi-state scheme to use small, rural hospitals as a hub for millions of dollars in fraudulent billings of private insurers," said Assistant Attorney General Brian Benczkowski of the Justice Department's Criminal Division in a statement.
Attempts to reach Perez for comment Monday evening were unsuccessful. But last year when Perez spoke to KHN, he said he was losing sleep over the possibility he could go to jail after propping up struggling rural hospitals.
"I wanted to see if I could save these rural hospitals in America," Perez said. "I'm that kind of person."
Pam Green, a former night charge nurse at the now-shuttered Horton Community Hospital in Horton, Kansas (population under 1,700), said she hopes Perez and his colleagues receive long prison sentences.
"He just devastated so many people, not just in Kansas, but in Oklahoma and all the other places where he had hospitals," said Green, 58, of nearby Muscotah, Kansas. "I went months and months without pay, without health insurance. He robbed the community."
Green recalled that money was so tight under Perez's management of her former hospital that the electricity was shut off at least twice and staffers had to bring in their own supplies. She said she is owed about $12,000 in back pay, as well as money for uncovered dental expenses and a workplace injury that would have been covered had employees' insurance or workers' compensation premiums been paid.
A KHN investigation published in August 2019 detailed the rise and fall of Perez's rural hospitals. At the height of his operation, Perez and his Miami-based management company, EmpowerHMS, helped oversee a rural empire encompassing 18 hospitals across eight states. Perez owned or co-owned 11 of those hospitals and was CEO of the companies that provided their management and billing services.
Perez styled himself a savior of rural hospitals, swooping into small towns with promises to save their struggling facilities using his "secret sauce" of financial ventures. Multiple employees told KHN they had no idea what happened to the money their hospitals earned after Perez and his associates took control, since the facilities seemed perpetually starved for cash.
Over the past two years, amid mounting legal challenges and concerns about the lab-billing operation, insurers cut off funding and his empire crumbled. Overall, 12 of the hospitals have entered bankruptcy and eight have closed. The staggering collapse left hundreds of employees without jobs and small towns across the Midwest and South without lifesaving medical care.
The four rural hospitals named in the indictment are Campbellton-Graceville Hospital in Graceville, Florida; Regional General Hospital of Williston, Florida; Chestatee Regional Hospital in Dahlonega, Georgia; and Putnam County Memorial Hospital in Unionville, Missouri.
The indictment marks the third major case federal prosecutors have filed alleging billing fraud at Perez-affiliated hospitals. In October, David Byrns pleaded guilty to a federal charge of conspiracy to commit health care fraud involving a Missouri hospital he managed with Perez. A Missouri Auditor General report previously found that the 15-bed hospital, Putnam County Memorial in Unionville, had received about $90 million in questionable insurance payments in less than a year.
In July 2019, Kyle Marcotte, owner of a Jacksonville Beach, Florida, addiction treatment center, pleaded guilty for his part in a $57 million lab-billing scheme involving two Perez-affiliated hospitals, Campbellton-Graceville and Regional General Hospital. Marcotte admitted cooperating with unnamed hospital managers to provide urine samples from his patients for lab testing that was billed through the rural hospitals and, in exchange, getting a cut of the proceeds.
Perez, on his own and through Empower-affiliated companies, in 2016 and 2017 purchased South Florida properties that totaled more than $3.7 million, including three condos on Key Largo, according to property records. He told KHN last year that the Florida properties were bought with earnings from unrelated software companies but declined to give details. He and his brother Ricardo Perez, if convicted, must forfeit over $46 million, according to the indictment, as well as two Key Largo condos and other properties.
Another defendant, Aaron Durall, if convicted, could lose $184.4 million and a six-bedroom, 6,500-square-foot home in the affluent Parkland district north of Fort Lauderdale, Florida.
Perez-affiliated hospitals also face ongoing lawsuits in Missouri and other states filed by dozens of insurers asking for hundreds of millions in restitution for allegedly fraudulent billings. In those court documents, Perez repeatedly has denied wrongdoing. He told KHN last year that his lab-billing setup was "done according to Medicare and state guidelines."
For former employees of EmpowerHMS and members of the affected communities, the indictment represents vindication. As the company foundered, hundreds of employees worked without pay in vain efforts to keep their hospitals afloat. They would discover later that, along with the missing paychecks, their insurance premiums had not been paid and their medical policies had been discontinued. In the June 2019 interview, Perez acknowledged that, as finances withered, he stopped paying employee payroll taxes.
"It's nice to think he might be held accountable," said Melva Price Lilley, a former X-ray technician at Washington County Hospital in Plymouth, North Carolina, which has reopened with new owners under a new name. "At least there's a chance that he might have to suffer some consequences. That gives me some hope."
Lilley, 56, said she and other employees could not retrieve their retirement savings from the bankrupt hospital until about three weeks ago. She has been trying to pay off about $68,000 in medical bills from a back surgery she needed for a workplace injury that wasn't covered by workers' compensation insurance premiums that went unpaid for hospital employees. She remains unable to work full time.
I-70 Community Hospital, an Empower facility in Sweet Springs, Missouri, has remained closed since February 2019. Tara Brewer, head of the Sweet Springs Chamber of Commerce and the local health department, said she was almost shocked to hear that Perez had gotten indicted after months of wondering if anything would happen.
While she hopes these charges bring closure to her community, she said, the charges do little to fix the closed hospital doors for a county that has had one of the highest per capita rates of coronavirus cases in Missouri.
"What he did to us will linger on for a long time," Brewer said.
Trailing Democratic challenger Mark Kelly in one of the country’s most hotly contested Senate races, Arizona Sen. Martha McSally is seeking to tie herself to an issue with across-the-aisle appeal: insurance protections for people with preexisting health conditions.
“Of course I will always protect those with preexisting conditions. Always,” the Republican said in a TV ad released June 22.
The ad comes in response to criticisms by Kelly, who has highlighted McSally’s votes to undo the Affordable Care Act. That, he argued, would leave Americans with medical conditions vulnerable to higher-priced insurance.
The Arizona Senate race has attracted national attention and is considered a toss-up, though Kelly is leading in many polls. McSally’s attempt to present herself as a supporter of protecting people with preexisting conditions — a major component of the 2010 health law — is part of a larger pattern in which vulnerable Republican incumbents stake out positions advocating for this protection while also maintaining the GOP’s strong stance against the ACA.
McSally, who was appointed by the governor to take over John McCain’s Senate seat in 2019, used similar messaging in her failed 2018 bid for the state’s other Senate position. And President Donald Trump echoed the declaration at a June 23 rally in Phoenix, saying McSally — along with the rest of the Republican Party — “will always protect people with preexisting conditions.”
With that in mind, we decided to take a closer look. We contacted McSally’s campaign, which cited her support of a different piece of legislation, the Protect Act. But independent experts told us that legislation doesn’t satisfy the standard she sets out.
Past and Present
Only one national law makes sure people with preexisting medical conditions don’t face discrimination or higher prices from insurers. It’s the Affordable Care Act.
Both as a member of the House of Representatives and as a senator, McSally has supported efforts to undo the health law — voting in 2015 to repeal it and in 2017 to replace it with the Republican-backed American Health Care Act, which would have permitted insurers to charge higher premiums for people with complicated medical histories.
“Anyone who voted for that bill was voting to take away the ACA’s preexisting condition protections,” said Jonathan Oberlander, a health policy professor at the University of North Carolina-Chapel Hill. “Sen. McSally is trying to erase history for electoral purposes.”
Especially as COVID-19 cases climb, health care — and, in particular, the ACA — has emerged as a flashpoint in the Arizona election, said Dr. Daniel Derksen, a professor of public health, medicine and nursing at the University of Arizona.
“Martha McSally has in her actions, in her votes, been pretty consistent about cutting back benefits and trying to repeal the ACA without any clear plan in mind that would protect people who gained insurance through the ACA,” Derksen added. “Her words on preexisting condition protections don’t align with any votes I’ve seen.”
McSally’s campaign argued that the ACA is just one strategy, and a flawed one at that. Dylan Lefler, her campaign manager, instead pointed to her support of the Republican-backed Protect Act as evidence to back up her promise. Specifically, it ostensibly bans insurance plans from “impos[ing] any preexisting condition exclusion with respect to … coverage,” per the bill text.
The problem, though, is that simply banning that exclusion isn’t enough, because the law also has to make sure the health insurance plans that cover preexisting conditions remain affordable. The bill, sponsored by Sen. Thom Tillis (R-N.C.), does nothing to provide subsidies or cost-sharing mechanisms — meaning people both with and without preexisting conditions wouldn’t necessarily be able to afford those plans. Without that framework, the act remains a “meaningless promise,” argued Linda Blumberg, a fellow at the Urban Institute, a social policy think tank.
And it has other holes: for instance, permitting insurers to charge women more than men.
“No six-page bill is ever the way of achieving something,” said Thomas Miller, a scholar at the American Enterprise Institute. “This is a check-the-box effort to try to say, ‘We’re [moving] in that direction.’”
It’s not just legislation. There’s also Texas v. Azar, a pending case in which a group of Republican attorneys general are arguing the Supreme Court should strike the entire health law, including its preexisting condition protections. The Trump administration has sided with the Republican states.
McSally has consistently declined to comment on the lawsuit, saying she doesn’t want to weigh in on “a judicial proceeding.” In reporting this fact check, we asked where she stood on the case. The campaign didn’t specifically answer but pointed to her general disapproval of the ACA. Meanwhile, Senate Democrats have called on the administration to reverse its stance.
That context makes McSally’s silence especially relevant, said Sabrina Corlette, a research professor at Georgetown University.
“When given the opportunity, she has declined to oppose this lawsuit, which would essentially eliminate the protections that exist,” Corlette said.
So — big picture? McSally’s record in Washington hasn’t been one of preserving or building on preexisting condition protections.
Our Ruling
In her new TV ad, McSally claims she will “always protect those with preexisting conditions.”
But nothing in her voting record, which tracks closely with the Republican repeal-and-replace philosophy, supports this claim. And she has continually declined opportunities to oppose a pending legal threat to the ACA, including its provisions related to preexisting conditions, by a group of GOP governors and supported by the Trump administration.
Meanwhile, the legislation her campaign cited to justify her stance falls short in terms of meaningfully protecting Americans with preexisting medical conditions.
McSally has not in the past or present taken actions that back up her statement. We rate it False.
Fargis runs Summit Hills — a health and retirement community in Spartanburg, South Carolina, that offers skilled nursing, activities and communal meals for its residents, most of whom are over 60, the highest-risk category for coronavirus complications. In South Carolina, more than a hundred new cases were emerging daily. So she took precautions: no visitors, hand sanitizer everywhere and regular reminders for residents about the importance of social distancing.
For a time, it worked. Many similar facilities were hit hard by the virus, but Summit Hills remained COVID-free. Summit Hills' first cases didn't emerge until mid-June. Three residents and four employees have now tested positive and are being quarantined. For months, though, Fargis was able to protect her residents.
Still, even under the best circumstances, she couldn't prevent one thing. By mid-May, two residents had become convinced that the COVID-19 death count — which has surpassed125,000 people in the U.S. — was a talking point manufactured by Democrats. Some people may be dying, they said, but it wasn't actually that severe. They didn't think her precautions were necessary.
"I don't know how to respond, to tell you the truth," Fargis said. "If someone has that kind of mindset, what kind of conversation do you have" to convince them of the pandemic's severity and the need for strict precautions?
Since the start of the pandemic, the public has been barraged by conflicting messages in part because the country is dealing with a new and still poorly understood virus and in part because politicians and scientists deliver conflicting advice. But rumors, misinformation and outright falsehoods — some intentionally propagated — have also flourished in that cauldron of confusion.
As the nation reopens for business and retreats from protective stay-at-home orders, those widely circulating lies could prove deadly.
NewsGuard, a startup by two former journalists that vets the internet for misinformation, has identified 217 websites in Europe and the United States that publish "materially false" information about COVID-19. The volume is so great that NewsGuard, which was launched to check political fabrications, has pivoted to full-time COVID-19 fact-checking.
The misinformation includes the "Plandemic" video, Facebook posts claiming 5G cell networks cause the virus and articles suggesting it can be cured with garlic or using a combination of hot water with baking soda and lemon.
Health scares always spawn scurrilous stories. But with COVID-19, "there's lots of opportunity for misinformation," said Dhavan Shah, a professor of mass communication at the University of Wisconsin-Madison.
That is particularly true in the United States, where the coronavirus has somehow morphed into a right-versus-left political issue — and Americans increasingly reject information that doesn't match their leanings.
Research shows people who support the Trump administration and rely on right-leaning news organizations are more likely to believe the virus has been exaggerated.In general, Republicans are more likely, according to recent polling, than Democrats to think that COVID-19 was never a threat and that the worst is over. That possibly contributed to the push for early reopening in some states that had not met the requirements recommended by the Centers for Disease Control and Prevention for doing so. In many of them, daily case counts are now spiking. And Republicans are less likely than Democrats to don protective masks, which are believed to reduce the spread of the virus. (President Donald Trump famously has refused to wear a mask in public.)
Groups like anti-vaxxers, conspiracy theorists and immigration opponents have also used the virus to push their own misinformation, per a report from Data & Society, a research institute in New York.
"It's become a political football now," said Steven Brill, a co-CEO of NewsGuard. "That tends to get the misinformation and disinformation amplified. People on one side or the other tend to want to amplify what endorses or strengthens their position."
Misinformation Grows In A Vacuum
Federal health officials from agencies such as the CDC and the Food and Drug Administration usually are tasked with providing the public with understandable, scientifically supported guidance. But the advice from experts like Dr. Anthony Fauci, who heads the National Institute of Allergy and Infectious Diseases, has consistently been undermined by Trump, who instead touts unproven treatments and frequently challenges the severity of the virus.
In fact, political figures like Trump have held outsize influence in shaping public understanding. "The news feed abhors a vacuum," said Jeff Hancock, a professor of communication at Stanford University who has studied the implications of COVID misinformation. "Since the expertise of the CDC and others have been called into question … it exacerbates the problem."
Experts' initial confusion about how to respond to a new virus has also allowed for suspicion. When the coronavirus arrived in the United States, the prevailing thought was that asymptomatic patients couldn't spread it and that people needn't wear face coverings. Subsequent studies reversed those judgments.
All that helps explain why falsehoods took hold. Researchers from the University of Oxford's Reuters Institute for the Study of Journalism reviewed 225 pieces of online misinformation about COVID-19. Misinformation spread by political figures and celebrities made up only 20% of the sample but accounted for 69% of engagement.
Independent groups, including NewsGuard and Hancock's Stanford Social Media Lab, have launched projects meant to combat misinformation — teaching older people through peer-to-peer tutoring to navigate digital content or launching websites that point people toward more credible data and analysis. But these efforts, usually difficult, are almost impossible now in the age of social distancing.
The "volume and velocity" of social media spread means claims spread farther, faster, Shah said.
At Summit Hills, the politicization of COVID-19 has "without a doubt" made it harder for Fargis, its executive director, to convince her residents — many of whom would typically look to the federal government for credible information — of the pandemic's severity.
Some cons deliberately target seniors, offering more than misinformation: Bad actors pretended to have access to their victims' stimulus checks, asking for bank account and Social Security information. Others sell fake protective equipment.
At Hebrew SeniorLife, a hospital and living center in Massachusetts, which operates rehab centers and senior-living facilities around the Boston area, misinformation and online scams — such as fake fundraisers on Facebook for first responders — are serious concerns, said Rachel Lerner, the organization's general counsel.
Older Americans experience a "perfect storm," Hancock said. "They're more susceptible to the virus. They are targets of misinformation and online scams at a much higher rate than regular folks are."
When South Carolina began opening up, Fargis decided to see if the numbers of new COVID-19 cases declined significantly before lifting precautions. Now, with the virus in her facility, she has no intention of letting up social distancing rules and other prevention strategies.
And since May, at least one of her residents has since come around to understanding the pandemic's severity. But another, she said, still emails her arguing that the virus has been overblown or that social distancing does not work and suggesting that unproven medicines — like hydroxychloroquine or beta-glucans — can treat or prevent the illness.
"We'd all be far better off if we kept those nonsensical remarks out of the news," she said. "The more misinformation we have, the more likely we are going to have lives at stake."
On "Treatment Tuesdays," as she has dubbed them, Katherine O'Brien makes the trek into Chicago by commuter rail from her home in the suburb of La Grange, Illinois, for chemotherapy.
This article was first published on Thursday, June 25, 2020 in Kaiser Health News.
Three Tuesdays each month, Katherine O’Brien straps on her face mask and journeys about half an hour by Metra rail to Northwestern University’s Lurie Cancer Center.
What were once packed train cars rolling into Chicago are now eerily empty, as those usually commuting to towering skyscrapers weather the pandemic from home. But for O’Brien, the excursion is mandatory. She’s one of millions of Americans battling cancer and depends on chemotherapy to treat the breast cancer that has spread to her bones and liver.
“I was nervous at first about having to go downtown for my treatment,” said O’Brien, who lives in a suburb, La Grange, and worries about contracting the coronavirus. “Family and friends have offered to drive me, but I want to minimize everyone’s exposure.”
While her treatment hasn’t changed since the novel coronavirus spread across the United States, the 54-year-old is at high risk of severe complications should she become infected. Those risks haven’t declined significantly for her despite the Illinois governor’s loosening of COVID-related restrictions.
She’s not alone in fearing the deadly combination of COVID-19 and cancer. One study, which reviewed records of more than 1,000 adult cancer patients who had tested positive for COVID-19, found that 13% had died. That’s compared with the overall U.S. mortality rate of 5.9%, according to Johns Hopkins.
Beyond the concern of cancer patients — with their already depleted immune systems — catching the virus, many doctors worry about people delaying their scans and checkups and missing time-sensitive diagnoses. A KFF poll found that nearly half of Americans had skipped or postponed medical care because of the outbreak. Cancer patients seeking care face an array of obstacles as states reopen, such as heavily restricted in-hospital appointments and new clinical trials on hold. (KHN is an editorially independent program of KFF, the Kaiser Family Foundation.)
“Cancer doesn’t care that there’s a coronavirus pandemic taking place,” said Dr. Robert Figlin, chair in hematology-oncology at Cedars-Sinai in Los Angeles. “We don’t want people who have abnormalities to delay having them evaluated.”
In late March, Megan-Claire Chase, 43, of Dunwoody, Georgia, got laid off from her job as a project manager for a staffing company, losing the health care benefits that came with it. Her chief concern was paying for a diagnostic mammogram and MRI, still on the calendar for two days before her benefits were to end. Currently in remission from stage 2A breast cancer, Chase schedules scans for every six months well in advance at Breast Care Specialists in Atlanta.
“When I got there, it was really unsettling. You almost feel like a leper,” said Chase, noting the socially distanced waiting room and heavily sanitized clipboards. Already hyper-careful since her days of chemotherapy, Chase carries her own pens in her purse, along with gloves and extra masks.
Cancer centers across the country are taking extra precautions. At Northwestern, patients are funneled through a single entryway, where masks are required, and are met by a security guard and a temperature check before signing in with receptionists seated behind plastic shields, O’Brien said. No visitors or accompanying family members are allowed inside the building, and the cafeteria and waiting rooms are devoid of unnecessary germ-spreading agents — no magazines or coffee machine in sight. The cubicle where she receives infusions of Abraxane used to seat four patients; now, only two sit in the space.
Where they can, many doctors are turning to telemedicine to limit cancer patients’ trips to the hospital. In Salt Lake City, Dr. Mark Lewis, director of gastrointestinal oncology for Intermountain Healthcare, a 23-hospital system serving Utah and surrounding states, says about half his patient visits are now virtual. He’s also making some patients’ treatments less intense and less frequent. As at Northwestern, patients must arrive at the hospital solo for appointments unless assistance is physically necessary. It’s a significant shift for Lewis, who’s had up to 30 family members in his office for appointments alongside his patients for mental support.
“We are writing the rules as we go, trying to keep patients’ immune systems up and the cancer at bay,” said Lewis. Still, he’s concerned about a later spike in cancer mortality due to the coronavirus pandemic. The coronavirus aside, the National Cancer Institute estimates over 600,000 Americans will die of cancer this year.
New clinical trials have also largely ground to a halt in this new era, when traveling long distances for treatment is less of an option. Linnea Olson, who lives in Amesbury, Massachusetts, and has stage 4 lung cancer, worries there may be far fewer treatment options for her, as trials have been her “lifeline.”
About four months ago, Olson, 60, enrolled in her fourth phase 1 clinical trial at Massachusetts General Hospital’s Termeer Center for Targeted Therapies. The treatment has been accompanied by intense side effects, such as a sore mouth and throat from mucositis, also a sign of COVID-19. Before a recent infusion, nurses with plastic shields ferried Olson up a back entryway for a COVID test. It was negative.
The intensity of her treatment, coupled with the extreme social distancing measures, has left Olson, who lives alone, feeling depressed and unsure if she should continue the trial.
“It’s too much all at once — the isolation and the difficult side effects,” Olson said.
Rudy Fischmann, a brain cancer patient and former true crime TV producer, battles balance issues that started after his first set of surgeries two years ago. Daily walks and physical therapy are part of his treatment regimen. Yet strolls around his Knoxville, Tennessee, neighborhood are already becoming more stressful as the state begins to open up.
“It’s getting harder and harder, with more and more people outside every day,” said Fischmann, 48. “I don’t enjoy walking laps around my kitchen, so I’m finding myself having to change my routes almost daily.”
A father of two young children who are now home round-the-clock, Fischmann finds all the family time draining his limited energy. He also fears what germs they will bring back from school come fall.
“The thought of, if I were to contract the virus, would I get a different standard of care?” he said. “I’m used to staying home and not doing that much, but it’s more nerve-wracking now.”