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College Tuition Sparked a Mental Health Crisis

Then the Hefty Hospital Bill Arrived!

Despite a lifelong struggle with panic attacks, Divya Singh made a brave move across the world last fall from her home in Mumbai, India. She enrolled at Hofstra University in Hempstead, New York, to study physics and explore an interest in standup comedy in Manhattan.

Arriving in the midst of the COVID-19 pandemic and isolated in her dorm room, Singh’s anxiety ballooned when her family had trouble coming up with the money for a $16,000 tuition installment. Hofstra warned her she would have to vacate the dorm after the term ended if she was not paid up. At one point, she ran into obstacles transferring money onto her campus meal card.

“I’m a literally broke college student that didn’t have money for food,” she recalled. “At that moment of panic, I didn’t want to do anything or leave my bed.”

In late October, she called the campus counseling center hotline and met with a psychologist. “All I wanted was someone to listen to me and validate the fact that I wasn’t going crazy,” she said.

Instead, when she mentioned suicidal thoughts, the psychologist insisted on a psychiatric evaluation. Singh was taken by ambulance to Long Island Jewish Medical Center in New Hyde Park, New York, and kept for a week on a psychiatric ward at nearby Zucker Hillside Hospital. Both are part of the Northwell Health system.

The experience — lots of time alone and a few therapy sessions — was of minimal benefit psychologically, she said. Singh emerged facing the same tuition debt as before.

And then another bill came.

The Patient: Divya Singh, a 20-year-old student at Hofstra University.

Medical Service: Seven-day inpatient psychiatric stay at Zucker Hillside Hospital in Glen Oaks, New York.

Service Provider: Northwell Health, a large nonprofit hospital system in New York City and Long Island.

Total Bill: Northwell charged $50,282, which Singh’s insurer, Aetna, reduced to $17,066 under its contract with Northwell. The plan required Singh to pay $3,413.20 of that.

What Gives: Singh had purchased her Aetna insurance plan through Hofstra, paying $1,107 for the fall term. Aetna markets the plan specifically for students. Under its terms, students can be on the hook for up to $7,350 of the costs of medical care during a year, according to plan documents. Singh’s Northwell bill of around $3,413 is the plan’s requirement that she pay for 20% of the costs of her hospital stay.

Although such coinsurance requirements are common in American health plans, they can be financially overwhelming for students with no income and families whose finances are already under the extreme stress of high tuition. Singh’s Hofstra bill for the academic year, including room and board and ancillary fees, totaled $68,275.

As a result, Singh found herself beset by a double whammy of bills from two of the costliest kinds of institutions in America — colleges and hospitals — both with prices that inexorably rise faster than inflation.

Divya Singh, a student at Hofstra University in Hempstead, New York, sought counseling help after feeling panicked when she had trouble paying a big tuition bill. A weeklong stay in a psychiatric hospital followedalong with a $3,413 bill. (Jackie Molloy for KHN)

For hospitals, there is supposed to be a relief valve. The Internal Revenue Service requires all nonprofit hospitals to have a financial assistance policy that lowers or eliminates bills for people without the financial resources to pay them. Such financial assistance — commonly known as charity care — is a condition for hospitals to maintain their tax-exempt status, shielding them from having to pay property taxes on often expansive campuses.

Northwell’s financial assistance policy limits the hospital from charging more than $150 for individuals who earn $12,880 a year or less. It offers discounts on a sliding scale for individuals earning up to $64,400 a year, although people with savings or other “available assets” above $10,000 might get less or not qualify.

The IRS requires hospitals to “widely publicize” the availability of financial assistance, inform all patients about how they can obtain it and include “a conspicuous written notice” on billing statements.

While the bill Northwell sent Singh includes a reference to “financial difficulties” and a phone number to call, it did not explicitly state that the hospital might reduce or waive the bill. Instead, the letter obliquely said “we can assist you in making budget payment arrangements” — a phrase that conjures installment payments rather than debt relief.

Resolution: In a written statement, Northwell said that although “all eligible patients are offered generous financial payment options … it is not required that providers list the options on the bill.” Northwell stated: “If a patient calls the number provided and expresses financial hardship, the patient is assisted with a financial need application.” However, Northwell lamented, “unfortunately, many patients do not call.”

Indeed, a KHN investigation in 2019 found that, nationwide, 45% of nonprofit hospital organizations were routinely sending medical bills to patients whose incomes were low enough to qualify for charity care. Those bills, which totaled $2.7 billion, were most likely an undercount since they included only the debt hospitals had given up trying to collect.

Singh said the worker who took down her insurance information during her hospital stay never explained that Northwell might reduce her portion of the charge. She said she didn’t realize that was a possibility from the language in the bill they sent.

Northwell said in a statement that after KHN contacted it about Singh’s case, Northwell dispatched a caseworker to contact her. Singh said the caseworker helped Singh enroll in Medicaid, the state-federal health insurance program for low-income people. Foreign students are not generally eligible for Medicaid, but in New York they can get coverage for emergency services. With the addition of Medicaid’s coverage, Singh should end up paying nothing if the stay is retroactively approved, Northwell said.

At the same time the caseworker was helping Singh, Singh received a “final reminder” letter from Northwell about her bill. That letter also mentioned Northwell’s financial assistance, but only within the context of people who completely lack health insurance.

“Send payment or contact us within 21 days to avoid further collection activity,” the letter said.

The Takeaway: Despite stricter requirements from the Affordable Care Act and the IRS to make nonprofit hospitals proactively educate patients about the various forms of financial relief they offer, the onus still remains on patients. If you have trouble paying a bill, call the hospital and ask for a copy of its financial assistance policy and the application to request your bill be discounted or excused.

Be aware that hospitals generally require proof of your financial circumstances such as pay stubs or unemployment checks. Even if you have health insurance that covers much of your medical bill, you may still be eligible to have your bill lowered or get on a government insurance program like Medicaid.

You can also find documentation online: All nonprofit hospitals are required to post financial assistance policies on their websites. They must provide summaries written in plain language and versions translated into foreign languages spoken by significant portions of their communities. Be aware that financial assistance is distinct from paying your full debt off in installments, which is what hospitals sometimes first propose.

Although the IRS rules don’t govern for-profit hospitals, many of those also offer concessions for people with proven financial hardship. The criteria and generosity of charity care vary among hospitals, but many give breaks to families with middle-class incomes: Northwell’s policy, for instance, extends to families of four earning $132,500 a year.

Singh’s family has paid off her fall tuition and half of her spring tuition so far. She still owes $16,565.

Singh said the back and forth over her hospital bill continues to cause anxiety. “The treatment I got in the hospital, after I’ve gotten out, it hasn’t helped,” she said. “I have nightmares about that place.” The biggest benefit of her week there, she said, was bonding with the other patients “because they were also miserable with the way they were being treated.”

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills.
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.

Califiornia’s Deadliest Spring In 20 Years

The first five months of the COVID-19 pandemic in California rank among the deadliest in state history, deadlier than any other consecutive five-month period in at least 20 years.

And the grim milestone encompasses thousands of “excess” deaths not accounted for in the state’s official COVID death tally: a loss of life concentrated among Blacks, Asians and Latinos, afflicting people who experts say likely didn’t get preventive medical care amid the far-reaching shutdowns or who were wrongly excluded from the coronavirus death count.

About 125,000 Californians died from March through July, up by 14,200, or 13%, from the average for the same five months during the prior three years, according to a review of data from the state Department of Public Health.

By the end of July, California had logged about 9,200 deaths officially attributed to COVID-19 in county death records. That left about 5,000 “excess” deaths for those months — meaning deaths above the norm not attributed to COVID-19. Deaths tend to increase from year to year as the population grows, but typically not by that much.

A closer look at California’s excess deaths during the period reveal a disturbing racial and ethnic variance: All the excess deaths not officially linked to COVID infection were concentrated in minority communities. Latinos make up the vast majority, accounting for 3,350 of those excess deaths, followed by Asians (1,150), Blacks (860) and other Californians of color (350).

Map by Phillip Reese for California Healthline Source: California Department of Public Health

The overall number of excess deaths across all races and ethnicities was ultimately tempered because, compared with the three prior years, there were actually 383 fewer deaths among white Californians than would be expected in the absence of COVID-19. In addition, California Healthline adjusted the overall numbers to reflect more than 320 COVID deaths that could not be categorized by race or ethnicity because that information was missing from state records.

Several epidemiologists interviewed said they believe a sizable portion of the excess deaths among people of color did, in fact, stem from COVID infections but went undetected for a variety of reasons. Among them: a shortage of coronavirus tests in the early months of the pandemic; an uneven strategy for how and when to administer those tests, which persists; and inadequate access to health care providers in many low-income and immigrant communities.

Dr. Kirsten Bibbins-Domingo, chair of the Department of Epidemiology and Biostatistics at the University of California-San Francisco, is among those who suspect the excess deaths reflect a COVID undercount in minority communities. She noted that several chronic health conditions that disproportionately affect Blacks and Latinos — including diabetes, high blood pressure and heart disease — also place them at higher risk for severe complications from COVID-19.

In addition, Bibbins-Domingo said, the prolonged shutdown of medical offices in the early months of the pandemic — and with them non-urgent surgeries and routine medical care — likely accelerated death among people with those chronic conditions.

“Shutdowns always come at a cost,” she said. “It is our most marginalized communities that experience the cost of a shutdown.”

According to state Department of Public Health data, deaths in California attributed to diabetes rose 12% from March through July when compared with the average for the same period over the past three years. In addition, deaths attributed to Alzheimer’s disease rose 11%.

“Dementia is also a disease where we have racial, ethnic minorities already at greater risk,” said Andrea Polonijo, a medical sociologist at the University of California-Riverside. “Now that we have the pandemic, they’re more socially isolated. Social isolation we know can cause deeper cognitive decline.”

It’s hard to determine whether a death is due to COVID-19 if the victim never sought medical care, said Jeffrey Reynoso, executive director of the nonprofit Latino Coalition for a Healthy California. Latinos in California are less likely to have health insurance, he said. They may face language barriers if their medical provider — or contact tracer — does not speak Spanish. Latino immigrants working in the U.S. without authorization may hesitate to visit the doctor.

“Immigration is definitely a driver in creating a fear and a mistrust of systems, and that includes our health care system,” Reynoso said.

Polonijo said the fact that Latinos make up the bulk of the excess deaths correlates with their dominant role in farming, meat processing, manufacturing and food service, jobs all deemed essential during the pandemic.

“This population is also more likely to live in more crowded conditions,” she said. “So not only are they exposed at work, but they are bringing disease home and with it the possibility of spreading it to their family, bringing it to the community.”

Bibbins-Domingo noted that, while a major portion of COVID deaths overall have occurred among seniors and nursing home residents, a disproportionate number of the state’s excess deaths are of working-age adults.

“The excess deaths that we’re seeing in communities of color and in low-income communities are deaths that are occurring at younger ages,” she said. “These are deaths that are occurring in these ages from 20 to 60, generally speaking — the ages when people would be out working.”

Kathy Ko Chin, president of the Oakland-based Asian & Pacific Islander American Health Forum, said Asian Americans also tend to be overrepresented in essential worker occupations, noting that a large proportion of the state’s nurses are Filipino. In addition, she said, government officials have not done enough to translate COVID educational materials into the many languages spoken by California’s Asian Americans. The Trump administration’s rhetoric on immigration during the past four years, she added, has had a “chilling effect” that has kept many foreign-born Asian Americans from visiting a doctor.

“People were really, really scared,” Chin said.

Counties in Southern California and the largely rural Central Valley — places with a high proportion of Latino residents — tended to have high rates of excess deaths from March to July. Among counties with at least 100,000 people, Kings County, an arid expanse north of Los Angeles that is home to industrial-scale agriculture, had the highest rate of excess deaths per capita.

Officials at the Kings County Department of Public Health did not return a message seeking comment.

Bibbins-Domingo and others said it is important for state and county health officials to take a hard look at their excess death numbers. Excess deaths matter, she said, because they expose shortcomings in health care delivery. In addition, local and state responses to COVID-19 are grounded in data; if that data is inaccurate, the responses may be misguided.

“Deaths are important because they also help us to understand how much severe COVID is there in the community that we have to worry about,” Bibbins-Domingo said. “I think when we undercount that, we both fly blind for the overall pandemic management, and we might fly particularly blind in understanding the impact of the pandemic in particular communities.”

Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Photo by engin akyurt on Unsplash

Online Classes Divide Haves & Have Nots

It’s Tuesday morning, and teacher Tamya Daly has her online class playing an alphabet game. The students are writing quickly and intently, with occasional whoops of excitement, on the little whiteboards she dropped off at their homes the day before along with coloring books, markers, Silly Putty and other learning props — all of which she created or paid for with her own money.

Two of the seven children in her combined third and fifth grade class weren’t home when Daly came by with the gift bags. One of the two managed to find her own writing tablet, thanks to an older brother, but the other can’t find a piece of paper in her dad’s house. She sits quietly watching her classmates on Zoom for half an hour while Daly tries futilely to get the father’s attention. Maybe the student is wearing earphones; maybe the father is out of the room.

As children head back to school online across California and much of the nation, some of the disparities that plague education are growing wider. Instead of attending the same school with similar access to supplies and teacher time, children are directly dependent on their home resources, from Wi-Fi and computers to study space and parental guidance. Parents who work, are poor or have less education are at a disadvantage, as are their kids.

Daly teaches elementary students with special needs. The children in her class, who have a variety of diagnoses and intellectual disabilities, are at even higher risk — they can’t work independently and need more hands-on instruction. “The more they’re not getting those kinds of accommodations, the further they’re going to fall behind,” said Allison Gandhi, a managing director in special education at the nonprofit American Institutes for Research.

Educators and families fear devastating long-term consequences from COVID-19 for the nearly 800,000 California children who received special education services. So, in early August, the state announced it was developing a waiver application process for schools, even in COVID-plagued counties, that want to bring small groups of these students back for in-person education.

“There are simply kids that will never, ever have that quality learning that we all desire to advance online, no matter what kind of support we provide, even if we individualize it,” Gov. Gavin Newsom said at an Aug. 14 news conference.

Online learning is interfering with the students’ individualized education programs, or IEPs — legal agreements among families, school districts and specialists that set academic and behavioral goals for students and the services they’re entitled to.

The gap in online learning experience is sharply visible in Daly’s class, and the parents’ role is crucial. For parents who don’t have to work, distance learning may be tense and time-consuming, but it becomes part of a daily routine to be endured until the pandemic ebbs. For others, schooling is an unworkable nightmare burdening parents already stretched to their limits.

School started Aug. 12. By day five, Daly knew which children had the luxury of a stay-at-home parent and which were being supervised by older siblings. She knew which students struggled to get online on time every day — a new state requirement for all virtual learners — and which ones needed reminding to eat breakfast before class started.

She also knew, from last spring, that most of the parents couldn’t print the worksheets she had uploaded to Google Classroom. Their printers were broken, or printer ink cost too much, or they didn’t have printers. For this semester, she set up a time every Thursday for parents to drive by the school and pick up packets for the following week.

Daly works at Emery Park Elementary School in Alhambra, east of downtown Los Angeles, where two-thirds of the students qualified last year for free or reduced-price school meals. The school has loaned about 80% of the 434 students Chromebooks because they didn’t have computers at home, said principal Jeremy Infranca.

Like most schools in California, Emery Park started the school year in virtual classrooms — the safest option for a state with a stubbornly persistent infection rate. The Alhambra school district has yet to decide whether to apply for a waiver to bring students with special needs back on campus. Infranca and Daly would like to — if they can secure COVID-19 protective gear for themselves and their students, and if families feel comfortable with it.

In the meantime, Daly is doing her best to accommodate her families, which isn’t easy. Parents have told her to limit live group instruction to an hour a day, so as not to interfere with child care schedules or the laptop needs of other children in the household. To make up for the reduced time, Daly records several 15- to 30-minute videos explaining the work to be done and plans to schedule an individual session with each child once a week.

“I choose to be positive about this experience, and I choose to communicate and do my best to reach out to the students and connect with parents and family members,” said Daly. “We just need to be proactive, and also a little patient.”

Families have different opinions about whether to return their kids to the schoolhouse. It often depends more on a family’s desperation over child care than consideration of COVID-19 risks.

Cat Lee, 44, was nervous at first when she realized she had to take on the bulk of hands-on teaching for her son, Jacob, a fifth grader in Daly’s class.

“I wondered, would I be able to teach him as well, and would he be able to learn it?” she said.

Lee is a stay-at-home mom, and so far she has been able to stick to the schedule Daly lays out. She’s there with Jacob at every Zoom session and logs onto the Seesaw app to go through all the assignments. She praised Daly for her curriculum, which she felt was better and easier to teach than what the family received back in March. But she had reservations about her son’s new normal.

“It’s really slowing down his learning; plus, he doesn’t interact with kids anymore,” said Lee.

Still, if she had the chance to send Jacob for in-person learning now, Lee wouldn’t take it. She has concerns about their immune systems — Lee had a kidney transplant five years ago, and Jacob was born at just 27 weeks’ gestation — and is holding out for a COVID vaccine before allowing Jacob to resume his normal activities.

Not that she doesn’t have doubts.

“My fear is that he’s going to be home for so long, he’ll be so used to it and he won’t want to go back to school,” she said.

Danielle Musquiz, a 32-year-old mother with five elementary school-aged boys — four adopted from a relative — would favor a return to school. She gets three or four hours of sleep each night because of her 90-hour workweek with two jobs, as a home aide and a cashier at a regional park.

Four of her sons receive special education services, including an adopted middle child who is in Daly’s class and has cognitive delays linked to fetal alcohol spectrum disorder. The children, crowded together at the dining room table or in the living room, listen to their classes with earphones to keep from disturbing one another, which means she can’t hear a teacher calling out to her from the screen.

The four kids have individual education programs, but it’s hard for Musquiz to oversee them “with the minimal amount of time I have at home,” she said. She’s feeling overwhelmed by having to coordinate, supervise and respond to teachers, counselors and therapists for each child.

Musquiz is working longer hours than before the pandemic, and she picks up shifts at the park when the boys’ former stepfather takes them for the weekend.

“I’m slowly starting to say — and I know that this sounds bad — I don’t care anymore about the kids’ schooling,” Musquiz laughed nervously. “I feel like it’s chaos, and I’m drowning.”

To help with child care, her mother lives with the family Monday through Thursday, and her sons spend Thursday nights at her sister’s house. On Fridays, nine kids are all streaming their classes online from that house. On a recent Friday, the Wi-Fi broke, prompting a call from the school of one of her sons asking why he had left class early.

If she had the opportunity, Musquiz would send her children back to in-person learning in a heartbeat.

“None of my kids are really going to learn what they need to,” said Musquiz. “They need hands-on, they need interaction, they need motivation, and these classes are not doing that for them.”

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

The New Digital World Can Give Seniors A Hard Time

Family gatherings on Zoom and FaceTime. Online orders from grocery stores and pharmacies. Telehealth appointments with physicians.

These have been lifesavers for many older adults staying at home during the coronavirus pandemic. But an unprecedented shift to virtual interactions has a downside: Large numbers of seniors are unable to participate.

Among them are older adults with dementia (14% of those 71 and older), hearing loss (nearly two-thirds of those 70 and older) and impaired vision (13.5% of those 65 and older), who can have a hard time using digital devices and programs designed without their needs in mind. (Think small icons, difficult-to-read typefaces, inadequate captioning among the hurdles.)

Many older adults with limited financial resources also may not be able to afford devices or the associated internet service fees. (Half of seniors living alone and 23% of those in two-person households are unable to afford basic necessities.) Others are not adept at using technology and lack the assistance to learn.

During the pandemic, which has hit older adults especially hard, this divide between technology “haves” and “have-nots” has serious consequences.

Older adults in the “haves” group have more access to virtual social interactions and telehealth services, and more opportunities to secure essential supplies online. Meanwhile, the “have-nots” are at greater risk of social isolation, forgoing medical care and being without food or other necessary items.

Dr. Charlotte Yeh, chief medical officer for AARP Services, observed difficulties associated with technology this year when trying to remotely teach her 92-year-old father how to use an iPhone. She lives in Boston; her father lives in Pittsburgh.

Yeh’s mother had always handled communication for the couple, but she was in a nursing home after being hospitalized for pneumonia. Because of the pandemic, the home had closed to visitors. To talk to her and other family members, Yeh’s father had to resort to technology.

But various impairments got in the way: Yeh’s father is blind in one eye, with severe hearing loss and a cochlear implant, and he had trouble hearing conversations over the iPhone. And it was more difficult than Yeh expected to find an easy-to-use iPhone app that accurately translates speech into captions.

Often, family members would try to arrange Zoom meetings. For these, Yeh’s father used a computer but still had problems because he could not read the very small captions on Zoom. A tech-savvy granddaughter solved that problem by connecting a tablet with a separate transcription program.

When Yeh’s mother, who was 90, came home in early April, physicians treating her for metastatic lung cancer wanted to arrange telehealth visits. But this could not occur via cellphone (the screen was too small) or her computer (too hard to move it around). Physicians could examine lesions around the older woman’s mouth only when a tablet was held at just the right angle, with a phone’s flashlight aimed at it for extra light.

“It was like a three-ring circus,” Yeh said. Her family had the resources needed to solve these problems; many do not, she noted. Yeh’s mother passed away in July; her father is now living alone, making him more dependent on technology than ever.

When SCAN Health Plan, a Medicare Advantage plan with 215,000 members in California, surveyed its most vulnerable members after the pandemic hit, it discovered that about one-third did not have access to the technology needed for a telehealth appointment. The Centers for Medicare & Medicaid Services had expanded the use of telehealth in March.

Other barriers also stood in the way of serving SCAN’s members remotely. Many people needed translation services, which are difficult to arrange for telehealth visits. “We realized language barriers are a big thing,” said Eve Gelb, SCAN’s senior vice president of health care services.

Nearly 40% of the plan’s members have vision issues that interfere with their ability to use digital devices; 28% have a clinically significant hearing impairment.

“We need to target interventions to help these people,” Gelb said. SCAN is considering sending community health workers into the homes of vulnerable members to help them conduct telehealth visits. Also, it may give members easy-to-use devices, with essential functions already set up, to keep at home, Gelb said.

Landmark Health serves a highly vulnerable group of 42,000 people in 14 states, bringing services into patients’ homes. Its average patient is nearly 80 years old, with eight medical conditions. After the first few weeks of the pandemic, Landmark halted in-person visits to homes because personal protective equipment, or PPE, was in short supply.

Instead, Landmark tried to deliver care remotely. It soon discovered that fewer than 25% of patients had appropriate technology and knew how to use it, according to Nick Loporcaro, the chief executive officer. “Telehealth is not the panacea, especially for this population,” he said.

Landmark plans to experiment with what he calls “facilitated telehealth”: nonmedical staff members bringing devices to patients’ homes and managing telehealth visits. (It now has enough PPE to make this possible.) And it, too, is looking at technology that it can give to members.

One alternative gaining attention is GrandPad, a tablet loaded with senior-friendly apps designed for adults 75 and older. In July, the National PACE Association, whose members run programs providing comprehensive services to frail seniors who live at home, announced a partnership with GrandPad to encourage adoption of this technology.

“Everyone is scrambling to move to this new remote care model and looking for options,” said Scott Lien, co-founder and chief executive officer of the company, which is headquartered in Orange County, California.

PACE Southeast Michigan purchased 125 GrandPads for highly vulnerable members after closing five centers in March where seniors receive services. The devices have been “remarkably successful” in facilitating video-streamed social and telehealth interactions and allowing nurses and social workers to address emerging needs, said Roger Anderson, senior director of operational support and innovation.

Another alternative is technology from iN2L (an acronym for It’s Never Too Late), a company that specializes in serving people with dementia. In Florida, under a new program sponsored by the state’s Department of Elder Affairs, iN2L tablets loaded with dementia-specific content have been distributed to 300 nursing homes and assisted living centers.

The goal is to help seniors with cognitive impairment connect virtually with friends and family and engage in online activities that ease social isolation, said Sam Fazio, senior director of quality care and psychosocial research at the Alzheimer’s Association, a partner in the effort. But because of budget constraints, only two tablets are being sent to each long-term care community.

Families report it can be difficult to schedule adequate time with loved ones when only a few devices are available. This happened to Maitely Weismann’s 77-year-old mother after she moved into a short-staffed Los Angeles memory care facility in March. After seeing how hard it was to connect, Weismann, who lives in Los Angeles, gave her mother an iPad and hired an aide to ensure that mother and daughter were able to talk each night.

Without the aide’s assistance, Weismann’s mother would end up accidentally pausing the video or turning off the device. “She probably wanted to reach out and touch me, and when she touched the screen it would go blank and she’d panic,” Weismann said.

What’s needed going forward? Laurie Orlov, founder of the blog Aging in Place Technology Watch, said nursing homes, assisted living centers and senior communities need to install communitywide Wi-Fi services — something that many lack.

“We need to enable Zoom get-togethers. We need the ability to put voice technology in individual rooms, so people can access Amazon Alexa or Google products,” she said. “We need more group activities that enable multiple residents to communicate with each other virtually. And we need vendors to bundle connectivity, devices, training and service in packages designed for older adults.”

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

The New Normal For Seniors In A Post-Vaccine World

Imagine this scenario, perhaps a year or two in the future: An effective COVID-19 vaccine is routinely available and the world is moving forward. Life, however, will likely never be the same — particularly for people over 60.

That is the conclusion of geriatric medical doctors, aging experts, futurists and industry specialists. Experts say that in the aftermath of the pandemic, everything will change, from the way older folks receive health care to how they travel and shop. Also overturned: their work life and relationships with one another.

“In the past few months, the entire world has had a near-death experience,” said Ken Dychtwald, CEO of Age Wave, a think tank on aging around the world. “We’ve been forced to stop and think: I could die or someone I love could die. When those events happen, people think about what matters and what they will do differently.”

Older adults are uniquely vulnerable because their immune systems tend to deteriorate with age, making it so much harder for them to battle not just COVID-19 but all infectious diseases. They are also more likely to suffer other health conditions, like heart and respiratory diseases, that make it tougher to fight or recover from illness. So it’s no surprise that even in the future, when a COVID-19 vaccine is widely available — and widely used — most seniors will be taking additional precautions.

“Before COVID-19, baby boomers” — those born after 1945 but before 1965 — “felt reassured that with all the benefits of modern medicine, they could live for years and years,” said Dr. Mehrdad Ayati, who teaches geriatric medicine at Stanford University School of Medicine and advises the U.S. Senate Special Committee on Aging. “What we never calculated was that a pandemic could totally change the dialogue.”

It has. Here’s a preview of post-vaccine life for older Americans:

Medical Care

  • Time to learn telemed. Only 62% of people over 75 use the internet — and fewer than 28% are comfortable with social media, according to data from the Pew Research Center. “That’s lethal in the modern age of health care,” Dychtwald said, so there will be a drumbeat to make them fluent users of online health care.
  • 1 in 3 visits will be telemed. Dr. Ronan Factora, a geriatrician at Cleveland Clinic, said he saw no patients age 60 and up via telemedicine before the pandemic. He predicted that by the time a COVID-19 vaccine is available, at least a third of those visits will be virtual. “It will become a significant part of my practice,” he said. Older patients likely will see their doctors more often than once a year for a checkup and benefit from improved overall health care, he said.
  • Many doctors instead of just one. More regular remote care will be bolstered by a team of doctors, said Greg Poland, professor of medicine and infectious diseases at the Mayo Clinic. The team model “allows me to see more patients more efficiently,” he said. “If everyone has to come to the office and wait for the nurse to bring them in from the waiting room, well, that’s an inherent drag on my productivity.”
  • Drugstores will do more vaccinations. To avoid the germs in doctors’ offices, older patients will prefer to go to drugstores for regular vaccinations such as flu shots, Factora said.
  • Your plumbing will be your doctor. In the not-too-distant future — perhaps just a few years from now — older Americans will have special devices at home to regularly analyze urine and fecal samples, Dychtwald said, letting them avoid the doctor’s office.

Travel

  • Punch up the Google Maps. Many trips of 800 miles or less will likely become road trips instead of flights, said Ed Perkins, a syndicated travel columnist for the Chicago Tribune. Perkins, who is 90, said that’s certainly what he plans to do — even after there’s a vaccine.
  • Regional and local travel will replace foreign travel. Dychtwald, who is 70, said he will be much less inclined to travel abroad. For example, he said, onetime plans with his wife to visit India are now unlikely, even if a good vaccine is available, because they want to avoid large concentrations of people. That said, each year only 25% of people 65 and up travel outside the U.S. annually, vs. 45% of the general population, according to a survey by Visa. The most popular trip for seniors: visiting grandchildren.
  • Demand for business class will grow. When older travelers (who are financially able) choose to fly, they will more frequently book roomy business-class seats because they won’t want to sit too close to other passengers, Factora said.
  • Buying three seats for two. Older couples who fly together — and have the money — will pay for all three seats so no one is between them, Perkins said.
  • Hotels will market medical care. Medical capability will be built into more travel options, Dychtwald said. For example, some hotels will advertise a doctor on-site — or one close by. “The era is over of being removed from health care and feeling comfortable,” he said.
  • Disinfecting will be a sales pitch. Expect a rich combination of health and safety “theater” — particularly on cruises that host many older travelers, Perkins said: “Employees will be wandering around with disinfecting fogs and wiping everything 10 times.”
  • Cruises will require proof of vaccination. Passengers — as well as cruise employees — will likely have to prove they’ve been vaccinated before traveling, Factora said.

Eating/Shopping

  • Local eateries will gain trust. Neighborhood and small-market restaurants will draw loyal customers — mainly because they know and trust the owners, said Christopher Muller, a hospitality professor at Boston University.
  • Safety will be a bragging point. To appeal to older diners in particular, restaurants will prominently display safety-inspection signage and visibly signal their cleanliness standards, Muller said. They will even hire employees exclusively to wipe down tables, chairs and all high-touch points — and these employees will be easy to identify and very visible

Home Life

  • The homecoming. Because of so many COVID-19 deaths in nursing homes, more seniors will leave assisted living facilities and nursing homes to move in with their families, Factora said. “Families will generally move closer together,” he said.
  • The fortress. Home delivery of almost everything will become the norm for older Americans, and in-person shopping will become much less common, Factora said.
  • Older workers will stay home. The 60-and-up workforce increasingly will be reluctant to work anywhere but from home and will be very slow to re-embrace grocery shopping. “Instacart delivery will become the new normal for them,” Dychtwald said.

Gatherings

  • Forced social distancing. Whenever or wherever large families gather, people exhibiting COVID-like symptoms may not be welcomed under any circumstances, Ayati said.
  • Older folks will disengage, at a cost. Depression will skyrocket among older people who isolate from family get-togethers and large gatherings, Ayati said. “As the older population pulls back from engaging in society, this is a very bad thing.”
  • Public restrooms will be revamped. For germ avoidance, they’ll increasingly get no-touch toilets, urinals, sinks and entrances/exits. “One of the most disastrous places you can go into is a public restroom,” Poland said. “That’s about the riskiest place.”

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

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Can COVID Tracing Apps Help Fight The Pandemic?

My 18-year-old daughter, Caroline, responded quickly when I told her that she’d soon be able to download an app to alert her when she had been in risky proximity to someone with COVID-19, and that public health officials hoped to fight the pandemic with such apps.

“Yeah, but nobody will use them,” she replied.

My young smartphone addict’s dismissal sums up a burning question facing technologists around the country as they seek to develop and roll out apps to track the newly resurgent pandemic.

The app developers, and the public health experts who are watching closely, worry that if they do not engage enough people, the apps will fail to catch a significant number of infections and people at risk of infection. Their success relies on levels of compliance and public health competence that have been sorely lacking in the U.S. during the COVID crisis.

“We can’t even get people to wear masks in this country,” said Dr. Eric Topol, director of the Scripps Research Translational Institute in San Diego. “How are we going to get them to be diligent about using their phones to help with contact tracing?”

The tracking apps, a handful of which have already been launched in the U.S., enable cellphones to send signals to one another when they are nearby — and if they are equipped with the same app, or a compatible one. The devices keep a record of all their digital encounters, and later on, they alert users when someone with whom they were in physical proximity tests positive for the virus.

For an app to stop an outbreak in a given community, 60% of the population would have to use it, although a lower rate of participation could still reduce the number of cases and deaths, according to one recent study. Some say an adoption rate as low as 10% could provide benefits.

In many places where apps have been implemented so far, adoption has failed to reach even that lower threshold. In France, less than 3% of the population had activated the government-endorsed app, StopCovid, as of late June. Italy’s app had attracted about 6% of the population. The percentage of residents who have downloaded the app endorsed by North and South Dakota, Care19, is in the low single digits.

One exception is Germany, where more than 14% of the population downloaded the new Corona Warn App in the first week after its launch.

COVID-19 apps are generally intended to supplement the work of human contact tracers, who follow up with people who’ve tested positive for the virus, asking them where they’ve been and with whom they’ve been in contact. The tracers then contact those potentially exposed individuals and advise them on the next steps, such as testing or self-quarantine.

Human contact tracing, slow and laborious in the best of times, has been a notable failure in the United States so far: An insufficient number of sometimes inadequately trained people have been deployed, and the infected people they’ve contacted often won’t cooperate.

The prospects for digital tracing appear no better. “Ideally, we’d have a digital way to supplement the human contact tracing,” said Topol. But “there hasn’t been any place yet globally where there’s proof that it goes from a clever idea to really helping people.”

Close to 20 tracing apps are in use or under development in the U.S.

A growing number of U.S. app developers are targeting state health agencies because Google, the maker of Android cellphone software, and iPhone maker Apple won’t enable an app to use their joint platform without a state’s endorsement. The Google-Apple technology, despite very limited use so far, is considered by many the most promising platform.

However, many states are lukewarm to the Google-Apple technology — and to digital contact tracing more broadly. In a Business Insider survey published in June, only three states said they had committed to the Google-Apple model, while 19 — including California — were noncommittal. Seventeen states had no plans for a smartphone-based tracking system. The remaining 11 didn’t respond or gave unclear plans.

In April, California Gov. Gavin Newsom said his office was working with Apple and Google to make their technology a part of the state’s plan for easing out of the stay-at-home order. Two months later, the Golden State seems to have backed off the idea.

Instead, it is training 20,000 human contact tracers with the hope they will hit the ground running this month. The state’s Department of Public Health told California Healthline in an email that most contact tracing “can be done by phone, text, email and chat.”

Trust Is Important

The multiple obstacles to successful use of digital tracing apps include indifference or outright hostility to anti-COVID measures. Some people won’t even wear masks or are leery of other public health efforts.

Moreover, to the extent that people do adopt phone-based tracing, it might miss potential outbreaks among the hardest-hit populations — seniors and low-income people, who are less likely than others to engage with smartphones.

“If adoption is high among 20-year-olds and low among seniors and in nursing homes, we probably don’t want the result to be that seniors and nursing homes don’t get the attention they should get through contact-tracing efforts,” said Greg Nojeim, director of the Freedom, Security and Technology Project at the Center for Technology and Democracy in Washington, D.C.

Unresolved technical challenges could also hamper the effectiveness of the apps.

To capture risky close encounters between users, some apps employ GPS to track their location. Others use Bluetooth, which gauges the proximity of two cellphones to each other without revealing their whereabouts.

Neither approach is perfect at measuring distance, and either might incorrectly assess a COVID threat to users. GPS can tell if two people are at the same address, but not if they are on different floors of a building. Bluetooth determines distance based on the strength of a phone’s signal. But signal strength can be distorted if a phone is in somebody’s purse or pocket, and metal objects can also interfere with it.

The biggest barrier to public buy-in is the privacy question. Advocates of the Google-Apple system, which uses Bluetooth, say the two companies enhanced the prospects for wide adoption by addressing fundamental privacy concerns

Google-Apple won’t allow apps to track the locations of smartphone users, and it ensures that all contacts traced are stored on the phones of individuals, not on a centralized database that would give public health authorities greater access to the information.

That means every decision based on the tracking data is up to the smartphone users. They decide whether to notify other app users if they contract the virus or whether to follow the advice — to self-quarantine and contact public health authorities — that would accompany an alert of possible exposure.

The Google-Apple system makes it easy for apps that use it to communicate with one another, which could be particularly important in multistate regions — the Washington metropolitan area, for example — where each state might have a different app and people frequently travel back and forth across state lines.

But developers of apps that don’t use the Google-Apple platform will struggle to sync with it, especially if their apps track locations or use a centralized server. Those include the Care19 app in the Dakotas and Healthy Together, Utah’s app, which both use GPS and Wi-Fi to track locations. Healthy Together also allows public health officials to see people’s names, phone numbers and location history.

These models are anathema to privacy-first app proponents, which might limit their uptake. In fact, North Dakota has announced it is planning a second app based on the Google-Apple technology.

Some public health experts, however, warn that the strong privacy focus of Google-Apple, to the exclusion of other important factors, may limit the value of the apps in tackling the pandemic.

“Apple-Google in their partnership have pretty narrowly defined what is acceptable,” said Jeffrey Kahn, director of Johns Hopkins University’s Berman Institute of Bioethics. “If these things are going to work as everyone hopes, we have to have a fuller and more soup-to-nuts discussion about all the parts that matter.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Racism Is The New Public Health Crisis

From Boston to San Bernardino, California, communities across the U.S. are declaring racism a public health crisis.

Fueled by the COVID-19 pandemic’s disproportionate impact on communities of color, as well as the killing of George Floyd in the custody of Minneapolis police, cities and counties are calling for more funding for health care and other public services, sometimes at the expense of the police budget.

It’s unclear whether the public health crisis declarations, which are mostly symbolic, will result in more money for programs that address health disparities rooted in racism. But officials in a few communities that made the declaration last year say it helped them anticipate the COVID-19 pandemic. Some say the new perspective could expand the role of public health officials in local government, especially when it comes to reducing police brutality against Black and Latino residents.

The declarations provide officials a chance to decide “whether they are or are not going to be the chief health strategists in their community,” said Dr. Georges Benjamin, executive director of the American Public Health Association.

“I’ve had a firm view [that] what hurts people or kills people is mine,” said Benjamin, a former state health officer in Maryland. “I may not have the authority to change it all by myself, but by being proactive, I can do something about that.”

While health officials have long recognized the impact of racial disparities on health, the surge of public support for the Black Lives Matter movement is spurring calls to move from talk to financial action.

In Boston, Mayor Martin J. Walsh declared racism a public health crisis on June 12and a few days later submitted a budget that transferred 20% of the Boston Police Department’s overtime budget — $12 million — to services like public and mental health, housing and homelessness programs. The budget must be approved by the City Council.

In California, the San Bernardino County board on Tuesday unanimously adopted a resolution declaring racism a public health crisis. The board was spurred by a community coalition that is pushing mental health and substance abuse treatment as alternatives to incarceration. The coalition wants to remove police from schools and reduce the use of a gang database they say is flawed and unfairly affects the Black community.

The city of Columbus and Franklin County, Ohio, made similar declarations in June and May, respectively, while Ingham County, Michigan, passed a resolution June 9. All three mention the coronavirus pandemic’s disproportionate toll on minority residents.

Those localities follow in the footsteps of Milwaukee County, Wisconsin, which last year became the first jurisdiction in the country to declare racism a public health crisis, citing infant and maternal mortality rates among Blacks. The county’s focus on the issue primed officials to look for racial disparities in COVID-19, said Nicole Brookshire, executive director of the county’s Office on African American Affairs.

Milwaukee County was training employees in racial equity and had launched a long-term plan to reduce disparities in health when the pandemic hit. “It was right on our radar to know that having critical pieces of data would help shape what the story was,” said Brookshire.

She credits this focus for the county’s speedy publication of information showing that Black residents were becoming infected with and dying of COVID-19 at disproportionate rates.

Using data to tell the story of racial disparities “was ingrained” in staff, she said.

On March 27, the county launched an online dashboard containing race and ethnicity data for COVID-19 cases and began to reach out to minority communitieswith culturally relevant messaging about stay-at-home and social distancing measures. Los Angeles County and New York City did not publish their first racial disparity data until nearly two weeks later.

Declaring racism a public health crisis could motivate health officials to demand a seat at the table when municipalities make policing decisions, and eventually lead to greater spending on services for minorities, some public health experts say.

The public is pressuring officials to acknowledge that racism shortens lives, said Natalia Linos, executive director of Harvard’s Center for Health and Human Rights. Police are 2½ times as likely to kill a Black man as a white man, and research has shown that such deaths have ripple effects on mental health in the wider Black community, she said.

“Police brutality is racism and it kills immediately,” Linos said. “But racism also kills quietly and insidiously in terms of the higher rates of infant mortality, maternal mortality and higher rates of chronic diseases.”

The public health declarations, while symbolic, could help governments see policing in a new light, Linos said. If they treated police-involved killings the way they did COVID-19, health departments would get an automatic notification every time someone died in custody, she said. Currently, no official database tracks these deaths, although news outlets like The Washington Post and The Guardian do.

Reliable data would allow local governments to examine how many homeless or mentally ill people would be better served by social or public health workers than armed police, said Linos.

“Even symbolic declarations are important, especially if they’re accurately capturing public opinion,” said Linos, who is running to represent the 4th Congressional District of Massachusetts on a platform of health and equity. “They’re important for communities to feel like they’re being listened to, and they’re important as a way to begin conversations around budgeting and concrete steps.”

Derrell Slaughter, a district commissioner in Ingham County, Michigan, said he hopes his county’s declaration will lead to more funding for social and mental health as opposed to additional policing. Slaughter and his colleagues are attempting to create an advisory committee, with community participation, to make budget and policy recommendations to that end, he said.

Columbus City Council members coincidentally declared racism a public health crisis on May 25, the day Floyd died in Minneapolis. Four months earlier, the mayor had asked health commissioner Dr. Mysheika Roberts for recommendations to address health issues that stem from racism.

The recent protests against police brutality have made Roberts realize that public health officials need to take part in discussions about crowd control tactics like tear gas, pepper spray and wooden bullets, she said. However, she has reservations about giving the appearance that her office sanctions their use.

“That definitely is one of the cons,” she said, “but I think it’s better than not being there at all.”

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

Using Patient Stories To Mentally Survive As A COVID-19 Clinician

Dr. Christopher Travis, an intern in obstetrics-gynecology, has cared for patients with COVID-19 and performed surgery on women suspected of having the coronavirus. But the patient who arrived for a routine prenatal visit in two masks and gloves had a problem that wasn’t physiological.

“She told me, ‘I’m terrified I’m going to get this virus that’s spreading all over the world,’” and worried it would hurt her baby, he said of the March encounter.

Travis, who practices at the Los Angeles County + University of Southern California Medical Center, told the woman he knew she was scared and tried to assure her she was safe and could trust him.

Asking many questions and carefully listening to the answers, Travis was exercising the craft of narrative medicine, a discipline in which clinicians use the principles of art and literature to better understand and incorporate patients’ stories into their practices.

“How do we do that really difficult work during the pandemic without it consuming us so we can come out ‘whole’ on the other end?” Travis said. Narrative medicine, which he studied at Columbia University, has helped him be aware of his own feelings, reflect more before reacting, and view challenging situations calmly, he said.

The first graduate program in narrative medicine was created at Columbia University in 2009 by Dr. Rita Charon, and the practice has gained wide influence since, as evidenced by the dozens of narrative medicine essays published in the Journal of the American Medical Association and its sister journals.

Learning to be storytellers also helps clinicians communicate better with non-professionals, said writer and geriatrician Dr. Louise Aronson, who directs the medical humanities program at the University of California-San Francisco. It may be useful to reassure patients — or to motivate them to follow public health recommendations. “Tell them a story about having to intubate a previously healthy 22-year-old who’s going to die and leave behind his first child and new wife, and then you have their attention.”

“At the same time, telling that story can help the health professional process their own trauma and get the support they need to keep going,” she said.

Teaching Storytelling To Doctors

This fall, Keck School of Medicine of USC will offer the country’s second master’s program in narrative medicine, and the subject also will be part of the curriculum in the new Kaiser Permanente Bernard J. Tyson School of Medicine in Pasadena, which opens its doors July 27 with its first class of 48 students. (KHN, which produces California Healthline, is not affiliated with Kaiser Permanente.)

Narrative medicine trains physicians to care about patients’ singular, lived experiences — how illness is really affecting them, said Dr. Deepthiman Gowda, assistant dean for medical education at the new Kaiser Permanente school. The training may entail a close group reading of creative works such as poetry or literature, or watching dance or a film, or listening to music.

He said there’s also “real, intrinsic value” for patients because a doctor isn’t only being trained to care about the body and medications.

“Literature in its nature is a dive into the experience of living — the triumphs, the joys, the suffering, the anxieties, the tragedies, the confusions, the guilt, the ecstasies of being human, of being alive,” Gowda said. “This is the training our students need if they wish to care for persons and not diseases.”

Dr. Andre Lijoi, a geriatrician at WellSpan York Hospital in Pennsylvania, recently led a virtual session for 20 front-line nurse practitioners who work in nursing homes. Two volunteers recited Mary Oliver’s 1986 poem “Wild Geese,” which reads, “Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.”

Sharing the poet’s words helped the nurses relieve their pent-up tensions, enabling them to express their feelings about life and work under COVID-19, Lijoi said.

One participant wrote, “As the world goes on around me I mourn seeing my aging parents, planning my daughter’s wedding, and missing my great niece’s baptism. I wonder, when will life be ‘normal’ again?”

Processing Fear To Provide Better Care

Dr. Naomi Rosenberg, an emergency room physician at Temple University Hospital in Philadelphia, studied narrative medicine at Columbia and teaches it at Temple’s Lewis Katz School of Medicine. The discipline helps her “metabolize” what she takes in while caring for COVID-19 patients, including the fear that comes with having to enter patients’ rooms alone in protective gear, she said.

The training helped her counsel a worried woman who couldn’t visit her sister because the hospital, like others around the country, wasn’t allowing relatives to visit COVID-19-infected patients.

“I’d read stories of Baldwin, Hemingway and Steinbeck about what it feels like to be afraid for someone you love, and recalling those helped me communicate with her with more clarity and compassion,” Rosenberg said. (After a four-day crisis, the sister recovered.)

Dr. Pamela Schaff (right) discusses narrative medicine in the Hoyt Gallery at the Keck School of Medicine of the University of Southern California, as Chioma Moneme, a student in the class of 2020, looks on. (Credit: Chris Shinn)

Close readings can also help students understand the various ways metaphor is used in the medical profession, for good or ill, said Dr. Pamela Schaff, who directs the Keck School’s new master’s program in narrative medicine.

Recently, Schaff led third-year medical students through a critical examination of a journal article that described medicine as a battlefield. The analysis helped student Andrew Tran understand that describing physicians as “warriors” could “promote unrealistic expectations and even depersonalization of us as human beings,” he said.

Something similar happens in the militarized language used to describe cancer, he added: “We say, ‘You’ve got to fight,’ which implies that if you die, you’re somehow a failure.”

In the real world, doctors are often focused narrowly, devoting most of their attention to a patient’s chief complaint. They listen to patients on average for only 11 seconds before interrupting them, according to a 2018 study in the Journal of General Internal Medicine. Narrative medicine seeks to change that.

While listening more carefully may add one more item to a physician’s lengthy “to-do” list, it could also save time in the end, Schaff said.

“If we train physicians to listen well, for metaphor, subtext and more, they can absorb and act on their patients’ stories even if they have limited time,” she said. “Also, we physicians must harness our narrative competence to demand changes in the health care system. Health systems should not mandate 10-minute encounters.”

Telling The Patient’s Whole Story

In practice, narrative medicine has diverse applications. Modern electronic health records, with their templates and prefilled sections, can hamper a doctor’s ability to create meaningful notes, Gowda said. But doctors can counter that by writing notes in language that makes the patient’s struggles come alive, he said.

The school’s curriculum will incorporate a different patient story each week to frame students’ learning. “Instead of, ‘This week, you will learn about stomach cancer,’ we say, ‘This week, we want you to meet Mr. Cardenas,’” Gowda said. “We learn about who he is, his family, his situation, his symptoms, his concerns. We want students to connect medical knowledge with the complexity and sometimes messiness of people’s stories and contexts.”

In preparation for the school’s opening, Gowda and a colleague have been running Friday lunchtime mindfulness and narrative medicine sessions for faculty and staff.

The meetings might include a collective, silent examination of a piece of art, followed by a discussion and shared feelings, said Dr. Marla Law Abrolat, a Permanente Medicine pediatrician in San Bernardino, California, and a faculty director at the new school.

“Young people come to medicine with bright eyes and want to help, then a traditional medical education beats that out of them,” Abrolat said. “We want them to remember patients’ stories that will always be a part of who they are when they leave here.”

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

A Family With Five Doctors & Two COVID Deaths

On the morning of April 1, Dr. Priya Khanna inched her way from the bedroom to the front door, using walls, doors and railings to hold herself up long enough to get to the stretcher waiting outside. She had been battling COVID-19 for five days and was struggling to breathe.

Her mother, also COVID-positive, watched helplessly as EMTs in full personal protective equipment guided Priya into the ambulance. Priya waved to Justin Vandergaag, a childhood friend walking alongside her. “I’ll see you later,” he said.

Ten days earlier, a similar scene unfolded when Priya’s father, Dr. Satyender Dev Khanna, was hospitalized for COVID-19.

The Khannas would soon suffer the most appalling of fates, as the two doctors from the same family encountered an illness against which they were fatally powerless.

Their story reveals the conundrum facing health care workers, who care for their patients while exposing themselves and their loved ones to risk. And it underscores how unprepared U.S. hospitals still were more than a month after news of community transmission of COVID-19 was first detected in the country.

COVID-19 has hit New Jersey hard, particularly in the north where the Khannas live. According to a database maintained by The New York Times, the state has recorded nearly 165,000 confirmed coronavirus cases and more than 12,300 deaths.

News of the pandemic had unsettled Priya, a 43-year-old nephrologist in the town of Glen Ridge. She suffered from a rare autoimmune disorder called small-cell vasculitis, and the medication she took to treat it compromised her immune system. She knew that if she contracted COVID-19 she would become very ill.

Priya, which means “beloved” in Hindi, had decided in college to become a doctor and graduated from Kansas City University of Medicine and Biosciences in 2003. Both her sisters were also doctors. She became certified in both internal medicine and nephrology, opened her own practice and was the director of two dialysis centers.

Priya Khanna (right) with younger sister Anisha Khanna-Sharma. (Courtesy of the Khanna family)

“She navigated the world with kindness and delight,” said a childhood friend, Laura Stanfill. She was “extremely selfless, a fiercely devoted friend and loyal,” said another, Melissa Auriemma. She gave long bear hugs and loved Lizzo, Hello Kitty, designer purses and anyplace with a beach.

Priya’s father fell ill in early March; the family is unsure how. Satyender, 78, was an immigrant from India who came to the U.S. with a medical degree and so little money that he did not know if he could afford the taxi ride to the hospital where he was to start his internship. In the 1980s, he became one of the first doctors in New Jersey to perform laparoscopic surgery, and was a trauma and general surgeon his whole career.

Five days after Satyender became sick, Priya’s mother, Kamlesh, a retired pediatrician, did, too. Priya, who lived with her parents, immediately isolated herself from them. She grew worried about her own health after a patient coughed directly in her face.

On March 20, Satyender was hospitalized, and a day later was placed on a ventilator. As a courtesy to Priya’s mother, the ICU physicians let her see her husband at the hospital he had worked at for more than 35 years. She suited up in her own personal protective equipment (PPE) and held his hand for a few minutes before being ushered away. It was a few weeks before what would have been their 50th anniversary.

“That was the last time she physically saw him alive,” said Dr. Anisha Khanna-Sharma, Priya’s younger sister and a pediatrician. “After that, we could only virtually see him on the iPad.”

Priya herself was taken to Clara Maass medical center, the 427-bed facility where her father was being cared for, on April 1. Because her sister Sughanda, an ER doctor, had her own full-body protective suit, she was able to gain better access than most visitors and found a situation reminiscent of a war zone.

Dr. Priya Khanna (seated) poses with friends Laura Stanfill (from left) Justin Vandergaag and Melissa Auriemma at her sister Anisha’s wedding in 2015. (Courtesy of the Khanna family)

There wasn’t enough proper PPE. Sughanda recalled intervening when the registration clerk, not wearing protective gear, leaned into Priya’s face to ask her questions. Priya didn’t receive a blanket or a pulse oximeter, and was not continuously connected to a patient monitor, the family said.

Sughanda and Anisha took turns FaceTiming with Priya. She was having trouble breathing, despite receiving 100% oxygen, and almost urinated on herself because she was too weak to walk to the common bathroom. She asked for a commode but never got one.

“They didn’t feed her,” said Anisha. “My sister didn’t get a meal at the hospital for the first 2½ days.” Instead, Anisha and Sughanda asked a nurse they knew to deliver food to her, and raised the alarm with hospital executives.

“Providing high-quality patient care is our priority, and that has never wavered even as we continue to treat those who are suffering from the coronavirus,” said spokesperson Stacie Newton. “While we do not comment on individual patients, we can assure you that all of our patients are treated with the utmost dignity and respect and any family concern is treated with attention, discretion, and privacy.”

Priya was weak but still reviewed patient files and texted with her replacement physician up until she went on a ventilator. Meanwhile, her sisters tried valiantly to find treatments. They put Priya and her father on a waitlist for the COVID-19 drug remdesivir. They sought and found hundreds of matches for an experimental treatment in which blood plasma from people who have recovered from COVID-19 is administered to patients.

Yet there were numerous bureaucratic delays. By the time the sisters were able to administer units to Priya and Satyender, it was too late, they said. Although it remains unclear at what point in the course of the illness the unapproved therapy is most helpful, Priya’s sisters are convinced their family could have benefited from earlier treatment.

“I think the doctors and nurses and staff did a phenomenal job in terms of doing what they could with what they had,” Sughanda said. “Was the hospital prepared for this? Absolutely not. Did they have enough resources to treat? Absolutely not. They did not have enough of anything to cover the surge of patients that were coming through the hospital.”

On April 13, Priya passed away, followed by her father on April 21.

After Priya died, Sughanda and Anisha both received packages in the mail of clothing Priya had bought for their children.

Every now and then, Auriemma, the childhood friend, rereads messages she sent Priya while she was in the hospital to cheer her up.

We gotta go to Oregon.

We gotta go out for lunch.

We gotta do our movie date.

“She was an excellent nephrologist. But it was short-lived,” said Kamlesh, Priya’s mother. “She touched so many lives, I can’t even tell you. She was the kindest, sweetest person I ever met in the whole world. I think that’s why God took her away from us. She was an angel.”

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

Hate Unmasked In America

“You are the most selfish f—ing people on the planet.”

I jerked my head to the left, where I saw a neighbor glaring at us from his driveway while unloading groceries from his trunk.

“Where’s your f—ing mask?” he said. “Unbelievable.”

 

Marigold Ganz, 3, wore this mask for five minutes outside and then threw it away. We haven’t been able to find it since. In the background is her grandfather, Jovit Almendrala, trying his own mask out for the first time. (Courtesy of Anna Almendrala)

My jaw dropped. I had just walked three blocks home with my toddler and my dad in our leafy, mostly empty Los Angeles neighborhood because my kid had thrown a tantrum in the car.

And we had forgotten our masks. Four days earlier, Mayor Eric Garcetti had ordered protective face coverings anytime we left home, not just when we entered essential businesses.

I pointed out my house to the neighbor to explain how close we were, just a few doors down from him. He cut me off.

“I don’t give a f– where you live, and I don’t give a f– what your reason is.”

Then my dad jumped in. “Sorry, sir, we forgot our masks. I’m sorry, sir.”

Still, the man didn’t soften.

“You should be sorry. And you should make her be sorry, too,” he gestured toward me. After a few more agonizing seconds, he dismissed us.

Our neighbor’s mask, by the way? It was off his face, hanging loosely around his neck. All the better to shout at us.

As a health care reporter, I had covered America’s evolution on masks as the coronavirus spread across the globe. Back in January, I wrote an article about why Chinese immigrants insisted on wearing surgical and construction masks in the U.S., even though it went against official health recommendations at the time. In February, I wrote about Asian families in California clashing with schools over whether their children should be allowed to wear masks in class.

At that time, Asian people wearing masks were targets for verbal and physical abuse. Attackers saw masks on Asian faces as signs of disease and invasion; people were punched and kicked, harassed on public transit, bullied at school and worse.

Now, of course, masks are the norm. And they’ve become more than just personal protection; they are symbols of courtesy and scientific buy-in. They have, to some extent, also become political signifiers. In a new poll from the Kaiser Family Foundation, 70% of Democrats said they wear a protective mask “every time” they leave their house, versus 37% of Republicans. (Kaiser Health News, which produces California Healthline, is an editorially independent program of KFF.)

After our verbal beatdown, my dad and I walked home stone-faced, and then retreated to our separate rooms to nurse our wounds.

I have no idea if the neighbor’s comments had a racist undertone. But it felt like the times in my childhood, first in New Zealand, then in a Bay Area suburb, when I had seen my Philippines-born parents, stunned and silent, get dressed down or humiliated by angry, callous white people. Now it was my 3-year-old daughter’s turn to see me dumbstruck. As I began telling my husband the story, I started crying so hard that I got a headache.

After my tears came reflection, and an attempt at empathy.

My neighbor was obviously scared. He was older, and potentially more medically vulnerable. His trunk had been packed with overstuffed shopping bags ― probably enough food for weeks, to avoid leaving his house.

He had just come from the grocery store, an enclosed space full of things and people that could potentially infect him. I understand the stress that comes with shopping during the pandemic.

Like many of us, my neighbor could be struggling with how to live in mortal fear of the coronavirus. And for him, at least that morning, that struggle got the better of him.

Later that day, I wrote the neighbor a card introducing ourselves. I apologized for making him feel unsafe and acknowledged that he was right about the masks. But I also said he had unfairly used us as a target for his fear and frustration, and I told him I was shocked and saddened he would treat a neighbor with so much hate. I haven’t heard back from him.

My dad spent the rest of that morning praying that the man didn’t get the coronavirus — lest he blame us and all Asians, forever.

Since that day, no one in my family has left the house without a mask on their face, and I’m anxious to train my daughter to wear one, although she resists it the way she has refused hats and headbands in the past.

We can’t stop noticing that most other exercisers and dog-walkers in our neighborhood ― all white ― fly past us without them. They don’t seem to worry about getting caught on the wrong side of whatever America happens to believe about masks on any given day. But my family can’t risk it.

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

Images (Courtesy of Anna Almendrala)

Reopening Colleges & Keeping Students Safe

Saint Mary’s College in Moraga, California, is open for business this fall — but to get there, you really have to want it. Tucked amid verdant hills 23 miles east of San Francisco, accessible by a single road and a single entrance, the small, private Roman Catholic school receives almost no visitors by accident.

This, in the age of a pandemic, is good news indeed for its administrators.

“We can control who comes in or out in a way that larger, urban campuses perhaps can’t do,” said William Mullen, the school’s vice provost for enrollment. “Those campuses are in many cases more permeable.”

As colleges and universities across the country juggle student and staff safety, loss of opportunities and loss of revenue during the COVID-19 pandemic, even seemingly secondary considerations — how many entrances a school has, how close it sits to community foot traffic, how food is served — loom large.

And while officials are loath to make broad guarantees about safety, they can’t ignore public health advice and thus are immersed in an effort to at least minimize the potential for harm. What that looks like will vary wildly from campus to campus, but in almost every case it will include attempts to limit close contact with others — a difficult job for educational institutions.

The stakes are enormous. Some universities are already projecting financial losses in the tens of millions due to declining enrollment and the uncertainty ahead. But at its core, this is a health problem that remains both simple and vexing: How do you open up a campus without inviting mass infection?

One preliminary answer: Don’t let too many people hang around at the same time.

“I would never use the term ‘make it safe,’” said Dr. Sarah Van Orman, who oversees student health services at the University of Southern California, a private school in the heart of Los Angeles. “I would say we’re going to reduce the risk to the degree possible to have everything in place.”

“I would never use the term ‘make it safe,’” said Dr. Sarah Van Orman, who oversees student health services at the University of Southern California, a private school in the heart of Los Angeles. “I would say we’re going to reduce the risk to the degree possible to have everything in place.”

On many campuses, that means reducing class size (even if it requires adding new sections), making large survey courses online-only, cutting dorm residencies by as much as 50%, limiting or eliminating common-area food service, and perhaps even alternating students’ in-person attendance according to class level (freshman, sophomore, etc.) by quarters or semesters.

That’s in addition to the protocols recommended by the American College Health Association. The ACHA, to which more than 800 institutions belong, has called for a phased reopening of campuses “based on local public health conditions as well as [school] capacity.” Its guidelines include widespread testing, contact tracing, and isolation or quarantine of both ill and exposed individuals.

The Centers for Disease Control and Prevention laid out even more daunting instructions for what a campus should do in the event of a positive test, calling for potential short-term closures of buildings and classrooms that might extend into weeks in the middle of a semester. Among other things, the CDC said, the scenario could include having to move some on-campus residents into short-term alternative housing in the surrounding community.

Van Orman is a past president of the ACHA, but her school has yet to announce a definitive plan for the fall. That puts USC in good company. Although a rolling survey by the Chronicle of Higher Education suggests that nearly 70% of schools are planning for on-campus education, almost every institution directly contacted by Kaiser Health News was actually planning for all contingencies, with fully or partly opened campuses simply being the best-case and most publicly touted scenarios.

Making a campus virus-ready could take all summer, according to officials at several schools. Most of them don’t yet know how many students will return, and about half the schools contacted by KHN said they’ve pushed back the decision deadline for incoming freshmen to June 1, a month later than usual.

Those decisions have huge ramifications for university budgets. Ben Kennedy, whose Kennedy & Co. consults higher education institutions, said most are planning for an enrollment drop of 5% to 10%. “They’ll experience the big financial hit this fall,” Kennedy said.

At Georgetown University in Washington, D.C., a projected $50 million shortfallprompted voluntary furloughs, suspended retirement contributions and construction stops. The Massachusetts Institute of Technology reported $50 million in unexpected costs, while Janet Napolitano, president of the University of California’s 10-campus system, estimated combined losses of $1.2 billion from mid-March through April in announcing salary cuts and some freezes.

At the same time, large-scale restructuring will be required at bigger campuses in response to the pandemic. Converting some multiperson dorm rooms to singles will become the norm at many schools, although not every campus — or community — is prepared to handle a surge of students needing to find other housing as a result. Solutions are still being studied to address those who will be in close quarters in shared dining halls, bathrooms and common rooms. Some schools plan to set aside dorms for students who test positive and need to be isolated or quarantined.

“Students with existing health issues will have priority for single occupancy,” said Debbie Beck, executive director of health services for the University of South Carolina’s 33,000-student Columbia campus. “Testing in the residence halls will be critical.”

Several schools are considering ending their fall semesters before Thanksgiving, which Beck said “would further reduce risks and control the spread of COVID” as students are sent home until January. Stanford University, meanwhile, is pondering a range of possibilities that include permitting only a couple of class years on campus, perhaps alternating by quarters.

A common misperception, several officials said, is that college campuses have been “closed” since the outbreak of the coronavirus. Although student life has been restricted, other parts of many campuses have remained in operation, particularly at research institutions.

“We have research departments and laboratories that really don’t work if you’re not there,” said Dr. Jorge Nieva of USC’s Keck School of Medicine. “It’s difficult to do mouse experiments with cancer if you’re not doing mouse experiments with cancer.”

California’s two massive public university systems embody that dichotomy. California State University Chancellor Timothy White said the 23-campus CSU system, primarily instruction-focused, will mostly conduct remote learning. Napolitano expects the research-heavy University of California campuses to be open “in some kind of hybrid mode,” which many other schools likely will adopt.

“These kids are digital natives,” said Nieva, whose son was a freshman living on campus at USC before students were sent home. “A lot of what they’re experiencing, they’re perhaps better equipped to handle than another generation might be.”

Back in Moraga, Saint Mary’s will reduce dorm capacity, record lectures for online retrieval and institute strict guidelines to prevent the spread of illness — but it plans to continue a 150-plus-year tradition of close, personal education for its 2,500 undergraduates. In its case, being small is the biggest advantage.

“If we already only have 15 or 18 students in a classroom that can hold 30, then it becomes much easier to adapt to the new guidelines and protocols,” said Dr. Margaret Kasimatis, the school’s provost. “That’s a pretty good start.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

30-Somethings Go Home To Mom & Dad

It took three weeks, but Lawrence and Arlene Maze finally persuaded their younger son, Gregory, of Los Angeles, to get on a flight home to Austin.“He basically shut his business down to come here and has to restart his business when it’s safe,” his father said. “It was a very difficult decision.”

Alex Rose, a 33-year-old event producer and recording artist, didn’t need much persuasion. She spent a couple of weeks alone in her 500-square-foot Hollywood apartment, taking long walks to break up the days. In mid-March, her event bookings and performances began to disappear. Then a neighbor showed her video of an arsonist setting trash can fires on their street and she saw the melted cans next to her building.

“All of a sudden I didn’t feel safe anymore,” she said. “I didn’t feel safe, and frankly, I felt totally alone.”

The next morning, she and her cat, Eloise, flew home to Austin to her mother and stepdad.

As COVID-19 has ripped through densely populated communities, millennials have fled their own cramped quarters for less congested cities with more room in their parents’ homes. They are near family should someone get sick. The familiarity is comforting in an uncertain time. Overwhelmingly, parents and their adult children view the arrangement as temporary. Of course, no one knows how long “temporary” might last.

Lawrence Maze said the thinking was that Gregory could help him or his wife if they got sick, and they could help him if he did. Also, they believed Austin’s health care system would be less stressed than L.A.’s.“He’s lived on his own now for a very long time,” Lawrence said. “It’s not like he moved back into his old house. He knows he’s living in a guest bedroom.”

It’s a major disruption for young adults who have established their lives thousands of miles from home: They keep paying rent on empty places. They have left behind their routines and social lives. Some have lost their work. Others can work remotely alongside parents who are doing the same.

The magnitude of the outbreak has, for a time, reordered American lives. It’s fostering unexpected togetherness.

Rose’s mother, Elizabeth Christian, said her daughter hasn’t visited Austin this long since she was in college, and now “nobody is rushing off to do anything.”

“We’re having meals together. And we’re watching movies at night,” she said.

Christian and her husband, Bruce Todd, a former Austin mayor, wanted to make sure Rose got back before California wouldn’t allow her to leave or Texas wouldn’t let her in.

Sarah and Ken Frankenfeld had barely moved into their downsized townhome when the coronavirus pandemic brought their 31-year-old son and his girlfriend from New York City to quarantine with them.

“I was nervous about how this was going to work,” Sarah Frankenfeld said of their lack of furniture and readiness for houseguests. They’d met his girlfriend for one evening a few months earlier. “He hasn’t lived here in a while. But it’s worked and it’s been lovely.”

Kevin Frankenfeld, who works in digital, social strategy and marketing, has lived in New York almost nine years. He and his girlfriend, Maddie Haller, wanted to quarantine together.

“In Manhattan or Brooklyn, people are just on top of one another,” he said. “So we wanted to get out of town.”

This shared feeling of lockdown with so much unknown can cause stress and make us feel lonely and anxious, even with others around, said Dr. Vivek Murthy, U.S. surgeon general from 2014 to 2017.

“In this moment, we have no idea when the pandemic will end,” he said. “We don’t know when our lives will go back to normal.”

Well before the stay-at-home orders, Murthy recognized Americans’ increased loneliness, prompting his new book, “Together: The Healing Power of Human Connection in a Sometimes Lonely World.” Now that many are isolated by themselves, he urges us to “step back and take stock of our lives.”

“The silver lining of COVID-19 is that it’s given us the opportunity to reset our social lives and remember how essential relationships are to our well-being,” he said.

Rose is doing her own reset. She’s among California’s estimated 2 million self-employed. But because of the pandemic, she’s applying for full-time jobs around the country in digital media and project management.

“When I left L.A., I never expected that I would not go back to that apartment,” she said. With her lease up in June, she asked a friend to pack up her place and move everything into storage.

Rose and her mother returned late Sunday from a quick turnaround to California to retrieve Rose’s tiny 2016 Fiat 500 that was stranded six weeks in long-term airport parking.

Gregory Maze, 33, is a private chef, event caterer and part-owner of a coffee truck business. He moved to L.A. five years ago.

“I’m fortunate to have a situation like this, but leaving L.A. was not on my terms,” he said. “It’s out of my hands. I really don’t know what the landscape is going to look like at the end of this.”

While some younger adults mock baby boomers with the “OK boomer” meme, the pandemic seems to have shifted the tone — at least where parents are concerned.

Suzanne and Stuart Newberg’s older son, Jared, 27, and his girlfriend, Melissa Asensio, both of Manhattan, arrived March 21 to quarantine together.

“They bought one-way plane tickets and we said, ‘You’re welcome as long as you need to be here,’” Suzanne Newberg said.

Jared and Melissa, who both worked full time in their New York City offices, now work remotely from Austin. His three roommates left for their hometowns about a week before Jared and Melissa. Her two roommates left New York around the same time.

“It was a lot safer and more comfortable to come here,” Jared said. “We’re super-lucky and super-fortunate.”

Back in New York, one of Kevin Frankenfeld’s roommates remains in their three-bedroom apartment. The other went home to Boston. Maddie lives in the same neighborhood. Her apartment is empty now. Both Kevin and Maddie work full time remotely and are glad they’re not in the city.

“We didn’t want to be stuck in a small apartment to isolate in a hotbed,” Kevin said. “Here we’ve got a green area, dishwasher and laundry.”

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