Because comprehensive data isn't available, the scope and impact of current shortages can't be documented with precision. But anecdotal reports suggest the situation is severe.
This article was published on Thursday, February 3, 2022 in Kaiser Health News.
Frail older adults are finding it harder than ever to get paid help amid acute staff shortages at home health agencies.
Several trends are fueling the shortages: Hospitals and other employers are hiring away home health workers with better pay and benefits. Many aides have fallen ill or been exposed to COVID-19 during the recent surge of omicron cases and must quarantine for a time. And staffers are burned out after working during the pandemic in difficult, anxiety-provoking circumstances.
The implications for older adults are dire. Some seniors who are ready for discharge are waiting in hospitals or rehabilitation centers for several days before home care services can be arranged. Some are returning home with less help than would be optimal. Some are experiencing cutbacks in services. And some simply can't find care.
Janine Hunt-Jackson, 68, of Lockport, New York, falls into this last category. She has post-polio syndrome, which causes severe fatigue, muscle weakness, and, often, cognitive difficulties. Through New York's Medicaid program, she's authorized to receive 35 hours of care each week. But when an aide left in June, Hunt-Jackson contacted agencies, asked friends for referrals, and posted job notices on social media, with little response.
"A couple of people showed up and then disappeared. One man was more than willing to work, but he didn't have transportation. I couldn't find anybody reliable," she said. Desperate, Hunt-Jackson arranged for her 24-year-old grandson, who has autism and oppositional defiant disorder, to move into her double-wide trailer and serve as her caregiver.
"It's scary: I'm not ready to be in a nursing home, but without home care there's no other options," she said.
Because comprehensive data isn't available, the scope and impact of current shortages can't be documented with precision. But anecdotal reports suggest the situation is severe.
"Everyone is experiencing shortages, particularly around nursing and home health aides, and reporting that they're unable to admit patients," said William Dombi, president of the National Association for Home Care & Hospice. Some agencies are rejecting as many as 40% of new referrals, according to reports he's received.
"We're seeing increasing demand on adult protective services as a result of people with dementia not being able to get services," said Ken Albert, president of Androscoggin Home Healthcare and Hospice in Maine and chair of the national home care association's board. "The stress on families trying to navigate care for their loved ones is just incredible."
In mid-January, the Pennsylvania Homecare Association surveyed its members: Medicare-certified home health agencies, which provide assistance from aides and skilled nursing and therapy services, and state-licensed home care agencies, which provide nonmedical services such as bathing, toileting, cooking, and housekeeping, often to people with disabilities covered by Medicaid. Ninety-three percent of Medicare-certified home health and hospice agencies and 98% of licensed agencies said they had refused referrals during the past year, according to Teri Henning, the association's chief executive officer.
"Our members say they've never seen anything like this in terms of the number of openings and the difficulty hiring, recruiting, and retaining staff," she told me.
Lori Pavic is a regional manager in Pennsylvania for CareGivers America, an agency that provides nonmedical services, mostly to Medicaid enrollees who are disabled. "Our waiting list is over 200 folks at this time and grows daily," she wrote in an email. "We could hire 500 [direct care workers] tomorrow and still need more."
Another Pennsylvania agency that provides nonmedical services, Angels on Call, is giving priority for care to people who are seriously compromised and live alone. People who can turn to family or friends are often getting fewer services, said C.J. Weaber, regional director of business development for Honor Health Network, which owns Angels on Call.
"Most clients don't have backup," she said.
This is especially true of older adults with serious chronic illnesses and paltry financial resources who are socially isolated — a group that's "disproportionately affected" by the difficulties in accessing home healthcare, said Jason Falvey, an assistant professor of physical therapy and rehabilitation science at the University of Maryland School of Medicine.
Many agencies are focusing on patients being discharged from hospitals and rehab facilities. These patients, many of whom are recovering from COVID, have acute needs, and agencies are paid more for serving this population under complicated Medicare reimbursement formulas.
"People who have long-term needs and a high chronic disease burden, [agencies] just aren't taking those referrals," Falvey said.
Instead, families are filling gaps in home care as best they can.
Anne Tumlinson, founder of ATI Advisory, a consulting firm that specializes in long-term care, was shocked when a home health nurse failed to show up for two weeks in December after her father, Jim, had a peripherally inserted central catheter put in for blood cell transfusions. This type of catheter, known as a PICC line, requires careful attention to prevent infections and blood clots and needs to be flushed with saline several times a day.
"No show from nurse on Friday, no call from agency," Tumlinson wrote on LinkedIn. "Today, when I call, this 5 star home health agency informed me that a nurse would be out SOMETIME THIS WEEK. Meanwhile, my 81 year old mother and I watched youtube videos this weekend to learn how to flush the picc line and adjust the oxygen levels."
Tumlinson's father was admitted to the hospital a few days before Christmas with a dangerously high level of fluid in his lungs. He has myelodysplastic syndrome, a serious blood disorder, and Parkinson's disease. No one from the home health agency had shown up by the time he was admitted.
Because her parents live in a somewhat rural area about 30 minutes outside Gainesville, Florida, it wasn't easy to find help when her father was discharged. Only two home health agencies serve the area, including the one that had failed to provide assistance.
"The burden on my mother is huge: She's vigilantly monitoring him every second of the day, flushing the PICC line, and checking his wounds," Tumlinson said. "She's doing everything."
Despite growing needs for home care services, the vast majority of pandemic-related federal financial aid for healthcare has gone to hospitals and nursing homes, which are also having severe staffing problems. Yet all the parts of the health system that care for older adults are interconnected, with home care playing an essential role.
Abraham Brody, associate professor of nursing and medicine at New York University, explained these complex interconnections: When frail older patients can't get adequate care at home, they can deteriorate and end up in the hospital. The hospital may have to keep older patients for several extra days if home care can't be arranged upon discharge, putting people at risk of deteriorating physically or getting infections and making new admissions more difficult.
When paid home care or help from family or friends isn't available, vulnerable older patients may be forced to go to nursing homes, even if they don't want to. But many nursing homes don't have enough staffers and can't take new patients, so people are simply going without care.
Patients with terminal illnesses seeking hospice care are being caught up in these difficulties as well. Brody is running a research study with 25 hospices, and "every single one is having staffing challenges," he said. Without enough nurses and aides to meet the demand for care, hospices are not admitting some patients or providing fewer visits, he noted.
Before the pandemic, hospice agencies could usually guarantee a certain number of hours of help after evaluating a patient. "Now, they really are not able to guarantee anything on discharge," said Jennifer DiBiase, palliative care social work manager at Mount Sinai Health System in New York City. "We really have to rely on the family for almost all hands-on care."
We're eager to hear from readers about questions you'd like answered, problems you've been having with your care and advice you need in dealing with the healthcare system. Visit khn.org/columnists to submit your requests or tips.
Therapists are concerned about a price transparency provision that requires most licensed medical practitioners to give patients detailed upfront cost estimates.
This article was published on Thursday, February 3, 2022 in Kaiser Health News.
Groups representing a range of mental health therapists say a new law that protects people from surprise medical bills puts providers in an ethical bind and could discourage some patients from care.
The therapists take no issue with the main aim of the legislation, which is to prevent patients from being blindsided by bills, usually for treatment received from out-of-network medical providers who work at in-network facilities. Instead, they are concerned about another part of the law — a price transparency provision — that requires most licensed medical practitioners to give patients detailed upfront cost estimates, including a diagnosis, and information about the length and costs involved in a typical course of treatment. That's unfitting for mental healthcare, they say, because diagnoses can take time and sometimes change over the course of treatment.
Finally, if they blow the estimate by at least $400, the law says uninsured or self-pay patients can challenge the bills in arbitration.
Arguing that the rule is burdensome and unnecessary, mental health providers wrote a Jan. 25 letter to the Department of Health and Human Services, seeking an exemption from the "good faith" estimates for routine mental and behavioral health services. The letter was signed by 11 groups, including the American Psychological Association, the National Association of Social Workers, the American Psychiatric Association, and the Psychotherapy Action Network.
Some also worry that the law will allow insurance companies to play a larger role in dictating what even non-network mental health therapists can charge, although policy experts say it isn't clear how that could happen. Although exact figures are not available, it's estimated that one-third to one-half of psychologists are not in-network with insurers, the psychologists' association said. And those numbers do not include other practitioners, such as psychiatrists and licensed clinical social workers, who are also out of network.
"We got thrown into this bill, but the intention [of the law] was not mental health but high-cost medical care," said Jared Skillings, chief of professional practice with the American Psychological Association. "We're deeply concerned that this [law] inadvertently would allow private insurance companies to set regional rates across the country that, for independent practitioners, would be a race to the bottom."
Therapy costs vary widely around the U.S. and by specialty, but generally range from $65 an hour to $250 or more, according to the website GoodTherapy.
The good faith estimates must be given this year to uninsured or self-pay patients for medical or mental healthcare services. They were included in the No Surprises Act as part of a broader effort to give patients a good idea of cost, both per visit and for a course of treatment, in advance.
Therapists say their professional codes of ethics already require disclosure to patients of per-visit costs. Requiring diagnostic billing codes in the estimate before even seeing a patient — as they interpret the rule — is unethical, they argue, and tallying up what might be weeks or even months of treatment costs could keep some patients from undergoing care.
"If people see a large dollar amount, they might be intimidated or scared into not getting help at all," said Linda Michaels, a private practice therapist in Chicago and co-chair of the Psychotherapy Action Network.
The counterargument, though, is that one of the law's aims was to provide patients with pricing information — for mental health services or medical care — that is less opaque and more similar to what they're used to when shopping for other types of goods or services.
Benedic Ippolito, an economist at the American Enterprise Institute, said he is sympathetic to medical providers' concerns about the extra administrative burden. But "giving consumers a better sense of financial obligation they are exposed to and imposing some cost pressure on providers are both reasonable goals," he said.
Even among providers, there is no universal agreement on how burdensome the estimates will be.
"It's not an unreasonable thing, frankly, for psychiatrists, not just plastic surgeons or podiatrists, to say, 'If you want me to do this and you're not covered by insurance or whatever, it will cost you X amount for the whole episode of care and this is what you get in return,'" said Dr. Robert Trestman, chair of psychiatry and behavioral medicine at the Virginia Tech Carilion School of Medicine. Although he serves on an American Psychiatric Association committee, he was voicing his own opinion.
The Centers for Medicare & Medicaid Services said mental health providers are not exempt from the rules about good faith estimates, in a written statement to KHN. It added, however, that the agency is working on "technical assistance geared toward mental health providers and facilities." Federal agencies often issue additional clarification of rules, sometimes in the form of FAQs.
The No Surprises Act took effect on Jan. 1. Its thrust was to bar medical providers from sending what are called surprise or "balance" bills to insured patients for out-of-network care provided in emergencies or for nonemergency situations at in-network facilities. Common before the law passed, such bills often amounted to hundreds or thousands of dollars, representing the difference between the amount insurers paid toward out-of-network care and the often much higher amounts charged.
Now, insured patients in most cases will pay only what they would have been billed for in-network care. Any additional amount must be worked out between their insurer and the provider. Groups representing emergency doctors, anesthesiologists, air ambulance providers, and hospitals have filed lawsuits over a Biden administration rule that outlines the factors independent arbitrators should consider when deciding how much an insurer must pay the medical provider toward disputed bills.
Most mental health services, however, aren't directly touched by this part of the directive because treatment is not typically performed in emergency situations or in-network facilities.
Instead, the complaint from mental health providers focuses on the good faith estimates.
Additional rules are expected soon that will spell out how upfront estimates will be handled for people with health coverage. In their letter to HHS, the behavioral health groups say they fear the estimates will then be used by insurers to limit treatment for insured patients, or influence pay negotiations with therapists.
Several policy experts say they do not think the law will affect mental health reimbursement in most cases.
"Mental health professionals will have the exact same ability to bill out-of-network, to have patients agree to whatever market price is for their services," said Loren Adler, associate director of the USC-Brookings Schaeffer Initiative for Health Policy, who has long studied balance billing issues. "Nothing about the No Surprises Act restricts that."
Some of the therapy groups' concerns may stem from misreading the law or rules implementing it, say policy experts, but they still reflect the confusion providers share surrounding the rollout of the law.
As for how to handle pre-treatment diagnoses that are needed to deliver good faith estimates, CMS said in its email to KHN that providers could estimate costs for an initial screening, then follow up with an additional estimate after a diagnosis.
"No one is going to be forced to make a diagnosis of a patient they have not met," Adler said.
Just before my son's 9-month checkup, my wife and I debated whether to postpone it. It was a "well baby visit," but the potential threats to his health felt real. The last time he went to the pediatrician, in November, the air inside the office was stuffy, and the waiting room was crowded with children from schools in and around St. Louis, all waiting to get their COVID shots.
By showing up to get their children vaccinated, the families were all following the guidance from the Centers for Disease Control and Prevention for children ages 5 to 11. But we were trying to follow the CDC guidance too, and for children too young for the vaccine. That means avoiding crowded or poorly ventilated places — like the pediatrician's waiting room.
As we grappled with the decision, the news was bleak: COVID-19 positivity rates, and hospitalizations, were reaching record levels in St. Louis and across the country.
We decided to go ahead with the visit after my wife called the office and learned that the COVID testing had moved outside to the parking lot and that we could complete the check-in process over the phone, instead of in the waiting room.
These are the risk analyses we constantly must do while waiting to hear when our baby will be eligible for a vaccine. The latest crumb of hope is the news that the Pfizer vaccine may be available for children under 5 as soon as the end of February.
Meanwhile, it feels as though many other Americans are impatient to move on. The omicron surge means safety precautions and mask rules have been rolled back into place, and that has left many people frustrated.
Compliance has always been a problem in many parts of the U.S. Where I live in Missouri, I often see people without masks in public indoor spaces despite the contagiousness of omicron. There's a particular grocery store clerk whose checkout line we try to avoid. At our neighborhood butcher, a guy behind the counter also refuses to mask up. Not to mention all the shoppers who choose to flaunt the mask guidance on any given day.
During a recent trip to the pharmacy, my wife, Emma, spent 20 minutes in line in front of a man whose mask was dangling from one ear. She wanted to simply turn around and say, "Hey, do you mind putting on your mask? I have a baby at home who's unvaccinated." But that type of request hasn't been well received in our experience: A washer repairman tried to refuse to wear a mask in our house, as did the dishwasher delivery team. (We've had bad luck with our appliances recently.)
To be the parent of an unvaccinated kid these days is to feel constantly at the mercy of the whims of strangers. That's why our son has been inside only seven buildings since the day he was born. That I can count them on two hands surprises me. I also worry about the experiences and interactions he's never had — all the little things in life he's missing.
Laura Swofford is another St. Louis-area parent and the mother of two kids, ages 4 and 6. For a brief moment last spring, she felt OK taking her kids out, for trips to Target, the library, or other everyday destinations that adults might find mundane but are still "shiny" and exciting to young kids.
"It's a really big deal, and it gives you sanity in your day," Swofford said of those little outings and errands.
But that era of freedom was short-lived. Swofford started feeling uncomfortable again in May, after the CDC released guidance that said the fully vaccinated could stop masking indoors. There was no enforcement, and masks seemed to swiftly disappear from most faces — even though vaccination rates in Missouri were lowat the time (and remain in the bottom third nationwide).
Then the delta variant arrived, and cases surged again. Next came omicron. Health officials in Missouri urged everyone to be more vigilant about wearing masks, but a lot of residents ignored them. Missouri has never had a statewide mask mandate, and Missouri Attorney General Eric Schmitt has filed a series of lawsuits against cities, counties, and school districts that issue their own.
Swofford said she often wishes she could stand up in the middle of a crowd, wave her arms, and remind people that there are parents who can't vaccinate their children.
In a January 2022 survey of parents with children younger than 5, the share who said they would get their child vaccinated "right away" was similar to the share who said they would "wait and see" how the vaccine works for other young children.
That latest survey from the KFF COVID-19 Vaccine Monitor showed an increase in the percentage of the most willing parents. Thirty-one percent said they'd seek out the vaccination as soon as possible after it is authorized for children younger than 5, up from 23% in September 2021.
Friends and relatives usually understand our plight, but any kind of socializing typically involves questions about vaccine statuses and detailed negotiating about safety protocols. I got an invitation to the karaoke bar. Sounded fun, but I'm not comfortable with that yet. Play date with old friends and their kids? Well, maybe we could do something outside, weather permitting.
The arrival of winter made it that much harder: For those who want to socialize indoors, it's amazing how quickly rapid tests for adults can add up to $500. To have another couple over for dinner requires at least four tests. For a guest list of 10 adults for Christmas, that's 10 tests. And at $12 a pop, the costs add up quickly. That's assuming rapid tests are in stock to purchase.
The federal government recently launched a website where Americans can order four free at-home tests. I wish that had been an option over the holidays.
As omicron surges pummeled communities and hospitals, the sense of being forgotten intensified. More specific guidance from officials for parents like us, with kids younger than 2, would be nice.
"Unfortunately, there's nothing revolutionary," said Dr. Rachel Orscheln, a pediatric infectious disease specialist at St. Louis Children's Hospital. The guidance for families like ours remains the same: To protect unvaccinated kids, try to form a cocoon of safety around them. The surrounding adults need to get vaccinated, get a flu shot, wear a mask, socialize outdoors when possible, and avoid contact with sick people. Collectively, we could all advocate for policies that reduce transmission.
Day care can be a particularly brutal puzzle for parents. Orscheln said that when cases surge, families are forced into a game of balancing risk and benefits.
Throughout the pandemic, most kids with COVID have had mild cases, although there are very real, if rare, complications that require hospitalization. Some infected children have developed a post-viral illness known as multisystem inflammatory syndrome. Other kids have shown symptoms of long COVID.
Those risks have to be balanced against other concerns and needs, Orscheln said, like the developmental benefits of socializing or whether parents can alter their child care plans.
Another parent I spoke to, Dr. Ashish Premkumar, works as an OB-GYN in Chicago. He has a 4-year-old in day care and a 1-year-old at home with a nanny. He and his wife considered pulling the 4-year-old out of day care until the omicron case count eased, but before they could even decide, COVID swept through the family.
Another obstacle is at-home testing. Both BinaxNOW and QuickVue tests are intended for people 2 and older. So if parents suspect a child younger than 2 might have COVID, they must go to the pediatrician or a clinic for a test. Many parents don't have the time or the job flexibility to arrange that.
"The whole process just is not friendly," Premkumar said. "And this far into a pandemic, it should just be simple: I need a COVID test, can it just be sent to my house? And can I get a result back in a timely fashion to be able to organize my life?"
Families all over the country have struggled with long waits at community testing sites. Maria Aguilar of Los Banos, California, recently spent four hours in line getting a test for her 4-year-old daughter, after the girl's Head Start program closed for two weeks because of a COVID outbreak. Aguilar works as a community health worker in Merced, doing door-to-door canvassing and outreach. Her job allowed her to take time off to care for her daughter, but many of the people she serves don't have that flexibility.
Is an infected child really that big of a deal? I've encountered that question many times. It's true that most kids who get sick from COVID do not die. They survive. And the symptoms of omicron are supposed to be mild — or at least milder than those of the delta variant. Plus, many people point out that an infection could have a silver lining: It would give the kid some natural immunity while waiting for the vaccine, no?
I find myself answering these questions again and again. Meanwhile, many Americans seem to be shrugging their shoulders, saying that getting infected with the coronavirus is inevitable for us all.
My wife and I are not ready to give up the fight. We're not going to shrug off the risks for our baby, however rare they may be. As we enter the third year of this pandemic, we will keep fighting to keep the virus away from him until he can get vaccinated. We continue to take precautions, and we continue to wait. And it seems he might be unprotected for a while still.
More nursing homes are waiting longer for COVID-19 test results for residents and staffers, according to federal data, making the fight against record numbers of omicron cases even harder.
The double whammy of slower turnaround times for lab-based PCR tests and a shortage of rapid antigen tests has strained facilities where quickly identifying infections is crucial for keeping a highly vulnerable population safe.
A KHN analysis of data from the Centers for Medicare & Medicaid Services finds that 25% of nursing homes that sent tests to a lab waited an average of three or more days for results as of Jan. 16. In early December, that number was 12%.
At Lutheran Life Villages in Fort Wayne, Indiana, the long wait for results renders PCR tests "useless," President Alex Kiefer said. "If we send somebody off to get a PCR test, sometimes it takes two days for them to get an appointment. And then it takes two, three, four days to get a read."
So Kiefer's organization mainly relies on rapid antigen tests. But on Jan. 12, long-term care sites in the state were alerted to shortages of Abbott Laboratories' rapid BinaxNOW antigen tests, according to the Indiana Department of Health. Lutheran Life Villages was using 125 rapid tests a day, including on vaccinated people. Now as transmission rates remain high, "we are scrounging to try to find enough," Kiefer said. He called the state shipments sporadic. "The scariest thing is, if we get to a point where we can't get those, we will have to rely on PCRs, and the timing of that is just really challenging," Kiefer said.
Federal officials require the country's 15,000 nursing homes to submit data on COVID in their facilities; KHN's analysis of testing speeds is based on reports of turnaround times in early December and mid-January from about 10,900 homes. Nursing home residents have high vaccination rates — more than 87% are fully inoculated, and 67% have received boosters. Still, experts warn, delays can pose significant safety risks. For one, in the time it takes to receive results, outbreaks can emerge undetected. And with omicron, breakthrough infections appear to cause more severe symptoms for older people.
This many nursing homes haven't waited three or more days for test results since March 2021, CMS data show.
Broadly, PCR tests are considered the gold standard for accuracy and are more likely to be used for regular surveillance testing because rapid tests can miss asymptomatic cases. The drawback is that labs can take days to return PCR results under normal circumstances, let alone when testing demand and staffing shortages delay processing.
Dr. Naveen Patil, deputy state health officer of the Arkansas Department of Health, said the state recommended that long-term care facilities shift to PCR tests during COVID outbreaks because they are more reliable, even when plenty of antigen tests are available.
"But now," he said, "most of them are doing PCR because they don't have adequate supply of antigens."
The Biden administration, which is sending 1 billion rapid COVID tests to U.S. households, has been shipping long-term care facilities 2.5 million tests a week. But that supply has proved measly against omicron's winter surge, which has fueled even greater infections among nursing home residents, according to CDC data.
The American Healthcare Association, which lobbies for nursing homes and assisted living facilities, recently said the administration plans to send the sector an additional 5 million rapid tests in the coming weeks, but the industry says that's not nearly enough. A spokesperson for the U.S. Department of Health and Human Services did not respond to questions about the new shipments.
Two years into the pandemic, nursing homes are still managing a crisis. Testing is "a bit of a mess," said David Grabowski, a long-term care expert and health policy professor at Harvard Medical School. "It's déjà vu all over again."
Industry workers say rapid test shortages also complicate their efforts to honor residents' right to receive visitors while ensuring the virus doesn't come in with them.
A survey in early January by LeadingAge, which lobbies for nonprofit nursing homes and other care providers for older adults, found that 76% of nursing homes had adequate testing supplies, but facilities said restocking was getting harder. The American Healthcare Association asked the Biden administration to increase the sector's testing supplies and related equipment. The group estimates the sector needs 5 million tests per week.
Dr. Swati Gaur, medical director for New Horizons Nursing Facilities in Georgia, said some facilities "are having to kind of pivot to PCR" tests because of antigen test shortages.
Before omicron arrived, Tina Sandri, CEO of Forest Hills of DC in Washington, would get PCR test results back in about a day. In January, that turnaround time increased to two or three days. Sandri's company, which operates skilled nursing and assisted living facilities, relies on PCR testing to have more confidence that they'll catch asymptomatic cases.
"Those antigen test kits are really hard to get," she added. "We would need hundreds of them every single day, and there just aren't enough of them for us to use as a practical solution." Their most valuable use, Sandri said, would be for employees to test themselves at home after an exposure or infection before returning to work.
COVID infections among nursing home residents and staff members have begun to decline nationally, but the total in the week ending Jan. 23 — 42,584 resident cases — surpasses the numbers from last winter's surge, when initial doses of the COVID vaccine were becoming available. In the past month, the number of resident deaths has increased each week — and was 1,298 for the week ending Jan. 23. That is well below the 4,100 deaths reported in the same week a year ago, CDC data shows.
Long-term care facilities that aren't worried about COVID testing say they can reliably get test results in less than a day or two. And they have ample supplies of rapid antigen tests from federal shipments.
"I maybe get two or three shipments a week" of rapid tests, said Karen Venis, CEO of Sayre Christian Village in Lexington, Kentucky. The lab that processes Sayre's PCR test samples — which they use for routine surveillance — sends staffers to test residents and workers twice a week. Results are typically provided within 24 hours, and Venis estimated they use about 100 antigen tests a week, saving them mostly for people with symptoms.
"We've got the support that we need," she said.
For Kiefer in Indiana, though, using more PCR tests isn't tenable.
"That's how we were making decisions early on in the pandemic," he said. "It was difficult to do everything."
At least with rapid tests, he said, "we can take action right away."
On Jan. 1, Americans woke up with some new protections from giant medical bills.
Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and is co-produced by KHN.
Meet the No Surprises Act. It's a new law that protects patients from one of the worst experiences the U.S. healthcare system has to offer — surprise out-of-network hospital bills. That's when a person gets hit with a bill from an out-of-network provider at an in-network hospital. Under the new law, if a person visits an in-network hospital and is seen by an out-of-network provider, that provider and the insurer have to work it out for themselves. Patients are only on the hook for what they would've paid an in-network provider. That's a big deal.
But there are some caveats (because, of course). For instance: These protections apply only to care in a hospital. Then there's the deceptively named Surprise Billing Protection form that patients might be asked to sign, waiving these newly won rights. And there's more.
This episode of "An Arm and a Leg" breaks down what you need to know about your rights under this new law, what traps to look out for, and who to call if something smells fishy.
Actually, here: The federal hotline for reporting No Surprises Act violations is at 1-800-985-3059.
Early in his first quarter at the University of California-Davis, Ryan Manriquez realized he needed help. A combination of pressures — avoiding COVID-19, enduring a breakup, dealing with a disability, trying to keep up with a tough slate of classes — hit him hard.
"I felt the impact right away," said Manriquez, 21.
After learning of UC-Davis' free counseling services, Manriquez showed up at the student health center and lined up an emergency Zoom session the same day. He was referred to other resources within days and eventually settled into weekly group therapy.
That was September 2020. Manriquez, now president of the student union, considers himself lucky. It can take up to a month to get a counseling appointment, he said, and that's "at a school that's trying really hard to make services available."
Across the country, college students are seeking mental health therapy on campus in droves, part of a 15-year upswing that has spiked during the pandemic. U.S. Surgeon General Vivek Murthy in December issued a rare public health advisory noting the increasing number of suicide attempts by young people.
Colleges and universities are struggling to keep up with the demand for mental health services. Amid a nationwide shortage of mental health professionals, they are competing with hospital systems, private practices, and the burgeoning telehealth industry to recruit and retain counselors. Too often, campus officials say, they lose.
At UC-Davis, Dr. Cory Vu, an associate vice chancellor, said the campus is competing with eight other UC system universities, 23 California State universities, and multiple other health systems and practices as it tries to add 10 counselors to its roster of 34.
"Every college campus is looking for counselors, but so is every other health entity, public and private," he said.
According to data compiled by KFF, more than 129 million Americans live in areas with a documented shortage of mental healthcare professionals. Roughly 25,000 psychiatrists were working in the U.S. in 2020, according to the Bureau of Labor Statistics. The KFF data indicates that more than 6,500 additional psychiatrists are needed to eliminate the shortfall.
On campuses, years of public awareness campaigns have led to more students examining their mental health and trying to access school services. "That's a very good thing," said Jamie Davidson, associate vice president for student wellness at the University of Nevada-Las Vegas. The problem is "we don't have enough staff to deal with everyone who needs help."
About three years ago, administrators at the University of Southern California decided to respond aggressively to the skyrocketing demand for student mental health services. Since then, "we've gone from 30 mental health counselors to 65," said Dr. Sarah Van Orman, the university's chief medical officer for student health.
The result? "We're still overwhelmed," Van Orman said.
Van Orman, past president of the American College Health Association, said the severity of college students' distress is rising. More and more students come in with "active suicidal ideation, who are in crisis, with such severe distress that they are not functioning," Van Orman said. For counselors, "this is like working in a psychiatric ER."
As a result, wait times routinely stretch into weeks for students with nonemergency needs like help dealing with class-related stress or the transition to college. Professionals at campus counseling centers, meanwhile, have seen both their workloads and the serious nature of individual cases rise dramatically, prompting some to seek employment elsewhere.
"This is an epidemic in its own right," Van Orman said, "and it has exploded over the last two years to the point that it is not manageable for many of our campuses — and, ultimately, our students."
The pandemic has exacerbated the challenges students face, said UNLV's Davidson. Lockdown measures leave them feeling isolated and disconnected, unable to establish crucial relationships and develop the sense of self that normally comes with campus life. They also lose out on professional opportunities like internships and fall behind on self-care like going to the gym.
A study by the Center for Collegiate Mental Health at Pennsylvania State University found that among 43,000 students who sought help last fall at 137 campus counseling centers, 72% said the pandemic had negatively affected their mental health. An online survey of 33,000 students last fall found that half of them "screened positive for depression and/or anxiety," according to Boston University researcher Sarah Ketchen Lipson.
Even before the pandemic, university counseling center staff members were overwhelmed, Northwestern University staff psychiatrist Bettina Bohle-Frankel wrote in a recent letter to The New York Times. "Now, overburdened, underpaid and burned out, many therapists are leaving college counseling centers for less stressful work and better pay. Many are doing so to protect their own mental health."
On average, a counselor position at UC-Davis requiring a master's or doctorate degree pays $150,000 a year in salary and benefits, but compensation can vary widely based on experience, Vu said. Even at that rate, Vu said, "we sometimes cannot compete with Kaiser [Permanente], other hospital settings, or private practice."
Tatyana Foltz, a licensed clinical social worker in San Jose, California, spent three years as a mental health services case manager at Santa Clara University. "I absolutely enjoyed working with the college students — they're intelligent, dynamic, and complex, and they are working things out," Foltz said. But she left the university a few years ago, lured by the flexibility of private practice and frustrated by a campus system that Foltz felt did not reflect the diverse needs of its students.
Foltz returned to campus in December to support Santa Clara students as they protested what they said were inadequate services on campus, including insufficient numbers of diverse counselors representing Black, Indigenous, and LGBTQ+ communities and other people of color. The protests followed the deaths of three students during the fall quarter, two by suicide.
"It should not be taking student deaths to get us better mental health resources," said junior Megan Wu, one of the rally's organizers. After the rally, the chair of Santa Clara's board of trustees pledged several million dollars in new funding for campus counseling.
Replacing therapists who leave universities is difficult, Davidson said. UNLV currently has funding for eight new counselors, but the salaries it can offer are limiting in a competitive hiring market.
Universities are getting creative in their attempts to spread mental health resources around on their campuses, however. UC-Davis embeds counselors in student-utilized groups like the Cross-Cultural Center and the LGBTQIA Resource Center. Stanford University's Bridge Peer Counseling Center offers anonymous counseling 24/7 to students who are more comfortable speaking with a trained fellow student.
Mental health services that can be accessed online or by phone, which many schools did not offer before the pandemic, may become a lifeline for colleges and universities. Students often prefer remote to on-site counseling, Davidson said, and campuses likely will begin offering their counselors the option to work remotely as well — something that private practices and some medical systems have done for years.
"You have to work hard and also smart," Foltz said. "You need numbers, but you also need the right mix of counselors. There is a constant need to have culturally competent staff members on a university campus."
Jamie Taylor received two letters from the Missouri Department of Social Services Family Support Division that began, "Good news," before stating that she was denied Medicaid coverage. Her income exceeded the state's limits for the federal-state public health insurance program for people with low incomes.
Missouri officials now blame the incongruous greeting for the decidedly bad news on a computer programming error, but it was just the beginning of Taylor's ongoing saga trying to get assistance from Missouri's safety net. Taylor, now 41, spent hours on the phone, enduring four-hour hold times and dropped calls, and received delayed mailings of time-sensitive documents to her home in Sikeston.
Taylor's struggles are not uncommon in Missouri or even nationally. Instead, they are part of what the National Association of State Medicaid Directors' executive director, Matt Salo, called "the next great challenge that government has to solve." Namely: the extremely outdated technology used by a humongous web of government agencies, from local public health to state-run benefits programs.
Although many people like Taylor struggled with these systems before the pandemic began, COVID-19 exposed just how antiquated and ill equipped many of them were to handle unprecedented demand. For example, while private-sector businesses beefed up the ability to stream TV shows, created apps for food deliveries, and moved offices online, public health officials tracked COVID outbreaks by fax machine.
In response to the new light shed on these long-standing problems, momentum is building for government tech updates. The pandemic also has created once-in-a-generation pools of money from pandemic relief funding and higher-than-expected tax revenues to fund such projects.
President Joe Biden issued an executive order in December calling on benefits enrollment to be streamlined. State lawmakers are urging the use of unspent COVID relief money to address the issue.
That's critical because outdated information systems can trigger ripple effects throughout the public benefits system, according to Jessica Kahn, who is a partner at the McKinsey & Co. consulting firm and previously led data and systems for Medicaid at the Centers for Medicare & Medicaid Services. One example: Online benefits applications that are not user-friendly can push more applicants to call phone help lines. That can strain call centers that, like many industries, are having difficulty meeting staffing needs.
Some states are already eyeing improvements:
In Wisconsin, Democratic Gov. Tony Evers has directed up to $80 million to replace the state's dated unemployment infrastructure.
Kansas is among the first states working with the U.S. Department of Labor's newly created Office of Unemployment Insurance Modernization set to manage $2 billion in funds appropriated by the American Rescue Plan Act last year.
In Missouri, a bipartisan state Senate committee recommended using surplus COVID relief funds for the Department of Social Services to update the benefit computer systems. The department also has proposed using federal pandemic money on artificial intelligence to process some 50,000 documents per week. That work is currently done manually at an average of two minutes per document.
Recent history suggests these fixes may be easier said than done. More than 10 years ago, the Obama administration invested $36 billion to develop and mandate the national use of electronic health records for patients. Despite the billions invested, the digitizing of patients' records has been plagued with problems. Indeed, to get reimbursed by their insurers for purchases of rapid COVID tests, a requirement imposed by the Biden administration, patients have to fax or mail in claims and receipts.
The Affordable Care Act also offered a chance to improve state technology infrastructure, according to Salo. From 2011 through 2018, the federal government offered to cover up to 90% of the funds necessary to replace or update old Medicaid IT systems, many of which were programmed in COBOL, a computer programming language dating to 1959. Those updates could have benefited other parts of the government safety net as well, since state-administered assistance programs frequently share technology and personnel.
But, Salo said, the ACA required these new Medicaid computer systems to communicate directly with the healthcare exchanges created under the law. States faced varying degrees of trouble. Tennessee applications got lost, leading to a class-action lawsuit. Many states never fully overhauled their benefit systems.
During the pandemic, tech issues have become impossible to ignore. Amid the early lockdowns, hundreds of thousands of people waited months for unemployment help as states such as New Jersey, Kansas, and Wisconsin struggled to program newly created benefits into existing software. Local and state vaccine registration sites were plagued with so many problems they were inaccessible to many, including blind people, a violation of federal disability laws.
Underfunding is nothing new to public health and safety-net programs. Public officials have been reluctant to allocate the money necessary to overhaul dated computer systems — projects that can cost tens of millions of dollars.
Missouri's safety-net technology woes are well documented. A 2019 McKinsey assessment of the state's Medicaid program noted the system was made up of about 70 components, partially developed within a mainframe from 1979, that was "not positioned to meet both current and future needs." In a 2020 report for the state, Department of Social Services staffers called the benefits enrollment process "siloed" and "built on workarounds," while participants called it "dehumanizing."
Taylor has experienced that frustration. Eight years ago, a mysterious medical condition forced her out of the workforce, causing her to lose her job-based health insurance. At various times, she's been diagnosed with ulcerative colitis, Crohn's disease, gastritis, inflammatory bowel disease, and gastroparesis, but lacking insurance and unable to qualify for Medicaid, she was forced to seek treatment in emergency rooms. She has been hospitalized repeatedly over the years, including for 21 days combined since July. She estimated her medical debt tops $100,000.
When Taylor applied for Medicaid over the phone again in October, she received a rejection letter within days.
At a loss because her family of three's $1,300 monthly income now falls within state income limits since Missouri's 2021 expansion of Medicaid, Taylor reached out to state Rep. Sarah Unsicker. The Democratic lawmaker represents a district 145 miles away in St. Louis, but Taylor had seen her championing Medicaid expansion on Twitter. After Unsicker queried the department, she learned that a default application answer had disqualified Taylor from getting Medicaid because it incorrectly listed her as receiving Medicare — the public insurance designed for older Americans that Taylor does not qualify for.
"Within 24 hours, I had a message back from Sarah saying that another letter was on the way and I should be much happier with the answer," Taylor recalled.
Finally enrolled in Medicaid, Taylor is now struggling to get nutrition assistance, called SNAP, which in Missouri is processed through a separate eligibility system. The programs have similar income requirements, but Taylor was not able to verify her income over the phone for SNAP as she could for Medicaid.
Instead, she received a letter on Nov. 26 requesting her tax returns by Nov. 29. By the time she was able to locate and email those documents on Dec. 1, she had been denied. Every call to sort out the issue has been met with hold times upward of four hours or queues so full that her call gets dropped.
Medicaid and SNAP applications are combined in 31 states, according to a 2019 analysis from the Code for America advocacy group. But not in hers.
"It just doesn't make sense to me why Medicaid can verify my tax income over the phone, but SNAP needs me to send them a copy of the whole thing," Taylor said.
Eventually, she gave up and started the whole process over. She's still waiting.
Dina Halperin had been cooped up alone for three weeks in her nursing home room after her two unvaccinated roommates were moved out at the onset of the omicron surge. "I'm frustrated," she said, "and so many of the nursing staff are burned out or just plain tired."
The situation wasn't terrifying, as it was in September 2020, when disease swept through the Victorian Post Acute facility in San Francisco and Halperin, a 63-year-old former English as a Second Language teacher, became severely ill with COVID. She spent 10 days in the hospital and required supplemental oxygen. Since the pandemic began, 14 residents of the nursing home have died of COVID, according to state figures.
Over time, Victorian Post Acute has gotten better at dealing with the virus, especially its milder omicron form, which accounted for 31 cases as of Jan. 27 but not a single illness serious enough to cause hospitalization, said Dan Kramer, a spokesperson for Victorian Post Acute. But the ongoing safety protocols at this and other nursing homes — including visitor restrictions and frequent testing of staff and residents — can be soul-killing. For the 1.4 million residents of the nation's roughly 15,000 nursing homes, the rules have led to renewed isolation and separation.
"I'm feeling very restless," Halperin said. She has Cushing's syndrome, an autoimmune disease that caused tumors and a spinal fracture that left her mostly wheelchair-bound and unable to live independently. Although she has residual COVID symptoms, including headaches and balance problems, Halperin, who has lived in the nursing home for nine years, is usually quite sociable. She volunteers in the dining room, helps other residents with their activities, and shops and runs errands during her frequent forays outside the building.
But COVID infections are again spiking at nursing homes around the country. In California, 792 new nursing home cases were reported on Jan. 19, compared with fewer than 11 cases on Dec. 19, 2021. However, the death rates are not nearly as bad as they were during pre-vaccine COVID surges. From Dec. 23, 2021, to Jan. 23, 2022, 217 nursing home residents died of COVID in California. By contrast, in just the week from Christmas 2020 to New Year's Day 2021, 555 people died at nursing homes in the state.
To keep nursing home residents out of overwhelmed hospitals, California public health officials have mandated masking and imposed strict vaccination and testing requirements for visitors and staffers at the homes, said Dr. Zachary Rubin, a medical epidemiologist with the Los Angeles County Department of Public Health. "Our approach is to prevent cases from coming into the facility, stop transmission once it gets into the facility, and to prevent serious outcomes," he said.
Rubin acknowledged that some of these policies may seem like they're doing more harm than good — but only temporarily, he hopes.
The omicron surge has created staffing shortages as nurses and aides call in sick, and the strict testing requirements have the effect of limiting visits by friends and relatives who provide crucial care and contact for some residents, bathing and grooming them, overseeing their diets and medications, and making sure they're not being neglected.
Nationally, a federal mandate requires all workers in federally funded facilities to be fully vaccinated by Feb. 28. The deadline was extended to March 15 for 24 states that challenged the requirement in court. Last month, California issued a similar order, which also requires nursing home staffers to receive booster shots by Feb. 1.
However, while vaccination rates for staff members and residents are high in California (96% for staffers and 89% for residents), only 52% of nursing home workers and 68% of their residents in California have received boosters, according to Jan. 23 figures from the Centers for Disease Control and Prevention. At Victorian Post Acute, 95% of staff and 92% of residents had been vaccinated with boosters as of Jan. 27, Kramer said.
Across the state, many unvaccinated staff members claim religious exemptions. Others say they can't get vaccinated at their workplaces and don't have time to get shots on their own, said Deborah Pacyna, a spokesperson for the California Association of Health Facilities, which represents the nursing home industry in Sacramento.
"We're going to have to deal with that as the deadline approaches. If they're not boosted, does that mean they can't work?" she asked. "That would be an extraordinary development."
The state hasn't indicated how it will enforce mandates, especially for boosters, said Tony Chicotel, a staff attorney for California Advocates for Nursing Home Reform.
Most nursing home visitors, as of Jan. 7, must be fully vaccinated — including boosters, if eligible — under California Department of Public Health requirements. Guests also must present a negative COVID test taken within one or two days, depending on the type of test. The federal government is sending four rapid tests to families that request them, and the state of California has distributed 300,000 tests to nursing homes.
That's "better than nothing," said Pacyna, but it may not be enough for families that visit several times a week. Some experts think any policy that tends to restrict visitors sets the wrong priority.
"Limiting visitation is bad psychologically," said Charlene Harrington, a professor emeritus in social and behavioral sciences at the University of California-San Francisco who has done extensive research on nursing homes. Numerous studies have shown that social isolation and loneliness can lead to depression, worsening dementia and cognitive decline, anxiety, a loss of the will to live — and increased risk of mortality from other causes.
Besides, Harrington said, most nursing home outbreaks are caused by infected staffers, who often work multiple jobs because of the low pay.
Maitely Weismann visits her 79-year-old mother, who has dementia and uses a wheelchair, at a Los Angeles residential facility several times a week. Her mother deteriorated considerably during the initial lockdown, and Weismann is doing her best to slow her mother's decline, she said.
"It's much harder to do this during the pandemic because there are so many barriers to entry," said Weismann, co-founder of the advocacy group Essential Caregivers Coalition. "Family caregivers can't actually tell if a loved one is doing OK through a screen, or a window, or a phone call."
Responding to the critical healthcare staff shortages, the CDC issued emergency guidelines in December — California followed suit in January — that allow workers who have been exposed to or test positive for COVID to return to work if they are asymptomatic.
It's a short-term, last-resort measure, Rubin said. "It's just not possible to adequately take care of people and do the daily activities of living if you don't have a nurse or caregivers. You just can't operate the place."
On one recent day alone — Jan. 24 — more than 10,300 workers were out sick — which is roughly a tenth of the combined staff in California nursing homes. To deal with the crunch, said Pacyna, "we're asking people to work extra hours, knowing that the peak is near and this isn't going to last forever."
In the meantime, families continue to worry about their loved ones. "When residents are isolated, they become completely dependent on the caregivers in the facility," Weismann said. "But when staff stops coming to work, the system falls apart."
Dina Halperin had been cooped up alone for three weeks in her nursing home room after her two unvaccinated roommates were moved out at the onset of the omicron surge. "I'm frustrated," she said, "and so many of the nursing staff are burned out or just plain tired."
The situation wasn't terrifying, as it was in September 2020, when disease swept through the Victorian Post Acute facility in San Francisco and Halperin, a 63-year-old former English as a Second Language teacher, became severely ill with COVID. She spent 10 days in the hospital and required supplemental oxygen. Since the pandemic began, 14 residents of the nursing home have died of COVID, according to state figures.
Over time, Victorian Post Acute has gotten better at dealing with the virus, especially its milder omicron form, which accounted for 31 cases as of Jan. 27 but not a single illness serious enough to cause hospitalization, said Dan Kramer, a spokesperson for Victorian Post Acute. But the ongoing safety protocols at this and other nursing homes — including visitor restrictions and frequent testing of staff and residents — can be soul-killing. For the 1.4 million residents of the nation's roughly 15,000 nursing homes, the rules have led to renewed isolation and separation.
"I'm feeling very restless," Halperin said. She has Cushing's syndrome, an autoimmune disease that caused tumors and a spinal fracture that left her mostly wheelchair-bound and unable to live independently. Although she has residual COVID symptoms, including headaches and balance problems, Halperin, who has lived in the nursing home for nine years, is usually quite sociable. She volunteers in the dining room, helps other residents with their activities, and shops and runs errands during her frequent forays outside the building.
But COVID infections are again spiking at nursing homes around the country. In California, 792 new nursing home cases were reported on Jan. 19, compared with fewer than 11 cases on Dec. 19, 2021. However, the death rates are not nearly as bad as they were during pre-vaccine COVID surges. From Dec. 23, 2021, to Jan. 23, 2022, 217 nursing home residents died of COVID in California. By contrast, in just the week from Christmas 2020 to New Year's Day 2021, 555 people died at nursing homes in the state.
To keep nursing home residents out of overwhelmed hospitals, California public health officials have mandated masking and imposed strict vaccination and testing requirements for visitors and staffers at the homes, said Dr. Zachary Rubin, a medical epidemiologist with the Los Angeles County Department of Public Health. "Our approach is to prevent cases from coming into the facility, stop transmission once it gets into the facility, and to prevent serious outcomes," he said.
Rubin acknowledged that some of these policies may seem like they're doing more harm than good — but only temporarily, he hopes.
The omicron surge has created staffing shortages as nurses and aides call in sick, and the strict testing requirements have the effect of limiting visits by friends and relatives who provide crucial care and contact for some residents, bathing and grooming them, overseeing their diets and medications, and making sure they're not being neglected.
Nationally, a federal mandate requires all workers in federally funded facilities to be fully vaccinated by Feb. 28. The deadline was extended to March 15 for 24 states that challenged the requirement in court. Last month, California issued a similar order, which also requires nursing home staffers to receive booster shots by Feb. 1.
However, while vaccination rates for staff members and residents are high in California (96% for staffers and 89% for residents), only 52% of nursing home workers and 68% of their residents in California have received boosters, according to Jan. 23 figures from the Centers for Disease Control and Prevention. At Victorian Post Acute, 95% of staff and 92% of residents had been vaccinated with boosters as of Jan. 27, Kramer said.
Across the state, many unvaccinated staff members claim religious exemptions. Others say they can't get vaccinated at their workplaces and don't have time to get shots on their own, said Deborah Pacyna, a spokesperson for the California Association of Health Facilities, which represents the nursing home industry in Sacramento.
"We're going to have to deal with that as the deadline approaches. If they're not boosted, does that mean they can't work?" she asked. "That would be an extraordinary development."
The state hasn't indicated how it will enforce mandates, especially for boosters, said Tony Chicotel, a staff attorney for California Advocates for Nursing Home Reform.
Most nursing home visitors, as of Jan. 7, must be fully vaccinated — including boosters, if eligible — under California Department of Public Health requirements. Guests also must present a negative COVID test taken within one or two days, depending on the type of test. The federal government is sending four rapid tests to families that request them, and the state of California has distributed 300,000 tests to nursing homes.
That's "better than nothing," said Pacyna, but it may not be enough for families that visit several times a week. Some experts think any policy that tends to restrict visitors sets the wrong priority.
"Limiting visitation is bad psychologically," said Charlene Harrington, a professor emeritus in social and behavioral sciences at the University of California-San Francisco who has done extensive research on nursing homes. Numerous studies have shown that social isolation and loneliness can lead to depression, worsening dementia and cognitive decline, anxiety, a loss of the will to live — and increased risk of mortality from other causes.
Besides, Harrington said, most nursing home outbreaks are caused by infected staffers, who often work multiple jobs because of the low pay.
Maitely Weismann visits her 79-year-old mother, who has dementia and uses a wheelchair, at a Los Angeles residential facility several times a week. Her mother deteriorated considerably during the initial lockdown, and Weismann is doing her best to slow her mother's decline, she said.
"It's much harder to do this during the pandemic because there are so many barriers to entry," said Weismann, co-founder of the advocacy group Essential Caregivers Coalition. "Family caregivers can't actually tell if a loved one is doing OK through a screen, or a window, or a phone call."
Responding to the critical healthcare staff shortages, the CDC issued emergency guidelines in December — California followed suit in January — that allow workers who have been exposed to or test positive for COVID to return to work if they are asymptomatic.
It's a short-term, last-resort measure, Rubin said. "It's just not possible to adequately take care of people and do the daily activities of living if you don't have a nurse or caregivers. You just can't operate the place."
On one recent day alone — Jan. 24 — more than 10,300 workers were out sick — which is roughly a tenth of the combined staff in California nursing homes. To deal with the crunch, said Pacyna, "we're asking people to work extra hours, knowing that the peak is near and this isn't going to last forever."
In the meantime, families continue to worry about their loved ones. "When residents are isolated, they become completely dependent on the caregivers in the facility," Weismann said. "But when staff stops coming to work, the system falls apart."
In a few short months, states have gone from donating surplus rapid COVID-19 tests to states with shortages to hoarding them as demand driven by the spike in cases strains supplies.
Last January, North Dakota had amassed 2.7 million Abbott Laboratories BinaxNOW rapid COVID tests from the federal government — roughly 3½ tests for each person in the state of 775,000 people.
The state had so many COVID tests that it donated a total of 1 million of them to Montana and Pennsylvania as part of a sharing program among states that formed when the delta variant was the dominant strain and COVID outbreaks rippled across the nation in waves. But now that omicron has turned the entire nation into a coronavirus hot spot and driven up demand for tests everywhere, that system has been upended.
Some states are holding on to expired tests for use as a last resort. In early January, North Dakota was one of them, with a stockpile of 600,000 expired rapid tests.
"I want to make sure that our state is covered," said Nicole Brunelle, North Dakota's chief nursing officer. "The entire nation is fighting for these tests."
Jasmine Reed, a spokesperson for the Centers for Disease Control and Prevention, said the state exchange program has stopped operating, and while federal health officials are working to get it going again, the timing is unclear. "Once COVID-19 and its variants began to ramp up and more testing was needed, states no longer had a surplus to provide extra tests," Reed said.
By early January, some states, including Montana and Indiana, had depleted their inventory of rapid COVID tests for distribution. Along with North Dakota, Florida and Maryland have held on to expired tests in hopes the federal government would extend the tests' shelf life.
The inevitable result: States have gone from cooperation to competition.
"Emergency management and federal assistance across the country is built on the idea that we won't have a need everywhere at once," said Ken Sturrock, a Colorado-based regional emergency coordinator for the U.S. Department of Health and Human Services.
The state test exchange program was created amid concerns that tests would expire unused. Federal health agencies built an online platform that states could use to relay what they had or needed.
Some states have gone outside the program to exchange tests. For example, Mississippi donated more than 79,000 tests to Pennsylvania in November, said Jim Craig, senior deputy for the Mississippi State Department of Health.
For the states that participated, the exchange program was effective in identifying and shipping tests to places in need across the country through much of 2021. Colorado, for instance, received tests from five states from May through August of last year, bringing in about 340,000 kits that were close to expiring.
Some donations went farther. When nationwide demand for testing diminished early last year, the Arkansas Department of Health couldn't find a state to take 300,000 tests close to expiring. Danyelle McNeill, a department spokesperson, said Arkansas donated the tests to India, where the delta variant was first identified, in late winter 2021.
Brunelle, North Dakota's chief nursing officer, said the state expanded access to its supply of tests to schools, businesses, health providers, and others, offering free kits and training to those who would use them. Even then, Brunelle said, the state had more tests than it could distribute before they expired.
In January 2021, North Dakota sent 250,000 tests to Montana. Demand in Montana was low at the time, but Jon Ebelt, a spokesperson for the state Department of Public Health and Human Services, said the state "did not want to turn down free tests" after supplies had been tight earlier in the pandemic.
That summer, Montana sent 51,000 of those tests to Colorado.
But by January 2022, Montana's supplies had been depleted. Health officials notified school districts that the pool of BinaxNOW test kits had run dry. The state worked through suppliers to order 650,000 tests and planned to start distributing them on Jan. 30. Montana Gov. Greg Gianforte, a Republican, blamed the Biden administration, saying it had repeatedly failed to increase testing supplies.
The Biden administration has created a website where households can sign up to receive four free tests, and officials have said tests are expected to ship within seven to 12 days of orders being placed. But that initial rollout raised access issues for some of the most vulnerable.
In fall 2021, North Dakota sent 750,000 rapid tests to the Children's Hospital of Philadelphia. Dr. David Rubin, the hospital's director of population health innovation, said the hospital distributed those supplies to a school-based testing program in southeastern Pennsylvania.
Rubin said that without the federal platform, the hospital is trying to get more tests for the program through federal agencies but that the line for them is long.
"We're starting to imagine a world with less testing right now because it's the reality," Rubin said.
In some cases, the FDA has extended the shelf life for certain tests, most recently this month when it put a 15-month life span on Abbott's at-home tests.
Amid the shortage, states have also sought permission to use outdated stock still on their shelves. Andy Owen, a spokesperson for the Maryland Department of Health, said that on Jan. 18, the FDA gave the state an additional three months to use 97,000 expired rapid tests that must be administered by a provider. That's after Florida got another three-month extension to use roughly 1 million test kits that had expired at the end of December.
The Centers for Medicare & Medicaid Services released guidelines in 2020 that allowed states to use expired tests "until non-expired supplies become available."
New Mexico Department of Health spokesperson Katy Diffendorfer said the state told a school that it could use older tests after the school's supply dwindled to outdated kits. "They desperately needed to be able to test," Diffendorfer said, adding that the state would send non-expired tests as soon as possible.
In North Dakota, which once had an abundance of tests, Brunelle said the state was starting to see access issues this winter, especially in rural places. The state has been careful about sending tests out, even within the state. North Dakota stalled its program to distribute tests to businesses, which Brunelle hopes is temporary.
"Right now, we need to keep our priority with our healthcare system, our first responders, our vulnerable populations," she said.