Scientists Search for Cause of Mysterious COVID-Related Inflammation in Children

KFF Health News, October 20, 2021

More than 5,200 of the 6.2 million U.S. children diagnosed with COVID have developed MIS-C.

By Liz Szabo October 20, 2021

Like most other kids with COVID, Dante and Michael DeMaino seemed to have no serious symptoms.

Infected in mid-February, both lost their senses of taste and smell. Dante, 9, had a low-grade fever for a day or so. Michael, 13, had a "tickle in his throat," said their mother, Michele DeMaino, of Danvers, Massachusetts.

At a follow-up appointment, "the pediatrician checked their hearts, their lungs, and everything sounded perfect," DeMaino said.

Then, in late March, Dante developed another fever. After examining him, Dante's doctor said his illness was likely "nothing to worry about" but told DeMaino to take him to the emergency room if his fever climbed above 104.

Two days later, Dante remained feverish, with a headache, and began throwing up. His mother took him to the ER, where his fever spiked to 104.5. In the hospital, Dante's eyes became puffy, his eyelids turned red, his hands began to swell and a bright red rash spread across his body.

Hospital staffers diagnosed Dante with multisystem inflammatory syndrome in children, or MIS-C, a rare but life-threatening complication of COVID-19 in which a hyperactive immune system attacks a child's body. Symptoms — fever, stomach pain, vomiting, diarrhea, bloodshot eyes, rash and dizziness — typically appear two to six weeks after what is usually a mild or even asymptomatic infection.

More than 5,200 of the 6.2 million U.S. children diagnosed with COVID have developed MIS-C. About 80% of MIS-C patients are treated in intensive care units, 20% require mechanical ventilation, and 46 have died.

Throughout the pandemic, MIS-C has followed a predictable pattern, sending waves of children to the hospital about a month after a COVID surge. Pediatric intensive care units — which treated thousands of young patients during the late-summer delta surge — are now struggling to save the latest round of extremely sick children.

The South has been hit especially hard. At the Medical University of South Carolina Shawn Jenkins Children's Hospital, for example, doctors in September treated 37 children with COVID and nine with MIS-C — the highest monthly totals since the pandemic began.

Doctors have no way to prevent MIS-C, because they still don't know exactly what causes it, said Dr. Michael Chang, an assistant professor of pediatrics at Children's Memorial Hermann Hospital in Houston. All doctors can do is urge parents to vaccinate eligible children and surround younger children with vaccinated people.

Given the massive scale of the pandemic, scientists around the world are now searching for answers.

Although most children who develop MIS-C were previously healthy, 80% develop heart complications. Dante's coronary arteries became dilated, making it harder for his heart to pump blood and deliver nutrients to his organs. If not treated quickly, a child could go into shock. Some patients develop heart rhythm abnormalities or aneurysms, in which artery walls balloon out and threaten to burst.

"It was traumatic," DeMaino said. "I stayed with him at the hospital the whole time."

Such stories raise important questions about what causes MIS-C.

"It's the same virus and the same family, so why does one child get MIS-C and the other doesn't?" asked Dr. Natasha Halasa of the Vanderbilt Institute for Infection, Immunology and Inflammation.

Doctors have gotten better at diagnosing and treating MIS-C; the mortality rate has fallen from 2.4% to 0.7% since the beginning of the pandemic. Adults also can develop a post-COVID inflammatory syndrome, called MIS-A; it's even rarer than MIS-C, with a mortality rate seven times as high as that seen in children.

Although MIS-C is new, doctors can treat it with decades-old therapies used for Kawasaki disease, a pediatric syndrome that also causes systemic inflammation. Although scientists have never identified the cause of Kawasaki disease, many suspect it develops after an infection.

Researchers at Boston Children's Hospital and other institutions are looking for clues in children's genes.

In a July study, the researchers identified rare genetic variants in three of 18 children studied. Significantly, the genes are all involved in "removing the brakes" from the immune system, which could contribute to the hyperinflammation seen in MIS-C, said Dr. Janet Chou, chief of clinical immunology at Boston Children's, who led the study.

Chou acknowledges that her study — which found genetic variants in just 17% of patients — doesn't solve the puzzle. And it raises new questions: If these children are genetically susceptible to immune problems, why didn't they become seriously ill from earlier childhood infections?

Some researchers say the increased rates of MIS-C among racial and ethnic minorities around the world — in the United States, France and the United Kingdom — must be driven by genetics.

Others note that rates of MIS-C mirror the higher COVID rates in these communities, which have been driven by socioeconomic factors such as  high-risk working and living conditions.

"I don't know why some kids get this and some don't," said Dr. Dusan Bogunovic, a researcher at the Icahn School of Medicine at Mount Sinai who has studied antibody responses in MIS-C. "Is it due to genetics or environmental exposure? The truth may lie somewhere in between."

A Hidden Enemy and a Leaky Gut

Most children with MIS-C test negative for COVID, suggesting that the body has already cleared the novel coronavirus from the nose and upper airways.

That led doctors to assume MIS-C was a "postinfectious" disease, developing after "the virus has completely gone away," said Dr. Hamid Bassiri, a pediatric infectious diseases specialist and co-director of the immune dysregulation program at Children's Hospital of Philadelphia.

Now, however, "there is emerging evidence that perhaps that is not the case," Bassiri said.

Even if the virus has disappeared from a child's nose, it could be lurking — and shedding — elsewhere in the body, Chou said. That might explain why symptoms occur so long after a child's initial infection.

Dr. Lael Yonker noticed that children with MIS-C are far more likely to develop gastrointestinal symptoms — such as stomach pain, diarrhea and vomiting — than the breathing problems often seen in acute COVID.

In some children with MIS-C, abdominal pain has been so severe that doctors misdiagnosed them with appendicitis; some actually underwent surgery before their doctors realized the true source of their pain.

Yonker, a pediatric pulmonologist at Boston's MassGeneral Hospital for Children, recently found evidence that the source of those symptoms could be the coronavirus, which can survive in the gut for weeks after it disappears from the nasal passages, Yonker said.

In a May study in The Journal of Clinical Investigation, Yonker and her colleagues showed that more than half of patients with MIS-C had genetic material — called RNA — from the coronavirus in their stool.

The body breaks down viral RNA very quickly, Chou said, so it's unlikely that genetic material from a COVID infection would still be found in a child's stool one month later. If it is, it's most likely because the coronavirus has set up shop inside an organ, such as the gut.

While the coronavirus may thrive in our gut, it's a terrible houseguest.

In some children, the virus irritates the intestinal lining, creating microscopic gaps that allow viral particles to escape into the bloodstream, Yonker said.

Blood tests in children with MIS-C found that they had a high level of the coronavirus spike antigen — an important protein that allows the virus to enter human cells. Scientists have devoted more time to studying the spike antigen than any other part of the virus; it's the target of COVID vaccines, as well as antibodies made naturally during infection.

"We don't see live virus replicating in the blood," Yonker said. "But spike proteins are breaking off and leaking into the blood."

Viral particles in the blood could cause problems far beyond upset stomachs, Yonker said. It's possible they stimulate the immune system into overdrive.

In her study, Yonker describes treating a critically ill 17-month-old boy who grew sicker despite standard treatments. She received regulatory permission to treat him with an experimental drug, larazotide, designed to heal leaky guts. It worked.

Yonker prescribed larazotide for four other children, including Dante, who also received a drug used to treat rheumatoid arthritis. He got better.

But most kids with MIS-C get better, even without experimental drugs. Without a comparison group, there's no way to know if larazotide really works. That's why Yonker is enrolling 20 children in a small randomized clinical trial of larazotide, which will provide stronger evidence.

Rogue Soldiers

Dr. Moshe Arditi has also drawn connections between children's symptoms and what might be causing them.

Although the first doctors to treat MIS-C compared it to Kawasaki disease — which also causes red eyes, rashes and high fevers — Arditi notes that MIS-C more closely resembles toxic shock syndrome, a life-threatening condition caused by particular types of strep or staph bacteria releasing toxins into the blood. Both syndromes cause high fever, gastrointestinal distress, heart muscle dysfunction, plummeting blood pressure and neurological symptoms, such as headache and confusion.

Toxic shock can occur after childbirth or a wound infection, although the best-known cases occurred in the 1970s and '80s in women who used a type of tampon no longer in use.

Toxins released by these bacteria can trigger a massive overreaction from key immune system fighters called T cells, which coordinate the immune system's response, said Arditi, director of the pediatric infectious diseases division at Cedars-Sinai Medical Center.

T cells are tremendously powerful, so the body normally activates them in precise and controlled ways, Bassiri said. One of the most important lessons T cells need to learn is to target specific bad guys and leave civilians alone. In fact, a healthy immune system normally destroys many T cells that can't distinguish between germs and healthy tissue in order to prevent autoimmune disease.

In a typical response to a foreign substance — known as an antigen — the immune system activates only about 0.01% of all T cells, Arditi said.

Toxins produced by certain viruses and the bacteria that cause toxic shock, however, contain "superantigens," which bypass the body's normal safeguards and attach directly to T cells. That allows superantigens to activate 20% to 30% of T cells at once, generating a dangerous swarm of white blood cells and inflammatory proteins called cytokines, Arditi said.

This massive inflammatory response causes damage throughout the body, from the heart to the blood vessels to the kidneys.

Although multiple studies have found that children with MIS-C have fewer total T cells than normal, Arditi's team has found an explosive increase in a subtype of T cells capable of interacting with a superantigen.

Several independent research groups — including researchers at Yale School of Medicine, the National Institutes of Health and France's University of Lyon — have confirmed Arditi's findings, suggesting that something, most likely a superantigen, caused a huge increase in this T cell subtype.

Although Arditi has proposed that parts of the coronavirus spike protein could act like a superantigen, other scientists say the superantigen could come from other microbes, such as bacteria.

"People are now urgently looking for the source of the superantigen," said Dr. Carrie Lucas, an assistant professor of immunobiology at Yale, whose team has identified changes in immune cells and proteins in the blood of children with MIS-C.

Uncertain Futures

One month after Dante left the hospital, doctors examined his heart with an echocardiogram to see if he had lingering damage.

To his mother's relief, his heart had returned to normal.

Today, Dante is an energetic 10-year-old who has resumed playing hockey and baseball, swimming and rollerblading.

"He's back to all these activities," said DeMaino, noting that Dante's doctors rechecked his heart six months after his illness and will check again after a year.

Like Dante, most other kids who survive MIS-C appear to recover fully, according to a March study in JAMA.

Such rapid recoveries suggest that MIS-C-related cardiovascular problems result from "severe inflammation and acute stress" rather than underlying heart disease, according to the authors of the study, called Overcoming COVID-19.

Although children who survive Kawasaki disease have a higher risk of long-term heart problems, doctors don't know how MIS-C survivors will fare.

The NIH and Centers for Disease Control and Prevention have launched several long-term trials to study young COVID patients and survivors. Researchers will study children's immune systems to uncover clues to the cause of MIS-C, check their hearts for signs of long-term damage and monitor their health over time.

DeMaino said she remains far more worried about Dante's health than he is.

"He doesn't have a care in the world," she said. "I was worried about the latest cardiology appointment, but he said, 'Mom, I don't have any problems breathing. I feel totally fine.'"

Liz Szabo: lszabo@kff.org, @LizSzabo

California's Mental Health Crisis: What Went Wrong? And Can We Fix It?

KFF Health News, October 20, 2021

Experts discuss the challenges that arise when the state puts insurance companies in charge of delivering critical health services.

This article was published on Wednesday, October 20, 2021 in Kaiser Health News.

Gov. Gavin Newsom is steering a major transformation of California's behavioral health care system, with much at stake in the years ahead.

On Oct. 6, the Sacramento-based publication Capitol Weekly invited KHN's Angela Hart to moderate an expert panel tackling the origins of the state's broken system and potential solutions ahead.

The lively discussion featured healthcare leaders with deep experience in the political, provider and research aspects of mental health and addiction.

The panelists were Dr. Elaine Batchlor, CEO of MLK Community Healthcare; former state Sen. Jim Beall, a Santa Clara County Democrat who spearheaded mental health legislation during his tenure in the legislature; Michelle Doty Cabrera, executive director of the County Behavioral Health Directors Association of California; and Janet Coffman, a researcher and faculty member with Healthforce Center at the University of California-San Francisco.

The discussion illuminated challenges that arise when the state puts insurance companies in charge of delivering critical health services, while also providing an overview of the ambitious policy changes the Newsom administration is pushing.

Click here to find a podcast of the full event. Hart hosts the first of three panels.

'They Treat Me Like I'm Old and Stupid': Seniors Decry Health Providers' Age Bias

KFF Health News, October 20, 2021

Nearly 20% of Americans age 50 and older say they have experienced discrimination in healthcare settings.

This article was published on Wednesday, October 20, 2021 in Kaiser Health News.

By Judith Graham  

Joanne Whitney, 84, a retired associate clinical professor of pharmacy at the University of California-San Francisco, often feels devalued when interacting with healthcare providers.

There was the time several years ago when she told an emergency room doctor that the antibiotic he wanted to prescribe wouldn't counteract the kind of urinary tract infection she had.

He wouldn't listen, even when she mentioned her professional credentials. She asked to see someone else, to no avail. "I was ignored and finally I gave up," said Whitney, who has survived lung cancer and cancer of the urethra and depends on a special catheter to drain urine from her bladder. (An outpatient renal service later changed the prescription.)

Then, earlier this year, Whitney landed in the same emergency room, screaming in pain, with another urinary tract infection and a severe anal fissure. When she asked for Dilaudid, a powerful narcotic that had helped her before, a young physician told her, "We don't give out opioids to people who seek them. Let's just see what Tylenol does."

Whitney said her pain continued unabated for eight hours.

"I think the fact I was a woman of 84, alone, was important," she told me. "When older people come in like that, they don't get the same level of commitment to do something to rectify the situation. It's like 'Oh, here's an old person with pain. Well, that happens a lot to older people.'"

Whitney's experiences speak to ageism in healthcare settings, a long-standing problem that's getting new attention during the COVID pandemic, which has killed more than half a million Americans age 65 and older.

Ageism occurs when people face stereotypes, prejudice or discrimination because of their age. The assumption that all older people are frail and helpless is a common, incorrect stereotype. Prejudice can consist of feelings such as "older people are unpleasant and difficult to deal with." Discrimination is evident when older adults' needs aren't recognized and respected or when they're treated less favorably than younger people.

In healthcare settings, ageism can be explicit. An example: plans for rationing medical care ("crisis standards of care") that specify treating younger adults before older adults. Embedded in these standards, now being implemented by hospitals in Idaho and parts of Alaska and Montana, is a value judgment: Young peoples' lives are worth more because they presumably have more years left to live.

Justice in Aging, a legal advocacy group, filed a civil rights complaint with the U.S. Department of Health and Human Services in September, charging that Idaho's crisis standards of care are ageist and asking for an investigation.

In other instances, ageism is implicit. Dr. Julie Silverstein, president of the Atlantic division of Oak Street Health, gives an example of that: doctors assuming older patients who talk slowly are cognitively compromised and unable to relate their medical concerns. If that happens, a physician may fail to involve a patient in medical decision-making, potentially compromising care, Silverstein said. Oak Street Health operates more than 100 primary care centers for low-income seniors in 18 states.

Emogene Stamper, 91, of the Bronx in New York City, was sent to an under-resourced nursing home after becoming ill with COVID in March. "It was like a dungeon," she remembered, "and they didn't lift a finger to do a thing for me." The assumption that older people aren't resilient and can't recover from illness is implicitly ageist.

Stamper's son fought to have his mother admitted to an inpatient rehabilitation hospital where she could receive intensive therapy. "When I got there, the doctor said to my son, 'Oh, your mother is 90,' like he was kind of surprised, and my son said, "You don't know my mother. You don't know this 90-year-old," Stamper told me. "That lets you know how disposable they feel you are once you become a certain age."

At the end of the summer, when Stamper was hospitalized for an abdominal problem, a nurse and nursing assistant came to her room with papers for her to sign. "Oh, you can write!" Stamper said the nurse exclaimed loudly when she penned her signature. "They were so shocked that I was alert, it was insulting. They don't respect you."

Nearly 20% of Americans age 50 and older say they have experienced discrimination in healthcare settings, which can result in inappropriate or inadequate care, according to a 2015 report. One study estimates that the annual health cost of ageism in America, including over- and undertreatment of common medical conditions, totals $63 billion.

Nubia Escobar, 75, who emigrated from Colombia nearly 50 years ago, wishes doctors would spend more time listening to older patients' concerns. This became an urgent issue two years ago when her longtime cardiologist in New York City retired to Florida and a new physician had trouble controlling her hypertension.

Alarmed that she might faint or fall because her blood pressure was so low, Escobar sought a second opinion. That cardiologist "rushed me — he didn't ask many questions and he didn't listen. He was sitting there talking to and looking at my daughter," she said.

It was Veronica Escobar, an elder law attorney, who accompanied her mother to that appointment. She remembers the doctor being abrupt and constantly interrupting her mother. "I didn't like how he treated her, and I could see the anger on my mother's face," she told me. Nubia Escobar has since seen a geriatrician who concluded she was overmedicated.

The geriatrician "was patient," Nubia Escobar told me. "How can I put it? She gave me the feeling she was thinking all the time what could be better for me."

Pat Bailey, 63, gets little of that kind of consideration in the Los Angeles County, California, nursing home where she's lived for five years since having a massive stroke and several subsequent heart attacks. "When I ask questions, they treat me like I'm old and stupid and they don't answer," she told me in a telephone conversation.

One nursing home resident in every five has persistent pain, studies have found, and a significant number don't get adequate treatment. Bailey, whose left side is paralyzed, said she's among them. "When I tell them what hurts, they just ignore it or tell me it's not time for a pain pill," she complained.

Most of the time, Bailey feels like "I'm invisible" and like she's seen as "a slug in a bed, not a real person." Only one nurse regularly talks to her and makes her feel she cares about Bailey's well-being.

"Just because I'm not walking and doing anything for myself doesn't mean I'm not alive. I'm dying inside, but I'm still alive," she told me.

Ed Palent, 88, and his wife, Sandy, 89, of Denver, similarly felt discouraged when they saw a new doctor after their long-standing physician retired. "They went for an annual checkup and all this doctor wanted them to do was ask about how they wanted to die and get them to sign all kinds of forms," said their daughter Shelli Bischoff, who discussed her parents' experiences with their permission.

"They were very upset and told him, 'We don't want to talk about this,' but he wouldn't let up. They wanted a doctor who would help them live, not figure out how they're going to die."

The Palents didn't return and instead joined another medical practice, where a young doctor barely looked at them after conducting cursory examinations, they said. That physician failed to identify a dangerous staphylococcus bacterial infection on Ed's arm, which was later diagnosed by a dermatologist. Again, the couple felt overlooked, and they left.

Now they're with a concierge physician's practice that has made a sustained effort to get to know them. "It's the opposite of ageism: It's 'We care about you and our job is to help you be as healthy as possible for as long as possible,'" Bischoff said. "It's a shame this is so hard to find."

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.

KFF's Kaiser Health News and The John A. Hartford Foundation will hold a 90-minute interactive web event on ageism in healthcare beginning at noon Eastern Time on Thursday, Oct. 21. Join us for a frank, practical and empowering conversation about this pervasive, systemic problem of bias, discrimination or stereotyping based on age.

Judith Graham: khn.navigatingaging@gmail.com, @judith_graham

Hygienists Brace for Pitched Battles With Dentists in Fights Over Practice Laws

KFF Health News, October 19, 2021

Illinois trails many other states in allowing dental hygienists unsupervised contact with patients. In Colorado, on the extreme end, hygienists can own practices.

This article was published on Tuesday, October 19, 2021 in Kaiser Health News.

By Giles Bruce 

This year, the Illinois legislature was considering measures to expand oral health treatment in a state where millions of people live in dental care deserts.

But when the Illinois State Dental Society met with key lawmakers virtually for its annual lobbying day in the spring, the proposals to allow dental hygienists to clean the teeth of certain underprivileged patients without a dentist seemed doomed.

State Sen. Dave Syverson, a Republican legislative leader, warned against the bills even if they sounded minor. "It's just getting the camel's nose under the tent," he said in an audio recording of the meeting obtained by KHN. "We'll have, before long, hygienists doing the work that, if they wanted to do, they should have gone to dental school for."

The senator added that he missed "the reception and the dinners that you guys host" and the "nice softball questions that I usually get" from the dental society's past president, who happens to be his first cousin.

The bills never made it out of committee.

The situation in Illinois is indicative of the types of legislative dynamics that play out when lower-level healthcare providers such as dental hygienists, nurse practitioners and optometrists try to gain greater autonomy and access to patients. And the fate of those Illinois bills illustrates the power that lobbying groups such as the Illinois dental society have in shaping policies on where health professionals can practice and who keeps the profits.

"There's always a struggle," said Margaret Langelier, a researcher for the Center for Health Workforce Studies at the University of Albany in New York. "We have orthopedists fighting podiatrists over who can take care of the ankle. We have psychiatrists fighting with clinical psychologists about who can prescribe and what they can prescribe. We have nurses fighting pharmacists over injections and vaccinations. It's the turf battles."

In 2015, the Illinois Dental Practice Act was revised to let hygienists treat low-income patients on Medicaid or without insurance in "public health settings" — such as schools, safety-net clinics and programs for mothers and children — without a dentist examining them or being on-site. Besides doing cleanings, the hygienists can take X-rays, place sealants and apply fluoride.

This year, lawmakers proposed bills that would have expanded those settings to include nursing homes, prisons and mobile dental vans.

The state dental society, in a memo to members, wrote that the fact it took years for hygienists to develop their public health training program shows "they have no real interest in providing access to care to needy patients."

As it is, Illinois trails many other states in allowing dental hygienists unsupervised contact with patients. In Colorado, on the extreme end, hygienists can own practices.

"It's just the nature of the beast politically in Illinois. The dental lobby isn't as strong in those other states," noted Margaret Vaughn, executive director of the Illinois Rural Health Association. "The Illinois State Dental Society is much more powerful, and they're much more organized than the hygienists are politically."

From 2015 to 2019, the dental society spent more than $55,000 on lobbying, for its annual gathering and meals for lawmakers, typically hosted at a swanky Italian spot near the state Capitol in Springfield, according to public disclosures. In the same period, the Illinois Dental Hygienists Association reported spending nothing in its lobbying reports. (Neither group has listed any expenditures since the beginning of 2020.)

The dental society has two exclusive lobbyists and four lobbying firms on contract, state records show. The hygienist group, meanwhile, employs no lobbyists and contracts with just one firm.

The dental society donates generously to both Republicans and Democrats. Its political action committee had nearly $742,000 in cash on hand as of June 30, according to Reform for Illinois' Sunshine Database. While the PAC has given $4,050 since 2014 to support the campaigns of state Sen. Melinda Bush, a Democrat who sponsored the nursing home bill, the database shows it has contributed far more to help elect Syverson, the senator who spoke at the conference. It has given more than $123,000 to his campaigns since 1999, with bigger annual gifts than to Bush.

"I receive contributions from many groups on both sides of issues," Syverson emailed KHN. "They are not contributing to influence my vote on a particular bill. In fact, if a PAC sent a check while we were negotiating or voting on an issue they are involved with, I would not accept it."

The hygienists' PAC gave $1,100 to the campaign committee of Bush, according to the database, but nothing to Syverson. Bush did not respond to requests for comment.

"The bottom line is, if you don't have a healthy mouth, you don't have a healthy body," said Ann Lynch, director of advocacy and education for the American Dental Hygienists Association. "It only makes sense that we would remove any barriers that do not allow a licensed healthcare provider to practice at the top of their scope."

But Dave Marsh, a lobbyist for the Illinois dental society, said it would be dangerous for hygienists to treat nursing home residents, who are often elderly and sick.

"I just don't feel anybody with a two-year associate's degree is medically qualified to correct your health," Marsh added. "They're trained to clean teeth. They take a sharp little instrument and scrape your teeth. That's what they do. That's all they do."

He said the problem is not a shortage of dental professionals but, rather, a lack of dentists who can afford to accept Medicaid patients — and "nobody wants to raise taxes to actually be able to reimburse" dentists at higher rates.

He also pointed to the scarcity of research on the benefits of dental hygienists having more professional freedom.

Langelier acknowledged that little academic literature exists on this topic, in part because of inadequate data collection on oral health. But in 2016, a study she co-authored in Health Affairs found that, as dental hygienists gained more autonomy, fewer people had teeth removed because of decay or disease. And she said Medicaid data shows more children had dental visits as hygienists expanded their practice.

"I don't want this to be acrimonious," said Laura Scully, chair of the access-to-care committee of the state hygienists association. "I would like it to be more of a collaboration, because truly that's what this is about: getting together so we can help more people."

Karen Webster works as a dental hygienist for the Tri City Health Partnership, a free clinic in St. Charles, Illinois, about 40 miles west of Chicago. In the past, she could only briefly screen patients before scheduling them with one of the center's volunteer dentists, often months out.

"Imagine if you had a toothache and the doctor couldn't see you that day," she said, noting that her patients have low incomes. "They can't afford the services. They wait till something hurts."

But since becoming a public health dental hygienist, Webster now does immediate cleanings, takes X-rays she sends to teledentists for exams, and applies a solution called silver diamine fluoride that can halt tooth decay.

"The whole thing, start to finish, it's just a lot more efficient," she said.

Children With Disabilities Face Special Back-to-School Challenges

KFF Health News, October 19, 2021

The return to school raises particular health issues for children with disabilities who are at increased risk for serious bouts of COVID-19.

This article was published on Tuesday, October 19, 2021 in Kaiser Health News.

By Heidi de Marco   

LOS ANGELES — Christopher Manzo, a boy with curly brown hair and bright-blue-and-yellow glasses, has lived a third of his five years at home because of the pandemic.

And he is more than ready for kindergarten.

Hand in hand with his mother, Martha Manzo, he walks into the Blind Children's Center, a low-rise building nestled among apartment complexes in East Hollywood. In the brightly colored hallway, filled with paintings of animals, Manzo kneels to hug Christopher before he scurries unsteadily to his cubby.

"God take care of you and be with you," she says. "And have fun."

Born with congenital hydrocephalus that damaged his brain and left him with severely impaired vision, cognitive difficulties and a lack of coordination, Christopher hasn't missed only school the past 18 months — he's missed out on a host of vital occupational, physical and language therapies, as well as socialization with other kids.

At home, Christopher couldn't look at a computer screen long enough to attend therapies or classes on Zoom, said Manzano, in an interview conducted in Spanish. "He would strain his eyes, look away, and his attention would falter," she said. "He couldn't devote the same attention as a kid without disabilities.''

Christopher "could have advanced much more" since the pandemic hit if he hadn't missed so much school, said Manzano, who is 36 and has three other children, ages 12, 10 and 8, whom she also has had to guide through months of home-schooling.

Yet the return to school raises particular health issues for Christopher and other children with disabilities who are at increased risk for serious bouts of COVID-19, said his pediatrician at Children's Hospital Los Angeles, Dr. Liza Mackintosh. Though he isn't immunosuppressed, Christopher has trouble coughing up secretions, which leaves him vulnerable to lung and respiratory infections, she said.

Compared with other adults in contact with children, his parents, teachers and therapists "have to be more vigilant about mask-wearing, hand hygiene and social distancing," she said.

In short, Manzo was deeply worried about the threat of COVID exposure Christopher faced at school. But it was a risk she felt he could no longer avoid, to get on with his life.

Trying to learn from home was "really hard on him," Manzo said. "He couldn't understand why he couldn't go to school or the park or to his therapies."

"I know COVID is still among us, but I also can't keep him at home like he's a crystal bubble and protect him," she said. "He needs contact with other kids and his teachers."

The challenges faced by Christopher during the pandemic have been shared by many of the roughly 7 million U.S. children and young adults, ages 3 to 21, with special needs. Online platforms usually don't work for them. For example, Christopher needs to feel Braille letters to read — he can't do that on a computer screen.

Students with disabilities had "sort of this double hit where it was very hard to access school services and very challenging to continue to work on developing new skills," said Dr. Irene Koolwijk, a specialist in developmental-behavioral pediatrics at UCLA Health.

It took a lot of preparation to get Christopher and the 40 or so other children attending the Blind Children's Center back into the building of the private, infant-to-kindergarten school. All the children are blind or visually impaired, and most also have disorders ranging from autism and albinism to cerebral palsy and epilepsy. The school practices reverse mainstreaming, in which a few children with typical development share the classroom with children with disabilities.

Months before the school doors reopened, the center started teaching the students about wearing masks.

"Little by little, we started training the kids to wear masks on Zoom. It started off with the duration of a song, then two songs," said Rosalinda Mendiola, adaptive services specialist at the Blind Children's Center. "Our goal was that by the time we opened back up, they would be used to them."

But it was difficult. Many children with special needs have a hard time wearing their masks and understanding the concept of distancing, said Mackintosh. Children with some forms of autism, in particular, have sensory issues that make it bothersome to have something on their faces.

"Children learn the most from modeling. They watch their parents, their teachers, their friends," said Bianca Ciebrant, the center's director of early childhood education. "But children who are visually impaired and blind can't see the mask-wearing. That's probably one of the harder barriers."

It took Christopher seven months to start wearing a mask. "At first, he didn't even want it in front of his face," said Manzo. "He started to slowly accept it when he saw his siblings wear it."

To reopen in September, the school also adopted new COVID safety protocols. All 30 staff members are vaccinated, temperature checks are performed at drop-off, and parents aren't allowed inside classrooms.

All students wear masks except for three of them who have limited motor ability and couldn't safely remove a mask or don't understand the mask-wearing process "and therefore it becomes sensory overload and behavior breakdown," Ciebrant said.

There are six kids in each class, overseen by a teacher and two assistants. Christopher needs someone near him to remind him where to walk and to hold on to the banister for balance.

With so many staffers around, "creating a shield of vaccinated individuals around the child is important to making the transition back to school as safe as possible," said Dr. Christine Bottrell Mirzaian, a pediatrician at Children's Hospital Los Angeles.

Martha and her husband, Fausto Manzo, were vaccinated last March, and their 12-year-old daughter, Samantha, also has been immunized against COVID.

"Our health is important to be able to continue taking care of him," Martha Manzo said.

On a recent Wednesday, Christopher wore a teddy bear mask and a Ryan's World backpack to school. This is his last year at the center. When he started, he was only 2 and hadn't learned to walk.

"He has received a lot of help," Manzo said. "His movements have improved, and his communication skills."

Christopher toddles around the playground during recess and greets his friends with a wave. "His balance is off, but he's walking now," his mother said. "I always wanted to see him run and explore."

School staff members were happy to have their students back.

"We all felt this little warmth in our heart to hear their voices back in the hallway, whether it was crying or laughing or talking to their friends," said Ciebrant. "This is what we've been waiting for, to hear those moments."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Heidi de Marco: heidid@kff.org, @Heidi_deMarco

What Will It Take to Boost Vaccinations? The Scene From Kentucky's Back Roads

KFF Health News, October 18, 2021

Kentucky is in the midst of a COVID-19 wildfire sparing no part of the state; new case counts topped 4,000 a day for much of September, before easing somewhat this month.

This article was published on Monday, October 18, 2021 in Kaiser Health News.

By Sarah Varney   

SMILAX, Ky. — In the end it was the delta variant that drove Rose Mitchell, 89, down the winding mountain road to the Full Gospel Church of Jesus Christ to get the shot. Her pastor, Billy Joe Lewis, had told his congregation that, No, ma'am, a COVID vaccine would not leave the "mark of the beast" nor rewrite their genetic codes.

Mitchell, who has known the deaths of eight of her 13 children over the years, was done taking chances with the virus stealing up the hollers along Cutshin Creek.

"That stuff's getting so bad, I was afraid to not take it," she said, sitting in her daughter's car in the church parking lot. "I said, 'Well, if all the rest of them are going to take it, I'll take it too.'"

Kentucky is in the midst of a COVID-19 wildfire sparing no part of the state; new case counts topped 4,000 a day for much of September, before easing somewhat this month. Hospital intensive care units are still at capacity in some regions, with COVID patients occupying half the beds. Gov. Andy Beshear has called the situation "dire."

Across the nation, older people have been steadfast takers of the COVID vaccines: About 95% of people 65 and older have received at least one shot. But geographic variations cloud that math. Older Kentuckians in rural hamlets far from Louisville and Lexington are trailing in vaccination, with rates as low as 55% in Wayne County, on the Tennessee state line.Bottom of Form

While seniors are still more likely to be vaccinated than younger adults in Kentucky, the simple truth of the pandemic is that older people who forgo the shots face a far greater chance of severe sickness and death. People 60 and older account for nearly 90% of the 9,184 COVID-related deaths in Kentucky. Residents 80 and older account for 41% of deaths.

In Leslie County, in the foothills of the rugged Pine Mountain ridge that anchors the state's eastern coalfields, gravel roads wind through thick forests blanketed with kudzu vines. House by house, church by church, public health workers are trying to outsmart the fantastical tales about the COVID vaccines spread on Facebook and overcome the everyday hurdles of financial hardship and isolation.

"Some of our older people don't have access to vehicles because their family works," said Maxine Shepherd, a regional health coordinator for Leslie County and four-decade-long member of Full Gospel Church. Even for those with a car, gas is expensive, she said, and trips from secluded hollers to town are rationed out carefully.

While Kentuckians watched the devastating early months of the pandemic from afar, COVID has long since made its arrival — and it hasn't spared the church on Cutshin Creek. In recent weeks, Pastor Lewis held a funeral service for a 53-year-old unvaccinated former coal miner, suspended Sunday services after more members fell ill, and with heavy heart canceled Homecoming, a cherished yearly gathering of area churches that marks the fall foliage with a celebration of the gospel and shared faith.

Local health agencies have been eager to enroll churches in the all-hands-on-deck vaccination effort; older residents are more likely to attend religious services, and in communities like Smilax, ministers are trusted advisers.

Some church leaders have refrained, afraid of offending congregants in a state where distrust of government intrusion runs deep. But not Lewis, who helped build Full Gospel Church on a rare flat parcel of land in 1972 and has led it ever since. With a smooth pelt of silver hair and a luminous smile, Lewis spends long stretches of the day in prayer, and he says God told him to protect his flock.

When "Sister Maxine" from the regional health department suggested a drop-in vaccine clinic in the church parking lot, Lewis was all in favor. He promoted it from the pulpit and on the church's must-read Facebook page.

Some church leaders in Kentucky have refrained from promoting COVID vaccination, afraid of offending congregants. But Pastor Billy Joe Lewis, leader of the Full Gospel Church of Jesus Christ in Smilax, says God told him to protect his flock. He promoted vaccination from the pulpit and on the church's lively Facebook page.

"We've still got to use common sense," he said. "Anything that can ward off suffering and death, I think, is a wonderful thing."

Vexed by the slow uptake in vaccinations by some Americans, President Joe Biden has mandated shots for healthcare workers in facilities such as hospitals and nursing homes, as well as for federal workers and employees of large companies. While the exact timing and details of the private-sector mandates are still being hammered out, the specter of coercion outrages many Kentuckians, particularly in Appalachia, where government directives have been met with derision.

"We do not like to be shoved," said David McKenzie, who grew up in Louisa, a once-booming coal town on the West Virginia border, and now owns the local nursing home. "We resent it, and we shove back."

Opposition to the vaccines in Lawrence County, where the vaccination rate is 39%, is not overtly political so much as willful. "They're fearful of 'the Man,'" McKenzie said. "The Man could be your employer, it could be the government, it could be a newspaper reporter." People who boasted about refusing the vaccines cannot change their minds, or "they'll look like they're weak, or they caved to the Man."

In nearby Salyersville, the virulence of the delta variant has shaken some holdouts. Santana Salyers, 22, braved torrential rain to get her shot at the county health department, a one-story building on a stretch of freshly paved road. In her third trimester of pregnancy, she feared the hospital would not let her hold her newborn if she wasn't vaccinated. Salyers works at the IGA grocery store and says to vax or not to vax comes up there almost every day. "I'm a fence-straddler," she said. But around town, "you're either against it or for it."

Turnout for the Salyersville health fair was muted by the remnants of a tropical storm, but a few dozen people still showed up to get their shots. In the waiting room, vaccine takers received $25 Walmart cards and a chance to win a Fitbit or Instant Pot. The prizes were a big draw.

James Shepherd, who is both the town's mayor and director of the Magoffin County Health Department, bemoans the county's 44% vaccination rate: "In a small community like this, they make up their mind 'yes' or 'no,' and that's it." What will it take to boost vaccinations? "A miracle," he said with an exasperated laugh.

Shepherd's close friend Carter Conley, the beloved captain of the county rescue squad, died last month of COVID, despite being vaccinated. Conley's death has been deeply felt around town, but also has given fuel to those who see vaccination as pointless.

Doubts about the vaccines' effectiveness extend to nursing homes in Kentucky despite the persistent correlations between nursing home outbreaks and low vaccination rates among staff.

On a mid-September weekday in Danville, a small city southwest of Lexington, residents at the Landmark of Danville Rehabilitation and Nursing Center sat on a quaint covered porch playing a game of 20 questions with the activities staff. Although 80% of the residents in the facility were fully vaccinated as of September, according to the Centers for Medicare & Medicaid, that was true for just 28% of healthcare personnel, who dash out and back at lunchtime ferrying takeout fast food.

A short drive away, the city's other nursing home, the Danville Centre for Health and Rehabilitation, also had a staff vaccination rate of 28% in September, according to federal records. (A month later, staff vaccination rates at both facilities are still below 60%.)

The unprotected workforce does not faze one man who is moving his elderly father into Landmark. The man, who works as a registered nurse at the local hospital, and a family friend accompanying him did not want to give their names, but they doubt the vaccines' efficacy.

The man's parents were vaccinated in March but fell ill with COVID in August, he said. His mother was put on a ventilator and died; his father was still in the hospital recovering and would soon be moved to the nursing home.

The facility's low staff vaccination rate is "not necessarily pertinent," he said, since his father would be receiving "end-of-life care." His companion said she personally knew four people who died of COVID and that two had been vaccinated and two had not. These cases, she said, "don't get reported because they don't fit the narrative."

Standing on the porch amid festive fall decorations, Landmark's administrator, Cindy Hollins, declined to discuss what might account for her staff's low uptake and politely asked a reporter to leave.

In Louisa, three hours east of Danville, David McKenzie believes the high rates of vaccination among residents and staff at his Jordan Center will be a selling point. "I advertise I'm the safest nursing home in the state of Kentucky to live and work in," he said.

McKenzie and his sister lived in the nursing home as kids; their parents opened the home and couldn't find another house to rent when the town was overflowing with coal miners. He learned to play piano from a resident, down a few fingers from diabetes, who had once played in Duke Ellington's band.

Last winter, COVID ravaged the nursing home for months, infecting nearly every resident. An employee's 33-year-old daughter, who didn't want the vaccine, was buried in early September; then a former employee, who had quit to work at a hospital that didn't require vaccination, died.

As soon as vaccines became available, McKenzie and his staff went room to room, explaining the science to residents. Only one family refused. Then he gathered the staff, many shaken by the loss of residents who were family members and friends.

Now, nearly every resident of the Jordan Center is vaccinated with three shots, and the staff vaccination rate hovers at 85%. But the holdouts keep McKenzie on edge.

"I sat over here on this front porch until 2 o'clock in the morning talking to two of the nurses that don't want to vaccinate," McKenzie said. "One has been here for 37 years and the other for 15 years. They're dug in. They're adamant."

Testing staff members who refuse to get vaccinated falls to Misty Robertson, a registered nurse who has worked at the facility for decades. She views every interaction as a chance to educate her co-workers about why they should get the shot. "I'm not mean about it," she said. "I say, 'I really don't want you to be on a vent and die.'"

Robertson's father, who lived at the Jordan Center, died of COVID in January. Her entire family is vaccinated, including her three children and her husband, who works at Walmart. Everyone except her twin sister, a receptionist for a local pediatrician. She tells Robertson COVID is fake and "it's all because of Biden."

"I get mad," said Robertson. She vehemently disputes the conspiracy theories circulating through the town's social networks, but, she said with a sour laugh, that she sometimes goes too far. "I was put in Facebook jail."

McKenzie's public stance has made him a pariah in some quarters, too. A customer attacked him at Walmart and threatened to wait for him in the parking lot. The darkened mood has carved the town into opposing camps, and he thinks Biden's vaccine mandates will just stiffen that divide.

Certainly, they are proving too much for some of his nursing home staffers. Many of the unvaccinated workers at the Jordan Center are on the same shift, and McKenzie fears he may lose his entire night crew.

"They told me Sunday night they were going to leave healthcare and work at Tractor Supply," he said, "where they can make more money per hour."

Sarah Varney: svarney@kff.org, @SarahVarney4

Watch: Going Beyond the Script of 'Dopesick' and America's Real-Life Opioid Crisis

KFF Health News, October 18, 2021

The Hulu series dovetails with the broader reality KFF's journalists and analysts have been documenting in their work for the past few years.

This article was published on Monday, October 18, 2021 in Kaiser Health News.

KHN and policy colleagues at our parent organization KFF teamed up with Hulu for a discussion of America's opioid crisis, following the Oct. 13 premiere of the online streaming service's new series "Dopesick."

The discussion explored how the series' writers worked with journalist Beth Macy, author of the book "Dopesick: Dealers, Doctors, and the Drug Company That Addicted America," and showrunner Danny Strong to create and fact-check scripts and develop characters. It quickly moved on to a deeper discussion of how the fictionalized version of the opioid epidemic portrayed in the Hulu series dovetailed with the broader reality KFF's journalists and analysts have been documenting in their work for the past few years.

Providing perspective on the role of public health and treatment were KHN correspondent Aneri Pattani, who has reported extensively on opioid policy, substance use and mental health, and KFF senior policy analyst Nirmita Panchal, whose analytical work focuses on mental health and substance use.

The forum was moderated by Chaseedaw Giles, audience engagement editor and digital strategist at KHN who has written about hip-hop music's relationship with opioid abuse. It was filmed in KFF's Washington, D.C., conference center to an audience of no one (courtesy of COVID-19).

You can read a transcript of the forum by clicking here.

 

'An Arm and a Leg': Hello? We Spend 12M Hours a Week on the Phone With Insurers

KFF Health News, October 18, 2021

In many cases, the companies are not actually getting paid to provide insurance.

This podcast was published on Monday, October 18, 2021 in Kaiser Health News.

By Dan Weissmann

Can't see the audio player? Click here to listen.

After Stanford professor Jeffrey Pfeffer got back surgery years ago, he kept a file folder labeled "Blue Shield Troubles."

When Pfeffer got an offer to collaborate with the polling company Gallup, he suggested a study on how much time Americans spend on the phone with their health insurers. Gallup agreed.

Their finding: We spend about 12 million hours a week calling our health insurance. (They also found that, as workers, calling our health insurance companies means we're more likely to miss work, and to be more checked-out and burned-out on the job.)

And given all that … it's important to know as much as possible about who we're actually on the phone with when we make those calls. Like, how do they make money? What are the incentives?

Here's something few of us know: In many cases, the companies are not actually getting paid to provide insurance. If you get your insurance through work, your employer probably "self-insures." (That's true for about two-thirds of all workers, and more than 90% of people who work for companies with more than 1,000 employees.)

But it isn't obvious if your job self-insures. You'll have an insurance card that says Cigna or United or Aetna etc. But you're operating in a different universe. For instance, self-funded plans are governed by federal law, so your state insurance commission can't step in and help. And that's just a start. 

In this episode, we start to get our bearings on that different universe. We talk to Pfeffer, to one of our favorite insurance brains, Karen Pollitz of KFF and to journalist Leslie Walker, whose reporting for the podcast "Tradeoffs" indicates that when companies are playing their role in "self-insured" setups, they can get up to some shady practices. And the employers they're working for — even big, powerful outfits — often don't exercise a lot of oversight or even have a lot of leverage.

Here's a transcript for this episode.

"An Arm and a Leg" is a co-production of KHN and Public Road Productions.

To keep in touch with "An Arm and a Leg," subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you've got stories to tell about the healthcare system, the producers would love to hear from you.

To hear all KHN podcasts, click here.

And subscribe to "An Arm and a Leg" on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

How to Crush Medical Debt: 5 Tips for Using Hospital Charity Care

KFF Health News, October 15, 2021

Many people who qualify for financial assistance never apply.

This article was published on Friday, October 15, 2021 in Kaiser Health News.

By Emily Pisacreta  

What if a law passed but no one enforced it? That's essentially what has happened with one small but helpful rule about hospitals and financial assistance for medical bills.

The Affordable Care Act, the health law also known as Obamacare, requires nonprofit hospitals to make financial assistance available to low-income patients and post those policies online. Across the U.S., more than half of hospitals are nonprofit — and in some states all or nearly all hospitals are nonprofit. But many people who qualify for financial assistance — or "charity care," as it is sometimes known — never apply.

Jared Walker is helping get the word out. He founded Dollar For, an organization that directly helps people use hospital financial assistance policies to overcome unaffordable medical bills. Walker earned the public's attention early this year through a viral TikTok he made on a lark, late one night.

In the 60-second video, Walker outlines the basics of applying for hospital financial assistance, in response to a prompt that asks TikTokers to share "something you've learned that feels illegal to know."

"Most hospitals in America are nonprofits, which means they have to have financial assistance or charity care policies," he says in the video. "This is going to sound weird, but what that means is if you make under a certain amount of money the hospital legally has to forgive your medical bills."

The video outlines the basics of applying for hospital charity care, which he says he uses to "crush" medical bills.

"An Arm and a Leg," a podcast about the cost of healthcare, has been covering Walker and his organization's work since the video's viral moment, as well as the decades-long fight to establish charity care rules that preceded it.

Here are five strategies Walker endorses and shares during monthly volunteer training sessions:

1. How do you find the policy?

Walker's trick for finding a hospital's financial assistance policy is as straightforward as it gets: Google it. Enter the hospital's name, followed by "financial assistance policy" or "charity care policy." The first search results are likely to be an outline of the policy and an application to submit.

Your first instinct might be to go to your hospital's home page. But that's likely a mistake. Policies tend to be hidden from hospital website menus, according to Walker. In many states, charity care laws are more specific than what's outlined in the ACA, and hospitals may be required to display their financial assistance policies prominently.

It's rare for the policies not to be available online at all, but in some cases, Walker said, you may need to call the hospital and ask for an application.

2. Who qualifies?

Most hospital charity care policies are income-based, using percentages of the federal poverty guidelines to define eligibility. In an example, Walker showed the guidelines for St. Luke's Hospital of Kansas City, where patients earning 200% of the federal poverty guidelines were responsible for 0% of their bill. That figure was just over $2,000 a month in 2021. Those making 201% to 300% were eligible for certain discounts.

Not sure how your income compares to the federal poverty guidelines? Here's one of many helpful online calculators. Remember, your household is you, plus your spouse, plus anyone you claim as a dependent on your taxes. Roommates don't count.

Applications typically require documentation to prove your income. Hospitals ask for things like recent pay stubs, proof of unemployment, Social Security award letters and tax returns, according to Walker. Exactly which documents the hospital may ask for can vary. But a hospital can't deny you for failing to provide a document that isn't spelled out in the application.

3. In collections? You may still have time.

The IRS requires nonprofit hospitals to give patients a grace period of 240 days (about eight months) from the initial billing date to apply for financial assistance. But hospitals are allowed to send bills to collection agencies much earlier than that — often after just 120 days.

At that point, patients often feel as though they're being hounded by notifications from collection agencies. Still, patients may have months remaining to apply for financial assistance, and alerting the collection agents that an application with the hospital is in process can sometimes stop the letters.

"The hospital can take you out of collections just as easily as they put you there," Walker said.

In some cases, hospitals will forgive bills that are much older than 240 days. When in doubt, applying may be worth it even for bills that are several years old, Walker said. It does not hurt to ask for help.

4. Looks like you won't qualify? Write a letter.

If you don't qualify on income alone but you still can't afford your hospital bills, don't rule yourself out. The same applies if the hospital's financial aid policy specifies that only uninsured people qualify; you might have insurance but are still looking at giant bills you can't pay.

Walker said a letter of financial hardship attached to an application can help. In fact, he encourages each patient to attach a letter, no matter how strong their application seems.

"These are real people reading these and the letters go a long way," he said. Ultimately, each hospital is making a judgment call about who gets the assistance it is legally obligated to provide. Make your case.

5. Yes, you may need to fax it in.

While many hospitals have digital portals to enable online bill-paying, there's usually no equivalent for applying for financial assistance. Many applications offer only a mailing address. But Walker and his team have found that applications sent by mail frequently get lost.

Instead, they recommend either walking the application into the hospital and delivering it by hand or faxing it. Public libraries, packaging stores like FedEx and certain online services make faxing possible even if, like most people, you haven't used a fax machine since the late 1990s.

When it comes to accessing charity care, "you're gonna have to jump through a lot of hoops," Walker said, "but it's worth it."

Emily Pisacreta is a reporter and producer with "An Arm and a Leg," a podcast about the cost of healthcare that is co-produced with KHN.

Schedule Online Visits First? It's the Next Big Thing in Health Insurance

KFF Health News, October 15, 2021

Many insurers offering virtual-first plans hire outside firms to provide medical staff.

This article was published on Friday, October 15, 2021 in Kaiser Health News.

By Julie Appleby  

At the height of the COVID-19 pandemic, people often relied on telemedicine for doctor visits. Now, insurers are betting that some patients liked it enough to embrace new types of health coverage that encourages video visits — or outright insists on them.

Priority Health in Michigan, for example, offers coverage requiring online visits first for nonemergency primary care. Harvard Pilgrim Healthcare, selling to employers in Connecticut, Maine and New Hampshire, has a similar plan.

"I would describe them as virtual first, a true telehealth primary care physician replacement product," said Carrie Kincaid, vice president of individual markets at Priority Health, which launched its plans in January as an addition to more traditional Affordable Care Act offerings.

The often lower-premium offerings capitalize on the new familiarity and convenience of online routine care. But skeptics see a downside: the risk of overlooking something important.

"There's a gestalt of seeing a patient and knowing something is not right, such as maybe picking up early on that they have Parkinson's," or listening to their heart and discovering a murmur, said Dr. David Anderson, a cardiologist affiliated with Stanford Healthcare in Oakland, California. He said online medicine is a great tool for follow-up visits with established patients but is not optimal for an initial exam.

When enrolling in one of the new plans, patients are encouraged to select an online doctor, who then serves as the patient's first point of contact for most primary care services and can make referrals for in-person care with an in-network physician, if needed. It's possible patients never meet their online doctor in person.

Many insurers offering virtual-first plans hire outside firms to provide medical staff. The physicians may hold licenses in several states and not be located nearby. Insurers say participating online doctors can access patients' medical information and test results through the insurers' electronic medical records system or those of the third-party online staffing firm. What might prove tricky, experts warn, is transferring information from physicians, clinics or hospitals outside of an insurer's network. Sharing patient information via EMRs is challenging even for doctors operating under traditional insurance plans with in-person visits — especially moving data between different health systems or specialty practices.

The virtual-first concept was so new that Priority Health called those enrolling this year to ensure they understood how it worked. "If people were more comfortable with brick-and-mortar, they should choose other options," Kincaid said, adding that the plans have drawn 5,000 enrollees since January, a number she hopes will double next year.

Other versions of telehealth plans are available, offered by big names such as Humana, Kaiser Permanente, Oscar and UnitedHealthcare. Some emphasize but don't require that primary care starts online. Some are aimed directly at consumers. Others are sold to employers.

Oscar Virtual Care health plans, sold in several states including Texas, Florida and New York, allow patients to choose between online or in-person services.

"These are not virtual-only plans," said Marianna Spanos, an Oscar vice president and general manager of its virtual care division. "You can always opt to see a more traditional provider."

Although Kaiser Permanente uses its own in-house medical staff, most insurers rely on contracted physicians, mental health therapists and other staff members, often provided by San Francisco-based Doctor on Demand.

Doctor on Demand launched in 2013, aimed at individual consumers. Starting with a Humana contract in 2019, it has since expanded to offer staffing for several other insurers. The company, which has its own electronic medical records system, hires a range of primary care, mental health and other medical providers. Physicians must be board-certified. Pay is partly based on how many patients they see, and there is no upper limit. Some want to work part time, for example, and many work from home.

In general, virtual-first health plans may carry lower premiums or provide such financial incentives as no copays for online visits. All boast that members can get appointments quickly, sometimes within minutes. Patients with serious problems are assisted in arranging emergency help. If online physicians determine patients need a blood test, immunization or a visit with a specialist, they refer them to a local practice, clinic or specialist within the insurer's network.

As a strategy to contain costs, think HMO 2.0.

"There's more control over the patient interaction and where they get referred," said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.

Still, patients should be aware that some of these plans may allow a brick-and-mortar visit only if their virtual doctor, who may have never examined them in person, deems it necessary.

Skeptics note that many circumstances demand in-person care. One recent study estimated about 66% of primary care visits required it. For example, it's impossible to check reflexes and difficult to examine tonsils for infection virtually.

Patients in some programs, including Harvard Pilgrim's, are sent kits that can include devices like blood pressure cuffs and thermometers — though at-home medical measuring devices are often not as accurate as those used in offices. Online physicians may also ask a patient to feel for swollen lymph nodes, shine a light into their throat while on camera or take other actions to help the physician diagnose a problem.

Kincaid, at Priority Health, noted that Doctor on Demand also sets protocols on children's wellness visits, which it says must be done in person.

"It's important for children's wellness visits to get accurate height and weight measures and immunizations," Kincaid said.

When considering virtual-first plans, advocates say, patients should look closely not just at premiums but also at deductibles and copayments, which may be set at levels that discourage in-person care. Rules are varied and dizzying.

The VirtualBronze plan offered through the federal ACA marketplace in parts of Texas by Community Choice Health, for example, requires hefty patient contributions for many types of in-person visits.

Patients incur no copay for using online Doctor on Demand physicians for primary care visits or for accessing in-person preventive services as defined by the ACA, such as immunizations or cancer screenings. But for other in-person services, Community Choice's virtual plan will cost patients out-of-pocket because they pay the cost of the care until they meet an annual $8,530 deductible.

Kaiser Permanente's Virtual Complete plan offered to large employers carries no copay for online care. Patients can opt to see an in-person doctor three times a year for primary care if they're willing to pay a copay. After those three visits, any additional in-person visits are subject to a deductible.

Plans sold through federal or state marketplaces and those offered by employers must meet the ACA's requirements. That includes a range of services, from doctor visits to hospital care.

Corlette, at Georgetown, said consumers should be wary of plans that are not ACA-compliant.

She fears the advent of plans that give patients "access to online providers, but nothing else." And that, she said, "would not be considered major medical insurance."

Julie Appleby: jappleby@kff.org, @Julie_Appleby

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