St. Luke's, a clinic with a staff of four in a nondescript shopping center, offers an unorthodox combination of concierge-style medicine for the well-off and charity care for the uninsured.

This article was published on Tuesday, October 26, 2021 in Kaiser Health News.

By Bernard J. Wolfson   

MODESTO, Calif. — Britta Foster and Minerva Tiznado are in different leagues as far as healthcare is concerned.

Foster, who married into the family that owns the $2.5 billion Foster Farms chicken company, has Blue Shield coverage as well as a high-octane primary care plan that gives her 24/7 digital access to her doctor for a $5,900 annual fee that also covers her husband and two of their children.

Tiznado is from Nayarit, Mexico, and has no insurance. She gets free primary care visits and steep discounts on prescription drugs, lab tests and imaging.

But Tiznado, 32, and Foster, 48, go to the same place for their care: St. Luke's Family Practice, in this Central Valley city of about 217,000. St. Luke's, a clinic with a staff of four in a nondescript shopping center, offers an unorthodox combination of concierge-style medicine for the well-off and charity care for the uninsured.

The annual fees that St. Luke's collects from Foster's family and some 550 other paying patients help cover free care for a somewhat larger number of uninsured patients, many of them, like Tiznado, Spanish-speaking immigrants who can't get Medicaid because they lack documents.

The clinic does not accept insurance of any kind but requires its paying patients to have coverage for major medical expenses outside its scope of care.

The paying patients, whom St. Luke's calls "benefactors," say they are happy to participate in this "Robin Hood" model. It gives them highly personalized care with great access to their doctors and the emotional satisfaction of supporting those less privileged, the "recipients."

Foster said it's been a "huge, huge benefit" for her family to be able to text or call their doctor at any time and be seen on short notice: "Knowing that their group is here also to serve our community makes it all feel even more important."

Tiznado, who visited the clinic one September morning for a scheduled monitoring of ovarian cysts, said St Luke's "has helped us a lot — economically and in every way. I think if we moved somewhere else, I would continue coming here."

But Tiznado and the other uninsured patients don't get the same 24/7 access that benefactors do. The two groups used separate waiting rooms until the pandemic hit.

St. Luke's is a local response to systemic U.S. healthcare problems including physician burnout, patient dissatisfaction and the fact that millions still lack care. Nearly 3.2 million Californians, including 1.3 million undocumented people, will be uninsured in 2022, although the state is gradually expanding Medicaid coverage to many immigrants. St. Luke's is part of the movement for direct primary care, an alternative for doctors fleeing insurance-dominated medical groups.

Roughly 200 direct primary care practices start up each year in the United States, and there are currently 1,581 of them employing an estimated 3,000 doctors, according to Dr. Philip Eskew, founder of DPC Frontier, which provides resources for doctors who want to make the switch. That's a tiny fraction of the nearly 209,000 primary care doctors in the U.S.

"We are indeed a small movement at this time," Eskew said.

Their biggest challenges are regulatory. If the clinics take fees from people enrolled in Medicare, for example, their doctors must forgo Medicare reimbursement anywhere they practice. And some state regulators may consider direct primary care practices to be health plans and impose terms or restrictions that make it difficult or impossible for them to operate.

Doctors in direct primary care typically charge patients a monthly or annual fee in exchange for enhanced access via phone, text or video, shorter wait times and longer face-to-face visits. And they generally don't accept insurance, thus eliminating the need to chase bills and treatment authorizations.

"In my old practice, we spent almost half our time collecting payments. I thought if we could just get rid of all that overhead, we could spend more time with patients — and it proved true," said Dr. Bob Forester, the conceptual father and co-founder of St. Luke's, who retired earlier this year.

Many direct primary care docs scoff at the high-tech investor-owned firms such as One Medical and Forward Health. They are widely viewed as direct primary care companies, but critics say they are more focused on expanding volume than on offering personalized service.

"Direct primary care is where a physician has a relationship with a patient. We do not have to be accountable to an investor, because our investors are our patients," said Dr. Maryal Concepcion, a family doctor in the remote mountain town of Arnold, California, who recently left a commercial practice to launch her own one-woman direct primary care practice.

St. Luke's paid patients must have insurance to cover hospitalization, surgeries, specialty care, imaging and prescription drugs.

The clinic is often able to find steep discounts for its uninsured patients. For example, Quest Diagnostics charges them only 10% to 15% of its regular price for lab work, said Dr. R.J. Heck, one of the two family physicians at St. Luke's and co-founder of the clinic. It often refers uninsured patients who need operations to Cirugía sin Fronteras, a reduced-rate surgery center in Bakersfield.

St. Luke's recently got a $75,000 grant for imaging, lab tests, X-rays and some prescription drugs from the Legacy Health Endowment, a local foundation. And it works with several radiology groups that provide discounts, Heck said.

Tiznado, who needs periodic ultrasounds for her ovarian cysts, said she pays around $150 for them. "If I did it in another place, it would cost between $900 and $1,200," she said.

St. Luke's nonprofit tax-exempt status encourages donations, including from local corporate benefactors such as Foster Farms and winemaker E. & J. Gallo. Some workers at donor companies are among St. Luke's uninsured patients.

Tax-exempt status also confers a benefit on paying patients: They can take a tax deduction on the portion of their annual fees they don't use for medical care. Every year, St. Luke's sends them a statement that puts a dollar value, based on Medicare prices, on the services they received.

Forester said St. Luke's arose from his concern for the uninsured and his disdain for bureaucratic systems. But "the bottom line," he said, "is that the idea for St. Luke's came in an inspired moment of prayer." He and Heck launched it over 17 years ago as a Catholic-inspired medical office.

However, while Catholic symbols adorn the walls of St. Luke's, many of its patients are not Christian, and Catholic medical doctrine is not central to its practice.

"There's nobody coming in here and looking or telling us what we should or shouldn't do," said Dr. Erin Kiesel, the clinic's other family doctor.

Kiesel said she wouldn't prescribe an abortion, but she would tell somebody where to go if they asked — which nobody has.

Heck and Kiesel took big pay cuts to come to St. Luke's. Kiesel makes about $60,000 less a year than in her previous practice. Having more time with patients, less paperwork and better work-life balance more than offsets the lower pay, she said.

Patients cited the personal relationships they've built with their St. Luke's providers.

Paul Neumann, a patient of Heck's for 25 years who followed him to St. Luke's, said that relationship has been a godsend.

He told of returning from a trip to Rome in 2009 with a case of walking pneumonia. When his wife called Heck the next morning, he came to the house immediately.

Neumann, 84, pays St. Luke's well north of $10,000 a year for himself, his wife and his son's family.

"I'd be happy to write a check twice as large," he said.

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

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

The mandates mark the first time nursing homes have been told how to spend payments from the government programs and residents.

This article was published on Monday, October 25, 2021 in Kaiser Health News.

By Susan Jaffe  

Nursing homes receive billions of taxpayers' dollars every year to care for chronically ill frail elders, but until now, there was no guarantee that's how the money would be spent.

Massachusetts, New Jersey and New York are taking unprecedented steps to ensure they get what they pay for, after the devastating impact of COVID-19 exposed problems with staffing and infection control in nursing homes. The states have set requirements for how much nursing homes must spend on residents' direct care and imposed limits on what they can spend elsewhere, including administrative expenses, executive salaries and advertising and even how much they can pocket as profit. Facilities that exceed those limits will have to refund the difference to the state or the state will deduct that amount before paying the bill.

The states' mandates mark the first time nursing homes have been told how to spend payments from the government programs and residents, according to Cindy Mann, who served as Medicaid chief in the Obama administration.

With this strategy, advocates believe, residents won't be shortchanged on care, and violations of federal quality standards should decrease because money will be required to be spent on residents' needs. At least that's the theory.

"If they're not able to pull so much money away from care and spend it on staffing and actual services, it should make a big difference," said Charlene Harrington, professor emeritus at the University of California-San Francisco's School of Nursing who has spent four decades studying nursing home reimbursement and regulation. "I would expect the quality of care would improve substantially."

"The actual effect will be just the opposite," said Andrew Aronson, president and CEO of the Healthcare Association of New Jersey. "By trying to force providers to put more money into direct care, you're creating a disincentive for people to invest in their buildings, which is going to drive the quality down."

Next year, New York's nursing facilities will have to spend at least 70% of their total revenue —including payments from Medicaid, Medicare and private insurers — on resident care and at least 40% of that direct-care spending must pay for staff members involved in hands-on care. In Massachusetts, Gov. Charlie Baker issued rules requiring nursing homes have to spend at least 75% of all revenue on residents' care. New Jersey's law requires its nursing homes to spend at least 90% of revenue on patient care. But its state regulators have proposed that the requirement apply only to Medicaid funding. No final determination has been made.

All three states promise a boost in Medicaid payments to facilities that comply with the laws.

Harrington and other advocates say the measures are well overdue, but they are watching how regulators in each state define direct care, who qualifies as a direct care worker, what counts as revenue and whether it is reported accurately.

Jim Clyne, president and CEO of LeadingAge New York, which represents nonprofit nursing facilities, questions the legality of some provisions in New York's law. "I don't think there's any doubt that it will end up in court," he said.

Aronson said the mandate is based on a misconception — that nursing homes could have kept COVID-19 out of their facilities if they had only marshaled their resources properly. "As long as COVID is in our communities, it will also find its way into our facilities," he said.

But poor infection control practices resulting from inadequate staffing have been the most common violation cited by nursing home inspectors over the years, according to a study released last year by the federal Government Accountability Office. The pandemic did little to change that trend. In August 2020, a frustrated Seema Verma, then-administrator of the Centers for Medicare & Medicaid Services, warned nursing home operators that "significant deficiencies in infection control practices" were responsible for increases in COVID deaths and pleaded with them "to really double down on those practices."

"Philosophically, if a payer wants to tell the provider how to use their funds within certain parameters, I understand that, but that's not what the [New York] law does," said Clyne. "The law goes beyond that. The state is telling the provider how much of other people's money they have to spend on care also, not just the state's money."

Bills paid by Medicare or individuals should be excluded from the state mandate, along with Medicaid funds earmarked for certain purposes such as mortgage expenses, he said.

Medicaid, funded under a state and federal government partnership, provides health insurance to low-income people and typically pays for about 60% of the nursing home care nationwide, usually for long-term residents with chronic health problems. Medicare, funded by federal dollars, insures older or disabled adults, and provides about 16% of facilities' revenue. The rest comes from private Medicare Advantage and other health insurance companies, and individuals who pay for their own care.

"Nursing homes are primarily funded by public tax dollars, Medicaid or Medicare — and the public has a reason to care about how our dollars are being spent," said Milly Silva, executive vice president of 1199SEIU, the union that represents 45,000 nursing home workers in New York and New Jersey, and backed the legislation in both states.

The spending mandates are not a new idea for healthcare. The Affordable Care Act directs health insurers to spend at least 80 cents of every dollar in premiums to pay for beneficiaries' healthcare needs. What remains can be spent on administrative costs, executive salaries, advertising and profits. Companies that exceed the limit must refund the difference to beneficiaries.

Harrington disagrees with industry officials who want to exclude Medicare dollars from the calculation of how much nursing homes must spend on direct care. That would leave a large source of profits untouched, she said, and allow them to use that money "however you want."

Medicare paid nursing homes $27.8 billion in fiscal year 2019, according to the Medicare Advisory Payment Commission, an independent panel appointed by Congress.

Even if only the Medicaid money is affected, though, there's still a big problem in the direct care spending mandate, said Aronson. "Ninety percent of facilities are losing money," he said, because Medicaid payments don't cover the cost of care. In New Jersey, he added, the shortfall is $40 a day per resident.

But some state lawmakers are not convinced. "Medicaid payments may not fully cover the cost of care, but somehow for-profit nursing homes are making money," said New York state lawmaker Richard Gottfried, who has chaired the Assembly health committee since 1987. More than two-thirds of the state's nursing homes operate as for-profit businesses and have been able to hide some of those profits in associated businesses they also own and then hire, he said. They can "use real estate gimmicks and shell contracts to make it look like they're spending money when what they are really doing is just siphoning income into their own pockets," he said. The use of such "related parties" payments has occurred across the country for several years.

To uncover the facilities' true income and expenses, the state mandates require accurate documentation. "If they file false documentation, that will be a felony," said Gottfried.

The spending mandates come at a challenging time for the industry, which is still recovering from the worst of the pandemic and facing a staffing shortage and low occupancy. But New York Assembly member Ron Kim, whose uncle died in a nursing home from presumed COVID, said lawmakers should be able to tell nursing home operators how to spend taxpayers' money. "If they choose to rely on public dollars to deliver care, they take on a greater responsibility," he said. "It's not like running a hotel."

Susan Jaffe: Jaffe.KHN@gmail.com, @SusanJaffe

 

By Amanda Michelle Gomez October 21, 2021

After four people were murdered in one week in early September — all in the same Washington, D.C., neighborhood — residents made a plea for help.

"We've been at funerals all week," said Janeese Lewis George, a City Council member who represents the neighborhood. "What can we do as a community?"

She was speaking to dozens of people at a vigil site, a tree adorned with teddy bears and candles along a street lined with rowhouses. According to police, the area, known as Brightwood Park, has been plagued by several dozen violent, gun-related crimes over the past year. When Lewis George asked whether the crowd had known anyone who'd been shot, most people raised their hands.

Earlier that day, five council members joined Lewis George in asking Mayor Muriel Bowser for assistance — not in the form of more police, but from the city's first-ever gun violence prevention director, Linda Harllee Harper.

Harllee Harper knows Brightwood Park, having grown up near the heavily Black and Latino neighborhood, which has recently begun to attract white residents, too. She knows the local stories, both good and bad. Some families have lived there for decades, witnessing generational poverty and government neglect. During the 1990s, parts of it were considered a "war zone" because of rampant drug- and gang-related activity. She still lives in the same ward with her husband and son, who plays basketball at the local recreation center with the children of a recent murder victim.

Her investment in finding a solution is clear. "It's not a new development," Harllee Harper told KHN. "My view of gun violence is shaped by how much loss I've experienced. I've had friends who have been killed and I also have had young people that I have worked with be killed."

D.C. began 2021 with two crises: the coronavirus pandemic and a gun violence epidemic. To respond to the latter, Bowser advanced plans to draw on lessons learned from the former. She started by creating a position, one that anti-gun violence groups had long requested and became too urgent to ignore: gun violence prevention director. Enter Harllee Harper, who was appointed Jan. 28.

About three weeks later, the mayor declared a public health emergency over gun violence and created an "emergency operations center" that mirrored the city's COVID-19 response. No part of the U.S. has been spared from an increase in murders during the pandemic. And in the nation's capital the murder toll is outpacing last year's, which reached 198, a 16-year high. Per capita, that's about 29 murders per 100,000 residents.

The City Council has directed unprecedented funding to support the efforts.

Harllee Harper, 56, started her 20-plus-year career at D.C. Public Schools as a substance abuse prevention and intervention coordinator. Most recently, she was senior deputy director for the D.C. Department of Youth Rehabilitation Services, where she helped overhaul the agency.

"I've run programs before, but this was a different level of limelight" than something she would have signed up for on her own, she said.

Nine months into this new role, Harllee Harper's most powerful tool is the mayor's initiative, Building Blocks. Drawing on public health strategies to contain the spread of gun violence, it's designed to treat the immediate symptoms and root causes of community violence.

Its workers operate almost as contact tracers, whose methods have become familiar during the pandemic. They enter targeted communities to form relationships and connect high-risk residents to violence interrupters, who are trained to de-escalate conflict. They also arrange for resources, like drug addiction treatment and housing assistance. The idea is to reach the small number of people who engage in dangerous behavior and invest in them and their neighborhood.

"Hopelessness combined with a gun, combined with substance abuse, is a really bad combination. And I think that's what we are seeing right now," said Harllee Harper.

Building Blocks is up and running in about a third of its targeted 151 blocks — 2% of the city — that were connected to 41% of last year's gunshot-related crimes last year. (Brightwood Park is not on this list but is included in the city's fall crime prevention initiative run by the police department.)

These diverse neighborhoods are home to people who tend to be poorer and lack access to resources and opportunities. Statistics among COVID and murder victims look similar: The same neighborhoods were hit hardest and the vast majority of deaths have befallen Black people.

D.C. stemmed the spread of COVID far more efficiently than the nation as a whole, in part through government action. The city's crash course on public health during the pandemic could mean it's better situated to address gun violence. "We can explain certain things through this public health lens and people can understand it a bit better," said David Muhammad, executive director of the National Institute for Criminal Justice Reform.

He said D.C.'s approach is unique and Harllee Harper's position is rare. "If you claim to want to reduce gun violence in your city, prove it. Whose full-time job is it in your city to do that? In most cities, it is zero," he said. "Don't tell me the police chief. That's a small portion of their job."

For the few dozen cities that have some sort of anti-violence czar, the position is relatively new. Richmond, California, is an exception, with an agency dedicated to reducing gun violence since 2008. Richmond's Office of Neighborhood Safety has been heralded as a model. By 2013, Richmond went from more than 40 homicides a year to 16, according to Giffords Law Center to Prevent Gun Violence — its lowest number in three decades.

Harllee Harper's position is housed not within the public safety agency but the city administrator's office, presumably affording her more authority and oversight of government programs.

And Building Blocks created a mobile app with which its employees can flag requests during walk-throughs of select neighborhoods. An employee could make a request using the city's "311" service line to repair a streetlight that is out, for example, and the agency responsible would prioritize it because it came from Building Blocks.

There's no guarantee these interventions will work, though multiple studies have shown positive outcomes of violence interrupters or infrastructure improvements, such as cleaning and transforming vacant lots and abandoned buildings.

But Daniel Webster, director of the Johns Hopkins Center for Gun Violence Prevention and Policy in Baltimore, said it's important to track successes and failures because efforts like the one Harllee Harper is spearheading don't "always work in all places" and there are lessons to learn when they don't.

"We can't expect the workers to just perform miracles," said Webster.

While expectations are high, Harllee Harper's success depends on whether government and business leaders will respond with the same urgency as they did when the health director requested action.

"The biggest hurdle really is getting all of government to buy into a new day and a new way to get things done," said council member Charles Allen, who chairs a committee that created Harllee Harper's position. "Bureaucracy is not nimble."

"My colleagues in the sister agencies across the city, when Building Blocks calls, they are very, very responsive," said Harllee Harper. "We're working together to create performance metrics for agencies related to gun violence prevention."

Some residents remain skeptical. Residents of the first Building Blocks neighborhood said the follow-up continues to lag. Jamila White, an elected member of the Advisory Neighborhood Commission, said she had several conversations with Harllee Harper and gave her a tour to point out the needs, including quick fixes like adding or fixing streetlights and regular street-sweeping. White has yet to see expedited results, she said, but respects Harllee Harper and admits that no one could address all the issues, many rooted in poverty, alone.

"There's a lot of shared agreement. But you know, having a shared agreement and having political will and power to do something is a different thing," said White.

Amanda Michelle Gomez: amandag@kff.org, @amanduhgomez

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