En el área metropolitana de Nueva York, líderes de salud pública y trabajadores de salud dicen que están observando la tendencia a medida que las unidades de cuidados intensivos se llenan en otras partes de los Estados Unidos y en todo el mundo. Dicen que les recuerda la primavera pasada, cuando las sirenas de las ambulancias eran omnipresentes y la región era el epicentro de la pandemia de COVID-19 del país.

Todos concuerdan en que los hospitales y los proveedores de atención están en mucho mejor estado ahora que entonces, porque hay mucho más conocimiento sobre la enfermedad y cómo manejarla; hay mayor reservas de equipo de protección personal; y pruebas mucho, mucho más extendidas.

Pero al mismo tiempo, muchos trabajadores de primera línea están nerviosos por la preparación del hospital, y muchos observadores son menos optimistas sobre la efectividad de la infraestructura de rastreo y pruebas para el coronavirus.

“Creo que hay mucha ansiedad”, dijo la doctora Laura Iavicoli, jefa de preparación para emergencias de NYC Health + Hospitals, el sistema hospitalario municipal más grande del país. Iavicoli también es médica en la sala de emergencias del Elmhurst Hospital, en Queens, que llegó a definirse como “el epicentro del epicentro” en abril. Aún así, tiene una enorme confianza en el personal del sistema hospitalario municipal.

“He trabajado con ellos durante 20 años y son las personas más increíbles de las que puedo hablar, pero hay ansiedad y fatiga por COVID”, expresó.

“Estamos haciendo un poco de redistribución alrededor del sistema para darles capacidad a los pacientes de COVID, pero es muy manejable dentro del sistema”, dijo Iavicoli. “El aumento es definitivamente típico en la temporada de gripe, pero sabiendo que acabamos de entrar en la segunda ola [de COVID-19] y prediciendo lo que vendrá, somos un poco más conscientes de lo normal para asegurarnos de tener capacidad en todas nuestras 11 instalaciones”.

Sin embargo, muchas enfermeras dicen que los administradores del hospital no han aprendido lo suficiente de la experiencia de marzo y abril.

“Estamos asustadas porque tememos que vamos a tener que pasar por todo de nuevo”, dijo Michelle González, enfermera de cuidados intensivos en Montefiore Medical Center, en el Bronx, y representante sindical de NYSNA, New York, la asociación de enfermeras del estado.

González dijo que en su unidad, las enfermeras generalmente atienden a uno o dos pacientes a la vez, pero ahora tienen que cuidar tres, con el número de pacientes con COVID aumentando una vez más. Atender a cuatro pacientes o más fue algo común durante el pico de la pandemia, lo cual es abrumador, dijo Gonzál;ez. Si un paciente colapsa, varias enfermeras deben converger a la vez, dejando a otros pacientes sin supervisión.

Un vocero del sindicato dijo que Montefiore, según sus propios cálculos, tiene 476 puestos de enfermería vacantes, un número que ha aumentado en casi 100 desde 2019.

“La gerencia no está cumpliendo su promesa de cubrir las vacantes y contratar enfermeras”, dijo Kristi Barnes, de NYSNA. “En la primera semana de diciembre, tenían 188 puestos de enfermería a tiempo completo que ni siquiera habían publicado, por lo que no hay forma de que se puedan cubrir”.

La administración de Montefiore dice que eso no es correcto.

“Tenemos un acuerdo contractual con el sindicato y cumplimos con las obligaciones contractuales de ese acuerdo”, dijo Peter Semczuk, vicepresidente senior de operaciones. “Adaptamos nuestro personal de una manera flexible para satisfacer las necesidades del paciente”.

Como muchos sistemas hospitalarios, Montefiore dependió en gran medida, , de las agencias de personal temporal que ofrecen “enfermeras viajeras”. Los hospitales se están preparando para hacerlo nuevamente, pero hay demanda en todo el país.

NYSNA encabezó una a principios de diciembre, luego de que las negociaciones para tener contratos por dos años que estaban en marcha se estancaran.

Iavicoli dijo que cada una de las instalaciones de su red ha presentado solicitudes para que NYC Health + Hospitals pueda realizar un pedido preliminar ahora.

Esta vez, los planificadores de salud esperan que los neoyorquinos no lleguen a las salas de emergencia. Señalan el por COVID en los últimos dos meses en comparación con otras áreas, incluidas y .

Esperan que las pruebas mantengan la curva relativamente, que se administran de manera más generalizada en Nueva York que en casi . Aproximadamente 200,000 personas en todo el estado se hacen la prueba cada día, aproximadamente un tercio de ellas en la ciudad de Nueva York.

“Es el primer paso para interrumpir una mayor propagación”, dijo el doctor Dave Chokshi, comisionado de salud de la ciudad.

Agregó que las pruebas masivas funcionan en dos niveles: al resaltar qué áreas son zonas calientes, para que los trabajadores de salud puedan dirigirse a los residentes con mensajes “hiperlocales” sobre la propagación de COVID-19, para hacer que cambien su comportamiento y también al permitir los rastreadores de contacto comunicarse individualmente con personas recién infectadas.

“Una vez que alguien da positivo, rápidamente lo ayudamos a aislarse”, dijo Chokshi. “Tenemos una entrevista con ellos para saber quiénes son sus contactos cercanos, y luego llamamos a esos contactos y nos aseguramos de que también estén en cuarentena”.

Sin embargo, el programa de rastreo de contactos de la ciudad ha tenido un historial mixto.

Las personas a las que contactan cumplen con la cuarentena, pero comparte los nombres de las personas a las que podrían haber expuesto. Denis Nash, epidemiólogo que trabajó anteriormente para el Departamento de Salud e Higiene Mental de la ciudad y los Centros para el Control y Prevención de Enfermedades (CDC), dijo que la ciudad no ha profundizado con éxito en cómo se propaga realmente el coronavirus, porque los rastreadores de contactos no preguntan lo suficiente sobre los comportamientos de las personas y sus posibles exposiciones.

Este conocimiento, aunque imperfecto, podría conducir a decisiones de política pública mejor informadas, dijo Nash, sobre si cerrar el interior deÌý los restaurantes, salones de belleza o gimnasios. Sin esos datos, los líderes solo están haciendo conjeturas.

Otros culpan al programa de pruebas y rastreo de la ciudad por no llegar lo suficiente a las comunidades pobres de color, que sufrieron desproporcionadamente durante la primera ola de COVID. Chokshi, el comisionado de salud, dijo que llevar los sitios de prueba a estos vecindarios ha sido una prioridad, pero un sugirió que no está funcionando tan bien como pretendía la ciudad.

“Es evidente que existe una disparidad en la realización de pruebas generalizadas en la ciudad de Nueva York”, dijo Wil Lieberman-Cribbin, estudiante graduado e investigador de salud ambiental en la Universidad de Columbia.

Lieberman-Cribbin observó cuántas personas se están haciendo la prueba, por vecindario, y correlacionó esas cifras con la raza, el nivel de ingresos y la tasa de resultados positivos para COVID. En las áreas más ricas, las personas se hacen muchas más pruebas y tienen mucha menos enfermedad. En los más pobres, las personas reciben muchas menos pruebas y están mucho más enfermas.

Más pruebas en esas áreas detectarían los casos antes de que las personas desarrollen síntomas.

“Las pruebas son realmente necesarias, no solo para proteger a los más vulnerables, sino para tratar colectivamente de controlar a COVID y reabrir la ciudad de Nueva York”, dijo Lieberman-Cribbin.

El equipo de protección personal, o EPP, también es mucho más amplio que la primavera pasada, pero todavía sigue siendo motivo de controversia.

Las autoridades de salud del estado de Nueva York exigen que los hospitales acumulen un suministro de EPP para 90 días; para los hogares de adultos mayores, para 60 días. Muchas instalaciones han cumplido con los plazos de septiembre y octubre, pero otras no.

Montefiore, NYC Health + Hospitals y otras grandes redes de hospitales dicen que tienen al menos ese stock, si no más.

Las enfermeras, sin embargo, dicen que deben poder obtener máscaras N95 nuevas cada vez que ven a un nuevo paciente, para limitar el riesgo de contaminación. Muchos administradores responden que eso no es factible, dada la precariedad de la cadena de suministro. Remarcan que las permiten el “uso extendido” de algunos PPE.

“[Las enfermeras y otros cuidadores] se cambian los guantes entre pacientes y paciente, pero pueden usar la misma mascarilla N95 durante un turno y colocar una mascarilla quirúrgica sobre ella solo para preservarla y cambiarla si se rompe o contamina”, dijo Iavicoli, del sistema hospitalario de la ciudad. “Pero definitivamente en el próximo turno, recibirán una nueva”.

Esta historia es parte de una alianza que incluye a WNYC, NPR y KHN.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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Around the New York metropolitan area, public health leaders and health care workers say they’re watching the trend lines, as intensive care units fill up in other parts of the United States and around the world. They say it gives them flashbacks to last spring, when ambulance sirens were omnipresent and the region was the country’s coronavirus epicenter.

There is wide agreement that hospitals and care providers are in much better shape now than then, because there is much more knowledge about the disease and how to handle it; much larger stockpiles of personal protective equipment; and much, much more widespread testing.

But at the same time, many front-line workers are nervous about hospital preparedness, and many observers are less bullish about the effectiveness of the coronavirus testing and tracing infrastructure.

“I think there’s a lot of anxiety about doing this a second time,” said Dr. Laura Iavicoli, head of emergency preparedness for NYC Health + Hospitals, the country’s largest municipal hospital system. Iavicoli is also an active emergency room physician at Elmhurst Hospital, in Queens, which came to be called “the epicenter of the epicenter” back in April. Still, she has enormous confidence in the staff of the municipal hospital system.

“They will rally, because I know them,” she said. “I’ve worked with them for 20 years, and they’re the most amazing people I can possibly speak of, but there’s anxiety and there’s COVID fatigue.”

Iavicoli said some of the city’s hospitals are at capacity, but she hastened to add that she’s not talking about “COVID capacity” — meaning not all the beds and recently reconfigured spillover spaces for COVID patients are full. Rather, she said, two of the network’s 11 hospitals have had to transfer ICU patients to others to make room for incoming patients.

“We are doing a little bit of redistributing around the system to give them COVID capacity, but it’s very manageable within the system,” Iavicoli said. “The increase is definitely typical in flu season, but knowing that we have just entered upon the second wave [of COVID-19] and predicting what is to come, we’re a little even more cognizant than normal to make sure we leave capacity in all of our facilities.”

Many nurses, however, say hospital administrators have not learned enough from the experience in March and April.

“We’re scared because we’re afraid we’re going to have to go through this again,” said Michelle Gonzalez, a critical care nurse at Montefiore Medical Center, in the Bronx, and a union representative for NYSNA, the New York State Nurses Association.

She said that in her unit nurses typically handle one or two intensive care unit patients at a time — but now have to handle three, with the number of COVID patients creeping up once again. Tending to four patients or more was common at the peak of the pandemic surge. Gonzalez said that’s overwhelming. If one patient crashes, several nurses need to converge at once, leaving other patients unmonitored.ÌýÌýÌý

“When we start to get triples with the frequency we’re seeing right now, we know it’s because we’re short-staffed, and they’re not getting ICU nurses into the building,” she said at a demonstration that featured a phalanx of nurses marching from Montefiore to a nearby cemetery, bearing floral wreaths for fallen comrades, while a band and bagpiper played “When the Saints Go Marching In” and “Amazing Grace.”

A spokesperson for the union said Montefiore, by its own reckoning, has 476 vacant nursing positions — a number that has climbed by nearly 100 since 2019.

“Management is not living up to their promise to fill vacancies and hire nurses,” said Kristi Barnes, from NYSNA. “As of last week, they have 188 full-time nursing jobs they have not even posted, so there is no way they can be filled.”Ìý

The Montefiore administration disagrees.

“We have a contractual agreement with the union, and we meet the contractual obligations of that agreement,” said Peter Semczuk, senior vice president of operations. “We tailor our staffing in such a flexible way to meet the needs of the patient.”

Like many hospital systems, Montefiore relied heavily on temporary staffing agencies for “traveling nurses” from around the country. Hospitals are preparing to do so again — but there is demand all over the country.Ìý

“They got us travelers in April, but that was four or six weeks in, and until that we were on our own,” said Kathy Santoiemma, who’s been a nurse at Montefiore New Rochelle for 43 years. “I don’t even know where they’re going to get travelers now — everyone around the whole country needs travelers.”

NYSNA led a on Tuesday, after contract negotiations in the works for two years stalled on Monday.

Iavicoli said each of her network’s facilities has submitted requests, so that NYC Health + Hospitals could place a preliminary order now.

Health planners are hoping New Yorkers won’t flood into emergency rooms this time. They point to the over the past two months compared with other areas, including and. One thing they hope will keep the curve relatively flat is testing, which is more pervasive in New York than. About 200,000 people across New York state are getting tested each day, roughly one-third of them in New York City.

“It’s the first step to actually interrupting further spread,” said Dr. Dave Chokshi, the city health commissioner.

He said mass testing works on two levels — by highlighting which areas are hot zones, so health workers can target residents with “hyper-local” messages about COVID-19 spread, to get them to change their behavior, and also by allowing contact tracers to communicate individually with newly infected people.

“Once someone tests positive, we very quickly help them isolate,” Chokshi said. “We do an interview with them to know who their close contacts are, and then we call those contacts and make sure they’re quarantining as well.”

However, the city’s contact-tracing program has had a mixed record. The people it reaches say they’re staying put — but share names of people they might have exposed. Denis Nash, an epidemiologist who previously worked for the city’s Department of Health and Mental Hygiene and the Centers for Disease Control and Prevention, said the city hasn’t successfully drilled down into how the coronavirus actually spreads, because contact tracers aren’t asking people enough questions about their behaviors and possible exposures.

“During the summer and early fall, when things were slowly ramping up, there were missed opportunities to use contact tracing to talk to 80 or 90% of all newly diagnosed people, to understand what their risk factors were and what kinds of things … were they exposed to that could have potentially resulted in them getting the virus,” he said. “You can never know with 100% certainty [where they contracted the virus], but if you ask these questions, you could begin to understand what some likely patterns were — for example, of public transportation use, or working in office buildings that didn’t have rigorous safety protocols, or indoor dining.”

This knowledge, though imperfect, could lead to better informed public policy decisions, Nash said, about whether to close indoor restaurants, beauty salons or fitness centers. Without that data, leaders are just making guesses.

Others fault the city’s testing and tracing program for not reaching out enough to poor communities of color — which suffered disproportionately during the first COVID wave. Chokshi, the health commissioner, said getting testing sites to these neighborhoods has been a priority — but suggested it’s not working as well as the city intended.

“There’s clearly a disparity in providing widespread testing across New York City,” said Wil Lieberman-Cribbin, a graduate student and environmental health researcher at Columbia University.

He looked at how many people are getting tested, by neighborhood, and correlated those figures with race, income level and COVID positivity. In wealthier areas, people are getting many more tests and have much less illness. In poorer ones, people are getting many fewer tests and are much sicker. More testing in those areas would pick up cases sooner, before people develop symptoms.

“Testing is really, really needed, not only to protect the most vulnerable, but to collectively try and get a handle on COVID and reopen New York City,” Lieberman-Cribbin said.

Personal protective equipment, or PPE, is also much more ample than it was last spring but, similarly, remains a source of contention.

New York state health authorities are requiring hospitals to stockpile a 90-day supply of PPE; for nursing homes, it’s 60 days’ worth. Many facilities have complied with September and October deadlines, but.

Montefiore, NYC Health + Hospitals, and other large hospital networks say they have at least that much, if not more.Ìý Ìý Ìý Ìý

Nurses, though, say they should be able to get fresh N95 masks each time they see a new patient, to limit the risk of contamination. Many administrators counter that isn’t feasible, given the precariousness of the supply chain. They note that permit “extended use” of some PPE.

“[Nurses and other caregivers] change their gloves between every patient, but they might wear the same N95 mask for one shift and put a surgical mask over it just to preserve it and only switch it out if there’s some integrity issue or it gets contaminated,” said Iavicoli, of the city hospital system. “But definitely at the next shift, they’re getting a new one.”

Iavicoli acknowledged the challenges as the pandemic rolls on and said there are four kinds of days: “blue skies, or normal,” “busier than normal,” “a little stretched” and “extremely stretched.”Ìý

“I think we’re at the top end of ‘busy normal’ bordering on ‘a little more than overstretched,’” said Iavicoli.

This story is from a reporting partnership that includes , and .Ìý

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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“Hold your horses, I think I know what I’m gonna make,” he said, holding up a finger in the middle of a conversation. “I’m gonna make something that lights up and attaches to things with glue, so if you don’t have a flashlight, you can just use it!”

In New York, at least 237 kids, including Israel, Multisystem Inflammatory Syndrome in Children, or . And state officials continue to , but the Centers for Disease Control and Prevention did not respond to repeated requests for information on how many children nationwide have been diagnosed so far with MIS-C.

A study published June 29 in the New England Journal of Medicine 186 patients in 26 states who had been diagnosed with MIS-C. A researcher writing in the same issue added reports from other countries, that about 1,000 children worldwide have been diagnosed with MIS-C.

Tracking the Long-Term Health Effects of MIS-C

Israel is friendly and energetic, but he’s also really good at sitting still. During a recent checkup at Children’s Hospital at Montefiore, in the Bronx, he had no complaints about all the stickers and wires a health aide attached to him for an EKG. And when Dr. Marc Foca, an infectious disease specialist, came by to listen to his heart and lungs, and prod his abdomen, Israel barely seemed to notice.

There were still some tests pending, but overall, Foca said, “Israel looks like a totally healthy 5-year-old.”

“Stay safe!” Israel called out, as Foca left. It’s his new signoff, instead of goodbye. His mother, Janelle Moholland, explained Israel came up with it himself.

And she’s also hoping that after a harrowing couple of weeks in early May, Israel himself will “stay safe.”

That’s why they’ve been returning to Montefiore for the periodic checkups, even though Israel seems to have recovered fully from both COVID-19 and MIS-C.

MIS-C is relatively rare, and it apparently responds well to treatment, but it is new enough — and mysterious enough — that doctors here want to make sure the children who recover don’t experience any related health complications in the future.

“We’ve seen these kids get really sick, and get better and recover and go home, yet we don’t know what the long-term outcomes are,” said , a pediatric cardiologist at Montefiore. “So that’s why we will be seeing them.”

When Israel first got sick at the end of April, his illness didn’t exactly look like COVID-19. He had persistent high fevers, with his temperature reaching 104 degrees — but no problems breathing. He wasn’t eating. He was barely drinking. He wasn’t using the bathroom. He had abdominal pains. His eyes were red.

They went to the emergency room a couple of times and visited an urgent care center, but the doctors sent them home without testing him for the coronavirus. Moholland, 29, said she felt powerless.

“There was nothing I could do but make him comfortable,” she said. “I literally had to just trust in a higher power and just hope that He would come through for us. It taught me a lot about patience and faith.”

As Israel grew sicker, and they still had no answers, Moholland grew frustrated. “I wish his pediatrician and [the emergency room and urgent care staff] had done what they were supposed to do and given him a test” when Israel first got sick, Moholland said. “What harm would it have done? He suffered for about 10 or 11 days that could have been avoided.”

In a later interview, she talked with NPR about how COVID-19 has disproportionately affected the African American community, due to a combination of underlying health conditions and lack of access to good health care. She said she felt she, too, had fallen victim to those disparities.

“It affects me, personally, because I am African American, but you just never know,” she said. “It’s hard. We’re living in uncertain times — very uncertain times.”

Finally, Children’s Hospital at Montefiore admitted Israel — and the test she’d been trying to get for days confirmed he had the virus.

“I was literally in tears, like begging them not to discharge me because I knew he was not fine,” she recalled.

Israel was in shock, and by the time he got to the hospital, doctors were on the lookout for MIS-C, so they recognized his symptoms — which were distinct from most people with COVID-19.

Doctors gave Israel fluids and intravenous immune globulin, a substance obtained from donated human plasma, which is used to treat deficiencies in the immune system.

Immune globulin has been effective in children like Israel because MIS-C appears to be caused by an immune overreaction to the initial coronavirus infection, according to Choueiter, the Montefiore pediatric cardiologist.

“The immune system starts attacking the body itself, including the arteries of the heart,” she said.

In some MIS-C cases — though not Israel’s — the attack occurs in the coronary arteries, inflaming and dilating them. That also happens in a different syndrome affecting children, . About 5% of Kawasaki patients experience aneurysms — which can fatally rupture blood vessels — after the initial condition subsides.

Choueiter and her colleagues want to make sure MIS-C patients don’t face similar risks. So far, they’re cautiously optimistic.

“We have not seen any new decrease in heart function or any new coronary artery dilations,” she said. “When we check their blood, their inflammatory markers are back to normal. For the parents, the child is back to baseline, and it’s as if this illness is a nightmare that’s long gone.”

For a Pennsylvania Teen, the MIS-C Diagnosis Came Much Later

Not every child who develops MIS-C tests positive for the coronavirus, though many will test positive for antibodies to the coronavirus, indicating they had been infected previously. That was the case with Andrew Lis, a boy from Pennsylvania who was the first MIS-C patient seen at the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

Andrew had been a healthy 14-year-old before he got sick. He and his twin brother love sports and video games. He said the first symptom was a bad headache. He developed a fever the next day, then constipation and intense stomach pain.

“It was terrible,” Andrew said. “It was unbearable. I couldn’t really move a lot.”

His mother, Ingrid Lis, said they were thinking appendicitis, not coronavirus, at first. In fact, she hesitated to take Andrew to the hospital, for fear of exposing him to the virus. But after Andrew stopped eating because of his headache and stomach discomfort, “I knew I couldn’t keep him home anymore,” Lis said.

Andrew was admitted to the hospital April 12, but that was before reports of the mysterious syndrome had started trickling out of Europe.

Over about five days in the pediatric intensive care unit, Andrew’s condition deteriorated rapidly, as doctors struggled to figure out what was wrong. Puzzled, they tried treatments for scarlet fever, strep throat and toxic shock syndrome. Andrew’s body broke out in rashes, then his heart began failing and he was put on a ventilator. Andrew’s father, Ed Lis, said doctors told the family to brace for the worst: “We’ve got a healthy kid who a few days ago was just having these sort of strange symptoms. And now they’re telling us that we could lose him.”

Though Andrew’s symptoms were atypical for Kawasaki disease, doctors decided to give him the standard treatment for that condition — administering intravenous immune globulin, the same treatment Israel Shippy received.

“Within the 24 hours of the infusion, he was a different person,” Ingrid Lis said. Andrew was removed from the ventilator, and his appetite eventually returned. “That’s when we knew that we had turned that corner.”

It wasn’t until after Andrew’s discharge that his doctors learned about MIS-C from colleagues in Europe. They recommended the whole family be tested for antibodies to the coronavirus. Although Andrew tested positive, the rest of the family — both parents, Andrew’s twin brother and two older siblings — all tested negative. Andrew’s mother is still not sure how he was exposed since the family had been observing a strict lockdown since mid-March. Both she and her husband were working remotely from home, and she says they all wore masks and were conscientious about hand-washing when they ventured out for groceries. She thinks Andrew must have been exposed at least a month before his illness began.

And she’s puzzled why the rest of her close-knit family wasn’t infected as well. “We are a Latino family,” Ingrid Lis said. “We are very used to being together, clustering in the same room.” Even when Andrew was sick, she says, all six of them huddled in his bedroom to comfort him.

Meanwhile, Andrew has made a quick recovery. Not long after his discharge in April, he turned 15 and resumed an exercise routine involving running, pushups and situps. A few weeks later, an echocardiogram showed Andrew’s heart was “perfect,” Ed Lis said. Still, doctors have asked Andrew to follow up with a cardiologist every three months.

An Eye on the Long-Term Effects

The medical team at Montefiore is tracking the 40 children they have already treated and discharged. With kids showing few symptoms in the immediate aftermath, Chouetier hopes the long-term trajectory after MIS-C will be similar to what happens after Kawasaki disease.

“Usually children who have had coronary artery dilations [from Kawasaki disease] that have resolved within the first six weeks of the illness do well long-term,” said Choueiter, who runs the Kawasaki disease program at Montefiore.

The Montefiore team is asking patients affected by MIS-C to return for a checkup one week after discharge, then after one month, three months, six months and a year. They will be evaluated by pediatric cardiologists, hematologists, rheumatologists and infectious disease specialists.

Montefiore and other children’s hospitals around the country are sharing information. Choueiter wants to establish an even longer-term monitoring program for MIS-C, comparable to registries that exist for other diseases.

Moholland is glad the hospital is being vigilant.

“The uncertainty of not knowing whether it could come back in his future is a little unsettling,” she said. “But I am hopeful.”

This story is part of a partnership that includes , and Kaiser Health News.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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The trio wasÌýin the compact living room of Boyer’s apartment in Yonkers, N.Y., standing between the sofa, TV and writing desk. Dubin wasÌýin his socks, having shed his snow-caked boots in the hallway.

Boyer and Justi wereÌýgetting married. Never mind the blizzard-like conditions that kept one set of friends home, and a bad cold that waylaid another. TheyÌýwere determined to tie the knot that afternoon. So they recruited their landlord from downstairs and a public radio reporter to be witnesses.

Why the rush? Boyer and Justi had been listening to the news. They were planning to get married in the fall, but it occurred to them that there’s no knowing what could happen to health insurance if the Trump administration and congressional Republicans dismantle the Affordable Care Act.

Justi has several preexisting conditions — osteoporosis, asthma, allergies and vitamin B-12 malabsorption — and the insurance she carried over from her previous job will expire this summer. She had employer-based insurance for more than a decade but was laid off last year.

But there are other factors that could make that insurance much more expensive — such as the applicant’s age and the lack of a mandate, under the GOP plan, that everyone have health insurance. If you , many health care analysts say, it’s likely that the people buying that insurance would mostly be sick — further driving up the cost of the insurance, and driving out of the insurance pool the healthy, younger people who tend to bring down the cost of the insurance.

Justi’s current situation of having temporary insurance with an expiration date — instead of being on a stable health plan that can’t kick her off — takes her back to anÌýearlier, uglier time in her life.

“Before the Affordable Care Act, I went from one employer to another, and the new employer’s insurance didn’t cover my preexisting conditions for a year, and that nearly bankrupted me,” she said.

So Justi and Boyer decided to get legally married as soon as possible, and have a more ceremonial, celebratory wedding in the fall. They found Rabbi Dubin online, on a list of licensed local wedding officiants. They warmed to his profile, even though neither is Jewish.

The service in their living room proved relaxed but formal. Dubin wore a suit, and both bride and groom were fashionably attired in black. Boyer sported a white rose boutonnière. Justi held a bouquet of white roses and calla lilies, their stems wrapped in silk. Dubin talked about marriage and commitment and faith. And he nodded to their need to protect themselves.

“Every marriage is important — but it’s also important because you are living in times, as we all are, when sometimes we have to take things into our own hands to make sure we come out all right on the other side,” he said.

For about 20 minutes, they discussed the journey behind the couple and the one ahead. Boyer and Justi read vows they’d written to each other, and then gave each other rings. Dubin declared, “By the authority vested in me by the state of New York, I now pronounce you, Don and Ann, husband and wife.”

They kissed, then signed some paperwork, raised a toast of sparkling water, took some smartphone pictures and embraced the rabbi.

They were beaming like newlyweds — albeit very practical newlyweds who were already planning next steps.

“As quickly as possible, I want to get you and this form down to the union headquarters tomorrow,” Boyer said.

And thatÌýwas it. The landlord headed back downstairs. The rabbi and I headed out into the snow. And Justi and Boyer bundled up for a one-night honeymoon in a White Plains, N.Y., hotel. They said they’re prepared to face whatever comes next together — in sickness and in health.

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Five states haveÌýÌýon pads and tampons: New Jersey, Pennsylvania, Massachusetts, Maryland and Minnesota. In New York, a bill awaits the governor’s signature, and other efforts to improve access to sanitary products are underway.

The bill would reclassify pads and tampons so they’re exempt from the 4 percent state sales tax,ÌýÌýon pharmacy shelves, including bandages, swabs and contraceptives.ÌýÌýpassed both houses of the legislature, and Gov. Andrew Cuomo’s media representative has spoken positively about it.

As is so often the case, politics is catching up with pop culture. Although menstruation management has long been a favorite topic among comedians includingÌýandÌý, tampon advertisements nowÌýÌýthe euphemisticÌý, and period starter kits are being marketed withÌý.

All that laughter may be helpingÌýget traction. “Everyone’s talking about this inequity,” saidÌýNew York Assemblymember Linda Rosenthal, who introduced the state tax exemption bill.

At the High School for Arts and Business in Queens, a simple machine may be a game-changer. It has dispensed free tampons and pads since September.

“It keeps me from missing class, in case I need one,” saidÌýsophomore Emily Torres. “I don’t have to worry about accidents. It’s always there if I need it.”

The school is one of 25 around the city piloting the dispensers this school year. Previously, students had to get tampons or pads from the school nurse.

“You go to the nurse’s office when you’re sick,” saidÌýCity Council Member Julissa Ferreras-Copeland, has advocated for free menstrual supplies in all schools. “These girls aren’t sick. Getting your period just says that you’re healthy.”

Principal Ana Zambrano-Burakov thinks making it easier for girls to get these products has improved class attendance.

“I have heard sometimes girls stay home because they don’t have the money to buy what they need, and that’s no longer the case,” she said. “I just want girls to stay in school and do well, and we’re going to support them no matter what.”

Rosenthal isn’t sure exactly where the momentum is coming from. When she introduced her bill last year it got nowhere. Even this year, despite the unanimous support, she said the legislative discussion was awkward for some.

“I used the words ‘period’ and ‘blood’ and they were shifting in their chairs,” she said. “Some couldn’t look at me because I was saying these words.”

As High School for Arts and Business student Ashley Celik might put it: That’s on them.

“Sometimes when guys overhear us, they’re like, ‘Oh my god! Gross! Keep it to yourself!'” she said. “Of course we’re going to talk about it. It’s something normal. You shouldn’t be telling us we shouldn’t be talking about it because it’s awkward for you.”

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“We get a rush this time of year with all the movie-going at the holidays,” said Duke Gillingham, president of at his factory in Hillside, New Jersey, just west of Newark Liberty International Airport.

The company’s health insurance coverage is not as popular as its popcorn oil. Oasis offered health insurance to all employees for 2015, to comply with a new Affordable Care Act mandate. And while some employees did sign up for the insurance — the company doubled the number of people on its health plan over previous years — about two-thirds of the employees declined the coverage. With monthly premiums of roughly $350 for a family of four, and with a $2,500 annual deductible, it was too expensive for factory workers, many of whom earn between $10 and $15 an hour.

Gillingham said he hasn’t been able to find decent insurance much cheaper than that, and he cannot afford to significantly raise his employees’ wages.

“The sad fact is we’re in a very competitive business,” he said. “We wish we could make [insurance] more affordable, but it’s essentially what the business can bear. If we don’t watch what we’re doing, we can be high-cost, and that doesn’t serve any of the employees well.”

Companies Look To Avoid Penalties

Oasis Foods, a subsidiary of a Swedish food manufacturer, has about 180 workers. As of Jan. 1, smaller firms — those that employ between 51 and 100 workers — are being phased into the same mandate that Oasis faced in 2015. Companies must offer affordable coverage to all employees and will be subject to a penalty if their workers instead turn to the health exchange to buy subsidized coverage.

There’s no penalty for companies, it turns out, if workers qualify for Medicaid — though there could be controversy.

Company Shifts Insurance Costs To The Government

Founded two years ago with seed money from the , BeneStream now helps more than 6,500 workers at 125 companies across the country get Medicaid. CEO said moving workers from private insurance to Medicaid helps firms shift their costs to the government.

“The savings is quite significant,” he said. “Our average is about 250 percent — so about two-and-a-half times the money you spend on us comes back to you in the form of saved premium.”

Geyerhahn said going onto Medicaid, which is nearly free for employees, is a good deal, though it lacks the generous benefits of more expensive plans. If employees make so little that they’re eligible for Medicaid, he says, they probably can’t afford regular insurance premiums, especially when combined with the high deductibles that undermine much of the benefit of insurance.

“Yes, this [level of coverage] is something that will help them if they get in a car accident or have a heart attack,” he said, “but this isn’t something that’s going to help them manage their health over the course of the year.”

Wal-Mart, McDonald’s and some other large companies have for not providing employees with health insurance, instead relying on taxpayers to fund workers’ health needs via Medicaid.

, chair of the University of California, Berkeley’s Labor Center, said companies whose workers get Medicaid should bear some of the burden of the cost to taxpayers.

Critics Think Employers Should Pay Bigger Share

“Those employers should be paying more into the general pot that pays for health care, rather than putting those costs onto everyone else,” Jacobs said.

California legislators considered imposing a state tax penalty for companies whose workers get Medicaid, but lawmakers ultimately rejected the proposal.

, an economist at the Urban Institute, said that whether you are looking at a vast company like Wal-Mart or a modest-sized one like Oasis Foods, compensation is about trade-offs. The more you pay for people’s insurance, the less you have to put in their paychecks.

“When workers are low-income,” Blumberg said, “I would rather that we publicly finance their medical care, make it very accessible to them, have low cost-sharing so that’s not a barrier to them getting necessary care, and let them have a little bit higher wages in order to compensate.”

And even the large increases in the minimum wage currently being contemplated or phased in by several states and cities might still not be enough for those workers to afford most employer-sponsored insurance, given the high premiums and deductibles of such plans.

At Oasis, Gillingham says his company pays a lot in taxes, so getting almost-free health care for some workers amounts to a “.”

He contrasts this system to one he and his family of six experienced in England.

“My kids didn’t suffer from having a five- or six-minute checkup,” he said, compared with doctor visits in the United States — whichÌýmay have been twice as long, and at much higher expense, but without any noticeable difference in results.

“We didn’t see any of the demons that people speak of when they talk about socialized medicine,” Gillingham said. “There were no lines, no poor standard-of-care.”

But despite being relatively upbeat about government health care, he conceded that Oasis workers so far have given Medicaid mixed reviews. Some doctors and hospitals take the insurance, but many don’t.

Still, that’s true of most health insurance, Gillingham said.

A last month found that 67 percent of Americans, in general, are satisfied with the country’s health care system, compared with 75 percent of people who are on Medicaid.

“I think the system is evolving,” Gillingham said. “I don’t know where it’s going to go, but I know it’s going to change, and we need to adapt and make use of the system in the best way possible.”

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But then the county made it a part-time job – and Thomas lost that coverage before it started.

“Benefits are more important than the money you’re making,” Thomas says.

The Affordable Care Act’s third open enrollment season started Nov. 1, and federal officials are hoping to reach about a million people like Thomas across the country. Newark has an estimated 112,000 uninsured people, around one-third of the city’s population. It is one of five areas – along with Houston, Dallas, Chicago and Miami – where the federal government is focusing enrollment efforts. Altogether, Washington will spend more than $100 million on marketing and enrollment.

Why has Thomas sat on the sidelines for Obamacare’s first two years? He values insurance and regular health care, but he hasn’t fully understood what the law offered him.

“Prostate cancer runs in my family on both sides. My mother and her mother and her brother all had diabetes. My mother had hypertension also,” Thomas says. “Fortunately, I have low blood pressure. But now they’re saying I have high cholesterol.”

Thomas’ part-time job doesn’t pay a lot, yet he makes too much to get free health care from Medicaid. Because his income is below 400 percent of the federal poverty guidelines (about $47,000 for an individual), he’s eligible for government subsidies to make an Obamacare plan more affordable, but he says it’s still too expensive – the cost of living in Newark is high for him. So he goes without – and keeps his fingers crossed.

“I try not to think about it –getting sick,” he says.

Even with a job in a health-related field, Thomas didn’t know the health law’s benefits for people in his income bracket. He didn’t realize that his earnings entitle him to enough assistance from the government to bring his premium down to $100 or less and that he also qualifies for “cost-sharing support,” which picks up much of the deductible and other out-of-pocket expenses. People who make 250 percent of the federal poverty guidelines (about $29,000 for an individual) can get the cost-sharing support.

Looking for health insurance? Enrollment is openÌýand here’s what you need to know:

Brian McGovern, head of the , says overcoming misperceptions about Obamacare has been one of his staff’s biggest jobs. “It’s always been about trust with some of our patients,” he says.

Susan Nash from the Chicago law firm says for millions of people living paycheck-to-paycheck health insurance is still too expensive.

“These individuals are having difficulty affording food and housing, and so it’s a calculus: ‘Do I need health insurance? Do I think I’m going to have a catastrophic event or have some large health care expenditures this year?’” Nash says.

The government says about 8 in 10 of these eligible but uninsured people qualify for subsidies. But some of them will get only a little help from the government — since it is based on a sliding scale of income.

Other middle-income people would spend hundreds of dollars a month in premiums — and they wouldn’t qualify for the same help with out-of-pocket expenses that Thomas would. That means they could spend hundreds or thousands of additional dollars on a high deductible, if they need significant care.

Still, under the law, most people have to get insurance – or face a taxÌý next year of either 2.5 percent of income or $695 per adult and $347.50 per child under 18, with a maximum of $2,085. Even if people know about the penalties, they may not act. The fines for 2016 coverage don’t hit until Tax Day, 2017. And for many of people, that’s just too far away – and just too abstract.

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Her list of ailments is long.

“I have trouble seeing, headaches, problems with my stomach,” says Alicia, who declined to use her full name, because she is in the country illegally. “I feel depressed.”

Stream takes the problems one by one, carefully asking follow-up questions about when symptoms started, when they recur, where they’re felt, and what Alicia thinks the causes might be. Stream is using a translator, who also happens to be her supervisor, Dr. Amarilys Cortijo. As the symptoms pile up, Cortijo steps in.

“A lot of the symptoms she has are somatic,” says Cortijo. “We’ll have to deal with the complaints and try to get to the root, which is probably all the emotional turbulence that is taking place.”

Cortijo works for the Institute for Family Health and is co-director of two student free clinics — the Institute runs in the Bronx with volunteer students from Albert Einstein College of Medicine and , downtown, which the Institute runs with volunteer students from New York University School of Medicine. Many other medical schools around the country run similar clinics that treat uninsured people for free. They typically meet once a week, taking in a few dozen patients per session, and treating several hundred patients over the course of a year.

The programs are among the most popular extracurricular activities at medical schools, and at some institutions almost all students volunteer at some point during their training.

Students do everything. First- and second-year students perform more administrative tasks, such as running the reception desk, coordinating lab tests and follow-up treatment and fund-raising. Third- and fourth-year students see patients, with faculty physicians overseeing all formal diagnoses and prescriptions.

At the NYU clinic, students increasingly have had to help drum up business. Many of the core patients in the Union Square area picked up Obamacare coverage, leading to a 25 percent decline in visits last year.

“A lot of our patients had been freelance people, who were the most likely to benefit from the changes in health coverage,” says Dr. Sarah Nosal, co-director of the program.

So NYU students have had to go out recruiting in a way they didn’t need to before, heading to churches and community centers in neighborhoods farther away, to let people like Alicia know about the free healthcare they could get if they come to the clinic.

“[The students have] reached out to communities where undocumented people were and made them aware of our resources,” Nosal says.

But these free clinics are not major venues for taking care of the uninsured. Most of the close to 2 million uninsured people in New York state and 1 million in the city get health care in emergency rooms, city hospitals or community health centers — if they get it at all.

Still, Dr. Neil Calman, head of the Institute for Family Health, said the clinics perform a valuable service for both patients and future physicians.

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Sandra Lopez and her Chihuahua, Coco, were inseparable. He followed her everywhere, and kept Lopez’s mood up when she was in pain – which was often.

On Oct. 15, Lopez, died at age 49 of pancreatic and vaginal cancer that had slowly spread throughout her body over two years. She left behind a 15-year-old daughter and little Coco. But with hospice care, she spent her last weeksÌýwhere she wanted to be — at home, with her pain under control.

Sandra was in and out of the hospital in 2014, but for the months she was home, a hospice nurse from Metropolitan Jewish Health System visited once a week to help manage the pain, backed up by a 24-hour, nurse-staffed phone line that Lopez called often.

The reasons for this local gap are complicated, but Jeanne Dennis, senior vice president of hospice and palliative care at the Visiting Nurse Service of New York, says one place to start is with patients’ fears. “If you’re referred to hospice, it means no one expects you to get better,” Dennis says. “And that is, in my mind, a threshold that’s difficult for people to step over.”

Experts also focus on what they call medical culture, which can vary dramatically from region to region. According to this theory, physicians in the metropolitan area are specialists and sub-specialists, and institutions put a premium on treatments and tests. Even more than other places, the goal is to cure patients and not just care for them. Treating and testing is just what they do — letting go isn’t, says Dennis.

“Physicians put off the conversation [about hospice]: ‘It’s a little too soon;’ ‘it’s a little too early;’ ‘I don’t have enough time today;’ ‘I’m not sure they’re ready for it,'” Dennis says.

New York has 7 out of the tenÌýhospitals in the United StatesÌýwith the fewest hospice referrals. Local academic medical centers —Ìýnational leaders in research — do better, but still lag behind the rest of the country in their referral rates. It’s a big contrast to some hospitals around the country — particularly several in Arizona, Utah and Florida, where more than 75 percent of dying patients take advantage of Medicare’s hospice benefit.

Further, most hospice referrals in New York are for brief stays — a week or less — 2.5 times shorter than the national average. Szoa Geng, a healthcare consultant from the firm , says when hospitals move people to hospice with just a few days left to live, the patients don’t get the full hospice experience.

“They’re not getting the psychosocial support, and their families are not,” Geng says. “It can be a time of closure, and coming to peace with a lot of things in your life, and none of that can happen if you come onto hospice with a day left.”

Hospice care mostly takes place at home, but it can also occur in freestanding hospices, nursing homes or designated areas of hospitals. To receive the care, a doctor must predict a patient is in the last six months of life without hope of improving. There’s no penalty for outliving that prediction; some patients stabilize and go off hospice care, then return later when they start declining again.

About 25 percent of people in the New York metropolitan area use hospice care in their last six months of life, compared to close to 50 percent nationally. Statewide, the rate is closer to 30 percent. But that still makes New York 50th out of 51 states and the District of Columbia, according to the , the most recent statistics available.

Sandra Lopez said that before her oncologist told her about hospice care, she frequently called 911 to request an ambulance to take her to the hospital, where she would be admitted and spend days at a time. That happened “dozens and dozens of times,” in a year, Lopez said.

At around $210 a day, Lopez’s hospice care cost Medicaid tens of thousands of dollars — probably less than her revolving-door trips to the hospital (with their multi-night stays), but still a lot of money.

For Lopez, hospice helped her get ready to walk down the final road.

“I stopped worrying — like the worry box I used to be,” she told me in August. “I just live my life normally, like everybody else, because worrying will just probably get me more sick.”

Lopez knew that at some point her body would start shutting down, but she would never say how much time her doctors estimated she had remaining, because she didn’t dwell on that, she said. Facing death, she was at peace and knew she could stay that way — as long as someone was with her at home, at her bedside, helping subdue her pain.

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“I have multiple-drug-resistant tuberculosis,” he explains.

It’s called that, because at least two of the most potent drugs conventionally used to squelch the tuberculosis bacteriumÌýÌýon the strain of the illness that Karim has. So he needs to take a combination of drugs, with harsher side effects, for 18 months. That’s two to three times longer than the traditional treatment for tuberculosis.

“It has been a very stressful treatment process and a lot to deal with, but, thank God, it’s all going really, really well,” says Karim, who requested that NPR not use his full name out of concern he could be stigmatized for being a carrier of a disease that many people don’t understand.

While Americans debate whether we should quarantine people who might have Ebola but clearly aren’t contagious,Ìýothers wander among us who are infected with tuberculosis — another disease that’s highly communicable in some forms. Close to 10,000 people in the United States have TB.

Karim doesn’t know how he became infected with TB bacteria, though there’s a good chance it was from someone in Pakistan, where he lived until age 4. Millions of people worldwide harbor aÌýÌýfor decades — it only shifts to an active form in some of them when, for one reason or another their immune system can no longer keep the bacteria in check.

After Karim was diagnosed with infectious TB in Aug. 2013, New York City’s health department took over his treatment — giving him powerful medications and mandating two weeks of home isolation.

“Most of our patients that get to that point have had significant substance abuse issues or mental health problems that are not being addressed,” Burzynski says. “Those are the reasons they’re being nonadherent.”

But most of the city’s 650 or so residents each year who have active TB manage their treatment like Karim. Only a small number of people very close to him know he carries the disease. He thinks even if he explained to friends and colleagues that he isn’t contagious anymore, they’d still treat him differently. He worries it could affect his business relationships.

“I don’t blame people,” Karim says. “I don’t get angry. I understand. There are parts of my family — when they found out, there was kind of a stigma there. I don’t think there’s enough information about it.”

All the news about the Ebola virus has made both Burzynski and Karim think about how people understand infectious diseases. Burzynski says it makes sense that people are afraid of Ebola — it’s frequently lethal. But looking more closely at the TB experience could ease some of those fears.

“We know that patients with tuberculosis are not infectious, except when they have a high degree of disease that’s not being treated and they’re coughing,” Burzynski says. “We know that persons with Ebola disease are only infectious once they develop symptoms and transmit the disease through the spread of bodily fluids. So there’s really no reason to quarantine somebody who’s not a high risk to the public.”

Meanwhile, Karim is looking forward to a day, he hopes early next spring, when his 18-month drug regimen will be finished, and he’ll be free of TB. He says at that point he’ll tell more people about his ordeal — and do more for an organization he’s started working with that’s trying to find better, shorter treatments for the disease.

This story is part of a reporting partnership with , andÌýKaiser Health News.

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