Category: From California Healthline.org

This story also ran on The Guardian. It can be republished for free.

Last spring, New Jersey emergency room nurse Maritza Beniquez saw “wave after wave” of sick patients, each wearing a look of fear that grew increasingly familiar as the weeks wore on.

Soon, it was her colleagues at Newark’s University Hospital — the nurses, techs and doctors with whom she had been working side by side — who turned up in the ER, themselves struggling to breathe. “So many of our own co-workers got sick, especially toward the beginning; it literally decimated our staff,” she said.

By the end of June, 11 of Beniquez’s colleagues were dead. Like the patients they had been treating, most were Black and Latino.

“We were disproportionately affected because of the way that Blacks and Latinos in this country have been disproportionately affected across every [part of] our lives — from schools to jobs to homes,” she said.

Now Beniquez feels like a vanguard of another kind. On Dec. 14, she became the first person in New Jersey to receive the coronavirus vaccine — and was one of many medical workers of color featured prominently next to headlines heralding the vaccine’s arrival at U.S. hospitals.

It was a joyous occasion, one that kindled the possibility of again seeing her parents and her 96-year-old grandmother, who live in Puerto Rico. But those nationally broadcast images were also a reminder of those for whom the vaccine came too late.

Covid-19 has taken an outsize toll on Black and Hispanic Americans. And those disparities extend to the medical workers who have intubated them, cleaned their bedsheets and held their hands in their final days, a KHN/Guardian investigation has found. People of color account for about 65% of fatalities in cases in which there is race and ethnicity data.

One recent study found health care workers of color were more than twice as likely as their white counterparts to test positive for the virus. They were more likely to treat patients diagnosed with covid, more likely to work in nursing homes — major coronavirus hotbeds — and more likely to cite an inadequate supply of personal protective equipment, according to the report.

In a national sample of 100 cases gathered by KHN/The Guardian in which a health care worker expressed concerns over insufficient PPE before they died of covid, three-quarters of the victims were identified as Black, Hispanic, Native American or Asian.

“Black health care workers are more likely to want to go into public-sector care where they know that they will disproportionately treat communities of color,” said Adia Wingfield, a sociologist at Washington University in St. Louis who has studied racial inequality in the health care industry. “But they also are more likely to be attuned to the particular needs and challenges that communities of color may have,” she said.

Not only do many Black health care staffers work in lower-resourced health centers, she said, they are also more likely to suffer from many of the same co-morbidities found in the general Black population, a legacy of systemic inequities.

And they may fall victim to lower standards of care. Dr. Susan Moore, a 52-year-old Black pediatrician in Indiana, was hospitalized with covid in November and, according to a video posted to her Facebook account, had to ask repeatedly for tests, remdesivir and pain medication. She said her white doctor dismissed her complaints of pain and she was discharged, only to be admitted to another hospital 12 hours later.

Numerous studies have found Black Americans often receive worse medical care than their white counterparts: In March, a Boston biotech firm published an analysis showing physicians were less likely to refer symptomatic Black patients for coronavirus tests than symptomatic whites. Doctors are also less likely to prescribe painkillers to Black patients.

“If I was white, I wouldn’t have to go through that,” Moore said in the video posted from her hospital bed. “This is how Black people get killed, when you send them home, and they don’t know how to fight for themselves.” She died on Dec. 20 of covid complications, her son Henry Muhammad told news outlets.

Along with people of color, immigrant health workers have suffered disproportionate losses to covid-19. More than one-third of health care workers to die of covid in the U.S. were born abroad, from the Philippines to Haiti, Nigeria and Mexico, according to a KHN/Guardian analysis of cases for which there is data. They account for 20% of health care workers in the U.S. overall.

Dr. Ramon Tallaj, a physician and chairman of Somos, a nonprofit network of health care providers in New York, said immigrant doctors and nurses often see patients from their own communities — and many working-class, immigrant communities have been devastated by covid.

“Our community is essential workers. They had to go to work at the beginning of the pandemic, and when they got sick, they would come and see the doctor in the community,” he said. Twelve doctors and nurses in the Somos network have died of covid, he said.

Dr. Eriberto Lozada was an 83-year-old family physician in Long Island, New York. He was still seeing patients out of his practice when cases began to climb last spring. Originally from the Philippines, a country with a history of sending skilled medical workers to the United States, he was proud to be a doctor and “proud to have been an immigrant who made good,” his son James Lozada said.

Lozada’s family members remember him as strict and strong-willed — they affectionately called him “the king.” He instilled in his children the importance of a good education. He died in April.

Two of his four sons, John and James Lozada, are doctors. Both were vaccinated last month. Considering all they had been through, John said, it was a “bittersweet” occasion. But he thought it was important for another reason — to set an example for his patients.

The inequities in covid infections and deaths risk fueling distrust in the vaccine. In a recent Pew study, around 42% of Black respondents said they would “definitely or probably” get the vaccine compared with 60% of the general population.

This makes sense to Patricia Gardner, a Black, Jamaican-born nursing manager at Hackensack University Medical Center in New Jersey who has been infected with the coronavirus along with family members and colleagues. “A lot of what I hear is, ‘How is it that we weren’t the first to get the care, but now we’re the first to get vaccinated?’” she said.

Like Beniquez, the nurse in Newark, she was vaccinated on Dec. 14. “For me to step up to say, ‘I want to be in the first group’ — I’m hoping that sends a message,” she said.

Beniquez said she felt the weight of that responsibility when she signed on to be the first person in her state to receive the vaccine. Many of her patients have expressed skepticism over the vaccine, fueled, she said, by a health system that has failed them for years.

“We remember the Tuskegee trials. We remember the ‘appendectomies’” — reports that women were forcibly sterilized in a U.S. Immigration and Customs Enforcement detention center in Georgia. “These are things that have happened to this community to the Black and Latino communities over the last century. As a health care worker, I have to recognize that their fears are legitimate and explain ‘This is not that,’” she said.

Beniquez said her joy and relief over receiving the vaccine are tempered by the reality of rising cases in the ER. The adrenaline she and her colleagues felt last spring is gone, replaced by fatigue and wariness of the months ahead.

Her hospital placed 11 trees in the lobby, one for each employee who has died of covid; they have been adorned with remembrances and gifts from their colleagues.

There is one for Kim King-Smith, 53, the friendly EKG technician, who visited friends of friends or family whenever they ended up in the hospital.

One for Danilo Bolima, 54, the nurse from the Philippines who became a professor and was the head of patient care services.

One for Obinna Chibueze Eke, 42, the Nigerian nursing assistant, who asked friends and family to pray for him when he was hospitalized with covid.

“Each day, we remember our fallen colleagues and friends as the heroes who helped keep us going throughout this pandemic and beyond,” hospital president and CEO Dr. Shereef Elnahal said in a statement. “We can never forget their contributions and their collective passion for this community, and each other.”

Just outside the building, stands a 12th tree. “It’s going to be for whoever else we lose in this battle,” Beniquez said.

This story is part of “Lost on the Frontline,” an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

This story also ran on NPR. It can be republished for free.

Hospitals face the new year with new requirements to post price information they have long sought to obscure: the actual prices negotiated with insurers and the discounts they offer their cash-paying customers.

The move is part of a larger push by the Trump administration to use price transparency to curtail prices and create better-informed consumers. Yet there is disagreement on whether it will do so.

As of Jan. 1, hospitals must publicly post on their websites prices for every service, drug and supply they provide. Next year, under a separate rule, health insurers must take similar steps. A related effort to force drugmakers to list their prices in advertisements was struck down by the courts.

With the new hospital rule, consumers should be able to see the tremendous variation in prices for the exact same care among hospitals and get an estimate of what they will be charged for care — before they seek it.

The new data requirements go well beyond the previous rule of requiring hospitals to post their “chargemasters,” hospital-generated list prices that bear little relation to what it costs a hospital to provide care and that few consumers or insurers actually pay.

Instead, under the new rule put forward by the Trump administration, “these are the real prices in health care,” said Cynthia Fisher, founder and chairman of Patient Rights Advocate, a group that promotes price transparency.

Here’s what consumers should know:

What’s the Scope of the Intel?

Each hospital must post publicly online — and in a machine-readable format easy to process by computers — several prices for every item and service they provide: gross charges; the actual, and most likely far lower, prices they’ve negotiated with insurers, including de-identified minimum and maximum negotiated charges; and the cash price they offer patients who are uninsured or not using their insurance.

In addition, each hospital must make available, in a “consumer-friendly format,” the specific costs for 300 common and “shoppable” services, such as having a baby, getting a joint replacement, having a hernia repair or undergoing a diagnostic brain scan.

Those 300 bundles of procedures and services must total all costs involved — from the hardware used to the operating room time, to drugs given and the fees of hospital-employed physicians — so patients won’t have to attempt the nearly impossible job of figuring it out themselves.

Hospitals can mostly select which services fall into this category, although the federal government has dictated 70 that must be listed — including certain surgeries, diagnostic tests, imaging scans, new patient visits and psychotherapy sessions.

Will Prices Be Exact?

No. At best, these are ballpark figures.

Other factors influence consumers’ costs, like the type of insurance plan a patient has, the size and remaining amount of the annual deductible, and the complexity of the medical problem.

An estimate on a surgery, for example, might prove inexact. If all goes as expected, the price quoted likely will be close. But unexpected complications could arise, adding to the cost.

“You’ll get the average price, but you are not average,” said Gerard Anderson, a professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health who studies hospital pricing.

Tools to help consumers determine in advance the amount of deductible they’ll owe are already available from many insurers. And experts expect the additional information being made available this month will prompt entrepreneurs to create their own apps or services to help consumers analyze the price data.

For now, though, the hospital requirements are a worthy start, say experts.

“It’s very good news for consumers,” said George Nation, a professor of law and business at Lehigh University who studies hospital pricing. “Individuals will be able to get price information, although how much they are going to use it will remain to be seen.”

Will Consumers Use This Info? Who Else Might?

Zack Cooper, an associate professor of public health and economics at Yale, doubts that the data alone will make much of a difference for most consumers.

“It’s not likely that my neighbor — or me, for that matter — will go on and look at prices and, therefore, dramatically change decisions about where to get care,” he said.

Some cost information is already made available by insurers to their enrollees, particularly out-of-pocket costs for elective services, “but most people don’t consult it,” he added.

That could be because many consumers carry types of insurance in which they pay flat-dollar copayments for such things as doctor visits, drugs or hospital stays that have no correlation to the underlying charges.

Still, the information may be of great interest to the uninsured and to the increasing number of Americans with high-deductible plans, in which they are responsible for hundreds or even thousands of dollars in costs annually before the insurer begins picking up the bulk of the cost.

For them, the negotiated rate and cash discount information may prove more useful, said Nation at Lehigh.

“If I have a $10,000 deductible plan and it’s December and I’m not close to meeting that, I may go to a hospital and try to get the cash price,” said Nation.

Employers, however, may have a keen interest in the new data, said James Gelfand, senior vice president at the ERISA Industry Committee, which lobbies on behalf of large employers that offer health insurance to their workers. They’ll want to know how much they are paying each hospital compared with others in the area and how well their insurers stack up in negotiating rates, he said.

For some employers, Gelfand said, it could be eye-opening to see how hospitals cross-subsidize by charging exorbitant amounts for some things and minimal amounts for others.

“The rule puts that all into the light,” said Gelfand. “When an employer sees these ridiculous prices, for the first time they will have the ability to say no.” That could mean rejecting specific prices or the hospital entirely, cutting it out of the employer plan’s insurance network. But, typically, employers can’t or won’t limit workers’ choices by outright cutting a hospital from an insurance network.

More likely, they may use the information to create financial incentives to use the lowest-cost facilities, said Anderson at Johns Hopkins.

“If I’m an employer, I’ll look at three hospitals in my area and say, ‘I’ll pay the price for the lowest one. If you want to go to one of the other two, you can pay the difference,’” said Anderson.

Will Price Transparency Reduce Overall Health Spending?

Revealing actual negotiated prices, as this rule requires, may push the more expensive hospitals in an area to reduce prices in future bargaining talks with insurers or employers, potentially lowering health spending in those regions.

It could also go the other way, with lower-cost hospitals demanding a raise, driving up spending.

Bottom line: Price transparency can help, but the market power of the various players might matter more.

In some places, where there may be one dominant hospital, even employers “who know they are getting ripped off” may not feel they can cut out a big, brand-name facility from their networks, no matter the price, said Anderson.

Is the Rule Change a Done Deal?

The hospital industry went to court, arguing that parts of the rule go too far, violating their First Amendment rights and also unfairly forcing hospitals to disclose trade secrets. That information, the industry said, can then be used against them in negotiations with insurers and employers.

But the U.S. District Court for the District of Columbia disagreed with the hospitals and upheld the rule, prompting an appeal by the industry. On Dec. 29, the U.S. Court of Appeals for the District of Columbia affirmed that lower-court decision and did not move to block enforcement of the rule.

In a written statement last week, the American Hospital Association’s general counsel cited “disappointment” with the ruling and said the organization is “reviewing the decision carefully to determine next steps.”

Apart from the litigation, the American Hospital Association plans to talk with the incoming Biden administration “to try to persuade them there are some elements to this rule and the insurer rule that are tricky,” said Tom Nickels, an executive vice president of the trade group. “We want to be of help to consumers, but is it really in people’s best interest to provide privately negotiated rates?”

Fisher thinks so: “Hospitals are fighting this because they want to keep their negotiated deals with insurers secret,” she said. “What these rules do is give the American consumer the power of being informed.”

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

This story also ran on Daily Beast. It can be republished for free.

As I prepared to get my shot in mid-December as part of a covid vaccine trial run by Janssen Pharmaceuticals, I considered the escape routes. Bailing out of the trial was a very real consideration since two other vaccines, made by Moderna and Pfizer-BioNTech, had been deemed safe and effective for emergency approval.

Leaving the trial would be a perfectly sane decision for me or anyone who had volunteered for an ongoing covid experiment. Why risk getting covid-19 if I was given a placebo, a shot with no vaccine in it? The way tests are designed, I might not be told whether I received the vaccine until the clinical trial is over, months from now.

Dropping the placebo arm could also be ethically sound from the company’s point of view. Researchers frequently halt trials when they have a product that works — or manifestly doesn’t. And the two approved vaccines are 95% effective.

That very real choice for thousands of people offering to join or remain in the ongoing vaccine tests creates a conundrum for science and for society. If trials can’t go forward, that could very well have an impact on the world’s supply of covid vaccines and eventually on vaccine prices, especially if booster shots are needed in years to come. In markets where there are only two competing drugs, prices can shoot sky-high. If there are four or five on the market, competition usually kicks in to control costs.

In short, the welcome arrival of two covid vaccines deemed safe has uncovered a series of ethical and logistical challenges. And it has governments, companies and scientists scrambling for solutions.

“The world’s vaccine experts are saying the longer we can carry out a placebo-controlled trial the better,” Matthew Hepburn, who runs the vaccine development arm of Operation Warp Speed, the multibillion-dollar federal program to fight covid-19, told me. “But as a volunteer in the Janssen trial, you can always drop out.”

As for the best way to resolve broader problems, “it’s a debate in real time,” he said.

Generally, there are two aspects to the debate. First, what should be done with placebo recipients of the Moderna and Pfizer trials now that it’s clear both shots prevent the disease and appear safe? Second, how can the scores of companies in the United States and overseas that are still testing covid vaccines adapt when there are apparently reliable products already on the market?

The FDA’s advisory committee debated the first question during two meetings in December. They heard Stanford University statistician Steven Goodman argue in favor of a “double-blind crossover” modification of the Pfizer and Moderna trials. Everyone who got placebo shots in the trials would now get two doses of the real vaccine, and vice versa. That way everyone would be protected but still “blind” as to when they were properly vaccinated.

Such a rejigger of the current trial would provide more data on the vaccine’s safety and durability of protection, although the longer-term comparison of vaccine versus placebo would be lost. It’s a marvelous idea in principle, the panelists agreed, but pretty hard to carry out. Neither Moderna nor Pfizer has agreed to it.

Pfizer wants to “unblind” placebo recipients of its vaccine — to reveal they got the saline solution and give them the real thing — once their risk group gets its turn in line for the vaccine. It has already started vaccinating health care workers who got the placebo.

Moderna, which has thousands of soon-to-expire leftover doses from its trial, said it intends to unblind its trial and vaccinate all the placebo recipients. In doing so, it would be recognizing the altruistic service the test subjects made to science and society by joining the trial.

Another proposal would split the placebo recipients in the trial into two groups. In one group, everyone would get a single dose of the vaccine. In the other, each would get two doses. This would be a way of testing evidence that emerged during the Pfizer and Moderna trials that a single dose might provide sufficient protection. If that were true, vaccination of the country could happen nearly twice as fast, because there would be twice as many doses of vaccine to go around.

No one knows to what extent the Food and Drug Administration could force the hands of the two companies, which still expect to get full licensure for their vaccines this year. Moderna is considered more amenable to the suggestion since, unlike Pfizer, it got nearly $1 billion in federal funding to develop its vaccine.

Other vaccine developers — including Operation Warp Speed participants Janssen (owned by Johnson & Johnson), AstraZeneca, Novavax, Sanofi and Merck & Co. — are closely watching to see which path is taken.

They are in a race against time — a race that may not end well for those running late in getting their vaccine out. And halting those efforts could hurt billions of people elsewhere in the world whose lives and livelihoods will depend on the arrival of plentiful, cheap vaccines.

One problem is finding willing test subjects. As increasing numbers of Americans are vaccinated, and the virus recedes from our shores, “the fewer the number of people eligible to participate in trials,” said Susan Ellenberg, professor of biostatistics at the University of Pennsylvania.

For now, AstraZeneca and Janssen appear well situated. Both have closed enrollment in their U.S. trials and are likely to file within a few months for emergency use authorizations, like those that have allowed Moderna and Pfizer to start vaccinating the public.

Novavax officials last week started their late-stage trial in the U.S. and predict they can get full enrollment before the majority of the U.S. population is vaccinated.

Sanofi and Merck, whose timetables are more drawn out, are more likely to conduct most of their trials overseas.

In theory, drug companies could overcome these hurdles by testing multiple vaccines against one another and against approved vaccines. Dr. Steven Joffe, a University of Pennsylvania bioethicist, proposed in a recent JAMA article that Operation Warp Speed pay for such a trial.

Scientists and policymakers batted around the idea of a single U.S. trial, with multiple vaccine candidates competing against one another and a single placebo arm, during initial discussions last spring about the creation of Operation Warp Speed.

The idea went nowhere in the United States. It was taken up by World Health Organization officials and major biomedical research groups, which have tried to create such a vaccine trial in the rest of the world — with little success thus far.

So, for now, future vaccine trials are somewhat up in the air.

“There’s this tension created by getting the first vaccines out there so quickly,” said David Wendler, a senior researcher in bioethics at the National Institutes of Health’s Clinical Center. “For public health it’s good, but it has the potential to undermine our ability to keep going on the research side and really knock out the virus.”

Companies, governments and outside funders need to quickly develop consensus on appropriate trial designs and regulatory processes for additional covid vaccines, added Mark Feinberg, president and CEO of the International AIDS Vaccine Initiative.

As for me, I decided I would stay in the Janssen trial. However, the day before I was scheduled to get my injection — real or fake — the research organization running the inoculations called to say I failed to make the cut: J&J had stopped its trial enrollment.

So, I’ll buy some new masks and get in line for my vaccine with everyone else.

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

La primavera pasada, Maritza Beniquez, enfermera de una sala de emergencias de Nueva Jersey, fue testigo de “una oleada tras otra” de pacientes enfermos, cada uno con una mirada aterrada que se volvió familiar a medida que pasaban las semanas.

Pronto, fueron sus colegas del Hospital Universitario de Newark, enfermeras, técnicos y médicos con los que había estado trabajando codo con codo, quienes se presentaban en la emergencia luchando por respirar. “Muchos de nuestros propios compañeros de trabajo se enfermaron, especialmente al principio; literalmente diezmó a nuestro personal”, contó.

A fines de junio, 11 de los colegas de Beniquez habían muerto. Como los pacientes que habían estado tratando, la mayoría eran de raza negra y latinos (que pueden ser de cualquier raza).

“Nos vimos afectados de manera desproporcionada por la forma en que nuestras comunidades se han visto afectadas de manera desproporcionada en cada [parte de] nuestras vidas, desde las escuelas hasta los trabajos y los hogares”, dijo.

El 14 de diciembre, Beniquez se convirtió en la primera persona en Nueva Jersey en recibir la vacuna contra el coronavirus, y fue una de los muchos trabajadores médicos de color destacados en los titulares.

Fue una ocasión alegre, que reavivó la posibilidad de volver a ver a sus padres y a su abuela de 96 años, quienes viven en Puerto Rico. Pero esas imágenes transmitidas a nivel nacional también fueron un recordatorio de aquéllos para quienes la vacuna llegó demasiado tarde.

Covid-19 se ha cobrado un precio enorme entre los afroamericanos y los hispanounidenses. Y esas disparidades se extienden a los trabajadores médicos que los intubaron, limpiaron sus sábanas y tomaron sus manos en sus últimos días, halló una investigación de KHN/The Guardian.

Las personas de color representan aproximadamente el 65% de las muertes en los casos en los que hay datos de raza y etnia.

Un estudio reciente encontró que los trabajadores de salud de color tienen más del doble de probabilidades que sus contrapartes caucásicas de dar positivo para el virus. Son más propensos a tratar a pacientes diagnosticados con covid, y a trabajar en hogares de adultos mayores, los principales focos de coronavirus; y también a reportar un suministro inadecuado de equipo de protección personal, según el informe.

En una muestra nacional de 100 casos recopilados por KHN/The Guardian en los que un trabajador de salud expresó su preocupación por la insuficiencia de EPP antes de morir por covid, tres cuartas partes de las víctimas fueron identificadas como negras, hispanas, nativas americanas o asiáticas.

“Es más probable que los trabajadores de salud de raza negra quieran ir a atenderse al sector público donde saben que tratarán de manera desproporcionada a las comunidades de color”, dijo Adia Wingfield, socióloga de la Universidad de Washington en St. Louis, quien ha estudiado la desigualdad racial en el industria del cuidado de salud. “Pero también es más probable que estén en sintonía con las necesidades y desafíos particulares que puedan tener las comunidades de color”, dijo.

Wingfield agregó que muchos miembros del personal de atención médica afroamericanos no solo trabajan en centros de salud de bajos recursos, sino que también son más propensos a sufrir muchas de las mismas comorbilidades que se encuentran en la población negra en general, un legado de décadas de inequidades sistémicas.

Y pueden ser víctimas de estándares de atención más bajos, agregó la doctora Susan Moore, pediatra de raza negra de 52 años de Indiana, quien fue hospitalizada con covid en noviembre y, según un video publicado en su cuenta de Facebook, tuvo que pedir repetidamente pruebas, remdesivir y analgésicos. Dijo que su médico (caucásico) desestimó sus quejas de dolor y fue dada de alta, solo para ser internada en otro hospital 12 horas después.

Numerosos estudios han encontrado que los afroamericanos a menudo reciben peor atención médica que sus contrapartes blancas: en marzo, una empresa de biotecnología de Boston publicó un análisis que mostraba que era menos probable que los médicos remitieran a pacientes negros sintomáticos para pruebas de coronavirus que a los blancos sintomáticos.

Los médicos también son menos propensos a recetar analgésicos a pacientes negros.

“Si fuera blanca, no tendría que pasar por eso”, dijo Moore en el video publicado desde su cama de hospital. “Así es como matan a los negros, cuando los envías a casa, y no saben cómo luchar por sí mismos”. Moore murió el 20 de diciembre por complicaciones de covid, dijo su hijo Henry Muhammad a los medios de comunicación.

Junto con las personas de color, los trabajadores de salud inmigrantes han sufrido pérdidas desproporcionadas a causa de covid-19. Más de un tercio de los trabajadores de salud que mueren por covid en el país nacieron en el extranjero, desde Filipinas y Haití, hasta Nigeria y México, según un análisis de KHN/The Guardian de casos registrados. Representan el 20% del total de trabajadores de salud de los Estados Unidos.

El doctor Ramon Tallaj, médico y presidente de Somos, una red sin fines de lucro de proveedores de atención médica en Nueva York, dijo que los médicos y enfermeras inmigrantes a menudo ven a pacientes de sus propias comunidades, y muchas comunidades inmigrantes de clase trabajadora han sido devastadas por covid.

“Nuestra comunidad son trabajadores esenciales. Tuvieron que ir a trabajar al comienzo de la pandemia, y cuando se enfermaban, iban a ver al médico de la comunidad”, dijo. Doce médicos y enfermeras de la red Somos han muerto por covid, dijo.

El doctor Eriberto Lozada era médico de familia de 83 años en Long Island, Nueva York. Todavía estaba viendo pacientes fuera de su consulta cuando los casos comenzaron a aumentar la primavera pasada. Originario de Filipinas, un país con un historial de envío de trabajadores médicos calificados a los Estados Unidos, estaba orgulloso de ser médico y “de haber sido un inmigrante próspero”, dijo su hijo James Lozada.

Los miembros de la familia de Lozada lo recuerdan como estricto y de voluntad fuerte; lo llamaban cariñosamente “el rey”. Inculcó a sus hijos la importancia de una buena educación. Murió en abril.

Dos de sus cuatro hijos, John y James Lozada, son médicos. Ambos fueron vacunados el mes pasado. Considerando todo lo que habían pasado, dijo John, fue una ocasión “agridulce”. Pero pensó que era importante por otra razón: ser un ejemplo para sus pacientes.

Las desigualdades en las infecciones, y las muertes, por covid podrían alimentar la desconfianza en la vacuna. En un estudio reciente del Pew Research Center, alrededor del 42% de los encuestados de raza negra dijeron que “definitivamente o probablemente” recibirían la vacuna en comparación con el 60% de la población general.

Esto tiene sentido para Patricia Gardner, enfermera nacida en Jamaica y gerenta en el Centro Médico de la Universidad de Hackensack, en Nueva Jersey, quien contrajo el coronavirus junto con familiares y colegas. “Mucho de lo que escucho es, ‘¿Cómo es que no fuimos los primeros en recibir atención, pero ahora somos los primeros en vacunarnos?’”, dijo.

Al igual que Beniquez, se vacunó el 14 de diciembre. “Para mí, dar un paso al frente y decir: ‘Quiero estar en el primer grupo’, espero que eso envíe un mensaje”, dijo.

Beniquez dijo que sintió el peso de esa responsabilidad cuando se inscribió para ser la primera persona en su estado en recibir la vacuna. Muchos de sus pacientes han expresado escepticismo, impulsado, opinó, por un sistema de salud que les ha fallado durante años.

“Recordamos los juicios de Tuskegee. Recordamos las ‘apendicectomías’ ”: informes de mujeres que fueron esterilizadas a la fuerza en un centro de detención del Servicio de Inmigración y Control de Aduanas de Georgia. “Estas son cosas que le han sucedido a esta comunidad, a las comunidades negras y latinas durante el último siglo. Como trabajadora de salud, tengo que reconocer que sus temores son legítimos y explicarles ‘Esto no es lo mismo’”, dijo.

Beniquez dijo que su alegría y alivio por recibir la vacuna se ven atenuados por la realidad del aumento de casos en la sala de emergencias. La adrenalina que ella y sus colegas sintieron la primavera pasada se ha ido, reemplazada por la fatiga y la cautela de los meses venideros.

Su hospital colocó 11 árboles en el vestíbulo, uno por cada empleado que murió de covid; han sido adornados con recuerdos y obsequios de sus colegas.

Hay uno para Kim King-Smith, de 53 años, el amable técnico de EKG, que visitaba a amigos de amigos, o a familiares cada vez que terminaba en el hospital.

Uno para Danilo Bolima, 54, el enfermero de Filipinas que se convirtió en profesor y era el jefe de servicios de atención al paciente.

Otro para Obinna Chibueze Eke, de 42 años, asistente de enfermería nigeriano, que pidió a sus amigos y familiares que oraran cuando estuvo hospitalizado con covid.

“Cada día, recordamos a nuestros colegas y amigos caídos como los héroes que nos ayudaron a seguir adelante durante esta pandemia y más allá”, dijo el doctor Shereef Elnahal presidente y director ejecutivo del hospital, en un comunicado. “Nunca olvidaremos sus contribuciones y su pasión colectiva por esta comunidad y por los demás”.

Justo afuera del edificio, está el árbol número 12. “Será para otro u otra que perdamos en esta batalla”, dijo Beniquez.

Esta historia es parte de “Lost on the Frontline”, un proyecto en curso de The Guardian y Kaiser Health News que tiene como objetivo documentar las vidas de los trabajadores de  salud de los Estados Unidos que mueren a causa de COVID-19, e investigar por qué tantos son víctimas de la enfermedad. Si tienes un colega o un ser querido que deberíamos incluir, por favor comparte su historia.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

COLUMBIA, Mo. — A memory haunts Christina Fuhrman: the image of her toddler Pearl lying pale and listless in a hospital bed, tethered to an IV to keep her hydrated as she struggled against a superbug infection.

“She survived by the grace of God,” Fuhrman said of the illness that struck her oldest child in this central Missouri city almost five years ago. “She could’ve gone septic fast. Her condition was near critical.”

Pearl was fighting Clostridium difficile, or C. diff, a type of antibiotic-resistant bacteria known as a superbug. A growing body of research shows that overuse and misuse of antibiotics in children’s hospitals — which health experts and patients say should know better — helps fuel these dangerous bacteria that attack adults and, increasingly, children. Doctors worry that the covid pandemic will only lead to more overprescribing.

A study published in the journal Clinical Infectious Diseases in January found that 1 in 4 children given antibiotics in U.S. children’s hospitals are prescribed the drugs inappropriately — the wrong types, or for too long, or when they’re not necessary.

Dr. Jason Newland, a pediatrics professor at Washington University in St. Louis who co-authored the study, said that’s likely an underestimate because the research involved 32 children’s hospitals already working together on proper antibiotic use. Newland said the nation’s 250-plus children’s hospitals need to do better.

“It’s irresponsible,” Fuhrman added. Coupled with parents begging for antibiotics in pediatricians’ offices, it’s “just creating a monster.”

Using antibiotics when they’re not needed is a long-standing problem, and the pandemic “has thrown a little bit of gas on the fire,” said Dr. Mark Schleiss, a pediatrics professor at the University of Minnesota Medical School.

Although fears of covid-19 mean fewer parents are taking their children to doctors’ offices and some have skipped routine visits for their kids, children are still getting antibiotics through telemedicine visits that don’t allow for in-person exams. And research shows more than 5,000 children infected with the coronavirus were hospitalized between late May and late September. If symptoms point toward a bacterial infection on top of the coronavirus, Schleiss said, doctors sometimes prescribe antibiotics, which don’t work on viruses, until tests rule out bacteria.

At the same time, Newland said, the demands of caring for COVID patients take time away from what are known as “stewardship” programs aimed at measuring and improving how antibiotics are prescribed. Often such efforts involve continuing education courses for health care professionals on how to use antibiotics safely, but the pandemic has made those more difficult to host.

“There’s no doubt: We’ve seen some extra use of antibiotics,” Newland said. “The impact of the pandemic on antibiotic use will be significant.”

Habits Drive Superbug Growth

Antibiotic resistance occurs through random mutation and natural selection. Those bacteria most susceptible to an antibiotic die quickly, but surviving germs can pass on resistant features, then spread. The process is driven by prescribing habits that lead to high levels of antibiotic use.

A March study in the journal Infection Control & Hospital Epidemiology found that the rates of antibiotic use on patients at 51 children’s hospitals ranged from 22% to 52%. Some of those medications treated actual bacterial infections, but others were given in hopes of preventing infections or when doctors didn’t know what was causing a problem.

“I hear a lot about antibiotic use for the ‘just in case’ scenarios,” said Dr. Joshua Watson, director of the antimicrobial stewardship program at Nationwide Children’s Hospital in Ohio. “We underestimate the downsides.”

Newland said each specialty in medicine has its own culture around antibiotic use. Many surgeons, for example, routinely use antibiotics to prevent infection after operations.

Outside of hospitals, doctors have long been criticized for prescribing antibiotics too often for ailments such as ear infections, which can sometimes go away on their own or can be caused by viruses that antibiotics won’t counter.

Dr. Shannon Ross, an associate professor of pediatrics and microbiology at the University of Alabama at Birmingham, said not all doctors have been taught how to correctly use antibiotics.

“Many of us don’t realize we’re doing it,” she said of overuse. “It’s sort of not knowing what you’re doing until someone tells you.”

All this drives the growth of numerous superbugs in the very population served by these hospitals. Numerous studies, including one published in the Journal of Pediatrics in March, cite the rise among kids of C. diff, which causes gastrointestinal problems. A 2017 study in the Journal of the Pediatric Infectious Diseases Society found that cases of a certain type of multidrug-resistant Enterobacteriaceae rose 700% in American children in just eight years. And a steady stream of research points to the stubborn prevalence in kids of the better-known MRSA, or methicillin-resistant Staphylococcus aureus.

Superbug infections can be extremely difficult — and sometimes impossible — to treat. Doctors often must turn to strong medicines with side effects or give drugs intravenously.

“It’s getting more and more worrisome,” Ross said. “We have had patients we have not been able to treat because we’ve had no antibiotics available” that could kill the germs.

Doctors say the world is nearing a “post-antibiotic era,” when antibiotics no longer work and common infections can kill.

A Monster Unleashed

Superbugs spawned by antibiotic overuse put everyone at risk.

Like her daughter, Fuhrman also suffered through a C. diff infection, getting sick after taking antibiotics following a root canal in 2012. While killing harmful germs, antibiotics can also destroy those that protect against infection. Fuhrman cycled in and out of the hospital for months. When she finally got better, she tried to avoid using antibiotics and never gave them to her daughter.

That’s because antibiotics affect your microbiome by wiping out bad germs but also the good germs that protect your body against infections.

Pearl’s first symptoms of C. diff arose about three years later, at around 20 months old. Fuhrman noticed her daughter was having lots of bowel movements. The mom eventually found pus and blood in her daughter’s stools. One day, Pearl was so pale and weak that Fuhrman took her to the emergency room. She was discharged, then spiked a fever and returned to the hospital.

Doctors treated Pearl with Flagyl, a broad-spectrum antibiotic. But two days after the last dose, she went downhill. The infection had returned. She recovered only after going to the Mayo Clinic in Rochester, Minnesota, for a fecal microbiota transplantation, in which she received healthy donor stool from her dad through a colonoscopy.

Since her family’s ordeal, Fuhrman has been trying to raise awareness of superbugs and antibiotic overuse. She serves on the board of the Peggy Lillis Foundation, a C. diff education and advocacy organization, and has testified before a presidential advisory committee in Washington, D.C., about superbugs and antibiotic stewardship.

In March, the Centers for Medicare & Medicaid Services began requiring all hospitals to document that they have antibiotic stewardship programs.

One approach, Schleiss said, is to restrict antibiotics by “saving our most magic bullets for the most desperate situations.” Another is to stop antibiotics at, say, 72 hours, after reassessing whether patients need them. Meanwhile, doctors are calling for more research into antibiotic use in children.

Fuhrman said hospitals must do all they can to stop superbug infections. The stakes are enormous, she said, pointing toward Pearl, now a 7-year-old first grader who likes to wear a pink hair bow and paint her tiny fingernails a rainbow of pastel colors.

“Antibiotics are great, but they have to be used wisely,” Fuhrman said. “The problem of superbugs is here. It’s in our backyard now, and it’s just getting worse.”

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

As the covid-19 pandemic heads for a showdown with vaccines it’s expected to lose, many experts in the field of emerging infectious diseases are already focused on preventing the next one.

They fear another virus will leap from wildlife into humans, one that is far more lethal but spreads as easily as SARS-CoV-2, the strain of coronavirus that causes covid-19. A virus like that could change the trajectory of life on the planet, experts say.

“What keeps me up at night is that another coronavirus like MERS, which has a much, much higher mortality rate, becomes as transmissible as covid,” said Christian Walzer, executive director of health at the Wildlife Conservation Society. “The logistics and the psychological trauma of that would be unbearable.”

SARS-CoV-2 has an average mortality rate of less than 1%, while the mortality rate for Middle East respiratory syndrome, or MERS — which spread from camels into humans — is 35%. Other viruses that have leapt the species barrier to humans, such as bat-borne Nipah, have a mortality rate as high as 75%.

“There is a huge diversity of viruses in nature, and there is the possibility that one has the Goldilocks characteristics of pre-symptomatic transmission with a high fatality rate,” said Raina Plowright, a virus researcher at the Bozeman Disease Ecology Lab in Montana. (Covid-19 is highly transmissible before the onset of symptoms but fortunately is far less lethal than several other known viruses.) “It would change civilization.”

That’s why in November the German Federal Foreign Office and the Wildlife Conservation Society held a virtual conference called One Planet, One Health, One Future, aimed at heading off the next pandemic by helping world leaders understand that killer viruses like SARS-CoV-2 — and many other less deadly pathogens — are unleashed on the world by the destruction of nature.

With the world’s attention gripped by the spread of the coronavirus, infectious disease experts are redoubling their efforts to show the robust connection between the health of nature, wildlife and humans. It is a concept known as One Health.

While the idea is widely accepted by health officials, many governments have not factored it into policies. So the conference was timed to coincide with the meeting of the world’s economic superpowers, the G20, to urge them to recognize the threat that wildlife-borne pandemics pose, not only to people but also to the global economy.

The Wildlife Conservation Society — America’s oldest conservation organization, founded in 1895 — has joined with 20 other leading conservation groups to ask government leaders “to prioritize protection of highly intact forests and other ecosystems, and work in particular to end commercial wildlife trade and markets for human consumption as well as all illegal and unsustainable wildlife trade,” they said in a recent press release.

Experts predict it would cost about $700 billion to institute these and other measures, according to the Wildlife Conservation Society. On the other hand, it’s estimated that covid-19 has cost $26 trillion in economic damage. Moreover, the solution offered by those campaigning for One Health goals would also mitigate the effects of climate change and the loss of biodiversity.

The growing invasion of natural environments as the global population soars makes another deadly pandemic a matter of when, not if, experts say — and it could be far worse than covid. The spillover of animal, or zoonotic, viruses into humans causes some 75% of emerging infectious diseases.

But multitudes of unknown viruses, some possibly highly pathogenic, dwell in wildlife around the world. Infectious disease experts estimate there are 1.67 million viruses in nature; only about 4,000 have been identified.

SARS-CoV-2 likely originated in horseshoe bats in China and then passed to humans, perhaps through an intermediary host, such as the pangolin — a scaly animal that is widely hunted and eaten.

While the source of SARS-CoV-2 is uncertain, the animal-to-human pathway for other viral epidemics, including Ebola, Nipah and MERS, is known. Viruses that have been circulating among and mutating in wildlife, especially bats, which are numerous around the world and highly mobile, jump into humans, where they find a receptive immune system and spark a deadly infectious disease outbreak.

“We’ve penetrated deeper into eco-zones we’ve not occupied before,” said Dennis Carroll, a veteran emerging infectious disease expert with the U.S. Agency for International Development. He is setting up the Global Virome Project to catalog viruses in wildlife in order to predict which ones might ignite the next pandemic. “The poster child for that is the extractive industry — oil and gas and minerals, and the expansion of agriculture, especially cattle. That’s the biggest predictor of where you’ll see spillover.”

When these things happened a century ago, he said, the person who contracted the disease likely died there. “Now an infected person can be on a plane to Paris or New York before they know they have it,” he said.

Meat consumption is also growing, and that has meant either more domestic livestock raised in cleared forest or “bush meat” — wild animals. Both can lead to spillover. The AIDS virus, it’s believed, came from wild chimpanzees in central Africa that were hunted for food.

One case study for how viruses emerge from nature to become an epidemic is the Nipah virus.

Nipah is named after the village in Malaysia where it was first identified in the late 1990s. The symptoms are brain swelling, headaches, a stiff neck, vomiting, dizziness and coma. It is extremely deadly, with as much as a 75% mortality rate in humans, compared with less than 1% for SARS-CoV-2. Because the virus never became highly transmissible among humans, it has killed just 300 people in some 60 outbreaks.

One critical characteristic kept Nipah from becoming widespread. “The viral load of Nipah, the amount of virus someone has in their body, increases over time” and is most infectious at the time of death, said the Bozeman lab’s Plowright, who has studied Nipah and Hendra. (They are not coronaviruses, but henipaviruses.) “With SARS-CoV-2, your viral load peaks before you develop symptoms, so you are going to work and interacting with your family before you know you are sick.”

If an unknown virus as deadly as Nipah but as transmissible as SARS-CoV-2 before an infection was known were to leap from an animal into humans, the results would be devastating.

Plowright has also studied the physiology and immunology of viruses in bats and the causes of spillover. “We see spillover events because of stresses placed on the bats from loss of habitat and climatic change,” she said. “That’s when they get drawn into human areas.” In the case of Nipah, fruit bats drawn to orchards near pig farms passed the virus on to the pigs and then humans.

“It’s associated with a lack of food,” she said. “If bats were feeding in native forests and able to nomadically move across the landscape to source the foods they need, away from humans, we wouldn’t see spillover.”

A growing understanding of ecological changes as the source of many illnesses is behind the campaign to raise awareness of One Health.

One Health policies are expanding in places where there are likely human pathogens in wildlife or domestic animals. Doctors, veterinarians, anthropologists, wildlife biologists and others are being trained and training others to provide sentinel capabilities to recognize these diseases if they emerge.

The scale of preventive efforts is far smaller than the threat posed by these pathogens, though, experts say. They need buy-in from governments to recognize the problem and to factor the cost of possible epidemics or pandemics into development.

“A road will facilitate a transport of goods and people and create economic incentive,” said Walzer, of the Wildlife Conservation Society. “But it will also provide an interface where people interact and there’s a higher chance of spillover. These kinds of costs have never been considered in the past. And that needs to change.”

The One Health approach also advocates for the large-scale protection of nature in areas of high biodiversity where spillover is a risk.

Joshua Rosenthal, an expert in global health with the Fogarty International Center at the National Institutes of Health, said that while these ideas are conceptually sound, it is an extremely difficult task. “These things are all managed by different agencies and ministries in different countries with different interests, and getting them on the same page is challenging,” he said.

Researchers say the clock is ticking. “We have high human population densities, high livestock densities, high rates of deforestation — and these things are bringing bats and people into closer contact,” Plowright said. “We are rolling the dice faster and faster and more and more often. It’s really quite simple.”

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Funeral director Kevin Spitzer has been overwhelmed with covid-related deaths in the small city of Aberdeen, South Dakota.

He and his two colleagues at the Spitzer-Miller Funeral Home have been working 12-15 hours a day, seven days a week, to keep up with the demand in the community of 26,000. The funerals are sparsely attended, which would have been unthinkable before the pandemic.

“We had a funeral for a younger man one recent Saturday, and not 20 people came, because most everyone was just afraid,” he said.

As covid-19 has spread from big cities to rural communities, it has stressed not only hospitals, but also what some euphemistically call “last responders.” The crush has overwhelmed morgues, funeral homes and religious leaders, required ingenuity and even changed the rituals of honoring the dead.

Officials in many smaller cities and towns learned from seeing the overflow of bodies during last spring’s first wave of covid deaths in places such as Detroit, where nurses at Detroit Medical Center Sinai-Grace Hospital alerted the media to bodies accumulating in hospital storage rooms. They watched as New York hospitals and funeral homes marshaled refrigerated trucks to store bodies. More than 600 bodies of people who died in the spring COVID surge remain in freezer trucks on the Brooklyn waterfront because officials can’t find next of kin, or relatives are also sick or unable to pay for burial.

People like Dr. Robert Kurtzman, Montana’s chief medical examiner, took heed. Last spring, he worked with funeral directors and others to study the state’s morgue capacity. After looking at covid projections, the state arranged with the Montana National Guard to have 13 refrigerated semitrucks ready to dispatch anywhere in the state.

“We are already in a precarious position, and the projections present a scary proposition,” he said. “We need to be ready for worst-case scenarios.”

Chad Towner, CEO of St. Joseph Health System, which has two hospitals in northern Indiana, ordered two refrigerated semitrailers in April. For a time, things were relatively quiet. But the pandemic has hit.

“I told a friend who was a covid doubter that if my wife needed a bed today, I could not arrange one. That’s the dire situation we face here,” Towner said. “All our competitors in the area are in the same boat, and we’re working together instead of competing.”

Although the freezer trucks have not yet been needed, he worries that the sharp increase in cases, and those anticipated from holiday gatherings, will make last-resort measures necessary.

“We recently had four deaths in one afternoon,” said Towner. “A priest approached me to say he’d been asked to provide last rites to three patients in one hour.”

Moving bodies from the hospital morgue is a slower process than usual, he said. “Morticians and funeral homes are overflowing as well. Families that are sick or quarantined at the time of the loved one’s death often can’t work with us on a transfer, meaning bodies are here longer. The entire system is stressed to the tipping point,” said Towner.

Private enterprise has created a solution for smaller communities. In Bozeman, Montana, a specialty truck company has retrofitted trailers that can be pulled by an SUV or a pickup.

Acela Truck Co. has already sold hundreds of the pull-behind refrigerated units created in response to the covid pandemic. They range from 9 to 53 feet and have racks that each hold four body trays. “We’re very busy and have orders in all of the lower 48 states,” said CEO David Ronsen. Acela has partnered with Mopec, a Michigan autopsy supply company, to help sell and deliver the new product.

Billings Clinic in Montana also anticipated a flood of deaths last spring by reserving a semitrailer for delivery, if needed. The clinic, which has just two morgue spaces, has dealt with 80 covid deaths, including seven on the weekend after Thanksgiving.

Chief Nursing Officer Laurie Smith said the hospital is at capacity, despite adding beds by converting office space and building an addition. The hospital, which currently has 335 beds, so far has handled the additional deaths through what she calls a “sad partnership” with funeral homes, which have been quickly picking up bodies the hospital cannot store.

The hospital does its best to allow relatives to say goodbye, but that often involves family members standing at an interior window outside the patient’s room, using a computer tablet to communicate their last words.

That is just one way in which the rituals of grieving have changed during the covid pandemic.

Typical congregational hymns are pretty much gone, as are choirs.

“We are using mostly recordings, sometimes a soloist,” said Spitzer.

Funeral home directors who pride themselves on spending time comforting grieving families say they are so busy that some days they have to rush out from one funeral to begin the next one.

“Families are being robbed of the whole funeral rite experience and losing the support of having friends and family around them,” said Shauna Kjos-Miotke of Fiksdal Funeral Home in Webster, South Dakota.

Native communities have not only been among the hardest hit with covid illnesses and deaths, but their grieving rituals have been among the most seriously disrupted.

“Normally a funeral is a two- or three-day process with hundreds of people,” said Josiah Hugs, a Crow tribal member who is the outreach coordinator for Billings Urban Indian Health and Wellness Center. “Now there is no time to tell stories about the person, not a lot of singing and praying. I’ve been to three recent covid funerals, and everything was at the burial site, with maybe 30 people sitting in their cars and not getting out.”

Covid has even affected body disposal. A survey by the National Funeral Directors Association found that more than half of their members reported increased cremation rates due to covid. The NFDA also found that half its members have clients who have postponed services to hold a memorial later.

In the largely impoverished Hidalgo County, a Texas border area, county officials began using covid funds to help cover the burial costs for struggling families. Then they begin hearing of the emotional costs, including the anguish of videoconferenced funerals, such as for a family that had lost a husband, a mother and an aunt in one month. They wondered if there would be interest in an alternative way to honor the dead.

“We sent out a social media post asking if anyone wanted to post a photograph of a relative who died of covid if we created a county memorial page,” said county spokesperson Carlos Sanchez, who himself barely survived a bout with covid in July. “Within minutes, we got more than 20 emails. Several sent photos of multiple relatives. They want them to be remembered.”

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Ted Howard started taking Truvada a few years ago because he wanted to protect himself against HIV, the virus that causes AIDS. But the daily pill was so pricey he was seriously thinking about giving it up.

Under his insurance plan, the former flight attendant and customer service instructor owed $500 in copayments every month for the drug and an additional $250 every three months for lab work and clinic visits.

Luckily for Howard, his doctor at Las Vegas’ Huntridge Family Clinic, which specializes in LGBTQ care, enrolled him in a clinical trial that covered his medication and other costs in full.

“If I hadn’t been able to get into the trial, I wouldn’t have kept taking PrEP,” said Howard, 68, using the shorthand term for “preexposure prophylaxis.” Taken daily, these drugs — like Truvada — are more than 90% effective at preventing infection with HIV.

Starting this month, most people with private insurance will no longer have to decide whether they can afford to protect themselves against HIV. Most health plans must begin to cover the drugs then without charging consumers anything out-of-pocket (some plans already began doing so last year).

Drugs in this category — Truvada, Descovy and, newly available, a generic version of Truvada — received an “A” recommendation by the U.S. Preventive Services Task Force. Under the Affordable Care Act, preventive services that receive an “A” or “B” rating by the task force, a group of medical experts in prevention and primary care, must be covered by most private health plans without making members share the cost, usually through copayments or deductibles. Only plans that are grandfathered under the health law are exempt.

The task force recommended PrEP for people at high risk of HIV infection, including men who have sex with men and injection drug users.

[khn_slabs slabs=”241887″ view=”inline” /]

In the United States, more than 1 million people live with HIV, and nearly 40,000 new HIV cases are diagnosed every year. Yet fewer than 10% of people who could benefit from PrEP are taking it. One key reason is that out-of-pocket costs can exceed $1,000 annually, according to a study published in the American Journal of Public Health last year. Required periodic blood tests and doctor visits can add hundreds of dollars to the cost of the drug, and it’s not clear whether insurers are required to pick up all those costs.

“Cost sharing has been a problem,” said Michael Crews, policy director at One Colorado, an advocacy group for the LGBTQ community. “It’s not just getting on PrEP and taking a pill. It’s the lab and clinical services. That’s a huge barrier for folks.”

California officials have already sought to address the problem, including guarantees that PrEP drugs and care provided along with the drugs are covered without cost sharing for patients. The state also bans requiring prior approval from insurers to take the drugs and restrictions on the use of some of the drugs if cheaper ones are available.

“California did go further issuing the guidance to cover ancillary services with no cost sharing and we also have the bill preventing [prior authorization] and step therapy for PrEP meds,” said Anne Donnelly, director of state health care policy at the San Francisco AIDS Foundation.

The California requirements, however, apply only to health insurance policies regulated by the state. Employers that pay their workers’ claims directly, rather than buying health insurance, don’t have to comply with the California rules.

Whether you’re shopping for a new plan during open enrollment or want to check out what your current plan covers, here are answers to questions you may have about the new preventive coverage requirement.

Q: How can people find out whether their health plan covers PrEP medications without charge?

The plan’s list of covered drugs, called a formulary, should spell out which drugs are covered, along with details about which drug tier they fall into. Drugs placed in higher tiers generally have higher cost sharing. That list should be online with the plan documents that give coverage details.

Sorting out coverage and cost sharing can be tricky. Both Truvada and Descovy can also be used to treat HIV, and if they are taken for that purpose, a plan may require members to pay some of the cost. But if the drugs are taken to prevent HIV infection, patients shouldn’t owe anything out-of-pocket, no matter which tier they are on.

In a recent analysis of online formularies for plans sold on the ACA marketplaces, Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, found that many plans seemed out of compliance with the requirement to cover PrEP without cost sharing this year.

But representatives for Oscar and Kaiser Permanente, two insurers that were called out in the analysis for lack of compliance, said the drugs are covered without cost sharing in plans nationwide if they are taken to prevent HIV. Schmid later revised his analysis to reflect Oscar’s coverage.

Coverage and cost-sharing information needs to be transparent and easy to find, Schmid said.

“I acted like a shopper of insurance, just like any person would do,” he said. “Even when the information is correct, [it’s so] difficult to find [and there’s] no uniformity.”

It may be necessary to call the insurer directly to confirm coverage details if the information on the website is unclear.

Q: Are all three drugs covered without cost sharing?

Health plans have to cover at least one of the drugs in this category — Descovy and the brand and generic versions of Truvada — without cost sharing. People may have to jump through some hoops to get approval for a specific drug, however. For example, Oscar plans sold in 18 states cover the three PrEP options without cost sharing. The generic version of Truvada doesn’t require prior authorization by the insurer. But if someone wants to take the name-brand drug, they have to go through an approval process. Descovy, a newer drug, is available without cost sharing only if people are unable to use Truvada or its generic version because of clinical intolerance or other issues.

Q: What about the lab work and clinical visits that are necessary while taking PrEP? Are those services also covered without cost sharing?

That is the thousand-dollar question. People who are taking drugs to prevent HIV infection need to meet with a clinician and have bloodwork every three months to test for HIV, hepatitis B and sexually transmitted infections, and to check their kidney function.

The task force recommendation doesn’t specify whether these services must also be covered without cost sharing, and advocates say federal guidance is necessary to ensure they are free.

“If you’ve got a high-deductible plan and you’ve got to meet it before those services are covered, that’s going to add up,” said Amy Killelea, senior director of health systems and policy at the National Alliance of State & Territorial AIDS Directors. “We’re trying to emphasize that it’s integral to the intervention itself.”

A handful of states have programs that help people cover their out-of-pocket costs for lab and clinical visits, generally based on income.

There is precedent for including free ancillary care as part of a recommended preventive service. After consumers and advocates complained, the Centers for Medicare & Medicaid Services (CMS) clarified that under the ACA removing a polyp during a screening colonoscopy is considered an integral part of the procedure and patients shouldn’t be charged for it.

CMS officials declined to clarify whether PrEP services such as lab work and clinical visits are to be covered without cost sharing as part of the preventive service and noted that states generally enforce such insurance requirements. “CMS intends to contact state regulators, as appropriate, to discuss issuer’s compliance with the federal requirements and whether issuers need further guidance on which services associated with PrEP must be covered without cost sharing,” the agency said in a statement.

Q: What if someone runs into roadblocks getting a plan to cover PrEP or related services without cost sharing?

If an insurer charges for the medication or a follow-up visit, people may have to go through an appeals process to fight it.

“They’d have to appeal to the insurance company and then to the state if they don’t succeed,” said Nadeen Israel, vice president of policy and advocacy at the AIDS Foundation of Chicago. “Most people don’t know to do that.”

Q: Are uninsured people also protected by this new cost-sharing change for PrEP?

Unfortunately, no. The ACA requirement to cover recommended preventive services without charging patients applies only to private insurance plans. People without insurance don’t benefit. Gilead, which makes both Truvada and Descovy, has a patient assistance program for the uninsured.

This story also ran on Fortune. It can be republished for free.

Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.

Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn’t afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.

Every year, however, Clark has to find new grants to cover her expensive cancer drug.

“It’s shameful that people should have to scramble to find funding for medical care,” she said. “I count my blessings, because other patients have stories that are a lot worse than mine.”

Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It’s often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients’ 5% coinsurance costs once they hit $6,550 in drug spending for this year (rising from $6,350 in 2020), except for very low-income beneficiaries.

President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there’s disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.

That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America’s uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.

Growing Expense of Specialty, Cancer Medicines

Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)

The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.

For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark’s drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes “pricing should be put in the context of the value, or benefit, the medicine delivers to patients, health care systems and society overall,” a spokesperson for Bristol Myers Squibb said via email.

As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program’s catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees’ average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.

The median annual income for Medicare beneficiaries is $26,000.

Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor’s office and they have a Medigap or Medicare Advantage plan, which caps those expenses.

But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.

“With the high cost of drugs today, that 5% can be a third or more of a patient’s Social Security check,” said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.

This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn’t allowed by Medicare.

‘This Is a Little Nuts’

All this has caused financial and emotional turmoil for people who face a life-threatening disease.

Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That’s because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.

But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.

Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she’d pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won’t know until sometime this month.

“It’s just strange you have to make a decision about your treatment based on your finances rather than what’s the right drug for you,” she said. “I always thought that when I get to Medicare age I’ll be able to breathe a sigh of relief. This is a little nuts.”

Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.

“If I didn’t do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn’t get the drug, which is awful,” said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. “Patients would just say, ‘I can’t afford it. I’ll just die.’”

The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.

But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.

“If you are a normal consumer, you don’t know much about any of this until you get sick and all of a sudden you find out you can’t afford your medication,” he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.

Yet many don’t. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.

Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. “People tell me they haven’t started treatment because they don’t have money to pay,” she said. “No one in this country should have to choose between housing, food or medicine. It should never be that way, never.”

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Yolanda Coar was 40 when she died of COVID-19 in August 2020 in Augusta, Georgia. She was also a nurse manager, and one of nearly 3,000 frontline workers who have died in the U.S. fighting this virus, according to an exclusive investigation by The Guardian and KHN.

Read more of the health workers’ stories behind the statistics — their personalities, passions and quirks. “Lost on the Frontline” examines: Did they have to die?

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).