Category: From California Healthline.org

As Xinyi Christine Zhang watched the COVID-19 death toll among health care workers rise this spring, she wanted to find a way to give solace — and thanks — to their families.

The teenager, of South Brunswick Township, New Jersey, joined her church in commemorating members who had died of COVID-19. But she was driven to try to do more, something personal.

“I thought there could be something more meaningful I could do for the families of the doctors who lost their lives fighting the pandemic,” said Christine, 15.

A gifted artist, Christine resolved to draw the fallen U.S. health care workers in colorful memorial portraits, distribute them to their families and post them on her website. She wanted the relatives to know that people appreciated those who were trying to help Americans heal while putting their own lives in jeopardy.

Christine frequently draws portraits for her friends and knew memorial portraits are usually rather expensive. She realized that drawing front-line workers could actually help families and was a better use of her time than drawing her friends — whom she said she’d drawn “like 10 times already.”

According to KHN and The Guardian’s “Lost on the Frontline” project, more than 1,000 health care workers in the United States have died after helping patients battle the coronavirus. The pandemic overburdened many hospitals and led to shortages in protective equipment such as masks and gowns that endangered many of those assisting patients.

Christine found her subjects through that project. She set up a website to upload her portraits and to let families request drawings of their loved ones. Her portraits are free and easily accessible online, Christine said.

She has finished and posted 17 portraits since she started in late April. Each one takes six to eight hours, and Christine spreads that work out over a few days so as not to interfere with her school assignments. Using a close-up image as a reference, she first digitally sketches the proportions of the person’s face with a pencil and then adds unique colors to “really bring life to the portrait.”

Her largest obstacle is getting in touch with the families. She hopes more families will request portraits through her website so she can work with them from the beginning.

One person Christine featured is Sheena Miles, a semiretired nurse from Mississippi who died of COVID-19 on May 1. Christine tracked down her son, Tom Miles, who expressed his gratitude on Facebook.

“When you’re going through a loss like that, like the loss of a mom, to get the email from out of the blue just kind of gives you a profound feeling that there are some good people in this world,” Tom Miles said in an interview. “For her to have such talent at such a young age, and that she really cares about people she doesn’t even know — she is what makes America what it is today.”

This kind of response is exactly what Christine aims for — she wants the families to know that she is thankful for the work of their loved ones.

“Someone they don’t know personally, even a stranger, appreciates what their loved one has done,” she said.

The portraits may be a source of brightness for grieving families, said Christine’s mother, Helen Liu.

“I hope that families who receive these portraits will have a feeling of hope that better times will come,” Liu said. “A memorial is something meaningful and permanent, and I feel her portraits capture the happiness that will forever be with them.”

She hopes to get additional requests for the memorials from families.

In addition to drawing, Christine is a member of the South Brunswick High School’s Science Olympiad team and helps build projects for competitions. She’s interested in exploring engineering or product design as a career. Anything related to building or creating, she said.

She plans to either major or minor in art in college. For now, she wants to continue this project throughout high school — hopefully with help from others who know how to create digital art. She has a form on her website where others with art experience can sign up to help out. She said they can also add “other heroes in our society, such as war veterans or firefighters.”

“There are so many people that need to be honored, but I can’t do it by myself,” Christine said.

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.

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As the coronavirus began to spread through Minneapolis this spring, Health Commissioner Gretchen Musicant tore up her budget to find funds to combat the crisis. Money for test kits. Money to administer tests. Money to hire contact tracers. Yet even more money for a service that helps tracers communicate with residents in dozens of languages.

While Musicant diverted workers from violence prevention and other core programs to the COVID-19 response, state officials debated how to distribute $1.87 billion Minnesota received in federal aid.

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As she waited for federal help, the Minnesota Zoo got $6 million in federal money to continue operations, and a debt collection company outside Minneapolis received at least $5 million from the federal Paycheck Protection Program, according to federal data.

It was not until Aug. 5 — months after Congress approved aid for the pandemic — that Musicant’s department finally received $1.7 million, the equivalent of $4 per Minneapolis resident.

“It’s more a hope and a prayer that we’ll have enough money,” Musicant said.

Since the pandemic began, Congress has set aside trillions of dollars to ease the crisis. A joint KHN and Associated Press investigation finds that many communities with big outbreaks have spent little of that federal money on local public health departments for work such as testing and contact tracing. Others, like Minnesota, were slow to do so.

For example, the states, territories and 154 large cities and counties that received allotments from the $150 billion Coronavirus Relief Fund reported spending only 25% of it through June 30, according to reports that recipients submitted to the U.S. Treasury Department.

Many localities have deployed more money since that June 30 reporting deadline, and both Republican and Democratic governors say they need more to avoid layoffs and cuts to vital state services. Still, as cases in the U.S. top 5.2 million and deaths soar past 167,000, Republicans in Congress are pointing to the slow spending to argue against sending more money to state and local governments to help with their pandemic response.

“States and localities have only spent about a fourth of the money we already sent them in the springtime,” Senate Majority Leader Mitch McConnell said Tuesday. Congressional Democrats’ efforts to get more money for states, he said, “aren’t based on math. They aren’t based on the pandemic.”

Negotiations over a new pandemic relief bill broke down last week, in part because Democrats and Republicans could not agree on funding for state and local governments.

Minneapolis Health Commissioner Gretchen Musicant visits a COVID-19 testing event at Incarnation-Sagrado Corazon Church on Aug. 15, 2020, in Minneapolis. As the coronavirus spread through Minneapolis this spring, Musicant tore up her budget to find money to combat the crisis. It was not until Aug. 5 — months after Congress approved the pandemic relief aid — that her department received $1.7 million, the equivalent of $4 per Minneapolis resident. (AP Photo/Craig Lassig)

KHN and the AP requested detailed spending breakdowns from recipients of money from the Coronavirus Relief Fund — created in March as part of the $1.9 trillion CARES Act — and received responses from 23 states and 62 cities and counties. Those entities dedicated 23% of their spending from the fund through June to public health and 7% to public health and safety payroll.

An additional 22% was transferred to local governments, some of which will eventually pass it down to health departments. The rest went to other priorities, such as distance learning.

So little money has flowed to some local health departments for many reasons: Bureaucracy has bogged things down, politics have crept into the process, and understaffed departments have struggled to take time away from critical needs to navigate the red tape required to justify asking for extra dollars.

“It does not make sense to me how anyone thinks this is a way to do business,” said E. Oscar Alleyne, chief of programs and services at the National Association of County and City Health Officials. “We are never going to get ahead of the pandemic response if we are still handicapped.”

Last month, KHN and the AP detailed how state and local public health departments across the U.S. have been starved for decades. Over 38,000 public health worker jobs have been lost since 2008, and per capita spending on local health departments has been cut by 18% since 2010. That’s left them underfunded and without adequate resources to confront the coronavirus pandemic.

“Public health has been cut and cut and cut over the years, but we’re so valuable every time you turn on the television,” said Jan Morrow, the director and 41-year veteran of Ripley County health department in rural Missouri. “We are picking up all the pieces, but the money is not there. They’ve cut our budget until there’s nothing left.”

Politics and Red Tape

Why did the Minneapolis health department have to wait so long for CARES Act money?

Congress mandated that the Coronavirus Relief Fund be distributed to states and local governments based on population. Minneapolis, with 430,000 residents, missed the threshold of 500,000 people that would have allowed it to receive money directly.

The state of Minnesota, however, received $1.87 billion, a portion of which was meant to be sent to local communities. Lawmakers initially sent some state money to tide communities over until the federal money came through — the Minneapolis health department got about $430,000 in state money to help pay for things like testing.

But when it came time to decide how to use the CARES Act money, lawmakers in Minnesota’s Republican-controlled Senate and Democratic-controlled House were at loggerheads.

Myron Frans, commissioner of Minnesota Management and Budget, said that disagreement, on top of the economic crisis and pandemic, left the legislature in turmoil.

After the police killing of George Floyd in Minneapolis, the city erupted in protests over racial injustice, making a difficult situation even more challenging.

Dr. Jackie Kawiecki stands outside her home on Aug. 15, 2020, her day off from her job at a medical station in Richfield, Minnesota, near the location where George Floyd was killed. “I still don’t think that the amount of testing offered is adequate, from a public health standpoint,” Kawiecki says. (AP Photo/Craig Lassig)

Democratic Gov. Tim Walz favored targeting some of the money to harder-hit communities, a move that might have helped Minneapolis, where cases have surged since mid-July. But lawmakers couldn’t agree. Negotiations dragged on, and a special session merely prolonged the standoff.

Finally, the governor divvied up the money using a population-based formula developed earlier by Republican and Democratic legislative leaders that did not take into account COVID-19 caseloads or racial disparities.

“We knew we needed to get it out the door,” Frans said.

The state then sent hundreds of millions of dollars to local communities. Still, even after the money got to Minneapolis a month ago, Musicant had to wait as city leaders made difficult choices about how to spend the money as the economy cratered and the list of needs grew.

“Even when it gets to the local government, you still have to figure out how to get it to local public health,” Musicant said.

Meanwhile, some in Minneapolis have noticed a lack of services. Dr. Jackie Kawiecki has been providing help to people at a volunteer medical station near the place where Floyd was killed ― an area that at times has drawn hundreds or thousands of people per day. She said the city did not do enough free, easy-to-access testing in its neighborhoods this summer.

“I still don’t think that the amount of testing offered is adequate, from a public health standpoint,” Kawiecki said.

A coalition of groups that includes the National Governors Association has blamed the spending delays on the federal government, saying the final guidance on how states could spend the money came late in June, shortly before the reporting period ended. The coalition said state and local governments had moved “expeditiously and responsibly” to use the money as they deal with skyrocketing costs for health care, emergency response and other vital programs.

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New York’s Nassau County was among six counties, cities and states that had spent at least 75% of its funds by June 30.

While most of the money was not spent before then, the National Association of State Budget Officers says a July 23 survey of 45 states and territories found they had allocated, or set aside, an average of 74% of the money.

But if they have, that money has been slow to make it to many local health departments.

As of mid-July in Missouri, at least 50 local health departments had yet to receive any of the federal money they requested, according to a state survey. The money must first flow through local county commissioners, some of whom aren’t keen on sending money to public health agencies.

“You closed their businesses down in order to save their people’s lives and so that hurt the economy,” said Larry Jones, executive director of the Missouri Center for Public Health Excellence, an organization of public health leaders. “So they’re mad at you and don’t want to give you money.”

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The winding path federal money takes as it makes its way to states and cities also could exacerbate the stark economic and health inequalities in the U.S. if equity isn’t considered in decision-making, said Wizdom Powell, director of the University of Connecticut Health Disparities Institute.

“Problems are so vast you could unintentionally further entrench inequities just by how you distribute funds,” Powell said.

‘Everything Fell Behind’

The amounts eventually distributed can induce head-scratching.

Some cities received large federal grants, including Louisville, Kentucky, whose health department was given $42 million by April, more than doubling its annual budget. Because of the way the money was distributed, Louisville’s health department alone received more money from the CARES Act than the entire government of the city of Minneapolis, which received $32 million in total.

Philadelphia’s health department was awarded $100 million from a separate fund from the Centers for Disease Control and Prevention.

Honolulu County, where COVID cases have remained relatively low, received $124,454 for every positive case it had reported as of Aug. 9, while El Paso County in Texas got just $1,685 per case. Multnomah County, Oregon — with nearly a quarter of its state’s COVID-19 cases — landed only 2%, or $28 million, of the state’s $1.6 billion allotment.

Rural Saline County in Missouri received the same funding as counties of similar size, even though the virus hit the area particularly hard. In April, outbreaks began tearing through a Cargill meatpacking plant and a local factory there. By late May, the health department confirmed 12 positive cases at a local jail.

Tara Brewer, Saline’s health department administrator, said phone lines were ringing off the hook, jamming the system. Eventually, several department employees handed out their personal cellphone numbers to take calls from residents looking to be tested or seeking care for coronavirus symptoms.

“Everything fell behind,” Brewer said.

The school vaccination clinic in April was canceled, and a staffer who works as a Spanish translator for the Women, Infants and Children nutritional program was enlisted to contact-trace for additional COVID-19 exposures. All food inspections stopped.

It was late July when $250,000 in federal CARES Act money finally reached the 11-person health department, Brewer said — four months after Congress approved the spending and three months after the county’s first outbreak.

That was far too late for Brewer to hire the army of contact tracers that might have helped slow the spread of the virus back in April. She said the money already has been spent on antibody testing and reimbursements for groceries and medical equipment the department had bought for quarantined residents.

Another problem: Some local health officials say that the laborious process required to qualify for some of the federal aid discourages overworked public health officials from even trying to secure more money and that funds can be uneven in arriving.

Volunteers work at a medical station on Aug. 15, 2020, near the location where George Floyd died in police custody in Minneapolis. Dr. Jackie Kawiecki organized the effort to help people at the site, an area that at times has drawn thousands of people per day. She says the city did not do enough free, easy-to-access COVID-19 testing in its neighborhoods this summer. (AP Photo/Craig Lassig)

Lisa Macon Harrison, public health director for Granville Vance Public Health in rural Oxford, North Carolina, said it’s tough to watch major hospital systems — some of which are sitting on billions in reserves — receive direct deposits, while her department received only about $122,000 through three grants by the end of July. Her team filled out a 25-page application just to get one of them.

She is now waiting to receive an estimated $400,000 more. By contrast, the Duke University Hospital System, which includes a facility that serves Granville, already has received over $67.3 million from the federal Provider Relief Fund.

“I just don’t understand the extra layers of onus for the bureaucracy, especially if hundreds of millions of dollars are going to the hospitals and we have to be responsible to apply for 50 grants,” she said.

The money comes from dozens of funds, including several programs within the CARES Act. Nebraska alone received money from 76 federal COVID relief funding sources.

Robert Miller, director of health for the Eastern Highlands Health District in Connecticut, which covers 10 towns, received $29,596 of the $2.5 million the state distributed to local departments from the CDC fund and nothing from CARES. It was only enough to pay for some contact tracing and employee mileage.

Miller said that he could theoretically apply for a little more from the Federal Emergency Management Agency, but that the reporting requirements — which include collecting every receipt — are extremely cumbersome for an already overburdened department.

So he wonders: “Is the squeeze worth the juice?”

Back in Minneapolis, Musicant said the new money from CARES allowed the department to run a free COVID-19 testing site Saturday, at a church that serves the Hispanic community about a mile from the site of Floyd’s killing.

It will take more money to do everything the community needs, she says, but with Congress deadlocked, she’s not sure they’ll get it anytime soon.

AP writers Camille Fassett and Steve Karnowski contributed to this report.

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Cuando el coronavirus comenzó a propagarse por Minneapolis esta primavera, la comisionada de salud Gretchen Musicant ajustó su presupuesto y encontró dinero para combatir la crisis. Dinero para los kits de prueba. Dinero para rastreadores de contactos. Dinero para un servicio que ayudara a comunicarse con los residentes en docenas de idiomas.

Cuando Musicant reubicaba a trabajadores de prevención de la violencia y otros programas básicos, los funcionarios estatales debatían cómo distribuir los $1,87 mil millones que Minnesota había recibido en ayuda federal.

Mientras esperaba, el zoológico de Minnesota obtuvo $6 millones en dinero federal para continuar sus operaciones, y una compañía de cobro de deudas fuera de Minneapolis recibió al menos $5 millones del Programa de Protección de Cheques de Pago federal, según datos federales.

No fue hasta el 5 de agosto —meses después de que el Congreso aprobara la ayuda para el coronavirus— que el departamento de Musicant finalmente recibió $1,7 millones, el equivalente a $4 por cada residente de la ciudad.

Desde que comenzó la pandemia, el Congreso ha reservado miles de millones para aliviar la crisis. Una investigación conjunta de Kaiser Health News y Associated Press encuentra que muchas comunidades con grandes brotes han gastado poco de ese dinero federal en los departamentos locales de salud pública para trabajos como pruebas y rastreo de contactos. Otras, como Minnesota, tuvieron respuestas lentas.

Por ejemplo, los estados, territorios y 154 grandes ciudades y condados que recibieron asignaciones del Fondo de Alivio para el Coronavirus de $150 mil millones informaron haber gastado sólo el 25% de ese dinero hasta el 30 de junio, según informes que los destinatarios presentaron al Departamento del Tesoro de los Estados Unidos.

La doctora Jackie Kawiecki posa fuera de su casa el sábado 15 de agosto, su día libre de su trabajo en una estación médica en Richfield, Minnesota, cerca del lugar donde George Floyd fue asesinado. “Todavía no creo que la cantidad de pruebas que se ofrecen sea adecuada, desde el punto de vista de la salud pública”, dice Kawiecki.(AP PHOTO/CRAIG LASSIG)

Muchas localidades han utilizado más dinero desde la fecha límite de presentación de informes del 30 de junio, y tanto los gobernadores republicanos como los demócratas dicen que necesitan más para evitar despidos y recortes en servicios estatales vitales.

Aún así, a medida que los casos en los Estados Unidos superan los 5,4 millones y las muertes confirmadas se elevan a más de 171,000, los republicanos en el Congreso señalan la lentitud del gasto para argumentar en contra del envío de más dinero a los gobiernos estatales y locales para ayudar en su respuesta a la pandemia.

El líder de la mayoría republicana del Senado, Mitch McConnell, dijo el martes 11 de agosto que los esfuerzos de los demócratas del Congreso para conseguir más dinero para los estados “no se basan en las matemáticas. No se basan en la pandemia”.

Las negociaciones sobre un nuevo proyecto de ley de ayuda se rompieron hace pocos días, en parte porque los demócratas y los republicanos no se pusieron de acuerdo sobre la financiación de los gobiernos estatales y locales.

KHN y AP solicitaron desgloses detallados de los gastos a los receptores del dinero del Fondo de Ayuda contra el Coronavirus —creado en marzo como parte de la Ley CARES de 1,9 mil millones— y recibieron respuestas de 23 estados y 62 ciudades y condados. Esas entidades dedicaron, hasta junio, el 23% de sus gastos del fondo a la salud pública y el 7% a la salud pública y a la seguridad de la nómina.

Un 22% adicional fue transferido a los gobiernos locales, algunos de los cuales eventualmente lo pasarán a los departamentos de salud.

La lentitud de la ayuda se debe a muchas razones, incluyendo la burocracia, la política y la falta de personal que dificulta a los departamentos navegar por el sistema.

“No tiene sentido para mí que alguien piense que ésta es la manera de hacer las cosas”, dijo E. Oscar Alleyne, jefe de programas y servicios de la Asociación Nacional de Funcionarios de Salud del Condado y la Ciudad.

Voluntarios trabajan el 15 de agosto, cerca del lugar en donde murió George Floyd bajo custodia policial en Minneapolis. (AP PHOTO/CRAIG LASSIG)

El Congreso ordenó que el Fondo de Alivio para el Coronavirus se distribuyera a los gobiernos estatales y locales en función de la población. Minneapolis, con 430,000 residentes, no alcanzó el umbral de 500,000 personas que le hubiera permitido recibir dinero directamente.

El estado de Minnesota recibió $1,87 mil millones, una parte de los cuales estaba destinada a ser enviada a las comunidades locales. Los legisladores inicialmente enviaron algo de dinero del estado para ayudar a las comunidades hasta que el dinero federal llegara. El departamento de salud de Minneapolis recibió unos $430,000 en dinero estatal.

Sin embargo, cuando llegó el momento de decidir cómo utilizar el dinero del CARES Act, los legisladores de Minnesota no se pusieron de acuerdo.

Entonces la policía de Minneapolis mató a George Floyd, y la ciudad estalló en protestas por la injusticia racial, haciendo la situación aún más difícil.

Finalmente, el gobernador demócrata Tim Walz decidió repartir el dinero utilizando una fórmula basada en la población, desarrollada anteriormente por los líderes legislativos republicanos y demócratas, que no tenía en cuenta los casos de COVID-19 ni las disparidades raciales.

El estado envió entonces cientos de millones de dólares a las comunidades locales. Aún así, incluso después que el dinero llegara a Minneapolis hace un mes, Musicant esperó a que los líderes de la ciudad decidieran cómo gastarlo.

Una coalición que incluye a la Asociación Nacional de Gobernadores ha culpado de los retrasos en el gasto al gobierno federal, diciendo que la orientación final sobre cómo los estados podrían gastar el dinero no llegó hasta finales de junio. La coalición comunicó que los gobiernos estatales y locales habían actuado “de manera expeditiva y responsable” para utilizar el dinero.

Algunas ciudades recibieron grandes subsidios federales, entre ellas Louisville, en Kentucky, cuyo departamento de salud obtuvo $42 millones en abril, lo que duplicó con creces su presupuesto.

Pero a mediados de julio en Missouri, al menos 50 departamentos de salud locales aún no habían recibido el dinero federal que habían solicitado, según una encuesta estatal. El dinero debe fluir primero a través de los comisionados locales del condado, algunos de los cuales no están dispuestos a enviar dinero a las agencias de salud pública que cerraron los negocios.

El condado rural de Saline, en Missouri, recibió los mismos fondos que los condados de tamaño similar, a pesar de que el virus golpeó la zona con especial dureza, con brotes en una planta de empaquetado de carne y en una fábrica.

Fue a finales de julio cuando $250,000 en dinero de la Ley Federal CARES finalmente llegaron al departamento de salud de 11 personas —demasiado tarde para contratar al ejército de rastreadores de contacto que podrían haber frenado el virus en abril, señaló Tara Brewer, administradora del departamento de salud de Saline.

Algunos funcionarios de salud locales dijeron que el laborioso proceso requerido para calificar para alguna de las ayudas federales también es un problema.

Lisa Harrison, directora de salud pública de Granville Vance Public Health en la zona rural de Carolina del Norte, comentó que resulta duro ver cómo importantes sistemas hospitalarios como la Universidad de Duke reciben decenas de millones de dólares en depósitos directos, mientras que su departamento sólo recibió unos $122,000 a través de tres subvenciones a finales de julio. Su equipo rellenó una solicitud de 25 páginas sólo para conseguir una de ellas.

En Minneapolis, Musicant dijo que el nuevo dinero de CARES permitió al departamento hacer pruebas gratuitas de COVID-19 en una iglesia, a una milla del lugar donde tuvo lugar el asesinato de Floyd.

Hará falta más dinero para hacer todo lo que la comunidad necesita, aseguró Musicant; pero con el Congreso estancado, no está segura de que lo consigan pronto.

Smith es periodista de The Associated Press, y Weber, Recht y Ungar son periodistas de KHN. Los periodistas de AP Camille Fassett y Steve Karnowski colaboraron con este informe.

Esta historia es una colaboración entre The Associated Press y KHN, que es un servicio de noticias sin fines de lucro que cubre temas de salud. Es un programa editorialmente independiente de la Kaiser Family Foundation. KHN no está afiliada a Kaiser Permanente.

Pennsylvania is rolling out its new “Pennie” this fall: a state-run insurance exchange that officials say will save residents collectively millions of dollars on next year’s health plan premiums.

Since the Affordable Care Act’s marketplaces opened for enrollment in fall 2013, Pennsylvania, like most states, has used the federal www.healthcare.gov website for people buying coverage on their own.

But in a move defying the usual political polarization, state lawmakers from both parties last year agreed the cost of using the federal marketplace had grown too high and the state could do it for much less. They set up the Pennsylvania insurance exchange (nicknamed “Pennie”), designed to pass on expected savings to policyholders. Although the final rates for 2021 are not yet set, insurers have requested about a 3% average drop in premiums.

Pennsylvania is one of six states shifting in the next several years from the federal insurance exchange to run their own online marketplaces, which determine eligibility, assist with enrollment and connect buyers with insurance companies. They will join 12 states and the District of Columbia with self-contained exchanges.

The transitions come amid mounting evidence that state marketplaces attract more consumers, especially young adults, and hold down prices better than the federal exchange. They’ve also been gaining appeal since the Trump administration has cut the enrollment period on healthcare.gov and slashed funds for advertising and helping consumers.

State policymakers say they can run their own exchanges more cheaply and efficiently, and can better respond to residents’ and insurers’ needs.

“It comes down to getting more bang for your buck,” said Rachel Schwab, a researcher at Georgetown University’s Center on Health Insurance Reforms in Washington, D.C.

The importance of state-run exchanges was highlighted this year as all but one of them held special enrollment periods to sign up hundreds of thousands of people hurt financially by COVID-caused economic turmoil. The federal exchange, run by the Trump administration, refused to do so, although anyone who has lost workplace insurance is able to buy coverage anytime on either the state or federal exchange.

Like Pennsylvania, New Jersey expects to have its state-run exchange operational for the start of open enrollment on Nov. 1.

In fall 2021, New Mexico plans to launch its own marketplace and Kentucky is scheduled to fully revive its state-run exchange, which was dismantled by its Republican governor in 2015. Maine has also announced it will move to set up its own exchange, possibly in fall 2021.

Virginia’s legislature passed an exchange bill this year and hopes to start it in 2022 or 2023.

Nationwide, about 11 million people get coverage through the state and federal exchanges, with more than 80% receiving federal subsidies to lower their insurance costs.

“Almost across the board, states with their own exchanges have achieved higher enrollment rates than their federal peers, along with lower premiums and better consumer education and protection,” according to a study published this month in the Journal of Health Politics, Policy and Law.

Controlling ‘Their Own Destiny’

Since 2014, states using the federal marketplaces have had a rise in premiums of 87% while state exchanges saw 47% growth, the study found.

In one key metric, from 2016 to 2019 the number of young enrollees in state exchanges rose 11.5%, while states using the federal marketplace recorded an 11.3% drop, a study by the National Academy for State Health Policy found.

Attracting younger enrollees, who tend to be healthy, is vital to helping the marketplaces spread the insurance risk to help keep premiums down, experts say.

When the Affordable Care Act was debated, Republicans and some Democrats in Congress were cautious about a one-size-fits-all approach to insurance and accusations about a federal takeover of health care. So the law’s advocates gave states more control over selling private health coverage. The law’s framers included a provision that allowed states to use millions in federal dollars to launch their own insurance exchanges.

Initially, 49 states took the money. But in 2011, conservative groups convinced Republican-controlled states that forgoing state-run exchanges would help undermine Obamacare.

As a result, most GOP-controlled states defaulted to the federal marketplace.

In the ensuing years, several states that had started their own marketplaces, such as Oregon, Nevada and Hawaii, reverted to the federal exchange because of technological problems. Nevada relaunched its exchange last fall.

“States want to control their own destiny, and the instability of healthcare.gov in the Trump administration has frustrated states,” said Joel Ario, managing director for the consulting firm Manatt Health Solutions and a former Obama administration official, who helped set up the exchanges. States running their own platform can use data to target enrollment efforts, he said.

An Effort to Hold Down Premium Increases

Marlene Caride, New Jersey commissioner of Banking and Insurance, said that “the beauty of [a state-based exchange] is we can tailor it to New Jersey residents and have the ability to help [them] when they are in dire need.”

About 210,000 New Jersey residents enrolled in marketplace health plans for this year.

New Jersey has been spending $50 million a year in user fees for the federal exchange. After startup costs, the state estimates, it will cost about $7.6 million a year to run its own exchange enrollment platform and $7 million a year for a customer service center.

Open enrollment on the New Jersey exchange — called Get Covered NJ — will run from Nov. 1 to Jan. 31.

New Jersey plans to provide additional government subsidies for lower-income enrollees. Those would supplement federal subsidies.

Kentucky officials said insurers there were paying $15 million a year in user fees for healthcare.gov, a cost passed on to policyholders. When the state switches to its own operation, it plans to collect $5 million in its first year to cover the startup costs to revive its Kynect exchange and another $1 million to $2 million in annual administrative costs. So insurers will pay lower fees and those savings will help cut premium costs, said Eric Friedlander, secretary of the Kentucky Cabinet for Health and Family Services.

States using the federal marketplace this year paid either a 2.5% or 3% surcharge to the federal government on premiums collected.

In Pennsylvania, where about 330,000 residents buy coverage through an exchange plan, those fees accounted for $90 million a year. State officials estimate they can run their own exchange for about $40 million and will use the savings for a reinsurance program that pays insurers to help cover the cost of extremely expensive health care needed by some customers. Removing those costs from the insurers’ responsibility allows them to drop premiums by 5% to 10%, the state projects.

“When we talk about bringing something back to state control, that is a real narrative that can appeal to both sides of the aisle,” said Jessica Altman, the state’s insurance commissioner. “There is nothing political about making health insurance more affordable.” (Altman is the daughter of Drew Altman, CEO of KFF. KHN is an editorially independent program of KFF.)

Without the savings from running its own exchange, Pennsylvania would not have been able to come up with the more than $40 million needed for the reinsurance program, state officials said.

In addition, Pennsylvania has extended its enrollment period to run an extra month, until Jan. 15 (federal marketplace enrollment ends Dec. 15). Pennie also plans to spend three to four times the $400,000 that the federal government allocated to the state for navigators to help with enrollment, said Zachary Sherman, who heads Pennie.

“We think increased outreach and marketing will bring in a healthier population and broaden enrollment,” he said.

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.

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Thousands of letters stuffed with money flooded Jonas Salk’s mailbox the week after his polio vaccine was declared safe and effective in 1955. Everybody wanted his vaccine. Desperate parents clogged doctors’ phone lines in search of the precious elixir; drug companies and doctors diverted doses to the rich and famous.

Some of the first batches of the vaccine were disastrously botched, causing 200 cases of permanent paralysis. That barely dented public desire for the preventive. Marlon Brando even asked to play Salk in a movie.

Eight years later, with polio a fading threat, the first measles vaccines went on sale. Measles had killed more than 400 children the year before and caused permanent brain damage in thousands more. Interest in the vaccine was modest. Its creator, Maurice Hilleman, was never lionized as Salk had been.

“People felt, ‘What’s the big deal? I had measles; why does my kid need a vaccine?’ It was a very difficult sell,” said Walter Orenstein, an Emory University professor who headed the national immunization program at the Centers for Disease Control and Prevention from 1988 to 2004.

When a coronavirus vaccine becomes available, will it be met with a roaring ovation, like the polio vaccine, or communal yawning, like the measles shot? Or some strange hybrid of the two? Americans’ trust in authority, affordable access to the vaccine and a sense of solidarity will determine the result, said Orenstein and other public health veterans and historians.

Perceptions of particular diseases — and vaccines — reflect the seriousness of the diseases themselves, but popular values, culture, human risk assessment and politics all play important roles. Acceptance of public health measures — be they face masks or vaccines — is never entirely determined through a rational balancing of risk and benefit.

We can see that in the history of national campaigns for new vaccines meant to vanquish a scourge. No disease was more feared in the mid-20th century than polio. With the possible exception of AIDS, no disease since has been as feared until the arrival of COVID-19.

The polio vaccine was one of the few the public greeted eagerly. Diseases like measles and whooping cough were familiar childhood afflictions. In most years they killed more children than polio, but polio, which put people in iron lungs and leg braces, was visible in ways that an infant’s death certificate, tucked away in a drawer, could never be.

Vaccines are often a hard sell, since they prevent rather than cure disease and seem scary even though they are generally quite safe. Since vaccines must be widely used to prevent outbreaks, successful vaccination campaigns rely heavily on trust in those who sell, recommend and administer the medicines. And trust in science, government and business has not always been in steady supply.

In the late 1800s and early 1900s, when public health laws were in flux, authorities battling smallpox epidemics would often send vaccinators out with police to enforce the jab. They’d enter factories where cases had been reported, lock the doors and frog-march the workers through a vaccination line. The workers’ resistance was not unmerited; the vaccine sometimes caused swollen arms, fever and bacterial infections. Vaccination could cost a week’s missed wages.

Authorities had learned their lesson by the 1920s, when the diphtheria vaccine came on the scene, as James Colgrove notes in his book “State of Immunity: The Politics of Vaccination in Twentieth-Century America.” Diphtheria was a much-feared killer of children, and publicity campaigns run by public health officials, insurance companies and charities sought to educate and persuade rather than coerce.

Polio terrified Americans, peaking in 1952 with more than 57,000 cases. In 1938, President Franklin D. Roosevelt, himself a polio patient, had begun a national scientific program to battle the disease, backed by millions of Americans’ contributions through the March of Dimes.

The result of this national quest, uniting government and the people, was Jonas Salk’s inactivated polio vaccine. It cemented a powerful post-World War II trust in the U.S. scientific and medical establishment that would endure for many years.

Social solidarity was also important.

Vaccines prevent the circulation of a disease among the unvaccinated via what scientists call herd immunity — if enough people are vaccinated. When a reliable rubella vaccine became available in 1969, states quickly required childhood vaccination, even though rubella was practically harmless in children. They wanted to protect a vulnerable population — pregnant women — to prevent a repeat of the 1963-64 congenital rubella epidemic, which resulted in 30,000 fetal deaths and the birth of more than 20,000 babies with severe disabilities.

The embrace of the rubella vaccine, as historian Elena Conis of the University of California-Berkeley notes in her book, “Vaccine Nation: America’s Changing Relationship With Immunization,” marked the first time a vaccine had been deployed that offered no direct benefit to those who were vaccinated.

Still, it took a combination of fear, solidarity — and coercion — for Orenstein and his colleagues at the CDC and state public health agencies to drive childhood vaccination rates for measles, whooping cough, rubella and diphtheria to 90% and above in the 1990s to assure herd immunity.

Shame was also a tool. Orenstein remembered testifying to the Florida Legislature when it was considering a tougher vaccine mandate. He showed them that disease rates were lower in neighboring states that had tighter mandates. It worked.

What’s different now? In a politically divided nation, trust in science is low and experts are distrusted, politicians more so. Childhood vaccination efforts are already beset by large numbers of hesitant parents. And efforts to fight the COVID epidemic in the United States have been clumsy and chaotic at best, leaving Americans to doubt the competence of their governments and institutions.

There is still fear. “Maybe I’m an old-fashioned fool, but I think that most people will welcome a vaccine, if the rollout is done right,” said David Oshinsky, a professor of history at New York University and author of “Polio: An American Story,” a Pulitzer Prize-winning history. “Most people are desperately afraid of COVID. A minority thumb their noses, many of them for political reasons. How will this change when there’s a vaccine that [hopefully] changes the health risk equation to some degree?”

Recent surveys show as few as half of Americans are determined to be vaccinated against COVID-19. Those numbers could change depending on a number of hard-to-predict factors, said Conis of Berkeley.

“A lot of people will be really eager to get it,” she said. “A lot will be hesitant, not only because of misinformation but because of a lack of trust in the current administration.”

When a coronavirus vaccine is introduced, it may be sold as personal protection, even for young, healthy people. But those who suffer most from the virus are usually older or sicker. An effective vaccination campaign may try to instill a sense of solidarity, or altruism, as well as a more general sense that without vaccination, the economy can’t get back on its feet.

“I’m not clear if people accept that solidarity,” Orenstein said. “People look more for what’s good for themselves than what’s good for society.” That said, the risk of COVID-19 to young people is “not zero. That’s one of the major ways to sell this, in a sense.”

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.

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MEDFORD, Ore. — From the outside, it appears to be just another suburban allergy clinic, a tidy, tan brick-and-cinder-block building set back from a busy highway and across the road from an auto parts store.

But inside the offices of the Clinical Research Institute of Southern Oregon, Dr. Edward Kerwin and his staff are part of the race to save the world.

Kerwin, 63, was tapped this spring to lead one of the nearly 90 U.S. clinical trial sites taking part in the large-scale, phase 3 test of a vaccine produced by biotech startup Moderna to fight the virus that causes COVID-19.

Starting in late July, Kerwin’s clinic, set in a working-class region roughly halfway between Seattle and San Francisco, began enrolling up to 40 participants a day for the two-year study. He hopes to recruit as many as 700 volunteers by the end of August.

They’ll join the 30,000 test subjects needed nationwide to determine whether the Moderna vaccine can tame a disease that has infected 5.4 million Americans and claimed the lives of more than 170,000. Another vaccine, produced by Pfizer and BioNTech, a German company, is being tested in nearly 30,000 more recruits.

“It’s a perfect opportunity for science to come to the rescue,” said Kerwin, a lanky figure in a bright-blue shirt and khaki pants. He led visitors to a conference room, took a chair well outside social-distancing range and doffed his mask, the better to explain the magnitude of this moment.

He acknowledged “it may seem like a surprise” that Medford is the site of a clinical trial to halt the world’s biggest medical challenge in a century. But Kerwin, who worked as a NASA scientist before heading to medical school and a career in allergy, asthma and immunology, has led more than 750 clinical trials over the past quarter-century, mostly focused on asthma, lung disease and skin disorders.

He moved to southern Oregon in 1993, choosing the rural Rogue Valley because of its beauty and cultural opportunities, such as the Oregon Shakespeare Festival in Ashland. As his medical expertise grew, he built a top-enrolling clinical trial site that coexists with a clinic that treats asthma and allergy patients. Along the way, he established deep roots in the valley, where he founded Bel Fiore, a $10 million winery and vineyard that features a 19,000-square-foot chateau.

Even with his experience, however, testing a vaccine to halt a global pandemic is a challenge like no other, Kerwin said. When the call came from Velocity Clinical Research — the North Carolina-based company that operates Kerwin’s clinic, known as CRISOR, and more than a dozen other COVID trial sites across the U.S. — he paused for a moment.

“You take a big gasp and say, ‘Do we have the resources to do this?’” Kerwin said. “You definitely do it, but you want to do your homework.”

So far, the testing is going well, he said. Unlike most clinical trials, for which it’s difficult to recruit enough volunteers, the COVID effort has attracted intense interest. All of Velocity’s sites are paying participants $1,962 for the two-year trial, but Kerwin’s staff of two dozen didn’t advertise widely at first.

“We would worry our phone would ring off the hook,” Kerwin said.

The Medford clinic is the only COVID vaccine clinical trial site in Oregon, so participants have come from as far as Portland, nearly 300 miles north.

It’s a prime example of the gamble drugmakers and federal trial sponsors take when deciding where to host large-scale COVID clinical trials. To gauge whether the vaccine works, you need to know there’s a good chance participants will be exposed to the virus in the environment. Ethically, in traditional phase 3 trials, you can’t deliberately infect people with COVID, a disease with no treatment or cure, though some propose doing just that in controversial human challenge trials.

Southern Oregon has not been a hot spot for COVID, with fewer than 500 confirmed cases and two deaths in Jackson County, which includes Medford. But, Kerwin said, it’s at risk of becoming one, offering the opportunity to vaccinate trial participants before the virus becomes widespread.

“It’s almost too late in New York and Arizona,” he said.

In the meantime, he’s trying to shift the odds that trial volunteers will be exposed to COVID-19 by reaching out to people at greater risk of infection.

So Kerwin’s team has contacted businesses in industries such as agriculture and food production, where the disease has been known to spread with particular virulence. Locally, that includes employers such as Harry & David, the food retailer famous for its fruit-of-the-month shipments, and Amy’s Kitchen, the maker of vegetarian frozen meals, which operates a production plant in the area.

The Medford trial site is also emphasizing enrollment of elder volunteers, those age 65 and up, who are at higher risk of serious illness or death from the coronavirus.

One of the first volunteers was Trish Malone, a 68-year-old cultural anthropologist who lives in Ashland. Like many of the other participants, she has enlisted in Kerwin’s previous clinical trials of devices to treat asthma. When clinic staffers reached out to ask whether she’d participate in the COVID trial, she didn’t hesitate.

“I said, ‘Wow, yes,’” Malone recalled. “It’s because of [Kerwin] and his expertise. Little Medford gets to have this testing.”

Participating is a way to “give back” to her community, said Malone, who sat, calm and still, on a recent Thursday as study coordinator Audrey Kuehl sank the injection into Malone’s left shoulder.

“She was fast. It was no pain, and it was fine,” Malone said.

Half of the patients in the trial will receive two doses, 28 days apart, of the Moderna vaccine, called mRNA-1273. It uses a snippet of the genetic code of the coronavirus, not the virus itself, to instruct cells to produce a protein that triggers an immune response to protect against infection. The other half will receive a placebo, or saline dummy shot.

Three study coordinators at the Medford clinic, Kuehl among them, know which patients receive which dose, but the information is kept from volunteers and other staff members — including Kerwin, the principal investigator.

Participants who receive the vaccine may experience some side effects, such as redness at the injection site, muscle soreness, fatigue or headache, Kerwin said. “It’s a sign the vaccine is working with your immune system,” he said.

Four days after her first injection, Malone was disappointed to report no reaction at all. “I am bummed, totally bummed,” she said. “I have no symptoms. I think I got the placebo.”

That may not be true, of course. Even if it is, Malone said, she’s happy to participate in an effort that may help stop the deadly virus.

“This a global pandemic,” she said. “What can I do to help?”

The study will run for two years so that investigators can track the longer-term effects of the vaccine. Malone will keep a diary of her temperature and symptoms, if any, and have regular blood tests to determine whether she has antibodies to the virus.

Kerwin is optimistic about the chances the Moderna vaccine will work, agreeing with Dr. Anthony Fauci, the nation’s top infectious disease expert, who predicted the study could demonstrate efficacy by November or December. Kerwin estimates that the vaccine could prove 90% effective, though outside infectious disease experts said it’s far too soon to tell.

Even if the trial shows the vaccine is successful, it would take months longer to produce and deliver enough injections for the U.S. and beyond.

As he enrolls patients and awaits data, Kerwin said, he’s mindful of the real-world implications of his work. His mother, in her 90s, lives in a Denver nursing home where, so far, there have been no cases of COVID-19. But the threat looms.

The tragedy of the pandemic has underscored the promise of science — and the interconnectedness of people far beyond this small corner of Oregon.

“Immunology has never been more fascinating than it is today,” he said. “This is a year that reminds us we cannot live in isolation and do not live in isolation from the world.”

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.

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Shortages of personal protective equipment and medical supplies could persist for years without strategic government intervention, officials from health care and manufacturing industries have predicted.

Officials said logistical challenges continue seven months after the coronavirus reached the United States, as the flu season approaches and as some state emergency management agencies prepare for a fall surge in COVID-19 cases.

Although the disarray is not as widespread as it was this spring, hospitals said rolling shortages of supplies range from specialized beds to disposable isolation gowns to thermometers.

“A few weeks ago, we were having a very difficult time getting the sanitary wipes. You just couldn’t get them,” said Dr. Bernard Klein, chief executive of Providence Holy Cross Medical Center in Mission Hills, California, near Los Angeles. “We actually had to manufacture our own.”

This same dynamic has played out across a number of critical supplies in his hospital. First masks, then isolation gowns and now a specialized bed that allows nurses to turn COVID-19 patients onto their bellies — equipment that helps workers with what can otherwise be a six-person job.

“We’ve seen whole families come to our hospital with COVID, and several members hospitalized at the same time,” said Klein. “It’s very, very sad.”

Testing supplies ran short as the predominantly Latino community served by Providence Holy Cross was hit hard by COVID, and even as nearby hospitals could process 15-minute tests.

“If we had a more coordinated response with a partnership between the medical field, the government and the private industry, it would help improve the supply chain to the areas that need it most,” Klein said.

Klein said he expected to deal with equipment and supply shortages throughout 2021, especially as flu season approaches.

“Most people focus on those N95 respirators,” said Carmela Coyle, CEO of the California Hospital Association, an industry group that represents more than 400 hospitals across one of America’s hardest-hit states.

She said she believed COVID-19-related supply challenges will persist through 2022.

“We have been challenged with shortages of isolation gowns, face shields, which you’re now starting to see in public places. Any one piece that’s in shortage or not available creates risk for patients and for health care workers,” said Coyle.

At the same time, trade associations representing manufacturers said persuading customers to shift to American suppliers had been difficult.

“I also have industry that’s working only at 10-20% capacity, who can make PPE in our own backyard, but have no orders,” said Kim Glas, CEO of the National Council of Textile Organizations, whose members make reusable cloth gowns.

Manufacturers in her organization have made “hundreds of millions of products,” but, without long-term government contracts, many are apprehensive to invest in the equipment needed to scale up the business and eventually lower prices.

“If there continues to be an upward trajectory of COVID-19 cases, not just in the U.S. but globally, you can see those supply chains breaking down again,” Glas said. “It is a health care security issue.”

For the past two decades, personal protective equipment was supplied to health care institutions in lean supply chains in the same way toilet paper was to grocery stores. Chains between major manufacturers and end users were so efficient, there was no need to stockpile goods.

But in March, the supply chain broke when major Asian PPE exporters embargoed materials or shut down just as demand increased exponentially. Thus, health care institutions were in much the same position as regular grocery shoppers, who were trying to buy great quantities of a product they never needed to stockpile before.

“I am very concerned about long-term PPE shortages for the foreseeable future,” said Dr. Susan Bailey, president of the American Medical Association.

“There’s no question the situation is better than it was a couple of months ago,” said Bailey. However, many health care organizations, including her own, have struggled to obtain PPE. Bailey practices at a 10-doctor allergy clinic and was met with a 10,000-mask minimum when they tried to order N95 respirators.

“We have not seen evidence of a long-term strategic plan for the manufacture, acquisition and distribution of PPE” from the government, said Bailey. “The supply chain needs to be strengthened dramatically, and we need less dependence on foreign goods to manufacture our own PPE in the U.S.”

Some products have now come back to be made in the U.S. — although factories are not expected to be able to reach demand until mid-2021.

“A lot has been done in the last six months,” said Rousse. “We are largely out of the hole, and we have planted the seeds to render the United States self-sufficient,” said Dave Rousse, president of the Association of the Nonwoven Fabrics Industry.

In 2019, 850 tons of the material used in disposable masks was made in the U.S. Around 10,000 tons is expected to be made in 2021, satisfying perhaps 80% of demand. But PPE is a suite of items — including gloves, gowns and face shields — not all of which have seen the same success.

“Thermometers are becoming a real issue,” said Cindy Juhas, chief strategy officer of CME, an American health care product distributor. “They’re expecting even a problem with needles and syringes for the amount of vaccines they have to make,” she said.

Federal government efforts to address the supply chain have foundered. The Federal Emergency Management Agency, in charge of the COVID-19 response, told congressional interviewers in June it had “no involvement” in distributing PPE to hot spots.

Project Airbridge, an initiative headed by Jared Kushner, President Donald Trump’s son-in-law, flew PPE from international suppliers to the U.S. at taxpayer expense but was phased out. And the government has not responded to the AMA’s calls for more distribution data.

Arguably, Klein is among the best placed to weather such disruptions. He is part of a 51-hospital chain with purchasing power, and among the institutions that distributors prioritize when selling supplies. But tribulations continue even in hospitals, as shortages have pushed buyers to look directly for manufacturers, often through a swamp of companies that have sprung up overnight.

Now distributors are being called upon not just by their traditional customers — hospitals and long-term care homes — but by nearly every segment of society. First responders, schools, clinics and even food businesses are all buying medical equipment now.

“There’s going to be lots of other shortages we haven’t even thought about,” said Juhas.

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.

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GARDENA, Calif. — Daisy Conant, 91, thrives off routine.

One of her favorites is reading the newspaper with her morning coffee. But, lately, the news surrounding the coronavirus pandemic has been more agitating than pleasurable. “We’re dropping like flies,” she said one recent morning, throwing her hands up.

“She gets fearful,” explained her grandson Erik Hayhurst, 27. “I sort of have to pull her back and walk her through the facts.”

Conant hasn’t been diagnosed with dementia, but her family has a history of Alzheimer’s. She had been living independently in her home of 60 years, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and fell repeatedly.

For a while, Conant remained active, meeting up with friends and neighbors to walk around her neighborhood, attend church and visit the corner market. Hayhurst, a project management consultant, juggled caregiving with his job.

Then COVID-19 came, wrecking Conant’s routine and isolating her from friends and loved ones. Hayhurst has had to remake his life, too. He suddenly became his grandmother’s only caregiver — other family members can visit only from the lawn.

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After their walk, Daisy Conant and her grandson rest in front of their home in Gardena, California.

The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.

These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.

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“The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support,” said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.

Nearly 6 million Americans age 65 and older have Alzheimer’s disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer’s Association 2020 Facts and Figures journal.

People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren’t visiting or, when they do, don’t come into the house, she added.

“Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion,” Markwood said.

Daisy Conant and grandson Erik Hayhurst chat with a family friend on a Zoom call. Hayhurst is using Zoom to keep his grandmother connected to family and friends.

The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer’s or other dementias in the United States.

The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater “heaviness” to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter.

“So many [callers] are seeking advice on how to address gaps in care,” said Beth Kallmyer, the association’s vice president of care and support. “Others are simply feeling overwhelmed and just need someone to reassure them.”

Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.

They include pen pal services and letter-writing campaigns, robotic pets and weekly online choir rehearsals.

Gina Moran helps her mother, who was diagnosed with Alzheimer’s in 2007, put on her mask. Gina Moran sometimes has trouble getting her mother to wear the mask.
Alba Moran must be reminded about the coronavirus pandemic when she is asked to wear her mask.

Hayhurst has experienced some rocky moments during the pandemic.

For instance, he said, it was hard for Conant to understand why she needed to wear a mask. Eventually, he made it part of the routine when they leave the house on daily walks, and Conant has even learned to put on her mask without prompting.

“At first it was a challenge,” Hayhurst said. “She knows it’s part of the ritual now.”

People with dementia can become agitated when being taught new things, said Dr. Lon Schneider, director of the Alzheimer’s Disease Research Center at the University of Southern California. To reduce distress, he said, caregivers should enforce mask-wearing only when necessary.

That was a lesson Gina Moran of Fountain Valley, California, learned early on. Moran, 43, cares for her 85-year-old mother, Alba Moran, who was diagnosed with Alzheimer’s in 2007.

“I try to use the same words every time,” Moran said. “I tell her there’s a virus going around that’s killing a lot of people, especially the elderly. And she’ll respond, ‘Oh, I’m at that age.’”

If Moran forgets to explain the need for a mask or social distancing, her mother gets combative. She raises her voice and refuses to listen to Moran, much like a child throwing a tantrum, Moran said. “I can’t go into more information than that because she won’t understand,” she said. “I try to keep it simple.”

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The pandemic is also exacerbating feelings of isolation and loneliness, and not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “Caregivers are lonely, too.”

When stay-at-home orders first came down in March, Hayhurst’s grandmother repeatedly said she felt lonesome, he recalled. “The lack of interaction has made her feel far more isolated,” he said.

To keep her connected with family and friends, he regularly sets up Zoom calls.

But Conant struggles with the concept of seeing familiar faces through the computer screen. During a Zoom call on her birthday last month, Conant tried to cut pieces of cake for her guests.

Moran also feels isolated, in part because she’s getting less help from family. In addition to caring for her mom, Moran studies sociology online and is in the process of adopting 1-year-old Viviana.

Right now, to minimize her mother’s exposure to the virus, Moran’s sister is the only person who visits a couple of times a week.

“She stays with my mom and baby so I can get some sleep,” Moran said.

Before COVID, she used to get out more on her own. Losing that bit of free time makes her feel lonely and sad, she admitted.

“I would get my nails done, run errands by myself and go out on lunch dates with friends,” Moran said. “But not anymore.”

Gina Moran juggles several roles. She is the full-time caregiver to both her mother and baby, and studies sociology online.

Health workers across the country looked on in horror when New York became the global epicenter of the coronavirus. Now, as physicians in cities such as Houston, Phoenix and Miami face their own COVID-19 crises, they are looking to New York, where the caseload has since abated, for guidance.

The Guardian sat in on a conversation with two emergency room physicians — one in New York and the other in Houston — about what happened when COVID-19 arrived at their hospitals.

Dr. Cedric Dark, Houston: When did you start worrying about how COVID-19 would impact New York?

Dr. Tsion Firew, New York: Back in February, I traveled to Sweden and Ethiopia for work. There was some sort of screening for COVID-19 in both places. On Feb. 22, I came to New York City, and nothing — no screening. At that point, I thought, “I don’t think this country’s going to handle this well.”

Dark: On Feb. 26, at a department meeting, one of my colleagues put coronavirus on the agenda. I thought to myself, “Why do we even need to bother with this here in Houston? This is in China; maybe it’s in Europe?”

Firew: On March 1, we had our first case in New York City, which was at my hospital. Fast-forward 15 days and I get a call saying, “Hey, you were exposed to COVID-positive patients.” I was told to stay home.

Dark: My anxiety grew as I saw what was happening in Italy, a country I’ve visited several times. I remember seeing images of people dying in their homes and mass graves. I started to wonder, “Is this what we’ll see over here? Are my colleagues going to be dying? Is this something that’s going to get me or my wife, who’s also an ER doctor? Are we going to bring it home to our son?”

In March, we repurposed our urgent care pod, which has eight beds, into our coronavirus unit. And for a while, that was enough.

Firew: In late March, health workers without symptoms were told to come back to work. It felt like a tsunami hit. I’ve practiced in very low-resource settings and even in a war zone, and I couldn’t believe what I was witnessing in New York.

The emergency department was silent — there were no visitors, and patients were very sick. Many were on ventilators or getting oxygen. The usual human interactions were gone. Everybody was wearing a mask and gowns and there were so many people who came to help from different places that you didn’t know who was who. I spent a lot more time on the phone talking to family members about end-of-life care decisions, conversations you’d normally have face-to-face.

In New York, the severity of the crisis really depended on what hospital you were at. Columbia has two hospitals — one at 168th and one at 224th — and the difference was night and day. The one on 224th is smaller and just across the bridge from the Bronx, which was hit hard by the virus.

There, people were dying in ambulances while waiting for care. The emergency department was overwhelmed with patients who needed oxygen. Its hallways were crowded with patients on portable oxygen tanks. We ran out of monitors and oxygen for the portable tanks. Staff members succumbed to COVID-19, exacerbating shortages of nurses and doctors.

My friends who work in Lower Manhattan couldn’t believe some of the things we saw.

Dark: I went to medical school at NYU and have a lot of friends in New York I was checking in with at the time. I thought that in Houston, a city that’s almost as big, we had the conditions for a similar crisis: It’s a large city with an international airport, it attracts a lot of business travelers, and thousands of people come here each March for the rodeo.

In late March, a guy about my age came into the hospital. It was the first day we got coronavirus tests. A few days later, a nurse texted me that the patient had tested positive. He hadn’t traveled anywhere — it was proof to me that we had community transmission in Houston before any officials admitted it.

You became infected, right?

Firew: In early April, I became sick, along with my husband. I never imagined that in 2020 I would be writing out a living will detailing my life insurance policy to my family. Walking from my bed to the kitchen would make my heart race; I often wondered: Is this when I drop dead like my patient the other day?

A few days before I got sick, the president had said that anybody who wanted a test could get one. But then I was on the phone with my workplace and with the department of health begging for a test.

It was also around that time that a brown-skinned physician who was about my age died from COVID-19. So I knew being in my mid-30s wouldn’t protect me. I was even more worried when my husband became ill because, as a Black man, his chances of dying from this disease were much higher than mine. We both recovered, but I still have some fatigue and shortness of breath.

When did cases pick up in Houston?

Dark: We saw a gradual increase in cases throughout April, but it stayed relatively calm because the city was shut down. The hospital was kind of a ghost town because no one was having elective procedures. Things were quiet until Texas reopened in May.

I remember when I lost my first COVID patient. He started to crash right in front of me. We started CPR and I ran the algorithms through my mind trying to think how we could bring him back, but kept ending up at the same conclusion: This is COVID and there’s nothing I can do.

It’s like serving on the front lines of a war. We initially struggled to find our own personal protective equipment while the hospitals worked to secure the supply chain. Although that situation has stabilized, a lot of patients who come in for non-COVID reasons wind up testing positive. COVID is everywhere.

Our patient population is heavily Latino and Black and, for a time, our hospital had some of the highest numbers of COVID cases among the nearly two dozen hospitals in the Texas Medical Center network. It’s revealed the fault lines of a preexisting issue in terms of inequities in health care.

As area hospitals fill up, they reallocate additional floors to COVID patients. Who knows, if we don’t get this under control, maybe one day the whole hospital will be COVID.

Firew: Now I’m just chronically angry. The negligence came from the top all the way down. Our leaders do not lead with evidence — we knew what was going to happen when states reopened so quickly.

Dark: Yeah, this was completely avoidable, had the governor [Texas Gov. Greg Abbott] decided not to open up the economy too fast.

How are things in New York now?

Firew: There have been several days where I’ve seen zero COVID cases. If I do see a case, it’s usually someone who has traveled from abroad or other states.

People are coming in for non-COVID reasons. Recently, a woman in her early 40s came in with a massive lesion on her breast. She’d started experiencing some pain three months ago, during the peak of the pandemic, and was too frightened to come to the hospital. To make matters worse, she didn’t have insurance and couldn’t afford the telehealth that many had access to.

By the time she made it to our hospital, the mass had metastasized to her spine and lungs. Even with aggressive treatment, she likely only has a few months to live. This is one of the many cases we’re seeing now that we are back to “normal” — complications of chronic illnesses and delayed diagnoses of cancer. The burden of the pandemic layered with a broken health care system.

Dr. Tsion Firew is an assistant professor of emergency medicine at Columbia University and special adviser to the minister of health of Ethiopia.

Dr. Cedric Dark is an assistant professor of emergency medicine at Baylor College of Medicine and a board member for Doctors for America.

This conversation was condensed and edited by Danielle Renwick.

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.

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After terrorists slammed a plane into the Pentagon on 9/11, ambulances rushed scores of the injured to community hospitals, but only three of the patients were taken to specialized trauma wards. The reason: The hospitals and ambulances had no real-time information-sharing system.

Nineteen years later, there is still no national data network that enables the health system to respond effectively to disasters and disease outbreaks. Many doctors and nurses must fill out paper forms on COVID-19 cases and available beds and fax them to public health agencies, causing critical delays in care and hampering the effort to track and block the spread of the coronavirus.

“We need to be thinking long and hard about making improvements in the data-reporting system so the response to the next epidemic is a little less painful,” said Dr. Dan Hanfling, a vice president at In-Q-Tel, a nonprofit that helps the federal government solve technology problems in health care and other areas. “And there will be another one.”

There are signs the COVID-19 pandemic has created momentum to modernize the nation’s creaky, fragmented public health data system, in which nearly 3,000 local, state and federal health departments set their own reporting rules and vary greatly in their ability to send and receive data electronically.

Sutter Health and UC Davis Health, along with nearly 30 other provider organizations around the country, recently launched a collaborative effort to speed and improve the sharing of clinical data on individual COVID cases with public health departments.

But even that platform, which contains information about patients’ diagnoses and response to treatments, doesn’t yet include data on the availability of hospital beds, intensive care units or supplies needed for a seamless pandemic response.

The federal government spent nearly $40 billion over the past decade to equip hospitals and physicians’ offices with electronic health record systems for improving treatment of individual patients. But no comparable effort has emerged to build an effective system for quickly moving information on infectious disease from providers to public health agencies.

In March, Congress approved $500 million over 10 years to modernize the public health data infrastructure. But the amount falls far short of what’s needed to update data systems and train staff at local and state health departments, said Brian Dixon, director of public health informatics at the Regenstrief Institute in Indianapolis.

The congressional allocation is half the annual amount proposed under last year’s bipartisan Saving Lives Through Better Data Act, which did not pass, and much less than the $4.5 billion Public Health Infrastructure Fund proposed last year by public health leaders.

“The data are moving slower than the disease,” said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists. “We need a way to get that information electronically and seamlessly to public health agencies so we can do investigations, quarantine people and identify hot spots and risk groups in real time, not two weeks later.”

The impact of these data failures is felt around the country. The director of the California Department of Public Health, Dr. Sonia Angell, was forced out Aug. 9 after a malfunction in the state’s data system left out up to 300,000 COVID-19 test results, undercutting the accuracy of its case count.

Other advanced countries have done a better job of rapidly and accurately tracking COVID-19 cases and medical resources while doing contact tracing and quarantining those who test positive. In France, physicians’ offices report patient symptoms to a central agency every day. That’s an advantage of having a national health care system.

“If someone in France sneezes, they learn about it in Paris,” said Dr. Chris Lehmann, clinical informatics director at UT Southwestern Medical Center in Dallas.

Coronavirus cases reported to U.S. public health departments are often missing patients’ addresses and phone numbers, which are needed to trace their contacts, Hamilton said. Lab test results often lack information on patients’ races or ethnicities, which could help authorities understand demographic disparities in transmission and response to the virus.

Last month, the Trump administration abruptly ordered hospitals to report all COVID-19 data to a private vendor hired by the Department of Health and Human Services rather than to the long-established reporting system run by the Centers for Disease Control and Prevention. The administration said the switch would help the White House coronavirus task force better allocate scarce supplies.

The shift disrupted, at least temporarily, the flow of critical information needed to track COVID-19 outbreaks and allocate resources, public health officials said. They worried the move looked political in nature and could dampen public confidence in the accuracy of the data.

An HHS spokesperson said the transition had improved and sped up hospital reporting. Experts had various opinions on the matter but agreed that the new system doesn’t fix problems with the old CDC system that contributed to this country’s slow and ineffective response to COVID-19.

“While I think it’s an exceptionally bad idea to take the CDC out of it, the bottom line is the way CDC presented the data wasn’t all that useful,” said Dr. George Rutherford, a professor of epidemiology at the University of California-San Francisco.

The new HHS system lacks data from nursing homes, which is needed to ensure safe care for COVID patients after discharge from the hospital, said Dr. Lissy Hu, CEO of CarePort Health, which coordinates care between hospitals and post-acute facilities.

Some observers hope the pandemic will persuade the health care industry to push faster toward its goal of smoother data exchange through computer systems that can easily talk to one another — an objective that has met with only partial success after more than a decade of effort.

The case reporting system launched by Sutter Health and its partners sends clinical information from each coronavirus patient’s electronic health record to public health agencies in all 50 states. The Digital Bridge platform also allows the agencies for the first time to send helpful treatment information back to doctors and nurses. About 20 other health systems are preparing to join the 30 partners in the system, and major digital health record vendors like Epic and Allscripts have added the reporting capacity to their software.

Sutter hopes to get state and county officials to let the health system stop sending data manually, which would save its clinicians time they need for treating patients, said Dr. Steven Lane, Sutter’s clinical informatics director for interoperability.

The platform could be key in implementing COVID-19 vaccination around the country, said Dr. Andrew Wiesenthal, a managing director at Deloitte Consulting who spearheaded the development of Digital Bridge.

“You’d want a registry of everyone immunized, you’d want to hear if that person developed COVID anyway, then you’d want to know about subsequent symptoms,” he said. “You can only do that well if you have an effective data system for surveillance and reporting.”

The key is to get all the health care players — providers, insurers, EHR vendors and public health agencies — to collaborate and share data, rather than hoarding it for their own financial or organizational benefit, Wiesenthal said.

“One would hope we will use this crisis as an opportunity to fix a long-standing problem,” said John Auerbach, CEO of Trust for America’s Health. “But I worry this will follow the historical pattern of throwing a lot of money at a problem during a crisis, then cutting back after. There’s a tendency to think short term.”

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.

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This story can be republished for free (details).