Author: bkellaway

Knowing it may be met with some skepticism, the Trump administration Thursday announced a sweeping plan that officials say will transform health care in rural America.

Even before the coronavirus pandemic reached into the nation’s less-populated regions, rural Americans were sicker, poorer and older than the rest of the country. Hospitals are shuttering at record rates, and health care experts have long called for changes.

The new plan, released by Health and Human Services Secretary Alex Azar, acknowledges the gaps in health care and other problems facing rural America. It lists a litany of projects and directives, with many already underway or announced within federal agencies.

“We cannot just tinker around the edges of a rural healthcare system that has struggled for too long,” Azar said in a prepared statement.

Yet, that is exactly what experts say the administration continues to do.

“They tinker around the edges,” said Tommy Barnhart, former president of the National Rural Health Association. And, he added, “there’s a lot of political hype” that has happened under President Donald Trump, as well as previous presidents.

In the past few months, rural health care has increasingly become a focus for Trump, whose polling numbers are souring as COVID-19 kills hundreds of Americans every day, drives down restaurant demand for some farm products and spreads through meatpacking plants. Rural states including Iowa and the Dakotas are reporting the latest surges in cases.

This announcement comes in response to Trump’s executive order last month calling for improved rural health and telehealth access. Earlier this week, three federal agencies also announced they would team up to address gaps in rural broadband service — a key need as large portions of the plan seek to expand telehealth.

The plan is more than 70 pages long and the word “telehealth” appears more than 90 times, with a focus on projects across HHS, including the Health Resources and Services Administration and the Centers for Medicare & Medicaid Services.

Barnhart said CMS has passed some public health emergency waivers since the beginning of the pandemic that helped rural facilities get more funding, including one that specifically was designed to provide additional money for telehealth services. However, those waivers are set to expire when the coronavirus emergency ends. Officials have not yet set a date for when the federal emergency will end.

Andrew Jay Schwartzman, senior counselor to the Benton Institute for Broadband & Society, a private foundation that works to ensure greater internet access, said there are multiple challenges with implementing telehealth across the nation. Many initiatives for robust telehealth programs need fast bandwidth, yet getting the money and setting up the necessary infrastructure is very difficult, he said.

“It will be a long time before this kind of technology will be readily available to much of the country,” he said.

Ge Bai, associate professor of accounting and health policy at Johns Hopkins University in Baltimore, noted that telehealth was short on funding in the HHS initiative. However, she said, the focus on telehealth, as well as a proposed shift in payment for small rural hospitals and changing workforce licensing requirements, had good potential.

“We are so close to the election that this is probably more of a messaging issue to cater to rural residents,” Bai said. “But it doesn’t matter who will be president. This report will give the next administration useful guidance.”

The American Hospital Association, representing 5,000 hospitals nationwide, sent a letter to Trump last week recommending a host of steps the administration could take. As of late Thursday, AHA was still reviewing the HHS plan but said it was “encouraged by the increased attention on rural health care.”

Buried within the HHS announcement are technical initiatives, such as a contract to help clinics and hospitals integrate care, and detailed efforts to address gaps in care, including a proposal to increase funding for school-based mental health programs in the president’s 2021 budget.

A senior HHS official said that while some actions have been taken in recent months to improve rural health — such as the $11 billion provided to rural hospitals through coronavirus relief funding — more is needed.

“We’re putting our stake in the ground that the time for talk is over,” he said. “We’re going to move forward.”

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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SACRAMENTO — California lawmakers convened this year with big plans to tackle soaring health care costs, expand health insurance coverage and improve treatment for mental health and addiction.

But the pandemic abruptly reoriented their priorities, forcing them to grasp for legislative solutions to the virus ripping through the state.

Legislative deliberations this year were defined by quarantined lawmakers, emergency recesses and chaotic video voting — plus a late-night partisan dust-up that led to the death of dozens of bills by the time lawmakers gaveled out early Tuesday morning. Nonetheless, legislators managed to send Gov. Gavin Newsom nearly 430 bills, roughly 40% of the number they’d send in a typical year, according to Sacramento lobbyist Chris Micheli.

Among them were about two dozen COVID-related bills that addressed a range of challenges, including dire shortages of protective gear, sick leave for workers and the administration of a hoped-for COVID-19 vaccine. The measures broadly fit into three categories: dealing with the current crisis, protecting workers and consumers, and preparing for future pandemics.

Newsom has until Sept. 30 to sign the bills into law or veto them.

“In a year that couldn’t be business as usual, this session we were still able to get important business done for the people of California who are facing so many challenges,” said Senate President Pro Tem Toni Atkins. “This year’s session may be over, but this pandemic is not, and neither is our work.”

Just as important as the measures that made it to Newsom’s desk were the ones that didn’t. For instance, bills that would have limited the use of sensitive personal information in contact tracing investigations died, as did a proposal to help rebuild and fund public health infrastructure across California.

“It leaves us with the status quo,” said Michelle Gibbons, executive director of the County Health Executives Association of California, which lobbies on behalf of the state’s county health directors. “If we had sufficient staffing of public health all along, and stronger resources, it would have helped.”

Immediate Action

Narrowly focused bills that targeted real-time COVID-related problems — and avoided big price tags — were among those easily winning approval.

AB-685, by Assembly member Eloise Gómez Reyes (D-San Bernardino), would require employers to notify their workers of COVID-19 infections at work — and would mandate the reporting of infection data to state and local public health authorities.

A different measure, AB-2164, would require Medi-Cal, California’s Medicaid program, to cover more telehealth visits in underserved areas by eliminating an existing requirement for patients and providers to establish an in-person relationship first.

But this wouldn’t be a permanent change: If signed, the law would sunset 180 days after the official COVID-19 state of emergency is over. Rivas said he had to scale back the cost of the measure by applying it only to the pandemic to get it passed.

“Had we not done that, it was very likely this bill would have been held in the Senate Appropriations Committee,” said Assembly member Robert Rivas (D-Hollister), who introduced the bill.

Another bill written with near missile-guided precision is AB-1710, which would allow pharmacists to administer a COVID vaccine once one is approved by the Food and Drug Administration.

“We want to make sure we can gear up as quickly as possible,” said Assembly member Jim Wood (D-Santa Rosa), who authored the bill.

Wood also authored AB-2644, which would require nursing homes to have a full-time “infection preventionist,” and to report deaths from communicable diseases to the state during an emergency. Wood said the bill was written after he “watched with horror” as COVID-19 killed thousands of nursing home residents in the spring.

Consumer and Worker Protections

Lawmakers took on powerful business interests to boost protections for essential workers.

A bill introduced by Sen. Jerry Hill (D-San Mateo) would make it easier for some employees infected with COVID-19 to file a workers’ compensation insurance claim until January 2023.

Should Newsom sign SB-1159, for instance, state law would presume that certain front-line workers — from health care workers in hospitals to firefighters who go into people’s homes — were infected on the job unless their employers prove otherwise.

The California Chamber of Commerce, which opposed the measure, questioned whether an employee’s illness could be traced to their job when the virus is so widespread. By varying degrees, at least 14 states have extended workers’ compensation to include COVID-related scenarios, according to the National Conference of State Legislatures.

Frustrated with outbreaks at meatpacking plants, lawmakers also advanced legislation calling on food-processing companies with at least 500 workers to provide two weeks of paid sick leave to those exposed to COVID-19 or advised to quarantine.

The measure, AB-1867, spearheaded by Assembly member Phil Ting (D-San Francisco), also would close a loophole in the federal emergency paid sick leave benefit that Congress authorized this spring, which excluded health care workers and emergency responders. If Newsom signs the bill, they too would qualify for two weeks of paid sick time.

And in what would be the biggest expansion to the state’s family leave program since it began in 2004, lawmakers voted to extend job protections to more workers who wish to take time off to care for a new baby or a sick relative.

California’s family leave program currently exempts small-business workers from the job protections, leaving millions of workers without the benefit. For example, an employee who works for a company with 20 or fewer employees does not qualify for job protection to bond with an infant. Employers with 50 or fewer workers aren’t required to guarantee someone’s job if they leave to care for a sick parent or other family member.

In both cases, that would change to employers with five or more workers if the governor signs SB-1383, introduced by Sen. Hannah-Beth Jackson (D-Santa Barbara).

“In the time of COVID, we are relying on families, grandparents, children to take care of each other when they get sick,” Jackson said. “We should be able to protect ourselves, to take responsibility for ourselves, to be able to protect ourselves without fear of losing our jobs.”

Lessons Learned

Inadequate personal protective gear emerged early on as one of the biggest impediments to California’s coronavirus response — and measures advanced by the legislature could prepare the state for future threats.

“We can be more prepared to protect our state in the next health crisis,” said Assembly Speaker Anthony Rendon.

California lawmakers approved a pair of high-profile bills to address protective equipment shortages. The more ambitious proposal, authored by Assembly member Freddie Rodriguez (D-Pomona), would require hospitals to stockpile a three-month supply by April 2021.

“We’ve already lost far too many members to COVID-19,” said Stephanie Roberson, lead lobbyist for the California Nurses Association, which sponsored AB-2537.

“It’s something that could have been prevented,” Roberson said, adding that “it’s the responsibility of employers to protect their workers.”

Newsom also must decide whether the state government should maintain a supply of protective gear for essential workers. SB-275, from Sen. Richard Pan (D-Sacramento) and sponsored by the Service Employees International Union California, would mandate the California Department of Public Health within one year to establish a PPE stockpile for health and other essential workers to last 90 days during a pandemic.

It also would require major employers of health care workers — such as dialysis clinics, nursing homes and hospitals — to establish by 2023 or later an additional 45-day stockpile of PPE.

An August report from the University of California-Berkeley found that at least 20,860 California cases of COVID-19 among essential workers could have been avoided, as well as dozens of deaths, if the state had had a sufficient supply of protective gear.

The powerful California Hospital Association fought both measures, saying the goals are laudable yet unworkable. “We agree that bolstering the supply and reliability of PPE for health care and other essential workers is a top priority,” said spokesperson Jan Emerson-Shea.

“It is critically important to remember, however, that we are still in the midst of a pandemic and there are still significant challenges with the global supply chain of PPE.”

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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Con suerte, el verano no terminará como comenzó. Las celebraciones de Memorial Day ayudaron a desencadenar una ola de infecciones por coronavirus en gran parte del sur y el oeste de los Estados Unidos. Y las reuniones del 4 de julio dispararon más casos de COVID.

Y ahora llega el Día del Trabajo, cuando esas regiones recién comienzan a registrar una disminución de casos. El doctor Anthony Fauci, director del Instituto Nacional de Alergias y Enfermedades Infecciosas, advirtió el miércoles 2 de septiembre que los estadounidenses deben tener cuidado para evitar otro aumento en las tasas de infección.

Pero la gente está cansada ​​de quedarse en casa, y los destinos turísticos están hambrientos de dinero en efectivo.

“Aunque sea escaparte un par de horas a un hotel cercano son como unas vacaciones de verdad”, dijo Kimberly Michaels, quien trabaja para la NASA en Huntsville, Alabama, y ​​viajó hace pocos días a Nashville, Tennessee, con su novio para celebrar el cumpleaños de él.

Kimberly Michaels y su novio Marcus Robinson manejaron desde Huntsville, Alabama, hasta Nashville, Tennessee, para celebrar el cumpleaños de Robinson. Había mucha gente cuando llegaron pero después el centro quedó vacío. Ellos no sabían que todo cerraba a las 10:30 pm.(BLAKE FARMER/WLPN)

Para el final del verano, muchos gobiernos locales están levantando restricciones para resucitar la actividad turística y rescatar a las pequeñas empresas.

Nashville, por ejemplo, dio luz verde a las tabernas ambulantes, permitiendo que los bares sobre ruedas, impulsados a pedal ​​por humanos, salgan a las calles nuevamente.

“No son el grupo favorito de Nashville, francamente. Pero la justicia requiere que se lleve a cabo este cambio de protocolo”, dijo el alcalde John Cooper, y señaló la dramática reducción de nuevos casos en la ciudad. Lo que llevó a que la primera semana de septiembre se elevara el límite de personas permitido en bodas, funerales y otras ceremonias.

En Virginia, Virginia Beach trató de ser indulgente con sus restaurantes en crisis durante el fin de semana festivo. Pero el gobernador Ralph Northam rechazó las súplicas del alcalde, basándose en las recomendaciones de Fauci. El principal experto en enfermedades infecciosas del país ha alentado a los gobernadores a mantener las restricciones para evitar otro aumento de casos relacionado con las vacaciones.

“A veces, cuando comenzamos a eliminar las restricciones, la gente tiene la impresión de ‘Oh, eso debe significar que es seguro’”, dijo la epidemióloga Melissa McPheeters de la Universidad de Vanderbilt. “Queremos asegurarnos de no dar esa impresión, porque esta enfermedad sigue aquí”.

De hecho, algunas comunidades han vuelto a imponer restricciones, especialmente para el fin de semana largo. Santa Barbara, en California, ha prohibido tomar sol en la playa para evitar otro aumento de casos.

Círculo vicioso: escuelas y COVID

También hay un nuevo factor X en el último fin de semana festivo del verano. En muchos estados, las escuelas han reanudado las clases en persona. Por lo tanto, las familias y los amigos que se encuentran ahora tienen más probabilidades de exponerse mutuamente al virus, incluso si intentaron mantenerse en un círculo cerrado durante el verano.

“Si esas burbujas ahora tienen niños que regresaron a la escuela y están interactuando con otros o han regresado a los deportes y la burbuja se ha expandido, es menos probable que estén en una reunión que sea segura”, explicó la epidemióloga Bertha Hidalgo de la Universidad de Alabama-Birmingham.

Y, sin embargo, vale la pena intentar estar juntos de manera segura, preferiblemente al aire libre, dijo Hidalgo. La experta aseguró que la salud mental de las personas necesita un impulso para pasar los próximos meses.

“Si puedes hacer las cosas de manera segura ahora, antes que llegue el invierno y el clima frío, entonces serás más resistente para superar los malos momentos que puedan venir”, opinó.

En destinos como Nashville que han dado la bienvenida a los visitantes durante la pandemia, el turismo no se ha recuperado por completo. Pero algunas noches de fin de semana, el distrito turístico colmado de luces de neón puede atraer multitudes.

La primera semana de septiembre, Vaj Vemulapalli y su novia, de Dallas, regresaron a su hotel después de sentirse incómodos con lo apretada que estaba la gente.

“Extrañamos la interacción social, ir a bares”, dijo. “Pero al final del día, nuestra postura general es que no vale la pena adquirir COVID-19 sólo por beber”.

Sin embargo, esas multitudes tienen límites, como descubrieron Kimberly Michaels y el cumpleañero Marcus Robinson. Ellos llegaron a Nashville con máscaras y listos para tener una fiesta responsable. Pero después de registrarse en su hotel, descubrieron que todo tenía que cerrar a las 10:30pm.

“Es una locura. Era como una zona en penumbras”, contó Robinson. “Entramos [al hotel], las calles estaban llenas. Nos cambiamos, salimos y nos preguntamos ‘¿a dónde fueron todos? ¿Pasó algo?’ No sabíamos nada porque no somos de aquí”.

Aún así, a medida que pasa el tiempo, algunos viajeros están dispuestos a correr más riesgos para volver a actividades que sienten normales.

Suzette Ourso vive en las afueras de Nueva Orleans y voló a Nashville para su primer viaje fuera de la ciudad desde la pandemia. Dijo que es cautelosa y usa su máscara cuando está cerca de alguien.

“Ahora tengo desinfectante de manos en mi bolso. Nunca lo había tenido antes”, dijo. “Pero puedes morir mañana viajando en tu vehículo. Así que tampoco puedes vivir tu vida con miedo”.

Ourso tiene planeado un viaje a la playa para finales de septiembre.

Esta historia es parte de una alianza entre Nashville Public Radio, NPR y Kaiser Health News.

Following nationwide protests against police brutality in which law enforcement officers wounded or blinded protesters, state and local lawmakers and an international police association are taking steps to restrict the use of “less-lethal” weapons that caused the injuries.

At least seven major U.S. cities and a few states have enacted or proposed tight limits on the use of rubber bullets and other projectiles, though some efforts for similar actions have stalled in the face of opposition from police agencies or other critics.

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Additionally, clashes between law enforcement officers and protesters in Portland, Oregon, and Washington, D.C., have triggered investigations by federal inspectors general.

After the George Floyd protests, “there was this new appetite from legislators at all levels of government to look at how to better protect protesters,” said Nick Robinson, legal adviser at the International Center for Not-for-Profit Law.

Amid calls for restrictions, the International Association of Chiefs of Police, based in Virginia with 31,000 members in dozens of countries, plans to review its recommended policies on pepper spray and less-lethal “impact projectiles” as well as other aspects of crowd control, said Terrence Cunningham, the organization’s deputy executive director.

“It became very clear to us that we need to revise those policies” in the wake of the Black Lives Matter protests, he said. Some law enforcement agencies “have done a great job managing the crowds and the protests,” he said. “Others could have done a better job.”

The legislation and studies come after USA TODAY and KHN documented dozens of injuries sustained after the killings of George Floyd in Minneapolis and Breonna Taylor in Louisville. Weapons used by local police or other law enforcement agencies included sponge and bean bag projectiles as well as “pepper balls” — essentially paintballs filled with chemical irritants.

At least 30 people suffered eye injuries, and approximately one-third of the cases resulted in complete loss of vision in one eye, during protests in late spring, according to a study by the American Academy of Ophthalmology and the University of California-San Francisco’s ophthalmology department.

That’s what happened to Shantania Love in California.

“Peaceful protests shouldn’t end in people being blinded or shot in the head,” said Love, who permanently lost sight in her left eye in May after being shot with a less-lethal projectile in Sacramento.

Doctors at Dell Seton Medical Center at the University of Texas were so shocked by “rubber bullet” wounds in Austin that they documented them in a letter to the New England Journal of Medicine.

“All the injuries were bad. They made a hole in somebody. They broke bones,” said Dr. Jayson Aydelotte, the hospital’s chief of trauma surgery. “We wrote this to raise awareness so communities can make their own decisions about what to do with this information.”

The Austin police chief said his department would no longer use bean bag rounds on crowds after the projectiles — encased birdshot fired from a shotgun — caused many of the injuries seen at the hospital.

But many other U.S. law enforcement departments have continued using less-lethal weapons during protests across the nation.

Police in Rochester, New York, have repeatedly used pepper balls on crowds this summer, as recently as Wednesday. Officers from the Metropolitan Police Department of the District of Columbia fired sting balls and tear gas after protesters threw bricks, glass and smoke grenades at them during clashes over the weekend, The Washington Post reported.

There are no national standards for police use of less-lethal projectiles and no comprehensive data on their use, said Brian Higgins, a former New Jersey police chief who’s now an adjunct professor at the John Jay College of Criminal Justice in New York City.

Police department rules vary widely. In some incidents this year, police appear to have violated their own rules, which allow projectiles to be fired only at dangerous individuals.

In July, the International Association of Chiefs of Police held a webinar on lessons for law enforcement from this year’s protests and other recent demonstrations. It drew 800 participants, Cunningham said.

“It raised more questions than we had answers to,” he said. “For some of these practices, the policies that we have are pretty old, to be honest with you, and this is a great opportunity to rethink it.”

The association’s guidelines for sponge and bean bag rounds and other impact projectiles haven’t been revised since 2002. Meanwhile, the technology and tactics of less-lethal weapons have substantially changed.

Its review could eventually lead to another congress of police executives and union leaders, who produced a consensus policy on the use of force three years ago, Cunningham said.

One message in particular needs to be repeated and made clearer, he said. Less-lethal projectiles should be used only to subdue dangerous individuals and not fired indiscriminately into crowds, as happened in several instances that USA Today and KHN documented.

Crowd-control policies should be updated not just because of the injuries but to adapt to new tactics used by peaceful protesters and troublemakers, law enforcement officials said. Social media has transformed mass demonstrations, enabling marchers to assemble more quickly and in greater numbers, they said, and police need to respond.

“Some crowds have gone from a peaceful protest of 30 or 40 people to 1,000 strong within an hour,” said Larry Cosme, national president of the Federal Law Enforcement Officers Association.

Few if any of the initiatives will generate instant change, independent experts cautioned. Law-enforcement agencies oppose some restrictions on less-lethal projectiles, saying the weapons are a critical tool to control uncooperative people that stops short of deadly force.

The IACP makes recommendations on police use of force but law enforcement agencies set their own policies. Even the best policies — including those set in law — are just slogans unless departments have the resources to carry them out, experts said.

“I’d be very curious to know what they’re basing any changes on, other than placating people,” Charlie Mesloh, a certified instructor on the use of police projectiles and a professor at Northern Michigan University, said about the association’s initiative.

“Unless someone’s willing to pay for training that would make things better, this is just another piece of paper,” he said. “There are no magic solutions.”

Reform advocates took a setback this week when the California legislature failed to pass a bill that would have allowed police to use tear gas and riot projectiles only against dangerous individuals and only after warning the crowd they’re part of. It would have required police agencies to report their use of less-lethal force annually to the U.S. Justice Department.

Police groups opposed the bill, especially its limits on tear gas, which the Los Angeles County Sheriff’s Department told legislators can “prevent the escalation of physical force” by dispersing a crowd without the use of projectiles.

Assembly member Lorena Gonzalez, who sponsored the bill, said she’ll reintroduce it next year. Robinson, of the International Center for Not-for-Profit Law, said he expects many new measures to be proposed across the country in January, when state legislatures convene.

Another stalled effort is in Minnesota, where lawmakers did not approve a proposal that would have prohibited law enforcement agencies and peace officers from using chemical weapons and kinetic energy munitions such as plastic wax, wood or rubber-coated projectiles on civilian populations.

At the federal government level, a preliminary version of a proposed amendment to the National Defense Authorization Act included restrictions on less-lethal munitions. But the restrictions were cut from the proposal before it was voted on and turned down.

Washington, D.C., officials in July enacted a sweeping police reform measure that bans the use of rubber bullets or tear gas against nonviolent protesters. Less-lethal munitions and chemical spray were used to disperse a crowd in June before President Donald Trump walked through Lafayette Square to display a Bible in front of a historic church.

Derrick Sanderlin with his wife, Cayla Sanderlin. Derrick, who had trained San Jose police recruits on avoiding racial bias, was hit by a projectile that ruptured a testicle. (The Sanderlin family)

San Jose’s City Council is considering new controls on such weapons. In June, the Seattle City Council banned the weapons outright, but a federal judge blocked the law after the Justice Department argued it would take away law enforcement’s options to “modulate” the use of force.

As part of a larger police reform measure, Colorado banned law enforcement officers from firing less-lethal projectiles indiscriminately into a crowd or aiming them at someone’s head or pelvis. Language in a Virginia bill would ban their use by all law enforcement.

In addition, inspectors general at the Justice Department and the Department of Homeland Security are investigating the actions of federal law enforcement officers in Portland after lawmakers raised concerns. DOJ is also investigating federal officials’ role during protests in Washington, D.C.

Amnesty International USA recently released a wide-ranging report on the protests, chronicling what it said were 125 instances of police violence against protesters, journalists, medics and legal observers in 40 states and Washington, D.C., in May and June. The group accused police of mishandling a litany of less-lethal devices, including sting-ball grenades, rubber pellets and sponge rounds.

Amnesty called for the development of national guidelines for less-lethal projectiles. The group said they should be independently tested for accuracy and safety, and they should be used only in situations of “violent disorder” in which “no less extreme measures are sufficient” to stop the violence.

Cosme said he’s open to starting discussions about updating the national consensus policy to include more detailed standards for less-lethal munitions. He also supports requiring testing of devices to ensure accuracy and safety.

But he said less-lethal munitions are critical tools for crowd control because officers can target individuals from a distance.

Chuck Wexler, executive director of the Police Executive Research Forum, a think tank for police leadership, said the protests in recent months could offer lessons for how police handle demonstrations.

“We’ll be looking at this,” he said. But Wexler said he does not have a concrete plan or timetable for convening reviews of what happened, given the pandemic.

“The real key question is, What kind of strategies can we develop that are the most humane for cops and for the community alike?” he said.

“What did we learn? What are some of the cautionary tales?” Wexler said. “What strategies were effective? Where were injuries the least for demonstrators and cops alike?”

One New Year’s Day, Rob Purdie woke up with a headache that wouldn’t quit. Vision problems, body aches and a slight fever followed. At the emergency room, the Bakersfield, California, resident was given antibiotics, which didn’t touch his symptoms. His headache turned into cluster headaches and the fatigue became worse.

“I was not really functional,” he said in a recent interview, recalling the beginning of his eight-year struggle with the mystery illness.

After five weeks, he ended up at Bakersfield’s Kern Medical, home to the Valley Fever Institute. A resident physician quickly realized the cause of the symptoms. A spinal fluid sample confirmed Purdie was suffering from valley fever, a fungal infection that occurs in the deserts of the Southwest, primarily Arizona and California. The infection had spread from his lungs into his brain, causing inflammation and headaches.

He was in and out of the hospital for a year with debilitating symptoms. There is no cure for valley fever; doctors use existing antifungal medications that often don’t relieve the symptoms. He tried three oral antifungal drugs and finally ended up with injections of amphotericin B — “salvage therapy,” meaning it is a drug of last resort — which he is still on, eight years later.

Purdie, 39, now works for the Valley Fever Institute, teaching others about the poorly understood disease. He still has no clue how he inhaled the spore that causes it. “I was probably out doing yardwork,” he said, “and took the wrong breath.”

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Valley fever — coccidioidomycosis (“cocci” for short) is the scientific name — is an “orphan disease.” An orphan disease is defined in the U.S. as one affecting fewer than 200,000 people. Valley fever is diagnosed in the range of 10,000 to 15,000 cases a year in the U.S. with 160 fatalities, though both numbers are likely several times higher in reality because many cases are never identified. That’s why it’s often hard to attract attention to developing a vaccine.

In the 1980s, a promising vaccine candidate failed in clinical trials. There has been no other candidate for a vaccine until recently. Now, with mouse studies showing promise, there is a renewed push. Dr. John Galgiani, head of the University of Arizona’s Valley Fever Center for Excellence, is heading up vaccine research there and believes the vaccine shown to prevent valley fever in mice should be available for dogs, which also get infected in large numbers, as soon as next year. A veterinary vaccine company, Anivive, is developing it. “It’s very promising,” said Galgiani.

The same vaccine is in the early stage of development for humans, though it’s still years away.

In addition to Galgiani’s research, the National Institutes for Health’s National Institute for Allergy and Infectious Diseases is funding two other cocci vaccine research projects.

One drug, nikkomycin Z, has cured the disease in mice; experts believe it could do the same for humans. It’s being developed by the University of Arizona with funding from the National Institutes of Health, the Food and Drug Administration and other sources.

Valley fever is getting more attention for a few reasons. The number of cases has been increasing, and a study last year predicted it may spread north through the West as the climate warms. By 2095, five more states may be added to the list of 12 where the fungus now lives, growing its range in a swath across the West and into the Great Plains from Texas to Montana and North Dakota. The fungus is also found in Mexico and in Central and South America.

U.S. House Minority Leader Kevin McCarthy represents parts of California’s Central Valley, where cocci is prevalent. It’s a voting issue there and the Republican has made it a priority, bringing federal dollars to bear for research, surveillance and awareness.

The big problem with developing a vaccine is the relatively small market. The cost of studies to bring the drug to market, Galgiani estimated, is $50 million, while a federal study in 2000 pegged the cost of developing a vaccine at $360 million — though Galgiani believes it could be done for half that, still a hefty cost for a small group of patients.

“We don’t compete effectively against other investment opportunities,” he said.

Two types of the fungus Coccidioides cause valley fever. They dwell in desert soil between 2 inches and a foot deep and when disturbed become suspended in the air and are occasionally inhaled.

Cocci, sometimes called “desert rheumatism,” causes fever, cough, body aches, extreme exhaustion and difficulty breathing. There is no person-to-person spread.

Because the pneumonia-like symptoms are similar to those caused by the novel coronavirus, many cases of valley fever are likely being reported as COVID-19, Galgiani said, which means they are not getting treatment with antifungal medications that can temper symptoms if applied early on.

The infection can spur inflammation that “causes scarring and damage to parts of your nervous system,” Galgiani said. “Early diagnosis means less damage.”

Valley fever case numbers have grown substantially in the past five years, though they are down this year, perhaps because many doctors mistake the condition for COVID-19.

Most cases resolve on their own without treatment. Yet in 5% to 8% of diagnosed patients, the disease spreads to skin, bones and organs, and can be deadly. If it reaches the brain and spinal cord, as it did with Rob Purdie, it can cause meningitis, or swelling of the membranes. These patients, if they don’t die, may need antifungal treatments for life.

Rob Purdie was infected with valley fever in 2012, and sought treatment at Kern Medical’s Valley Fever Institute in Bakersfield, California. Today, Purdie works at the institute as the patient and program development coordinator. (Valley Fever Institute)

Blacks and Filipinos are four times more likely to have these serious effects than other demographic groups, according to Galgiani.

An epidemic devastated prisoners in the San Joaquin Valley, the southern section of California’s Central Valley, in the early and mid-2000s. Investigation showed the rate in two prisons — which had populations with higher numbers of minorities than the surrounding communities — was hundreds of times higher than in the surrounding area. Eventually, more than 30 prisoners died and many more had serious chronic infections.

The high season for infection is late summer and fall. Some 95% of the cases occur in the Central Valley and the Phoenix area. “They are in urban areas; you don’t have to be out on the desert to be infected,” Galgiani said.

Compounding the effects of valley fever is that it often goes undiagnosed. Even in Phoenix’s Maricopa County — where the fungus is endemic in the desert soil and 50% of the nation’s cases occur — it’s not on the radar screen of many doctors. Further complicating a diagnosis is that test results are often wrong and it may take two or three tests to identify the disease.

The lack of awareness of valley fever is one of the factors that led Purdie to take a job last year as outreach coordinator of the Valley Fever Institute. “There’s a lot of misinformation about it,” he said.

The vaccine that experts are banking on is called Delta CPS-1. It has proved very effective in mice in published studies and could be on the market as soon as next year for dogs. It’s estimated that 60,000 dogs contract valley fever every year in what’s known as the “Valley Fever Corridor” between Phoenix and Tucson, Arizona, and the numbers are probably similar for Bakersfield and other parts of the Central Valley. Symptoms in canines are similar to those in humans.

The same vaccine could one day prove effective in humans, though trials are years and many millions of dollars away. “It’s a great candidate for human immunization,” said Dr. Tom Monath, managing partner and chief scientific officer of Crozet BioPharma, which is working on the vaccine. “It’s hard to offer any promises, but it could take less than 10 years.”

Old. Chronically ill. Black.

People who fit this description are more likely to die from COVID-19 than any other group in the country.

They are perishing quietly, out of sight, in homes and apartment buildings, senior housing complexes, nursing homes and hospitals, disproportionately poor, frail and ill, after enduring a lifetime of racism and its attendant adverse health effects.

Yet, older Black Americans have received little attention as protesters proclaim that Black Lives Matter and experts churn out studies about the coronavirus.

“People are talking about the race disparity in COVID deaths, they’re talking about the age disparity, but they’re not talking about how race and age disparities interact: They’re not talking about older Black adults,” said Robert Joseph Taylor, director of the Program for Research on Black Americans at the University of Michigan’s Institute for Social Research.

A KHN analysis of data from the Centers for Disease Control and Prevention underscores the extent of their vulnerability. It found that African Americans ages 65 to 74 died of COVID-19 five times as often as whites. In the 75-to-84 group, the death rate for Blacks was 3½ times greater. Among those 85 and older, Blacks died twice as often. In all three age groups, death rates for Hispanics were higher than for whites but lower than for Blacks.

(The gap between Blacks and whites narrows over time because advanced age, itself, becomes an increasingly important, shared risk. Altogether, 80% of COVID-19 deaths are among people 65 and older.)

The data comes from the week that ended Feb. 1 through Aug. 8. Although breakdowns by race and age were not consistently reported, it is the best information available.

Mistrustful of Outsiders

Social and economic disadvantage, reinforced by racism, plays a significant part in unequal outcomes. Throughout their lives, Blacks have poorer access to health care and receive services of lower quality than does the general population. Starting in middle age, the toll becomes evident: more chronic medical conditions, which worsen over time, and earlier deaths.

Several conditions — diabetes, chronic kidney disease, obesity, heart failure and pulmonary hypertension, among others — put older Blacks at heightened risk of becoming seriously ill and dying from COVID-19.

Yet many vulnerable Black seniors are deeply distrustful of government and health care institutions, complicating efforts to mitigate the pandemic’s impact.

The infamous Tuskegee syphilis study — in which African American participants in Alabama were not treated for their disease — remains a shocking, indelible example of racist medical experimentation. Just as important, the lifelong experience of racism in health care settings — symptoms discounted, needed treatments not given — leaves psychic scars.

In Seattle, Catholic Community Services sponsors the African American Elders Program, which serves nearly 400 frail homebound seniors each year.

“A lot of Black elders in this area migrated from the South a long time ago and were victims of a lot of racist practices growing up,” said Margaret Boddie, 77, who directs the program. “With the pandemic, they’re fearful of outsiders coming in and trying to tell them how to think and how to be. They think they’re being targeted. There’s a lot of paranoia.”

“They won’t open the door to people they don’t know, even to talk,” complicating efforts to send in social workers or nurses to provide assistance, Boddie said.

In Los Angeles, Karen Lincoln directs Advocates for African American Elders and is an associate professor of social work at the University of Southern California.

“Health literacy is a big issue in the older African American population because of how people were educated when they were young,” she said. “My maternal grandmother, she had a third-grade education. My grandfather, he made it to the fifth grade. For many people, understanding the information that’s put out, especially when it changes so often and people don’t really understand why, is a challenge.”

What this population needs, Lincoln suggested, is “help from people who they can relate to” — ideally, a cadre of African American community health workers.

With suspicion running high, older Blacks are keeping to themselves and avoiding health care providers.

“Testing? I know only of maybe two people who’ve been tested,” said Mardell Reed, 80, who lives in Pasadena, California, and volunteers with Lincoln’s program. “Taking a vaccine [for the coronavirus]? That is just not going to happen with most of the people I know. They don’t trust it and I don’t trust it.”

Reed has high blood pressure, anemia, arthritis and thyroid and kidney disease, all fairly well controlled. She rarely goes outside because of COVID-19. “I’m just afraid of being around people,” she admitted.

Other factors contribute to the heightened risk for older Blacks during the pandemic. They have fewer financial resources to draw upon and fewer community assets (such as grocery stores, pharmacies, transportation, community organizations that provide aging services) to rely on in times of adversity. And housing circumstances can contribute to the risk of infection.

In Chicago, Gilbert James, 78, lives in a 27-floor senior housing building, with 10 apartments on each floor. But only two of the building’s three elevators are operational at any time. Despite a “two-person-per-elevator policy,” people crowd onto the elevators, making it difficult to maintain social distance.

“The building doesn’t keep us updated on how they’re keeping things clean or whether people have gotten sick or died” of COVID-19, James said. Nationally, there are no efforts to track COVID-19 in low-income senior housing and little guidance about necessary infection control.

Large numbers of older Blacks also live in intergenerational households, where other adults, many of them essential workers, come and go for work, risking exposure to the coronavirus. As children return to school, they, too, are potential vectors of infection.

‘Striving Yet Never Arriving’

In recent years, the American Psychological Association has called attention to the impact of racism-related stress in older African Americans — yet another source of vulnerability.

This toxic stress, revived each time racism becomes manifest, has deleterious consequences to physical and mental health. Even racist acts committed against others can be a significant stressor.

“This older generation went through the civil rights movement. Desegregation. Their kids went through busing. They grew up with a knee on their neck, as it were,” said Keith Whitfield, provost at Wayne State University and an expert on aging in African Americans. “For them, it was an ongoing battle, striving yet never arriving. But there’s also a lot of resilience that we shouldn’t underestimate.”

This year, for some elders, violence against Blacks and COVID-19’s heavy toll on African American communities have been painful triggers. “The level of stress has definitely increased,” Lincoln said.

During ordinary times, families and churches are essential supports, providing practical assistance and emotional nurturing. But during the pandemic, many older Blacks have been isolated.

In her capacity as a volunteer, Reed has been phoning Los Angeles seniors. “For some of them, I’m the first person they’ve talked to in two to three days. They talk about how they don’t have anyone. I never knew there were so many African American elders who never married and don’t have children,” she said.

Meanwhile, social networks that keep elders feeling connected to other people are weakening.

“What is especially difficult for elders is the disruption of extended support networks, such as neighbors or the people they see at church,” said Taylor, of the University of Michigan. “Those are the ‘Hey, how are you doing? How are your kids? Anything you need?’ interactions. That type of caring is very comforting and it’s now missing.”

In Brooklyn, New York, Barbara Apparicio, 77, has been having Bible discussions with a group of church friends on the phone each weekend. Apparicio is a breast cancer survivor who had a stroke in 2012 and walks with a cane. Her son and his family live in an upstairs apartment, but she does not see him much.

“The hardest part for me [during this pandemic] has been not being able to go out to do the things I like to do and see people I normally see,” she said.

In Atlanta, Celestine Bray Bottoms, 83, who lives on her own in an affordable senior housing community, is relying on her faith to pull her through what has been a very difficult time. Bottoms was hospitalized with chest pains this month — a problem that persists. She receives dialysis three times a week and has survived leukemia.

“I don’t like the way the world is going. Right now, it’s awful,” she said. “But every morning when I wake up, the first thing I do is thank the Lord for another day. I have a strong faith and I feel blessed because I’m still alive. And I’m doing everything I can not to get this virus because I want to be here a while longer.”

KHN data editor Elizabeth Lucas contributed to this story.

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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Dozens of major hospitals across the U.S. are grappling with whether to ignore a federal decision allowing broader emergency use of blood plasma from recovered COVID patients to treat the disease in favor of dedicating their resources to a gold-standard clinical trial that could help settle the science for good.

As many as 45 hospitals from coast to coast have expressed interest in collaborating on a randomized, controlled clinical trial sponsored by Vanderbilt University Medical Center, said principal investigator Dr. Todd Rice.

Officials at some hospitals said they are considering committing only to the clinical trial — and either avoiding or minimizing use of convalescent plasma through an emergency use authorization issued Aug. 23 by the federal Food and Drug Administration.

The response comes amid concerns that the Trump administration pressured the FDA into approving broader use of convalescent plasma, which already has been administered to more than 77,000 COVID patients in the U.S. President Donald Trump characterized the treatment as a “powerful therapy,” even as government scientists called for more evidence that COVID plasma is beneficial.

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A National Institutes of Health panel this week countered the FDA’s decision, saying that the therapy “should not be considered the standard of care for the treatment of patients with COVID-19” and that well-designed trials are needed to determine whether the therapy is helpful. Data so far suggests the treatment could be beneficial, but it’s not definitive.

“It’s an important scientific question that we don’t have the answer to yet,” said Rice, an associate professor of medicine and director of VUMC’s medical intensive care unit.

Convalescent plasma uses an antibody-rich blood product taken from people who have recovered from a viral infection and injects it into people still suffering in the hopes that the therapy will jump-start their immune systems, boosting their ability to fight the virus. The approach has been used on an experimental basis for more than a century to fight other virulent diseases, including the 1918 flu, measles, Ebola, SARS and H1N1 influenza.

Last month, NIH officials awarded $34 million to Rice’s study, the Passive Immunity Trial of the Nation for COVID-19, dubbed PassItOnII, which has also received funding from country music superstar Dolly Parton. The trial, which aims to enroll 1,000 adult hospitalized patients, could meet its goals by the end of October. If it shows evidence of likely benefit to COVID patients, it could immediately change clinical practice, Rice said.

Half of the participants will receive convalescent plasma with high levels of disease-fighting antibodies from a stockpile of more than 150 units of the product already collected, Rice said. The other half will receive a placebo solution.

Though the trial launched in April, enrollment has been slow. The funding allows enlistment at more than 50 sites nationwide. That has spurred new conversations about joining the trial — and about not employing the controversial authorization issued by the FDA, said Dr. Claudia Cohn, director of the Blood Bank Laboratory at the University of Minnesota Medical School. She expected her institution to decide this week.

“I’d rather frame it as not rejecting the FDA, but simply taking the longer view,” said Cohn, who is also medical director for the AABB, an international nonprofit focused on transfusion medicine and cellular therapies.

At the Ohio State University Wexner Medical Center, officials have opted to join the trial and are considering making it “the first option” for COVID patients who qualify, said Dr. Sonal Pannu, an assistant professor and pulmonologist.

“Many of the academic leaders believe we should do the trial, and we would be severely limiting” the emergency use authorization, or EUA, she said, noting that first patients could be enrolled soon. The plasma still could be used under the EUA to treat patients such as prisoners, who are unable to consent to join a clinical trial, she added.

That’s the same stance adopted by the University of Washington, said Dr. Nicholas Johnson, an assistant professor of emergency medicine who’s leading the trial at the Seattle site. “We’re really interested in enrolling patients as the first option,” he said.

The questions are similar to those raised with hydroxychloroquine, another treatment Trump touted for treating COVID-19. FDA officials issued an EUA for the drug in April, only to revoke it in June after data indicated the drug might be harmful.

“On a couple of occasions, we’ve allowed clinical practice to get ahead of the science,” Johnson said. “We’ve learned that lesson a couple of times now.”

FDA officials did not respond to requests for comment.

Top federal health leaders, including NIH Director Dr. Francis Collins and Dr. Anthony Fauci, the nation’s leading infectious disease doctor, initially resisted the move to issue the EUA for convalescent plasma last month, telling The New York Times that the evidence for it was too weak.

Trump has criticized the FDA for moving too slowly to speed approval of treatments and vaccines for COVID-19. He announced the EUA on the eve of the Republican National Convention, calling it a “truly historic announcement.”

Issuing the EUA puts the fate of clinical trials into “extreme jeopardy,” said Arthur Caplan, a professor of bioethics at the New York University School of Medicine. With convalescent plasma in very short supply, it sets the stage for fights over access and makes sick patients less inclined to join a trial, where they might receive a placebo.

“If you have the EUA, it starts to damage the trials,” Caplan said.

Still, given that the FDA has authorized convalescent plasma for patients ill with COVID-19, hospitals that hesitate or refuse to provide it outside a trial are sure to face questions from families.

That creates “a very interesting and delicate ethics problem,” said Cohn.

“If you commit to the randomized controlled trial only, you’re committing to a long-term dedication to science,” she said. “The question is, is it ethically inappropriate not to provide a therapy that has been shown to be possibly beneficial?”

Johnson, at the University of Washington, said most patients have been willing — even eager — to participate in clinical trials once they understand the need for rigorous scientific results.

And Caplan, the bioethicist, applauded the decision of hospitals to minimize the EUA and focus on the trial, calling it “a pretty feisty action.”

“It’s sensible,” he said. “It’s likely to really generate an answer to the question of ‘Does COVID convalescent plasma do anything?’”