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“Lord, give me back my memory.”

For months, as Marilyn Walters has struggled to recover from COVID-19, she has repeated this prayer day and night.

Like other older adults who’ve become critically ill from the coronavirus, Walters, 65, describes what she calls “brain fog” — difficulty putting thoughts together, problems with concentration, the inability to remember what happened a short time before.

This sudden cognitive dysfunction is a common concern for seniors who’ve survived a serious bout of COVID-19.

“Many older patients are having trouble organizing themselves and planning what they need to do to get through the day,” said Dr. Zijian Chen, medical director of the Center for Post-COVID Care at Mount Sinai Health System in New York City. “They’re reporting that they’ve become more and more forgetful.”

Other challenges abound: overcoming muscle and nerve damage, improving breathing, adapting to new impairments, regaining strength and stamina, and coping with the emotional toll of unexpected illness.

Most seniors survive COVID-19 and will encounter these concerns to varying degrees. Even among the age group at greatest risk — people 85 and older — just 28% of those with confirmed cases end up dying, according to data from the Centers for Disease Control and Prevention. (Because of gaps in testing, the actual death rate may be lower.)

Walters, who lives in Indianapolis, spent almost three weeks in March and April heavily sedated, on a ventilator, fighting for her life in intensive care. Today, she said, “I still get tired real easy and I can’t breathe sometimes. If I’m walking sometimes my legs get wobbly and my arms get like jelly.”

“Emotionally, it’s been hard because I’ve always been able to do for myself, and I can’t do that as I like. I’ve been really nervous and jittery,” Walters said.

Younger adults who’ve survived a serious course of COVID-19 experience similar issues but older adults tend to have “more severe symptoms, and more limitations in terms of what they can do,” Chen said.

“Recovery will be on the order of months and years, not days or weeks,” said Dr. E. Wesley Ely, co-director of the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt University Medical Center. Most likely, he speculated, a year after fighting the disease at least half of the critically ill older patients will not have fully recovered.

The aftereffects of delirium — an acute, sudden change of consciousness and mental acuity — can complicate recovery from COVID-19. Seniors hospitalized for serious illness are susceptible to the often-unrecognized condition when they’re immobilized for a long time, isolated from family and friends, and given sedatives to ease agitation or narcotics for pain, among other contributing factors.

In older adults, delirium is associated with a heightened risk of losing independence, developing dementia and dying. It can manifest as acute confusion and agitation or as uncharacteristic unresponsiveness and lethargy.

“What we’re seeing with COVID-19 and older adults are rates of delirium in the 70% to 80% range,” said Dr. Babar Khan, associate director of Indiana University’s Center for Aging Research at the Regenstrief Institute, and one of Walters’ physicians.

Gordon Quinn, 77, a Chicago documentary filmmaker, believes he contracted COVID-19 at a conference in Australia in early March. At Northwestern Memorial Hospital, he was put on a ventilator twice in the ICU, for a total of nearly two weeks, and remembers having “a lot of hallucinations” — a symptom of delirium.

“I remember vividly believing I was in purgatory. I was paralyzed — I couldn’t move. I could hear snatches of TV — reruns of ‘Law & Order: Special Victims Unit’ — and I asked myself, ‘Is this my life for eternity?’” Quinn said.

Given the extent of delirium and mounting evidence of neurological damage from COVID-19, Khan said he expects to see “an increased prevalence of ICU-acquired cognitive impairment in older COVID patients.”

Ely agrees. “These patients will urgently need to work on recovery,” he said. Family members should insist on securing rehabilitation services — physical therapy, occupational therapy, speech therapy, cognitive rehabilitation — after the patient leaves the hospital and returns home, he advised.

“Even at my age, people can get incredible benefit from rehab,” said Quinn, who spent nearly two weeks at Chicago’s Shirley Ryan AbilityLab, a rehabilitation hospital, before returning home and getting several weeks of home-based therapy. Today, he’s able to walk nearly 2 miles and has returned to work, feeling almost back to normal.

James Talaganis, 72, of Indian Head Park, Illinois, also benefited from rehab at Shirley Ryan AbilityLab after spending nearly four months in various hospitals beginning in early May.

Talaganis had a complicated case of COVID-19: His kidneys failed and he was put on dialysis. He experienced cardiac arrest and was in a coma for almost 58 days while on a ventilator. He had intestinal bleeding, requiring multiple blood transfusions, and was found to have crystallization and fibrosis in his lungs.

When Talaganis began his rehab on Aug. 22, he said, “my whole body, my muscles were atrophied. I couldn’t get out of bed or go to the toilet. I was getting fed through a tube. I couldn’t eat solid foods.”

In early October, after getting hours of therapy each day, Talaganis was able to walk 660 feet in six minutes and eat whatever he wanted. “My recovery — it’s a miracle. Every day I feel better,” he said.

Unfortunately, rehabilitation needs for most older adults are often overlooked. Notably, a recent study found that one-third of critically ill older adults who survive a stay in the ICU did not receive rehab services at home after hospital discharge.

“Seniors who live in more rural areas or outside bigger cities where major hospital systems are providing cutting-edge services are at significant risk of losing out on this potentially restorative care,” said Dr. Sean Smith, an associate professor of physical medicine and rehabilitation at the University of Michigan.

Sometimes what’s most needed for recovery from critical illness is human connection. That was true for Tom and Virginia Stevens of Nashville, Tennessee, in their late 80s, who were both hospitalized with COVID-19 in early August.

Ely, one of their physicians, found them in separate hospital rooms, frightened and miserable. “I’m worried about my husband,” he said Virginia told him. “Where am I? What is happening? Where is my wife?” the doctor said Tom asked, before crying out, “I have to get out of here.”

Ely and another physician taking care of the couple agreed. Being isolated from each other was dangerous for this couple, married for 66 years. They needed to be put in a room together.

When the doctor walked into their new room the next day, he said, “it was a night-and-day difference.” The couple was sipping coffee, eating and laughing on beds that had been pushed together.

“They both got better from that point on. I know that was because of the loving touch, being together,” Ely said.

That doesn’t mean recovery has been easy. Virginia and Tom still struggle with confusion, fatigue, weakness and anxiety after their two-week stay in the hospital, followed by two weeks in inpatient rehabilitation. Now, they’re in a new assisted living residence, which is allowing outdoor visits with their family.

“Doctors have told us it will take a long time and they may never get back to where they were before COVID,” said their daughter, Karen Kreager, also of Nashville. “But that’s OK. I’m just so grateful that they came through this and we get to spend more time with them.”

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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When Terry Mutter woke up with a headache and sore muscles on a recent Wednesday, the competitive weightlifter chalked it up to a hard workout.

By that evening, though, he had a fever of 101 degrees and was clearly ill. “I felt like I had been hit by a truck,” recalled Mutter, who lives near Seattle.

The next day he was diagnosed with COVID-19. By Saturday, the 58-year-old was enrolled in a clinical trial for the same antibody cocktail that President Donald Trump claimed was responsible for his coronavirus “cure.”

“I had heard a little bit about it because of the news,” said Mutter, who joined the study by drugmaker Regeneron to test whether its combination of two man-made antibodies can neutralize the deadly virus. “I think they probably treated him with everything they had.”

Mutter learned about the study from his sister-in-law, who works at Seattle’s Fred Hutchinson Cancer Research Center, one of dozens of trial sites nationwide. He is among hundreds of thousands of Americans — including the president — who’ve taken a chance on experimental therapies to treat or prevent COVID-19.

But with nearly 8 million people in the U.S. infected with the coronavirus and more than 217,000 deaths attributed to COVID, many patients are unaware of such options or unable to access them. Others remain wary of unproven treatments that can range from drugs to vaccines.

“Honestly, I don’t know whether I would have gotten a call if I hadn’t known somebody who said, ‘Hey, here’s this study,’” said Mutter, a retired executive with Boeing Co.

The website clinicaltrials.gov, which tracks such research, reports more than 3,600 studies involving COVID-19 or SARS-CoV-2, the virus that causes the disease. More than 430,000 people have volunteered for such studies through the COVID-19 Prevention Network. Thousands of others have received therapies, like the antiviral drug remdesivir, under federal emergency authorizations.

Faced with a dire COVID diagnosis, how do patients or their families know whether they can — or should — aggressively seek out such treatments? Conversely, how can they decide whether to refuse them if they’re offered?

Such medical decisions are never easy — and they’re even harder during a pandemic, said Annette Totten, an associate professor of medical informatics and clinical epidemiology at Oregon Health & Science University.

“The challenge is the evidence is not good because everything with COVID is new,” said Totten, who specializes in medical decision-making. “I think it’s hard to cut through all the noise.”

Consumers have been understandably whipsawed by conflicting information about potential COVID treatments from political leaders, including Trump, and the scientific community. The antimalarial drug hydroxychloroquine, touted by the president, received emergency authorization from the federal Food and Drug Administration, only to have the decision revoked several weeks later out of concern it could cause harm.

Convalescent plasma, which uses blood products from people recovered from COVID-19 to treat those who are still ill, was given to more than 100,000 patients in an expanded-access program and made widely available through another emergency authorization — even though scientists remain uncertain of its benefits.

Regeneron and the pharmaceutical firm Eli Lilly and Co. have both requested emergency use authorization for their monoclonal antibody therapies, even as scientists say such approval could jeopardize enrollment in the randomized controlled trials that will prove whether or how well they work. So far, about 2,500 people have enrolled in the Regeneron trials, with about 2,000 of them receiving the therapy, a company spokesperson said. Others have received the treatment through so-called compassionate use programs, though the company wouldn’t say how many.

Last week, the National Institutes of Health paused the Lilly antibody trial after an independent monitoring board raised safety concerns.

“With all of the information swirling around in the media, it’s hard for patients to make good decisions — and for doctors to make those decisions,” said Dr. Benjamin Rome, a general internist and health policy researcher at Harvard Medical School’s Portal program. “You shouldn’t expect that what you’ve heard about on the news is the right treatment for you.”

Even so, people facing COVID shouldn’t be afraid to question whether treatment options are available to them, Rome said. “As a doctor, I never mind when patients ask,” he said.

Patients and families should understand what the implications of those treatments might be, Totten advised. Early phase 1 clinical trials focus largely on safety, while larger phase 2 and phase 3 trials determine efficacy. Any experimental treatment raises the possibility of serious side effects.

Ideally, health care providers would provide such information about treatments and risks unprompted. But during a pandemic, especially in a high-stress environment, they might not, Totten noted.

“It’s important to be sort of insistent,” she said. “If you ask a question, you have to ask it again. Sometimes you have to be willing to be a little pushy,” she said.

Patients and families should take notes or record conversations for later review. They should ask about financial compensation for participation. Many patients in COVID-19 trials are paid modest amounts for their time and travel.

And they should think about how any treatment fits into their larger system of values and goals, said Angie Fagerlin, a professor and the chair of the population health sciences department at the University of Utah.

“What are the pros and what are the cons?” Fagerlin said. “Where would your decision regret be: Not doing something and getting sicker? Or doing something and having a really negative reaction?”

One consideration may be the benefit to the wider society, not just yourself, she said. For Mutter, helping advance science was a big reason he agreed to enroll in the Regeneron trial.

“The main thing that made me interested in it was in order for therapeutics to move forward, they need people,” he said. “At a time when there’s so much we can’t control, this would be a way to come up with some kind of a solution.”

That decision led him to Fred Hutch, which is collaborating on two Regeneron trials, one for prevention of COVID-19 and one for treatment of the disease.

“It was a six-hour visit,” he said. “It’s two hours to get the infusion. It’s a very slow IV drip.”

Mutter was the second person enrolled in the treatment trial at Fred Hutch, said Dr. Shelly Karuna, a co-principal investigator. The study is testing high and low doses of the monoclonal antibody cocktail against a placebo.

“I am struck by the profound altruism of the people we are screening,” she said.

Mutter isn’t sure how he contracted COVID-19. He and his family have been careful about masks and social distancing — and critical of others who weren’t.

“The irony now is that we’re the ones who got sick,” said Mutter, whose wife, Gina Mutter, 54, is also ill.

Mutter knows he has a 1-in-3 chance that he got a placebo rather than one of two active treatment dosages, but he said he was willing to take that chance. His wife didn’t enroll in the trial.

“I said, there’s some risks involved. We’re taking one for the team here. I don’t think we both need to do that,” he said.

So far, Mutter has struggled with a persistent cough and lingering fatigue. He can’t tell if his infusion has been helpful, never mind whether it’s a cure.

“Just no way of telling if I got the antibodies or not,” he said. “Did I get them and that kept me out of disaster, or did I get the placebo and my own immune system did its job?”

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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Ever since Mercy Hospital went “corporate,” things just haven’t been the same — that’s what lots of locals in Fort Scott, Kansas, said when the Mercy health system shuttered the only hospital in town.

It’s been years since Catholic nuns led Mercy Hospital Fort Scott, but town historian Fred Campbell is wistful for his boyhood in the 1940s when sisters in habits walked the hallways.

“Well, I had never, ever been in a hospital. And here came these ladies in flowing robes and white bands around their faces. And I was scared to death. But it wasn’t long ’til I found that, first thing I know, they had some iced Coca-Cola. I still remember them putting their hand on my head to see if I had a fever.”

For more than 100 years, Mercy Hospital — and the nuns who started it all — cared for local people. But in recent years, Fort Scott’s economy and the hospital’s finances faltered. Campbell hoped both could survive.

“Mercy Corporation, can you stay with us longer?” he wondered.

In Chapter 4 of Season One: No Mercy, podcast host Sarah Jane Tribble carries that question to Sister Mary Roch Rocklage, the powerhouse who consolidated all the Mercy hospitals in the Midwest.

Click here to read the episode transcript.

“Where It Hurts” is a podcast collaboration between KHN and St. Louis Public Radio. Season One extends the storytelling from Sarah Jane Tribble’s award-winning series, “No Mercy.”

Subscribe to Where It Hurts on iTunes, Stitcher, Google, Spotify or Pocket Casts.

And to hear all KHN podcasts, click here.

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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During the first presidential debate of 2020, President Donald Trump touted his efforts to curb skyrocketing drug prices and declared that insulin is now “so cheap, it’s like water.” The response on social media was swift, and divided, with some people sharing pharmacy bills showing thousands of dollars they’d spent on insulin, while others boasted of newfound savings.

The next day, a self-described progressive political action committee called Change Now jumped into the fray by releasing an ad that circulated on Facebook attacking Trump and Sen. Thom Tillis (R-N.C.) on this issue.

In the 30-second ad, a North Carolina woman in her 30s explains she was diagnosed with Type 1 diabetes at age 4.

“Donald Trump and Thom Tillis opposed legislation that would lower the price of insulin and other prescription drugs,” she says. “People with diabetes can’t afford to wait for Trump and Tillis to fight for us. … We need affordable insulin now.”

(Posts sharing the quote were flagged as part of Facebook’s efforts to combat false news and misinformation on its news feed. Read more about PolitiFact’s partnership with Facebook.)

In recent years, politicians on both sides of the aisle have committed to addressing the cost of insulin. This election cycle — coinciding with a looming threat to the Affordable Care Act and millions of people losing jobs and employer-sponsored health insurance during the pandemic — the high price of prescription drugs has gained new significance.

Tillis is in one of the most heated Senate races in the country and has been repeatedly criticized by his opponent for receiving more than $400,000 in campaign contributions from the pharmaceutical and health product industries. Across the country, many voters say lowering prescription drug costs should be the top health priority for elected officials.

So, did Trump and Tillis really oppose policies that would accomplish that goal? We decided to take a closer look.

It turns out they’ve both opposed certain pieces of legislation that could have lowered the price of insulin and other prescription drugs, but they’ve also offered alternatives. The question is how aggressive those alternatives are and how many Americans would benefit from them.

Opposing the Strongest Reforms

Change Now pointed to two congressional bills to support the ad’s claim: one opposed by Trump, and the other by Tillis.

The first bill, known as H.R. 3, passed the House in December 2019, largely due to Democratic votes. It contains three main elements: decreasing out-of-pocket costs for people on Medicare, penalizing pharmaceutical companies that raise the price of drugs faster than the rate of inflation and — the most aggressive and controversial feature — allowing the federal government, which administers Medicare, to negotiate the price of certain drugs, including insulin. It also requires manufacturers to offer those agreed-on prices to private insurers, extending the benefits to a wider swath of Americans.

Stacie Dusetzina, an associate professor of health policy at Vanderbilt University School of Medicine, called it “the broadest-reaching policy that has been put forward” on drug pricing.

“While a lot of reform has focused on Medicare beneficiaries, that misses many insulin users,” Dusetzina said. “H.R. 3 does the most to affect prices for young consumers, like the woman in the ad.”

At the time, Trump vowed to veto that bill, saying the price controls it imposed “would likely undermine access to lifesaving medications” by decreasing the incentive for companies to innovate. When we checked in with the Trump campaign about the ad, a spokesperson reiterated this position, adding that the president continues to seek better legislative options.

The House bill in question, though, never made it to the president’s desk because the Senate didn’t take it up. Instead, the Senate Finance Committee proposed its own bill, which brings us to the second piece of legislation cited by Change Now.

Known as the Prescription Drug Pricing Reduction Act of 2019, the Senate bill echoes two aims of the House proposal: decreasing out-of-pocket costs for people on Medicare and putting an inflation-based cap on some drug prices.

That bill, too, stalled, with several Republican senators wary of the inflation cap. Among them was Tillis, who expressed concern that the measure could hamper innovation.

So, it’s true that Trump and Tillis have both opposed legislation that could lower the cost of insulin and other prescription drugs. But that’s not the full picture of what either politician has done on this issue.

Alternative Solutions for a Smaller Group of Americans

The Trump campaign provided a long list of actions taken by his administration to curb the high costs of medication, including a flurry of executive orders related to insulin and prescription drugs. Tillis’ campaign highlighted an alternative bill the senator co-sponsored to target drug costs. Let’s break them down one at a time.

One of Trump’s orders aims to have Federally Qualified Health Centers provide insulin and EpiPens at a discounted rate to the low-income individuals they serve. These centers, however, are already required to offer sliding-scale payments, and a full discount to patients who earn below the federal poverty line, said Rachel Sachs, an associate professor of law at Washington University in St. Louis, who tracks drug-pricing laws.

Another order deals with the importation of drugs from Canada, where they are often cheaper. Although the order specifically excludes biologic drugs, including insulin, the administration has requested proposals from private companies on how insulin could be safely brought in from other countries.

The president also issued a particularly ambitious order that seeks to tie the price Medicare pays for drugs to a lower international reference price. The Trump administration, however, hasn’t released final regulations to implement that policy, which could take years. If implemented, the policy is expected to be challenged in court by the drug industry.

Perhaps the most notable measure on insulin at the moment, experts said, is a federal demonstration project that Medicare plans can voluntarily opt into, to cap the monthly copay for insulin at $35 for some seniors. The project is slated to begin in January 2021, but its long-term future is uncertain, Sachs said, because it relies on parts of the Affordable Care Act, which could be struck down by a Supreme Court ruling later this year.

In Congress, Tillis and five other Republican senators introduced an alternative drug-pricing bill last December, called the Lower Costs, More Cures Act.

Tillis believes this is “the better option,” campaign spokesperson Andrew Romeo said, because “in addition to helping control drug prices, the legislation also seeks to preserve America’s capacity to research and develop lifesaving medications.” It includes a monthly cap on insulin copays for Medicare beneficiaries and requires manufacturers to disclose prices in consumer ads.

But experts said Tillis’ proposal is weaker than other options before the House and Senate. It doesn’t include an inflation cap, Sachs said, and the bill’s benefit would likely be limited to some seniors on Medicare, leaving out the more than 150 million Americans covered by private insurance.

Jason Roberts, an associate professor of political science at the University of North Carolina-Chapel Hill, said the bill is largely symbolic.

“Tillis is getting hit for not supporting a bill that could move,” Roberts said. “Instead, he introduces something that has no chance of going anywhere, and he knows that. But it’s a way of trying to deflect that criticism without getting a lot accomplished.”

Our Ruling

An ad sponsored by a progressive political action committee claims that Trump and Tillis have opposed legislation that would decrease the cost of insulin and other prescription drugs.

Based on the two pieces of drug-pricing legislation Change Now points to, that’s accurate. Trump and Tillis have voiced opposition to prominent bills that experts say could decrease the cost of insulin for a broad group of Americans.

However, both politicians have also proposed alternative policies to lower the price of insulin and other prescription drugs. Most of their proposals have not taken effect yet and are largely targeted at seniors.

We rate the ad’s claim Mostly True.

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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This story can be republished for free (details).

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Cuando Terry Mutter se despertó con dolor de cabeza y músculos adoloridos, el levantador de pesas amateur lo atribuyó a un entrenamiento duro.

Sin embargo, ese miércoles a la noche tuvo 101 grados de fiebre y estaba claramente enfermo. “Me sentía como si me hubiera atropellado un camión”, recuerda Mutter, que vive cerca de Seattle.

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Al día siguiente le diagnosticaron COVID-19. El sábado, el hombre de 58 años estaba inscrito en un ensayo clínico para el mismo cóctel de anticuerpos que el presidente Donald Trump afirmó que le había “curado” el coronavirus.

“Lo había escuchado en las noticias”, dijo Mutter, que se unió al ensayo del laboratorio Regeneron para probar si su combinación de dos anticuerpos artificiales puede neutralizar al virus mortal.

Mutter se enteró del estudio por medio de su cuñada, quien trabaja en el Centro de Investigación del Cáncer Fred Hutchinson de Seattle, uno de decenas de sitios de ensayos en todo el país. Es uno de los cientos de miles de estadounidenses, incluido el presidente, que se arriesgaron con terapias experimentales para tratar o prevenir COVID-19.

Pero con casi 8 millones de personas infectadas y más de 217,000 muertes por COVID en el país, muchos pacientes desconocen estas opciones o no pueden acceder a ellas. Otros desconfían de los tratamientos no probados.

“Honestamente, creo que nunca hubiera recibido una llamada si no hubiera conocido a alguien que me dijera sobre el ensayo”, dijo Mutter, ejecutivo jubilado de Boeing Co.

El sitio web Clinicaltrials.gov registra más de 3,600 estudios que involucran a COVID-19 o a SARS-CoV-2, el virus que causa la enfermedad. Más de 430,000 personas se han ofrecido como voluntarias a través de la Red de Prevención de COVID-19. Otras miles han recibido terapias, como el medicamento antiviral remdesivir, que tiene una autorización federal de emergencia.

Ante un diagnóstico grave de COVID, ¿cómo saben los pacientes o sus familias si pueden, o deben, buscar agresivamente estos tratamientos? Por el contrario, ¿cómo pueden decidir si rechazarlos o no si se los ofrecen?

Tales decisiones médicas nunca son fáciles, y son aún más difíciles durante una pandemia, dijo Annette Totten, profesora asociada de informática médica y epidemiología clínica en la Universidad de Salud y Ciencias de Oregon.

“El desafío es que la evidencia no es buena porque todo con COVID es nuevo”, dijo Totten, quien se especializa en la toma de decisiones médicas.

Es comprensible que a los consumidores los haya afectado la información contradictoria sobre posibles tratamientos para COVID por parte de líderes políticos, incluido Trump, y la comunidad científica.

El fármaco contra la malaria hidroxicloroquina, promocionado por el presidente, recibió una autorización de emergencia de la Administración de Drogas y Alimentos (FDA), solo para que la decisión se revocara varias semanas después por temor a que causara daño.

El plasma convalescente, que utiliza hemoderivados de personas recuperadas de COVID-19 para tratar a las que aún están enfermas, se administró a más de 100,000 pacientes en un programa de acceso ampliado y se puso a disposición de todos a través de otra autorización de emergencia, aunque los científicos no están seguros de sus beneficios.

Regeneron y la empresa farmacéutica Eli Lilly and Co. han solicitado autorización de uso de emergencia para sus terapias con anticuerpos monoclonales, incluso cuando los científicos dicen que esto podría poner en peligro la inscripción en los ensayos que probarán si funcionan, o cuán bien funcionan.

Hasta ahora, unas 2,500 personas se han inscrito en los ensayos de Regeneron, y, de ellas, unas 2,000 reciben la terapia, dijo un vocero de la compañía. Otras han recibido el tratamiento a través de los llamados programas de uso compasivo, aunque la empresa no dijo cuántas.

La semana del 12 de octubre, los Institutos Nacionales de Salud detuvieron el ensayo de anticuerpos de Lilly después que una junta de monitoreo independiente planteara preocupaciones de seguridad.

“Con toda la información dando vueltas en los medios, es difícil para los pacientes tomar buenas decisiones, y para los médicos tomar esas decisiones”, dijo el doctor Benjamin Rome, internista e investigador de políticas de salud en el programa Portal de la Escuela de Medicina de Harvard.

Aun así, las personas que enfrentan COVID no deberían tener miedo de preguntar si tienen opciones de tratamiento disponibles, agregó Rome. “Como médico, no me importa cuando los pacientes preguntan”, dijo.

Los pacientes y las familias deben comprender cuáles podrían ser las implicaciones de esos tratamientos, aconsejó Totten. Los primeros ensayos clínicos de fase 1 se centran principalmente en la seguridad, mientras que los ensayos más amplios de fase 2 y fase 3 determinan la eficacia. Cualquier tratamiento experimental plantea la posibilidad de efectos secundarios graves.

Idealmente, los proveedores de atención médica proporcionarían la información sobre tratamientos y riesgos sin previo aviso. Pero durante una pandemia, y especialmente en un entorno de mucho estrés, es posible que no lo hagan, observó Totten.

“Es importante ser insistente”, dijo. “Y Volver a preguntar. A veces tienes que estar dispuesto a ser un poco agresivo”, sugirió.

Los pacientes y las familias deben tomar nota o grabar las conversaciones para su posterior revisión. Deberían preguntar sobre la compensación económica por participar. A muchos pacientes en los ensayos de COVID-19 se les paga cantidades modestas por su tiempo y viajes.

Y deberían pensar en cómo encaja cualquier tratamiento en su sistema más amplio de valores y objetivos, dijo Angie Fagerlin, profesora y directora del departamento de ciencias de la salud de la población de la Universidad de Utah.

“¿Cuáles son los pros y los contras?”, se preguntó Fagerlin. Una consideración puede ser el beneficio para la sociedad en general, no solo para el paciente, dijo.

Para Mutter, ayudar al avance de la ciencia fue una gran razón por la que aceptó inscribirse en el ensayo de Regeneron.

“Me interesó para que la terapéutica avanzara, necesitan personas”, dijo. “En un momento en el que hay tantas cosas que no podemos controlar, ésta sería una forma de encontrar algún tipo de solución”.

Esto fue lo que impulsó a Fred Hutch, que participa en dos ensayos de Regeneron, uno para la prevención de COVID-19 y otro para el tratamiento de la enfermedad.

“Fue una visita de seis horas”, dijo. “Son dos horas para recibir la infusión. Es un goteo intravenoso muy lento”.

Mutter fue la segunda persona inscrita en el ensayo de Fred Hutch, dijo la doctora Shelly Karuna, co-investigadora principal. El estudio está probando dosis altas y bajas del cóctel de anticuerpos monoclonales frente a un placebo.

“Me sorprende el profundo altruismo de las personas a las que estamos evaluando”, dijo.

Mutter no está seguro de cómo contrajo COVID-19. Él y su familia han tenido cuidado con las máscaras y el distanciamiento social, y han criticado a otros que no.

“La ironía ahora es que fuimos nosotros los que nos enfermamos”, dijo Mutter, cuya esposa, Gina Mutter, de 54 años, también tiene COVID.

Mutter sabe que tiene una probabilidad de 1 en 3 de recibir un placebo en lugar de una de las dos dosis de tratamiento activo, pero dijo que estaba dispuesto a correr ese riesgo. Su esposa no se inscribió.

“Dije, hay algunos riesgos involucrados. Uno de nosotros puede tomar el riesgo, no los dos”, dijo.

Hasta ahora, Mutter ha luchado contra una tos y fatiga persistente. No puede decir si su infusión ha sido útil.

“Simplemente no hay forma de saber si tengo los anticuerpos o no”, dijo. “¿Los obtuve y eso me mantuvo fuera del desastre?, ¿o tuve el placebo y mi propio sistema inmunológico hizo su trabajo?”.

LONE TREE, Colo. — Darcy Velasquez, 42, and her mother, Roberta Truax, were walking recently in the Park Meadows mall about 15 miles south of downtown Denver, looking for Christmas gifts for Velasquez’s two children, when they spotted a store with a display of rhinestone-studded masks.

It’s an immutable truth of fashion: Sparkles can go a long way with a 9-year-old.

The store is called COVID-19 Essentials. And it may well be the country’s first retail chain dedicated solely to an infectious disease.

With many U.S. stores closing during the coronavirus pandemic, especially inside malls, the owners of this chain have seized on the empty space, as well as the world’s growing acceptance that wearing masks is a reality that may last well into 2021, if not longer. Masks have evolved from a utilitarian, anything-you-can-find-that-works product into another way to express one’s personality, political leanings or sports fandom.

And the owners of COVID-19 Essentials are betting that Americans are willing to put their money where their mouth is. Prices range from $19.99 for a simple children’s mask to $130 for the top-of-the-line face covering, with an N95 filter and a battery-powered fan.

The COVID-19 Essentials chain recognizes that mask-wearing is more than a temporary inconvenience — it may become the norm well into 2021, or longer. (Markian Hawryluk/KHN)

Almost all shops and many pop-up kiosks in the Park Meadows mall now sell masks. But COVID-19 Essentials also carries other accessories for the pandemic, in a space that has a more established feel than a holiday pop-up store; permanent signage above its glass doors includes a stylized image of a coronavirus particle. Nestled beside the UNTUCKit shirt store and across from a Tesla showroom, it has neither the brand recognition nor the track record of a J.C. Penney. But longevity doesn’t seem to have helped that clothing chain or many others escape industry upheaval during the pandemic. According to analysts at S&P Global Market Intelligence, retail bankruptcies from January to mid-August reached a 10-year-high.

Not that the COVID-19 Essentials owners want their products to be in demand forever.

“I can’t wait to go out of business eventually,” said Nadav Benimetzky, a Miami retailer who founded COVID-19 Essentials, which now has eight locations around the country.

That seemed to be the attitude of most of the customers who walked into the store on a recent Friday afternoon. Most understood the need for masks — face coverings are required to even enter the mall — and thus they recognized the business case for a COVID-19 store. Still, they hoped masks would soon go the way of bell-bottoms or leg warmers. For the time being, they’re making the best of the situation.

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Nathan Chen, who owns the Lone Tree store with Benimetzky, previously ran a different store at the Denver airport, but as air travel declined, a COVID-focused business seemed a much better venture. The pandemic giveth and the pandemic taketh away.

Benimetzky opened the first COVID-19 Essentials store in the Aventura Mall in suburban Miami after seeing the demand for N95 masks early in the pandemic. “They’re ugly and uncomfortable, and everybody hates them,” he said. “I piggybacked off of that. If you’re going to wear a mask, you might as well make it fashionable and pretty.”

Face masks have evolved from a utilitarian product into a customized accessory for personal expression. (Markian Hawryluk/KHN)

That could mean a sequin or satin mask for more formal occasions, or the toothy grin of a skull mask for casual affairs. Some masks have zippers to make eating easier, or a hole for a straw, with a Velcro closure for when the cup is sucked dry.

The chain has locations in New York City, New Jersey, Philadelphia and Las Vegas, and is looking to open stores in California, where wildfires have only added to the demand for masks.

Initially, the owners really weren’t sure the idea would fly. They opened the first store just as malls were reopening following the lockdowns.

“We really didn’t grasp how big it would get,” Benimetzky said. “We didn’t go into it with the idea of opening many stores. But we got busy from the second we opened.”

Nancy Caeti, 76, stopped in the Lone Tree store to buy masks for her grandchildren. She bought one with a clear panel for her granddaughter, whose sign language instructor needs to see her lips moving. She bought her daughter, a music teacher and Denver Broncos fan, a mask with the football team’s logo.

“I lived through the polio epidemic,” Caeti said, as her latex-gloved hand inserted her credit card into the card reader. “It reminds me of that, but that I don’t think was as bad.” She recalled how her mother had lined her and her siblings up to get the polio vaccine, and said she’d be first in line for a COVID shot.

That perhaps is the one essential the store does not carry. It hawks keylike devices for opening doors and pressing elevator buttons without touching them. Some have a built-in bottle opener. There are ultraviolet-light devices for disinfecting phones and upscale hand sanitizer that employees spray on customers as if it were a department store perfume sample.

But the masks are the biggest draw. The store can personalize them with rhinestone letters or the kind of iron-on patches that teens once wore on their jeans.

A COVID-19 Essentials employee decorates a face mask with rhinestone letters, spelling U-S-A. (Markian Hawryluk/KHN)

Upon entry, customers can check their temperature with a digital forehead scanner with audible directions: “Step closer. Step closer. Temperature normal. Temperature normal.”

The store also has added a sink near the entrance so customers can wash their hands before handling the merchandise.

Some mallgoers walk by the store in bewilderment, stopping to take photos to post to social media with a you’ve-got-to-be-kidding message. One older white couple in matching masks noticed a mask emblazoned with the slogan “Black Lives Matter” in the storefront display, and walked away in disgust.

The store takes no political sides; there are three designs of President Donald Trump campaign masks, two for Democratic presidential candidate and former Vice President Joe Biden. One woman, who declined to give her name, came in wearing a mask below her nose and wondered whether a Trump mask would fit her smallish face. The Trump masks are among the more popular sellers, Chen said, so he keeps them in a bigger cabinet to accommodate the extra stock. It’s not clear if that will forecast the election results, as some have posited with Halloween mask sales.

Daniel Gurule, 31, stopped by the mall on his lunch hour to pick up an Apple Watch but ventured into the store for a new mask. He said that he normally wore a vented mask but that not all places allowed those. (They protect users but not the people around them.) He bought a $24.99 mask with the logo of the Denver Nuggets basketball team.

“It takes away a little bit of our personalities when everybody is walking around in disposable masks,” Chen said. “It kind of looks like a hospital, like everybody is sick.”

Most of the masks are sewn specifically for the chain, including many by hand. One of their suppliers is a family of Vietnamese immigrants who sew masks at their Los Angeles home, Benimetzky said. Chen said that it was hard to keep masks in stock, and that every day it seemed some other design became their best seller.

COVID-19 Essentials sells keylike devices to open doors and press elevator buttons without touching them. Some even have built-in bottle openers. (Markian Hawryluk/KHN)

Dorothy Lovett, 80, paused outside the store, leaning on a cane with an animal print design.

“I had to back up and say, ‘What the heck is this?’” she said. “I’ve never seen a mask store before.”

She perused the display case, noting she needed to find a better option than the cloth version she was wearing.

“I can’t breathe in this one,” said Lovett, who is white, before deciding on her favorite. “I like the Black Lives Matter mask.”

During last week’s vice presidential debate, moderator Susan Page, USA Today’s Washington bureau chief, asked Vice President Mike Pence about the U.S. COVID-19 death toll. Pence replied by touting the Trump administration’s actions to combat the pandemic, such as restrictions on travel from China, steps to expand testing and efforts to accelerate the production of a vaccine.

Pence also took a jab at Democratic presidential nominee Joe Biden, a strong critic of the Trump pandemic response. “The reality is, when you look at the Biden plan, it reads an awful lot like what President Trump and I and our task force have been doing every step of the way,” said Pence. “And, quite frankly, when I look at their plan,” he added, “it looks a little bit like plagiarism, which is something Joe Biden knows a little bit about.”

(Pence’s gibe about plagiarism is likely a reference to Biden copying phrases from a British politician’s speeches during his first run for president in 1987, an issue that caused him to drop out of the race. In 2019, the Biden campaign acknowledged it had inadvertently lifted language in its climate and education plans without attributing the sources.)

Because COVID-19 continues to spread throughout the United States, with nearly 8 million cases and upward of 215,000 deaths, we decided to examine both the Trump and Biden plans to curb the pandemic and investigate whether Pence was on target in his charge that the Biden plan is rooted in Trump’s ideas.

We reached out to both presidential campaigns for their candidates’ COVID-19 plans. The Trump campaign did not respond to our request, but we looked at a campaign website timeline of administration actions on COVID-19, as well as a coronavirus fact sheet from the White House. The Biden campaign sent us a link to Biden’s COVID-19 plan.

At first glance, there are obvious similarities. Both declare goals like vaccine development and expanding public availability of COVID-19 tests.

“Most pandemic response plans should be at their core fairly similar, if they’re well executed,” said Nicolette Louissaint, executive director of Healthcare Ready, a nonprofit organization focused on strengthening the U.S. health care supply chain.

But public health experts also pointed to significant philosophical differences in how the plans are put into action.

“You ought to think about it as two groups of people trying to make a car,” said Dr. Georges Benjamin, executive director of the American Public Health Association. “They have to have four wheels, probably have to have a bumper, have some doors,” he said. It is how you build the car from that point forward that determines what the end product looks like.

What Trump Has Done

As Pence pointed out, the Trump administration has focused its efforts to combat COVID-19 along a couple of lines.

The administration formed the White House coronavirus task force in January and issued travel restrictions for some people traveling from China and other countries in February. Federal social distancing guidelines were issued in March and expired on April 30. The administration launched Operation Warp Speed in April, with the goal of producing and delivering 300 million doses of a coronavirus vaccine beginning in January 2021. A more detailed logistics plan to distribute a vaccine was issued later. Trump activated the Defense Production Act for certain protective equipment and ventilators. His administration also has talked about efforts to expand COVID-19 testing in partnership with the private sector, as well as initiatives to help cover costs for COVID-19 treatments and make tests free of charge.

Importantly, the administration also shifted significant decision-making responsibility to states, leaving the development of testing plans, procurement of personal protective equipment and decrees on stay-at-home orders and mask mandates to the discretion of the governor or local governments. Despite that, Trump still urged states to reopen beginning in May, though in many areas cases of COVID-19 remained high.

What Biden Proposes to Do

Biden’s plan would set out strong national standards for testing, contact tracing and social distancing — words that echo the Trump plan. It proposes working with states on mask mandates, establishing a “supply commander” in charge of shoring up PPE, aggressively using the Defense Production Act and accelerating vaccine development.

It also outlines plans to extend more fiscal relief, provide enhanced health insurance coverage, eliminate cost sharing for COVID treatments, reestablish a team on the National Security Council to address pandemic response and to maintain membership inthe World Health Organization. Trump announced earlier this summer that the U.S. would begin procedures to withdraw from the WHO, effective as of July 6, 2021.

Biden has said he would follow scientific advice if indicators pointed to a need to dial up social distancing guidelines in light of another wave of COVID-19 cases.

What’s the Same, What’s Different

Dr. Rachel Vreeman, director of the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, noted in an email that a key likeness is that the two plans “sometimes used similar words, such as testing, PPE and vaccines.”

But “the overall philosophy from the start, from the White House and from Trump, has been to let states and local governments deal with this problem,” said Josh Michaud, associate director for global health policy at KFF. “Biden would have a much more forceful role for the federal government in setting strategy and guidelines in regards to the public health response.” (KHN is an editorially independent program of KFF.)

Even Pence pointed out this philosophical difference during the debate, saying that Democrats want to exert government control while Trump and Republicans left health choices up to individual Americans.

Vreeman and others pointed to another contrast — that the Trump administration has yet to issue a comprehensive COVID-19 response plan.

“What plan? I would really love it if someone could show me a plan. A press release is not a plan,” said Dr. Leana Wen, a public health professor at George Washington University.

Wen is right that the Trump administration has not issued a detailed plan, such as Biden’s document. The Trump administration has, however, offered a road map for how vaccines would be distributed.

Behavior Matters, Too

Another major distinction emerged in the way the candidates have communicated the threat of the coronavirus to the public and reacted to public health guidelines, such as those issued by the Centers for Disease Control and Prevention.

During most public outings and campaign rallies, Trump has chosen not to wear a mask — even after he tested positive and was treated for COVID-19. He has been known to mock others, including reporters and Biden, for wearing masks. And, Trump and members of his administration have not adhered to social distancing guidelines at official events. The White House indoor reception and outdoor Rose Garden event held to mark the nomination of Amy Coney Barrett to the Supreme Court – at each one, few attendees followed these precautions – have been associated with the transmission of at least 11 cases of coronavirus, according to a website tracking the cases from public reports. There are also multiple reported cases among White House and Trump campaign staff members.

Throughout the pandemic, Trump has downplayed the threat of COVID-19, touted unproven treatments for the disease such as bleach, hydroxychloroquine or UV light, questioned the effectiveness of face masks and criticized or contradicted public health officials’ statements about the pandemic.

In comparison, Biden has worn masks during his public campaign events and has encouraged Americans to do so as well. His events strictly adhere to public health guidelines, including wearing masks, social distancing and limiting the number of attendees.

The two candidates’ approaches to listening to scientists are also different.

“Biden has said he is going to look at science and value the best scientists,” said Benjamin. “The Trump administration has not walked the talk; they have said one thing and done something else. If you go on the Trump administration website, you see guidelines that they didn’t follow themselves.”

In the end, the Biden campaign has the distinction of being able to learn from the Trump administration’s early missteps, said the experts.

There’s also a reality check: if Biden wins and attempts to implement his COVID-19 plan, it’s important to consider that no matter how well thought out it looks on paper, he may not be able to accomplish everything.

“There’s a lot of words in this plan,” said Joseph Antos, a resident scholar in health care policy at the American Enterprise Institute. “But until you’re in the job, a lot of this doesn’t really matter.”

Our Ruling

Pence claimed the Biden plan to address COVID-19 was similar to the Trump administration’s plan “every step of the way.”

A cursory, side-by-side look at the Trump administration’s COVID-19 actions — no actual comprehensive plan has been released — and the Biden plan indicates some big picture overlap on securing a vaccine and ramping up testing. But that’s where the similarities end.

Biden’s plan includes proposed actions the Trump administration has not pursued. It also is focused on federal rather than state authority, a significant distinction Pence himself pointed out during the debate.

Additionally, the candidates’ behaviors toward COVID-19 and views on science have been diametrically opposed, with Trump eschewing the use of face masks and social distancing, and Biden closely adhering to both.

Pence’s statement ignores critical facts and realities, making it inaccurate and ridiculous.

We rate it Pants On Fire.

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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Lone Tree, Colorado.- Darcy Velásquez, de 42 años, y su madre, Roberta Truax, caminaban recientemente por el centro comercial Park Meadows, 15 millas al sur del centro de Denver, buscando regalos de Navidad para los dos hijos de Velásquez, cuando vieron una tienda con un exhibición de máscaras faciales adornadas con diamantes de fantasía.

Brillantes ideales para una nena de 9 años.

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La tienda se llama COVID-19 Essentials. Y bien puede ser la primera cadena minorista del país dedicada exclusivamente a una enfermedad infecciosa.

Con el cierre de muchas tiendas en los Estados Unidos durante la pandemia de coronavirus, especialmente dentro de los centros comerciales, los propietarios de esta cadena han sacado provecho del espacio vacío, así como de la creciente aceptación de que usar máscaras es una realidad que puede durar hasta 2021, o más.

Las máscaras faciales han evolucionado de ser un producto utilitario, cualquier cosa podía servir para taparte la boca, a una forma de expresar la personalidad, las inclinaciones políticas o el fanatismo deportivo.

Y los propietarios de COVID-19 Essentials están apostando a que los estadounidenses están dispuestos a poner dinero en sus bocas. Los precios van desde $19,99 por una simple máscara para niños hasta $130 por una cubierta facial con un filtro N95 y un ventilador a batería.

La cadena COVID-19 Essentials reconoce que la máscara ya es algo más que un inconveniente temporal. Será la norma hasta 2021, y tal vez más allá. (MARKIAN HAWRYLUK/KHN)

Casi todas las tiendas en el centro comercial Park Meadows ahora venden máscaras. Pero COVID-19 Essentials también ofrece otros accesorios para la pandemia, en un espacio exclusivo:  su logo es una imagen estilizada de una partícula de coronavirus.

Ubicado junto a la tienda de remeras UNTUCKit y frente a una sala de exhibición de Tesla, no tiene el reconocimiento de marca ni el historial de un J.C. Penney. Pero la longevidad no parece haber ayudado a que la cadena de ropa o muchas otras escaparan de la crisis por la pandemia. Según los analistas de S&P Global Market Intelligence, las quiebras minoristas de enero a mediados de agosto alcanzaron su punto más alto en 10 años.

No es que los propietarios de COVID-19 Essentials quieran que sus productos tengan demanda para siempre.

“Estoy ansioso por cerrar el negocio eventualmente”, dijo Nadav Benimetzky, un minorista de Miami que fundó COVID-19 Essentials, que ahora tiene ocho tiendas en todo el país.

Nathan Chen, propietario de la tienda Lone Tree con Benimetzky, tenía un negocio diferente en el aeropuerto de Denver, pero a medida que disminuyeron los vuelos, una alternativa  centrada en COVID se perfiló como una empresa mucho mejor.

Las máscaras han pasado de ser un producto utilitario a algo personalizado, que identifica al que la usa con un partido político o un equipo de fútbol americano.(MARKIAN HAWRYLUK/KHN)

Benimetzky abrió la primera tienda COVID-19 Essentials en el Aventura Mall en los suburbios de Miami después de ver la demanda de máscaras N95 al principio de la pandemia. “Son feas e incómodas, y todo el mundo las odia”, dijo. “Si vas a usar una máscara, también puede estar a la moda y ser bonita”.

Eso podría significar una máscara de lentejuelas o satén para ocasiones más formales, o la sonrisa de una calavera para asuntos casuales. Algunos cubrebocas tienen cremalleras para facilitar la alimentación, o un orificio para una pajita, con cierre de velcro.

La cadena tiene tiendas en la ciudad de Nueva York, Nueva Jersey, Philadelphia y Las Vegas, y está buscando abrir otras en California, donde los incendios forestales han aumentado la demanda de máscaras.

Inicialmente, los propietarios realmente no estaban seguros de que la idea funcionara. Abrieron la primera tienda justo cuando los centros comerciales volvían a abrir después de las cuarentenas.

“Realmente no comprendimos qué tan grande sería”, dijo Benimetzky. “No lo analizamos con la idea de abrir muchas tiendas. Pero hemos estado ocupados desde el momento en que abrimos “.

Un empleado de COVID-19 Essentials decora una máscara con la palabra USA en piedras preciosas de fantasía.(MARKIAN HAWRYLUK/KHN)

Nancy Caeti, de 76 años, se detuvo en la tienda Lone Tree para comprar máscaras para sus nietos. Compró una transparente para su nieta, cuyo instructor de lenguaje de señas necesita ver sus labios moverse. Le compró a su hija, profesora de música y fanática de los Denver Broncos, una máscara con el logo del equipo de fútbol americano.

“Sobreviví a la epidemia de polio”, contó Caeti. Recordó cómo su madre los puso en fila a ella y a sus hermanos para recibir la vacuna contra la polio, y dijo que ella sería la primera en la fila para recibir la vacuna para COVID.

Ese quizás sea el único “básico” que la tienda no vende. Pero tiene dispositivos similares a llaves para abrir puertas y presionar botones de ascensores sin tocarlos. Algunos tienen un abridor de botellas incorporado. Hay dispositivos de luz ultravioleta para desinfectar teléfonos y un desinfectante de manos exclusivo que los empleados rocían a los clientes como si fuera una muestra de perfume.

Pero las máscaras son el mayor atractivo porque la tienda las puede personalizar.

Al entrar, los clientes pueden verificar su temperatura con un escáner de frente digital con instrucciones audibles: “Acérquese. Acércate. Temperatura normal. Temperatura normal”.

La tienda también ha agregado un fregadero cerca de la entrada para que los clientes puedan lavarse las manos antes de tocar los productos.

Algunos pasan por la tienda desconcertados, deteniéndose para tomar fotos y publicarlas en las redes sociales. Una pareja mayor (blanca no hispana) con máscaras idénticas observó una máscara en el negocio con el lema “Black Lives Matter” y se alejó.

El negocio no toma partido politico: hay tres diseños de máscaras del presidente Donald Trump, y dos para el candidato presidencial demócrata Joe Biden.

COVID-19 Essentials vende dispositivos parecidos a llaves que sirven para abrir puertas y tocar el botón de los elevadores “a distancia”. (MARKIAN HAWRYLUK/KHN)

Daniel Gurule, de 31 años, pasó por el centro comercial a la hora del almuerzo para comprar un Apple Watch, pero se aventuró a entrar en la tienda por una nueva máscara. Dijo que normalmente usaba una máscara con ventilación, pero que no todos los lugares las permiten. (Protegen a los usuarios, pero no a las personas que los rodean). Compró una por $24,99 con el logo del equipo de baloncesto Denver Nuggets.

“Nos quita un poco de nuestra personalidad cuando todo el mundo camina con máscaras desechables”, dijo Chen. “Parece un hospital, como si todo el mundo estuviera enfermo”.

La mayoría de las máscaras están cosidas específicamente para la cadena, incluidas muchas hechas a mano. Uno de sus proveedores es una familia de inmigrantes vietnamitas que cosen máscaras en su casa de Los Ángeles, dijo Benimetzky.

Chen dijo que era difícil tener máscaras en stock y que todos los días hay un nuevo diseño que es éxito de ventas.

Dorothy Lovett, de 80 años, se detuvo frente a la tienda, apoyada en un bastón con un diseño de estampado animal. “Tuve que retroceder y decir, ‘¿Qué diablos es esto?’”, dijo. “Nunca antes había visto una tienda de máscaras”.

Examinó la vitrina, notando que necesitaba encontrar una mejor opción que la versión de tela que estaba usando.

“No puedo respirar con ésta”, dijo Lovett, antes de decidirse por su favorita. “Me gusta la máscara Black Lives Matter”.

PETALUMA, Calif. — Late on the night of Sept. 27, a bumper-to-bumper caravan of fleeing cars, horse trailers, RVs and overstuffed pickup trucks snaked east on Highway 12, the flames of the Glass Fire glowing orange in their rearview mirrors.

With her cat, Bodhi, in his carrier in the back seat, 80-year-old Diana Dimas, who doesn’t see well at night, kept her eyes glued to the rear lights of her neighbor’s Toyota. She and Magdalena Mulay had met a few years before at a bingo night in their sprawling retirement community on the outskirts of Santa Rosa. Both Libras, each with two marriages behind her, the two women soon became the sort of friends who finish each other’s sentences.

Now, for the second time in three years, they heard the alarms and fled together as fire consumed the golden hills of Northern California’s wine country.

“I thought, where on earth are we going to go?” recalled Dimas. She remembered that when the catastrophic Tubbs Fire hit in 2017, people had sought refuge outside well-lit supermarkets, which had water and bathrooms. Which is how Dimas and Mulay and dozens of other seniors ended up spending the night of the most recent evacuation in the parking lot of the Sonoma Safeway.

At midnight, Mulay was trying to get comfortable enough to catch a few winks in her driver’s seat when her phone began to chirp. A friend was calling to wish her a happy 74th birthday.

The stories of that Sunday night — as a 20-acre fire started that morning merged with two other fires to become an 11,000-acre conflagration forcing tens of thousands from their homes in two counties — spotlight the challenges of evacuating elderly and infirm residents from the deadly wildfires that have become an annual occurrence in California. This year, the coronavirus, which is especially dangerous to the elderly, has further complicated the problem.

While the 2020 fire season will go down as the state’s biggest on record, rescuers have so far managed to avoid horrors on the scale of three years ago, when the firestorm that raced through California’s wine country killed 45 people. Almost all were over 65 — found in wheelchairs, trapped in their garages, isolated and hard of hearing, or simply too stubborn to leave. The same grim pattern emerged from the Camp Fire, which leveled the Northern California town of Paradise in 2018.

Assisted care homes in particular came under scrutiny after the 2017 fire, when ill-equipped and untrained workers at two Santa Rosa facilities abandoned two dozen frail, elderly residents as the flames closed in, according to state investigators. They concluded the seniors would have died in the flames had emergency workers and relatives not arrived at the last minute to rescue them.

“The problem is we don’t value elders as a society,” said Debbie Toth, CEO of Choice in Aging, an advocacy group. “If children needed to be evacuated, we’d have a freaking Romper Room stood up overnight to entertain them so they wouldn’t be damaged by the experience.”

The destructive effects of climate change in California have dovetailed with a rapidly graying population — which in a decade is projected to include 8.6 million senior citizens. That has fueled a growing demand for senior housing, from assisted care homes to swanky “active adult” facilities complete with golf courses and pools.

Proximity to nature is a major selling point of Oakmont Village, Dimas and Mulay’s upscale community of nearly 5,000 over-55s, which has everything from bridge games to cannabis clubs. But the woodlands and vineyards surrounding this suburban sprawl have put thousands of elderly citizens in hazardous wildfire zones.

“With seniors, there’s mobility issues, hearing issues — even the sense of smell is often gone in the later years,” said Marrianne McBride, who heads Sonoma County’s Council on Aging. Getting out fast in an emergency is especially challenging for those who no longer drive. In Sunday’s evacuation, some residents who followed official advice to call ride services had to wait hours, until 3 or 4 a.m., for the overtaxed vans.

Dimas and Mulay managed to scramble into their cars and get on the road shortly after 10 p.m., when a mandatory evacuation order went out for the thousands of seniors in Oakmont Village. But it was after midnight when residents of two Santa Rosa assisted care homes in the evacuation zone were shuffled onto city buses in their bathrobes, some with the aid of walkers. Off-duty drivers braved thick smoke and falling embers to ferry some of them to safety, only to spend hours being sent from one shelter to another as evacuation sites filled up fast because of social distancing rules designed to prevent the spread of COVID-19.

Other precautions, including masks and temperature checks, were followed. But health officials nonetheless voiced concerns that vulnerable people in their 80s and 90s — especially residents of skilled nursing homes, the source of most of Sonoma County’s coronavirus deaths so far — had been moved among multiple locations, upping their chance for exposure.

In the following days, shelters were fielding frantic calls from out-of-town relatives searching for their loved ones. “We were getting phone calls from Michigan, other places across the country, saying, ‘I’m trying to find my mother!’” said Allison Keaney, CEO of the Sonoma-Marin Fairgrounds, which sheltered several hundred horses, chickens, goats and llamas as well as displaced people.

By Wednesday afternoon, a few dozen evacuees remained at the shelters, mostly seniors without relatives or friends nearby to take them in, like Dimas and Mulay. The two women had left the Safeway lot and were sleeping on folding cots in a gym at the Veterans Memorial Building in Petaluma, an old poultry industry town dotted with upscale subdivisions.

This was their first time out and around other people since March, when the two friends had been planning a big night out to see Il Volo, an Italian pop group. Seven months later, the new outfits they bought for the concert still hang unworn in their closets.

“All we do since the shutdown is stay home and talk on the phone,” said Mulay, who spoke to a reporter while sitting next to her friend on a folding chair outside the shelter. “Now, with all these crowds — it’s terrifying.”

Dimas likened the pandemic followed by the fires to “a ball rolling downhill, getting bigger and bigger. And then there we were, with the flashing lights all around us and the cops shouting, ‘Go this way!’ ‘Keep moving!’”

Listos California — an outreach program, for seniors and other vulnerable people, run out of the Governor’s Office of Emergency Services — allotted $50 million to engage dozens of nonprofits and community groups around the state to help warn and locate people during disasters. (“Listos” means “ready” in Spanish.)

In Sonoma and Napa counties, where the Glass Fire had destroyed at least 630 structures by late last week, the bolstered threat of wildfires in recent years has promoted new alert systems — including a weather radio that has strobe lights for the deaf or can shake the bed to awaken you.

But while counties are legally responsible for alerting people and providing shelter for them once they’re out, no public agency is responsible for overseeing the evacuation. Practices differ widely by county, said Listos co-director Karen Baker.

If Sonoma County has learned anything from the disasters of the past few years, it’s not to depend too much on any system in an emergency. “You’ve got to have a neighborhood network,” McBride said. “As community members, we have to rely on each other when these things happen.”

Early last week, word filtered through the shelters that the fire had consumed a triplex and two single-family homes in the Oakmont neighborhood, but firefighters had battled the blaze through the night with hoses, shovels and chainsaws and miraculously managed to save the rest of the community.

A week later, to their relief, Oakmont’s senior residents were allowed to return home. By then, Mulay had developed severe back pain. Dimas missed her TV.

Back in her apartment with Bodhi, Dimas noted with horror that the blaze had come close enough to her building to incinerate several juniper bushes and scorch a redwood just 2 feet away.

“The whole thing feels surreal, like, ‘Oh, my God, did that really happen, or did I dream it?’” she said.

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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When the coronavirus arrived in Philadelphia in March, Dr. Ala Stanford hunkered down at home with her husband and kids. A pediatric surgeon with a private practice, she has staff privileges at a few suburban Philadelphia hospitals. For weeks, most of her usual procedures and patient visits were canceled. So she found herself, like a lot of people, spending the days in her pajamas, glued to the TV.

And then, at the beginning of April, she started seeing media reports indicating that Black people were contracting the coronavirus and dying from COVID-19 at greater rates than other demographic groups.

“It just hit me like, what is going on?” said Stanford.

At the same time, she started hearing from Black friends who couldn’t get tested because they didn’t have a doctor’s referral or didn’t meet the testing criteria. In April, there were shortages of coronavirus tests in numerous locations across the country, but Stanford decided to call around to the hospitals where she works to learn more about why people were being turned away.

One explanation she heard was that a doctor had to sign on to be the “physician of record” for anyone seeking a test. In a siloed health system, it could be complicated to sort out the logistics of who would communicate test results to patients. And, in an effort to protect health care workers from being exposed to the virus, some test sites wouldn’t let people without cars simply walk up to the test site.

Stanford knew African Americans were less likely to have primary care physicians than white Americans, and more likely to rely on public transportation. She just couldn’t square all that with the disproportionate infection rates for Black people she was seeing on the news.

“All these reasons in my mind were barriers and excuses,” she said. “And, in essence, I decided in that moment we were going to test the city of Philadelphia.”

Black Philadelphians contract the coronavirus at a rate nearly twice that of their white counterparts. They also are more likely to have severe cases of the virus: African Americans make up 44% of Philadelphians but 55% of those hospitalized for COVID-19.

Black Philadelphians are more likely to work jobs that can’t be performed at home, putting them at a greater risk of exposure. In the city’s jails, sanitation and transportation departments, workers are predominantly Black, and as the pandemic progressed they contracted COVID-19 at high rates.

The increased severity of illness among African Americans may also be due in part to underlying health conditions more prevalent among Black people, but Stanford maintains that unequal access to health care is the greatest driver of the disparity.

“When an elderly funeral home director in West Philly tries to get tested and you turn him away because he doesn’t have a prescription, that has nothing to do with his hypertension, that has everything to do with your implicit bias,” she said, referring to an incident she encountered.

Before April was over, Stanford sprang into action. Her mom rented a minivan to serve as a mobile clinic, while Stanford started recruiting volunteers among the doctors, nurses and medical students in her network. She got testing kits from the diagnostic and testing company LabCorp, where she had an account through her private practice. Fueled by Stanford’s personal savings and donations collected through a GoFundMe campaign, the minivan posted up in church parking lots and open tents on busy street corners in Philadelphia.

It wasn’t long before she was facing her own logistical barriers. LabCorp asked her how she wanted to handle uninsured patients whose tests it processed.

“I said, for every person that does not have insurance, you’re gonna bill me, and I’m gonna figure out how to pay for it later,” said Stanford. “But I can’t have someone die for a test that costs $200.”

Philadelphians live-streamed themselves on social media while they got tested, and word spread. By May, it wasn’t unusual for the Black Doctors COVID-19 Consortium to test more than 350 people a day. Stanford brought the group under the umbrella of a nonprofit she already operated that offers tutoring and mentorship to youth in under-resourced schools.

Tavier Thomas found out about the group on Facebook in April. He works at a T-Mobile store, and his co-worker had tested positive. Not long after, he started feeling a bit short of breath.

“I probably touch 100 phones a day,” said Thomas, 23. “So I wanted to get tested, and I wanted to make sure the people testing me were Black.”

Many Black Americans seek out Black providers because they’ve experienced cultural indifference or mistreatment in the health system. Thomas’ preference is rooted in history, he said, pointing to times when white doctors and medical researchers have exploited Black patients. In the 19th century American South, for example, white surgeon J. Marion Sims performed experimental gynecological treatments without anesthesia on enslaved Black women. Perhaps the most notorious example began in the 1930s, when the United States government enrolled Black men with syphilis in a study at Tuskegee Institute, to see what would happen when the disease went untreated for years. The patients did not consent to the terms of the study and were not offered treatment, even when an effective one became widely available.

“They just watched them die of the disease,” said Thomas, of the Tuskegee experiments.

“So, to be truthful, when, like, new diseases drop? I’m a little weird about the mainstream testing me, or sticking anything in me.”

In April, Thomas tested positive for the coronavirus but recovered quickly. He returned recently to be tested again by Stanford’s group, even though the testing site that day was in a church parking lot in Darby, Pennsylvania, a solid 30-minute drive from where he lives.

Thomas said the second test was just for safety, because he lives with his grandfather and doesn’t want to risk infecting him. He also brought along his brother, McKenzie Johnson. Johnson lives in neighboring Delaware but said it was hard to get tested there without an appointment, and without health insurance. It was his first time being swabbed.

“It’s not as bad as I thought it was gonna be,” he joked afterward. “You cry a little bit — they search in your soul a little bit — but, naw, it’s fine.”

Each time it offers tests, the consortium sets up what amounts to an outdoor mini-hospital, complete with office supplies, printers and shredders. When they do antibody tests, they need to power their centrifuges. Those costs, plus the lab processing fee of $225 per test and compensation for 15-30 staff members, amounts to roughly $25,000 per day, by Stanford’s estimate.

“Sometimes you get reimbursed and sometimes you don’t,” she said. “It’s not an inexpensive operation at all.”

After its first few months, the consortium came to the attention of Philadelphia city leaders, who gave the group about $1 million in funding. The group also attracted funding from foundations and individuals. The regional transportation authority hired the group to test its front-line transit workers weekly.

To date, the Black Doctors COVID-19 Consortium has tested more than 10,000 people — and Stanford is the “doctor on record” for each of them. She appreciates the financial support from the local government agencies but still worries that the city, and Philadelphia’s well-resourced hospital systems, aren’t being proactive enough on their own. In July, wait times for results from national commercial labs like LabCorp sometimes stretched past two weeks. The delays rendered the work of the consortium’s testing sites essentially worthless, unless a person agreed to isolate completely while awaiting the results. Meanwhile, at the major Philadelphia-area hospitals, doctors could get results within hours, using their in-house processing labs. Stanford called on the local health systems to share their testing technology with the surrounding community, but she said she was told it was logistically impossible.

“Unfortunately, the value put on some of our poorest areas is not demonstrated,” Stanford said. “It’s not shown that those folks matter enough. That’s my opinion. They matter to me. That’s what keeps me going.”

Now, Stanford is working with Philadelphia’s health commissioner, trying to create a rotating schedule wherein each of the city’s health systems would offer free testing one day per week, from 9 a.m. to 9 p.m.

The medical infrastructure she has set up, Stanford said, and its popularity in the Black community, makes her group a likely candidate to help distribute a coronavirus vaccine when one becomes available. Representatives from the U.S. Department of Health and Human Services visited one of her consortium’s testing sites, to evaluate the potential for the group to pivot to vaccinations.

Overall, Stanford said she is happy to help out during the planning phases to make sure the most vulnerable Philadelphians can access the vaccine. However, she is distrustful of the federal oversight involved in vetting an eventual coronavirus vaccine. She said there are still too many unanswered questions about the process, and too many other instances of the Trump administration putting political pressure on the Centers for Disease Control and Prevention and the Food and Drug Administration, for her to commit now to doing actual vaccinations in Philadelphia’s neighborhoods.

“When the time comes, we’ll be ready,” she said. “But it’s not today.”

This story is part of a partnership that includes WHYY, NPR and KHN.

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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This story can be republished for free (details).