People with ALS often must quit their jobs and sometimes their spouses do, too, to provide care, leaving families in financial distress.

This article was published on Thursday, January 21, 2021 in Kaiser Health News.

By Michelle Andrews

Anita Baron first noticed something was wrong in August 2018, when she began to drool. Her dentist chalked it up to a problem with her jaw. Then her speech became slurred. She managed to keep her company, which offers financing to small businesses, going, but work became increasingly difficult as her speech worsened. Finally, nine months, four neurologists and countless tests later, Baron, now 66, got a diagnosis: amyotrophic lateral sclerosis.

ALS, often called Lou Gehrig’s disease after the New York Yankees first baseman who died of it in 1941, destroys motor neurons, causing people to lose control of their limbs, their speech and, ultimately, their ability to breathe. It’s usually fatal in two to five years.

People with ALS often must quit their jobs and sometimes their spouses do, too, to provide care, leaving families in financial distress. A decade-long campaign by advocates highlighting this predicament notched a victory last month when Congress passed a bill opening key support programs earlier for ALS patients.

In late December, then-President Donald Trump signed the bill into law. It eliminates for ALS patients the required five-month waiting period to begin receiving benefits under the Social Security Disability Insurance program, which replaces at least part of a disabled worker’s income. Gaining SSDI also gives these patients immediate access to Medicare health coverage.

Advocacy groups note that the Social Security Administration still will need to set up procedures for implementing the law, before patients will see the benefits.

The Muscular Dystrophy Association, an umbrella organization for people with 43 neuromuscular conditions, partnered with other ALS groups to support the bill to eliminate the SSDI waiting period.

“We’re hopeful that it can serve as a model for other conditions that may be similarly situated,” said Brittany Johnson Hernandez, senior director of policy and advocacy at MDA.

In the weeks leading up to the passage of the bill, Sen. Mike Lee (R-Utah) sought to broaden the scope of the legislation to include other conditions. He pledged to continue to work on legislation to eliminate the SSDI waiting period for additional diseases that meet certain criteria, including those with no known cure and a life expectancy of less than five years.

Eliminating the SSDI waiting period has been a top priority for ALS advocates. There is no simple, single test or scan to confirm that someone has ALS, though symptoms can escalate rapidly. By the time people finally get the diagnosis, they are often already seriously disabled and unable to work. Waiting five months longer for financial aid can be a burden, according to patients and families.

“Five months may seem like a short period of time, but for someone with ALS it matters,” said Danielle Carnival, CEO of I Am ALS, an advocacy group. “It’s a huge win and will make a huge difference for people right away.”

Eligibility for SSDI benefits generally requires people to have worked for about a quarter of their adult lives at jobs through which they paid Social Security taxes. Benefits are based on lifetime earnings; the average monthly SSDI benefit was $1,259 in June 2020, according to the Social Security Administration. (The average retirement benefit was $1,514 that month.)

The SSDI waiting period was intended to make sure the program served only people expected to have claims that would last at least a year, said Ted Norwood, chief legal officer at Integrated Benefits Inc. in Jefferson City, Missouri, who represents SSDI applicants. But it isn’t necessary, he added, because disability rules now require that people have a condition that will keep them out of work at least a year or result in death.

“The five-month waiting period serves no purpose as far as weeding out cases,” Norwood said.

Existing federal law also made special health provisions for people with ALS and end-stage renal disease. Most people with disabilities must wait two years to be eligible for Medicare, but people with either of those two diseases can qualify sooner. ALS patients are eligible as soon as SSDI benefits start.

The new law could have made a big difference for Baron, who lives in Pikesville, Maryland. She and her husband, who works part time at a funeral parlor, didn’t have comprehensive health insurance when she got sick. They were enrolled only in a supplemental medical plan that paid out limited cash benefits.

By the time she was diagnosed and her SSDI and Medicare came through, Baron and her husband had maxed out their credit cards, raided $10,000 from their IRA and gone to their family for money. They were $13,000 in debt. They sold their house and moved into a condo to save on expenses.

“It is imperative that as [people] become more and more debilitated and cannot work, that they have immediate access to SSDI,” Baron said.

Like Sen. Lee, some patient advocates say the accommodations on disability benefits and Medicare made for patients with ALS should be extended to others with similarly intractable conditions.

The Social Security Administration has identified 242 conditions that meet the agency’s standards for qualifying for disability benefits and are fast-tracked for benefit approval.

Once approved, people with these conditions still must wait five months before they receive any money. Now, under the new law, people with ALS can skip the waiting period, though no one else on the “compassionate allowances” list can.

Breast cancer advocates are hoping for similar accommodations for people with metastatic breast cancer. Legislation introduced in the House and Senate in 2019 would have eliminated the SSDI waiting period for this group, but it did not pass.

Tackling the problem one condition at a time doesn’t make sense, others argue.

“Can you imagine, one by one, people with these conditions trying to find people in the House and in the Senate to champion the bill?” said Carol Harnett, president of the Council for Disability Awareness, which represents disability insurers.

Deb McQueen-Quinn thinks it would be good if the new law sets a precedent for eliminating the SSDI waiting period. At 55, McQueen-Quinn has lived with ALS since 2009, far longer than most.

A former convenience store manager, she uses a wheelchair full time now. She knows all too well the toll of the disease. ALS runs in her family, and she’s watched several family members, including her sister, brother and a cousin die of it.

Her sister, a former quality control engineer, was diagnosed in 2006 and died the following year, a week before she would have received her first SSDI payment.

McQueen-Quinn, who lives in Wellsville, New York, with her husband, has two children in their 30s. Her son, 33, carries the familial genetic mutation that leads to ALS. So far he hasn’t developed symptoms. But it’s for people like her son and other family members that she fought for the new law.

“Now that we’ve set the precedent, I’m sure you’ll see a lot of other diseases go after this,” she said.

Until this week, there has been no nationwide system to tell people where they could obtain the drugs.

This article was published on Wednesday, January 20, 2021 in Kaiser Health News.

By JoNel Aleccia

By the time he tested positive for covid-19 on Jan. 12, Gary Herritz was feeling pretty sick. He suspects he was infected a week earlier, during a medical appointment in which he saw health workers who were wearing masks beneath their noses or who had removed them entirely.

His scratchy throat had turned to a dry cough, headache, joint pain and fever — all warning signs to Herritz, who underwent liver transplant surgery in 2012, followed by a rejection scare in 2018. He knew his compromised immune system left him especially vulnerable to a potentially deadly case of covid.

"The thing with transplant patients is we can crash in a heartbeat," said Herritz, 39. "The outcome for transplant patients [with covid] is not good."

On Twitter, Herritz had read about monoclonal antibody therapy, the treatment famously given to President Donald Trump and other high-profile politicians and authorized by the Food and Drug Administration for emergency use in high-risk covid patients. But as his symptoms worsened, Herritz found himself very much on his own as he scrambled for access.

His primary care doctor wasn't sure he qualified for treatment. His transplant team in Wisconsin, where he'd had the liver surgery, wasn't calling back. No one was sure exactly where he should go to get it. From bed in Pascagoula, Mississippi, he spent two days punching in phone numbers, reaching out to health officials in four states, before he finally landed an appointment to receive a treatment aimed at keeping patients like him out of the hospital — and, perhaps, the morgue.

"I am not rich, I am not special, I am not a political figure," Herritz, a former community service officer, wrote on Twitter. "I just called until someone would listen."

Months after Trump emphatically credited an experimental antibody therapy for his quick recovery from covid and even as drugmakers ramp up supplies, only a trickle of the product has found its way into regular people. While hundreds of thousands of vials sit unused, sick patients who, research indicates, could benefit from early treatment — available for free — have largely been fending for themselves.

Federal officials have allocated more than 785,000 doses of two antibody treatments authorized for emergency use during the pandemic, and more than 550,000 doses have been delivered to sites across the nation. The federal government has contracted for nearly 2.5 million doses of the products from drugmakers Eli Lilly and Co. and Regeneron Pharmaceuticals at a cost of more than $4.4 billion.

So far, however, only about 30% of the available doses have been administered to patients, federal Department of Health and Human Services officials said.

Scores of high-risk covid patients who are eligible remain unaware or have not been offered the option. Research has shown the therapy is most effective if given early in the illness, within 10 days of a positive covid test. But many would-be recipients have missed this crucial window because of a patchwork system in the U.S. that can delay testing and diagnosis.

"The bottleneck here in the funnel is administration, not availability of the product," said Dr. Janet Woodcock, a veteran FDA official in charge of therapeutics for the federal Operation Warp Speed effort.

Among the daunting hurdles: Until this week, there has been no nationwide system to tell people where they could obtain the drugs, which are delivered through IV infusions that require hours to administer and monitor. Finding space to keep covid-infected patients separate from others has been difficult in some health centers slammed by the pandemic.

"The health care system is crashing," Woodcock told reporters. "What we've heard around the country is the No. 1 barrier is staffing."

At the same time, many hospitals have refused to offer the therapy because doctors were unimpressed with the research federal officials used to justify its use.

Monoclonal antibodies are lab-produced molecules that act as substitutes for the body's own antibodies that fight infection. The covid treatments are designed to block the SARS-CoV-2 virus that causes infection from attaching to and entering human cells. Such treatments are usually prohibitively expensive, but for the time being the federal government is footing the bulk of the bill, though patients likely will be charged administrative fees.

Nationwide, nearly 4,000 sites offer the infusion therapies. But for patients and families of people most at risk — those 65 and older or with underlying health conditions — finding the sites and gaining access has been almost impossible, said Brian Nyquist, chief executive officer of the National Infusion Center Association, which is tracking supplies of the antibody products. Like Herritz, many seeking information about monoclonals find themselves on a lone crusade.

"If they're not hammering the phones and advocating for access for their loved ones, others often won't," he said. "Tenacity is critical."

Regeneron officials said they're fielding calls about covid treatments daily to the company's medical information line. More than 3,500 people have flooded Eli Lilly's covid hotline with questions about access.

As of this week, all states are required to list on a federal locator map sites that have received the monoclonal antibody products, HHS officials said. The updated map shows wide distribution, but a listing doesn't guarantee availability or access; patients still need to check. It's best to confer with a primary care provider before reaching out to the centers. For best results, treatment should occur as soon as possible after a positive covid test.

Some health systems have refused to offer the monoclonal antibody therapies because of doubts about the data used to authorize them. Early studies suggested that Lilly's therapy, bamlanivimab, reduced the need for hospitalization or emergency treatment in outpatient covid cases by about 70%, while Regeneron's antibody cocktail of casirivimab plus imdevimab reduced the need by about 50%.

But those studies were small, just a few hundred subjects, and the results were limited. "A lot of doctors, actually, they're not impressed with the data," said Dr. Daniel Griffin, an infectious disease expert at Columbia University who co-hosts the podcast "This Week in Virology." "There really is still that question of, 'Does this stuff really work?'"

As more patients are treated, however, there's growing evidence that the therapies can keep high-risk patients out of the hospital, not only easing their recovery but also decreasing the burden on health systems struggling with record numbers of patients.

Dr. Raymund Razonable, an infectious disease expert at the Mayo Clinic in Minnesota, said he has treated more than 2,500 covid patients with monoclonal antibody therapy with promising results. "It's looking good," he said, declining to provide details because they're embargoed for publication. "We are seeing reductions in hospitalizations; we're seeing reductions in ICU care; we're also seeing reductions in mortality."

Banking on observations from Mayo experts and others, federal officials have been pushing for wider use of antibody therapies. HHS officials have partnered with hospitals in three hard-hit states — California, Arizona and Nevada — to set up infusion centers that are treating dozens of covid patients each day.

One of those sites went up in late December at El Centro Regional Medical Center in California's Imperial County, an impoverished farming region on the state's southern border that has recorded among the highest covid infection rates in the state. For months, the medical center strained to absorb the overwhelming influx of patients, but chief executive Dr. Adolphe Edward said a new walk-up infusion site has already put a dent in the covid load.

More than 130 people have been treated, all patients who were able to get the two-hour infusions and then recuperate at home. "If those folks would not have had the treatment, they would have come through the emergency department and we would have had to admit the lion's share of them," he said.

It's important to make sure people in high-risk groups know to seek out the therapy and to get it early, Edward said. He and his staff have been working with area doctors' offices and nonprofit groups and relying on word-of-mouth.

"On multiple levels, we're saying, 'If you've tested positive for the virus, come and let us see if you are eligible,'" Edward said.

Greater awareness is a goal of the HHS effort, said Dr. John Redd, chief medical officer for the assistant secretary for preparedness and response. "These antibodies are meant for everyone," he said. "Everyone across the country should have equal access to these products."

For now, patients like Herritz, the Mississippi liver transplant recipient, say reality is falling well short of that goal. If he hadn't continued to call in search of a referral, he wouldn't have been treated. And without the therapy, Herritz believes, he was just days away from hospitalization.

"I think it's horrible that if I didn't have Twitter, I wouldn't know anything about this," he said. "I think about all the people who have died not knowing this was an option for high-risk individuals."

JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia

Surveys in North Carolina and across the nation show that about one-third of transgender people have been refused treatment or suffered verbal or physical abuse from a medical provider.

This article was published on Wednesday, January 20, 2021 in Kaiser Health News.

By Aneri Pattani

When Allison Scott came out as a trans woman in 2013, she told not only family and friends, but also her primary care physician.

She didn't need his help with hormone therapy. She had another doctor for that. But she wanted to share the information with her doctor of more than 10 years in case it affected other aspects of her health.

She was shocked when he told her he would no longer treat her.

"It was humiliating," said Scott, now director of policy and programs for the Campaign for Southern Equality, an LGBTQ advocacy organization based in North Carolina. "It's not because the provider doesn't have the knowledge they need, but because the provider isn't comfortable with who you are."

Surveys in North Carolina and across the nation show that about one-third of transgender people have been refused treatment or suffered verbal or physical abuse from a medical provider.

Such concerns have become more worrisome during the covid-19 pandemic, when being denied health care — or avoiding it due to fear of discrimination and previous negative experiences — can have deadly consequences.

But Scott and other advocates in North Carolina now see an opening to push for city and county laws prohibiting this type of treatment. A state ban preventing local governments from enacting nondiscrimination ordinances expired on Dec. 1.

The ban was a remnant of the controversial 2016 "bathroom bill," which catapulted North Carolina into the national spotlight by making it the first state to require transgender people to use the bathroom of the gender on their birth certificate. Although public backlash and economic repercussions forced the state to repeal that law, the legislature replaced it with one that blocked local governments from passing nondiscrimination ordinances.

Now new laws could address discrimination in employment, housing, public places and more. Scott said health care should be among the top considerations, whether that means banning discrimination on the basis of gender identity and sexual orientation in hospitals and clinics or preventing someone from being fired for their identity and losing health insurance as a result.

So far, the towns of Carrboro, Hillsborough and Chapel Hill, along with Orange County, jointly announced this month new nondiscrimination ordinances that will protect LGBTQ individuals in workplaces and in public. At least two other cities are drafting ordinances and plan to vote on them later this month.

These local actions take on added significance in view of efforts during the past four years to roll back federal protections for LGBTQ people. The Trump administration has tried to expand the interpretation of religious liberty and civil rights laws to protect medical providers who refuse to provide services for religious or moral reasons. Last summer, the administration reinterpreted the Affordable Care Act's nondiscrimination requirements to remove Obama-era protections for LGBTQ people. This month, it removed explicit provisions that prohibited social service providers who receive Department of Health and Human Services grants from discriminating on the basis of sexual orientation and gender identity, among other characteristics. Sasha Buchert, a senior attorney with Lambda Legal, said the change affects a wide array of programs, from Meals on Wheels to child welfare agencies, HIV/AIDS services and more.

Although many of these actions have been blocked by courts, and the incoming Biden administration has promised to reverse several of Trump's policies, LGBTQ advocates and legal experts say those processes take time and are not guaranteed.

"To put it plainly, having protections at the local level sometimes offers more protection, particularly as laws are being contested at the federal level," said Lindsey Dawson, a researcher who studies LGBTQ issues at KFF. (KHN is an editorially independent program of KFF.)

A Path Forward

In recent decades, protections for LGBTQ Americans have emerged as a cultural flashpoint, often triggering debates about religious liberties versus civil rights and involving anything from marriage and parenting to offices and bakeries.

Critics of nondiscrimination laws say they squash valid debate in health care about what constitutes ethical treatment.

Ryan Anderson, a senior research fellow with the conservative think tank the Heritage Foundation, said no one should be turned away from medical care because of their identity, but laws need to distinguish between that type of discrimination and medical providers who disagree on a certain treatment plan.

"If there's an adult who wants to transition and a doctor and health care plan who want to support that, they can do that," Anderson said. "But if the doctor or health plan don't want to support that, they should also be free not to do that."

For advocates who work with LGBTQ people daily, the need for nondiscrimination laws is clear. Ames Simmons, policy director for Equality NC, recounted the experiences of people he knows: One trans woman was threatened with arrest if she didn't leave a hospital in the western part of the state, while another was denied care at a dialysis clinic in eastern North Carolina after she complained about harassment.

Research shows that LGBTQ people in states with nondiscrimination laws experience fewer disparities in employment, education and health care than those living in states without such laws. And city- and county-level actions may provide a road map for broader efforts. Christy Mallory, legal director at the Williams Institute at UCLA, pointed to the example of Utah, where a series of local ordinances eventually led the traditionally conservative state to pass a nondiscrimination law in 2015.

The laws don't automatically change people's beliefs, Mallory said, but they provide a starting point to build momentum toward statewide and cultural changes.

Pandemic Urgency

Advocates cite an added imperative to protect LGBTQ rights because the covid pandemic has highlighted shortcomings and disparities in the nation's health care system. A report by the Movement Advancement Project, a Colorado-based think tank, found 1 in 8 LGBTQ people have lost insurance coverage during the pandemic — twice the rate of non-LGBTQ people. Many are unable to afford hormone therapy or counseling. In some parts of the country, transgender people have reported mistreatment at covid testing sites.

Even before covid, transgender patients who came to Dr. Jennifer Abbott, a family physician at Western North Carolina Community Health Services in Asheville, often told her they had called as many as 10 other providers before finding someone willing to treat them. Abbott, who heads the clinic's transgender health program, said about one-third of its approximately 400 patients come from rural areas across the western part of the state.

For some, the promise of nondiscrimination laws reaches beyond questions of access. The laws can also temper discriminatory behavior by sending a clear message about what is acceptable in a community, said Michael Hoeben, who coordinates services for transgender and HIV patients at the clinic and is a transgender man.

Once, when Hoeben was having a cervical polyp removed, the doctor asked him what it meant to be transgender. The doctor and nurse proceeded to laugh at Hoeben's response while performing the procedure, he said. Hoeben was so mortified that he avoided seeing a doctor for the next seven years.

A law may not have prevented that experience, Hoeben said, "but without the law, it's like open season."

"For your local government to pass a law that says we see you, we recognize you and we include you," Hoeben said, "that is a level of safety you're constantly seeking as a trans person."

Aneri Pattani: apattani@kff.org, @aneripattani

Given its large population, the U.S. death rate from covid remains lower than the rate in many other countries.

This article was published on Tuesday, January 19, 2021 in Kaiser Health News.

By Will Stone

While millions wait for a lifesaving shot, the U.S. death count from covid-19 continues to soar upward with horrifying speed. On Tuesday, the last full day of Donald Trump’s presidency, the death toll reached 400,000 — a once-unthinkable number. More than 100,000 Americans have perished in the pandemic in just the past five weeks.

In the U.S., someone now dies of covid every 26 seconds. And the disease is claiming more American lives each week than any other condition, ahead of heart disease and cancer, according to the Institute for Health Metrics and Evaluation at the University of Washington.

“It didn’t have to be like this, and it shouldn’t still be like this,” said Kristin Urquiza, whose father, Mark, died of covid in June, as the virus was sweeping through Phoenix.

Urquiza described it as “watching a slow-moving hurricane” tear apart her childhood neighborhood, where many people have no choice but to keep going to work and risking their health.

“I talk to dozens of strangers a day who are going through what I did in June, but the magnitude and the haunting similarities between our stories six months later is really hard,” said Urquiza, who addressed the Democratic National Convention in August. She co-founded Marked By COVID, to organize grieving families and supporters. The group calls for a faster government response and a national memorial for pandemic victims.

Given its large population, the U.S. death rate from covid remains lower than the rate in many other countries. But the death toll of 400,000 now exceeds any other country’s count — close to double what Brazil has recorded, and four times the toll in the United Kingdom.

“It’s very hard to wrap your mind around a number that is so large, particularly when we’ve had 10 months of large numbers assaulting our senses and really, really horrific images coming out of our hospitals and our morgues,” said Dr. Kirsten Bibbins-Domingo, chair of epidemiology at the University of California-San Francisco.

Scientists had long expected that wintertime could plunge the country into the deadliest months yet, but even Bibbins-Domingo wasn’t ready for the sheer pace of deaths, or the scale of the accumulated losses. The mortality burden has fallen heavily on her own state of California, which was averaging fewer than 100 deaths a day for long stretches of the pandemic, but has ranged up to more than 500 in recent days.

She said California followed the science with its handling of the pandemic, yet the devastation unfolding in places like Los Angeles reveals just how fragile any community can be.

“It’s important to understand virology. It’s important to understand epidemiology. But ultimately, what we’ve learned is that human behavior and psychology is a major force in this pandemic,” she said.

The U.S. in mid-January has averaged more than 3,300 deaths a day — well above the most devastating days of the early spring surge, when daily average deaths hovered around 2,000.

“At this point, looking at the numbers, for me the question is: Is there any way we can avoid half a million deaths before the end of February?” said Dr. Ashish Jha, dean of the Brown University School of Public Health.

“I think of how much suffering as a nation we seem to be willing to accept that we have this number of people getting infected and dying every day.”

How Did U.S. Go From 300,000 Deaths to 400,000?

The path to 400,000 deaths was painfully familiar, with patterns of sickness and death repeating themselves from earlier in the pandemic.

A shocking number of people in nursing homes and assisted living facilities continue to die each week — more than 6,000 in the first week of January.

Deaths linked to long-term care account for more than a third of all covid deaths in the U.S. since the beginning of the pandemic. In a handful of states, long-term care contributed to half the total deaths.

Certain parts of the country have a disproportionately high death rate. Alabama and Arizona, in particular, have experienced high rates, given their populations. The virus continues to kill Black and Indigenous Americans at much higher rates than whites.

The chance of dying of covid remains much higher in rural America than in the urban centers.

People over 65 make up the overwhelming majority of deaths, but Jha said more young people are dying than earlier in the pandemic, simply because the virus is so widespread.

In this newest and grimmest chapter of the pandemic, the virus has preyed upon a public weary of restrictions and rules, and eager to mix with family and friends over the holiday season.

Like many other health workers, Dr. Panagis Galiatsatos at Johns Hopkins Hospital is now witnessing the tragic consequences in his daily rounds.

“My heart breaks, because we could have prevented this,” said Galiatsatos, an assistant professor of medicine who cares for covid patients in the intensive care unit.

“A lot of what we saw during the holiday travel was the inability to reach our loved ones or family members — not like a public service announcement, but one on one, talking to them [about the exposure risks]. … I really felt like we failed.”

Galiatsatos still recalls a grandmother who was transported six hours from her home to his hospital — because there were no beds anywhere closer. On the phone, he heard her family’s shock at her sudden passing.

“They said, ‘But she was so healthy. She cooked us all Thanksgiving dinner and we had all the family over,’” he said. “They were saying it with sincerity, but that’s probably where she got it.”

Light at the End of a Very Long Tunnel

The enormous loss of life this winter has happened, paradoxically, at a time that many hope marks the start of the final chapter of the pandemic.

A quarter of all covid deaths have happened during the five weeks since the Food and Drug Administration authorized the first vaccine.

“The trickle of vaccine is so tragically scant. What we need is more of a river of it,” said Dr. Howard Markel, who directs the University of Michigan’s Center for the History of Medicine.

Markel, who has written about the 1918-19 flu pandemic, said it’s estimated it killed upward of 700,000 Americans.

Of the covid pandemic, he said, “I hope we’re not talking … 600,000 or more.”

At this point, about 3 in 100 people have been vaccinated, placing America ahead of many other countries but behind the optimistic promises made in the early days of the rollout. Given the current pace of vaccination, experts warn, Americans cannot depend solely on the vaccine to prevent a crushing number of additional deaths in the coming months.

UCSF’s Bibbins-Domingo worries that the relief of knowing a vaccine will eventually be widely available — the light at the end of the tunnel — may actually lull millions more Americans into a false sense of safety.

“This tunnel is actually a very long tunnel, and the next few months, as the last few months have been, are going to be very dark times,” she said.

The emergence of more contagious variants of SARS-CoV-2, the covid virus, complicates the picture and makes it all the more imperative that Americans spend the coming months doubling down on the very same tactics — masks and physical distancing — that have kept many people safe so far.

But Jha, of Brown University, says the country now faces a different task from that of the fall, when “big behavioral changes and large economic costs” were required to prevent deaths.

“Right now what is required is getting people vaccinated with vaccines we already have,” he said. “The fact that’s going super slow still is incredibly frustrating.”

It is this dichotomy — the advent of lifesaving vaccines as hospitals are filled with more dying patients than ever before — that makes this moment in the pandemic so confounding.

“I can’t help but feel this immense somberness,” said Kristin Urquiza. “I know that a vaccine isn’t going to make a difference for the people that are in the hospital right now or who will be in the hospital next week or even next month.”

This story is from a reporting partnership with NPR.