Category: From California Healthline.org

The app builders had planned for pranksters, ensuring that only people with verified COVID-19 cases could trigger an alert. They’d planned for heavy criticism about privacy, in many cases making the features as bare-bones as possible. But, as more states roll out smartphone contact-tracing technology, other challenges are emerging. Namely, human nature.

The problem starts with downloads. Stefano Tessaro calls it the “chicken-and-egg” issue: The system works only if a lot of people buy into it, but people will buy into it only if they know it works.

“Accuracy of the system ends up increasing trust, but it is trust that increases adoptions, which in turn increases accuracy,” Tessaro, a computer scientist at the University of Washington who was involved in creating that state’s forthcoming contact-tracing app, said in a lecture last month.

In other parts of the world, people are taking that necessary leap of faith. Ireland and Switzerland, touting some of the highest uptake rates, report more than 20% of their populations use a contact-tracing app.

Americans seem not so hot on the idea. As with much of the U.S. response to the pandemic, this country hasn’t had a national strategy. So it’s up to states. And only about a dozen, including the recent addition of Colorado, have launched the smartphone feature, which sends users a notification if they’ve crossed paths with another app user who later tests positive for COVID-19.

Within those few states, enthusiasm appears dim. In Wyoming, Alabama and North Dakota, some of the few states with usage data beyond initial downloads, under 3% of the population is using the app.

The service, built by Google and Apple and adapted by individual countries, states or territories, either appears as a downloadable app or as a setting, depending on the state and the device. It uses Bluetooth to identify other phones using the app within about 6 feet for more than 15 minutes. If a user tests positive for COVID-19, they’re given a verification code to input so that each contact can be notified they were potentially exposed. The person’s identity is shielded, as are those of the people notified.

“The more people who add their phone to the fight against COVID, the more protection we all get. Everyone should do it,” Sarah Tuneberg, who leads Colorado’s test and containment effort, told reporters on Oct. 29. “The sky’s the limit. Or the population is the limit, really.”

But the population could prove to be quite a limit. Data from early-adopter governments suggests even those who download the app and use it might not follow directions at the most critical juncture.

According to the Virginia Health Department, from August to November, about 613 app users tested positive and received a code to alert their contacts that they may have exposed them to the virus. About 60% of them actually activated it.

In North Dakota, where the outbreak is so big that human contact tracers can’t keep up, the data is even more dire. In October, about 90 people tested positive and received the codes required to alert their contacts. Only about 30% did so.

Researchers in Dublin tracking app usage in 33 regions around the world have encountered echoes of the same issue. In October, they wrote that in parts of Europe fewer people were alerting their contacts than expected, given the scale of the outbreaks and the number of active app users. Italy and Poland ranked lowest. There, they estimated, just 10% of the app users they’d expect were submitting the codes necessary to warn others.

“I’m not sure that anybody working in this field had foreseen that that could be a problem,” said Lucie Abeler-Dörner, part of a team at the Big Data Institute at Oxford studying COVID-19 interventions, including digital contact tracing. “Everybody just assumed that if you sign up for a voluntary app … why would you then not push that button?”

So far, people in the field only have guesses. Abeler-Dörner wonders how much of it has to do with people going into panic mode when they find out they’re positive.

Tessaro, the University of Washington computer scientist, asks if the health officials who provide the code need more training on how to provide clear instructions to users.

Elissa Redmiles, a faculty member at the Max Planck Institute for Software Systems who is studying what drives people to install contact-tracing apps, worries that people may have difficulty inputting their test results.

But Tim Brookins, a Microsoft engineer who developed North Dakota’s contact-tracing app as a volunteer, has a bleaker outlook.

“There’s a general belief that some people want to load the app so that they can be notified if someone else was positive, in a self-serving way,” he said. “But if they’re positive, they don’t want to take the time.”

Abeler-Dörner called the voluntary notification a design flaw and said the alerts should instead be automatically triggered.

Even with the limitations of the apps, the technology can help identify new COVID cases. In Switzerland, researchers looked at data from two studies of contact-tracing app users. They wrote in a not-yet-peer-reviewed paper that while only 13% of people with confirmed cases in Switzerland used the app to alert their contacts from July to September, that prompted about 1,700 people who had potentially been exposed to call a dedicated hotline for help. And of those, at least 41 people discovered they were, indeed, positive for COVID-19.

In the U.S., another non-peer-reviewed modeling study from Google and Oxford University looking at three Washington state counties found that even if only 15% of the population uses a contact-tracing app, it could lead to a drop in COVID-19 infections and deaths. Abeler-Dörner, a study co-author, said the findings could be applicable elsewhere, in broad strokes.

“It will avert infections,” she said. “If it’s 200 or 1,000 and it prevents 10 deaths, it’s probably worth it.”

That may be true even at low adoption rates if the app users are clustered in certain communities, as opposed to being scattered evenly across the state. But prioritizing privacy has required health departments to forgo the very data that would let them know if users are near one another. While an app in the United Kingdom asks users for the first few digits of their postal code, very few U.S. states can tell if users are in the same community.

Some exceptions include North Dakota, Wyoming and Arizona, which allow app users to select an affiliation with a college or university. At the University of Arizona, enough people are using the app that about 27% of people contacted by campus contact tracers said they’d already been notified of a possible exposure. Brookins of Microsoft, who created Care19 Alert, the app used in Wyoming and North Dakota, said that offering an affiliation option also allows people who’ve been exposed to get campus-specific instructions on where to get tested and what to do next.

“In theory, we can add businesses,” he said. “It’s so polarizing, no businesses have wanted to sign up, honestly.”

The privacy-focused design also means researchers don’t have what they need to prove the apps’ usefulness and therefore encourage higher adoption.

“Here there is actually some irony because the fact that we are designing this solution with privacy in mind somehow prevents us from accurately assessing whether the system works as it should,” Tessaro said.

In states including Colorado, Virginia and Nevada, the embedded privacy protections mean no one knows who has enabled the contact-tracing technology. Are they people who barely interact with anyone, or are they essential workers, interacting regularly with many people that human contact tracers would never be able to reach? Are they crossing paths and trading signals with other app users or, if they test positive, will their warning fall silently like a tree in an empty forest? Will they choose to notify people at all?

Colorado’s health department said it’s issuing thousands of COVID codes a day. As of Wednesday, 3,400 people have used the codes to notify their contacts, it said. An automated system issues codes for positive COVID-19 tests even if the infected people don’t have the app, making it impossible to know how many users are acting on the codes.

“I have hope that the vast majority of Coloradans will take this opportunity to give this gift of exposure notification to other people,” said Tuneberg. “I believe Coloradans will do it.”

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

Health insurance companies will have to give their customers estimated out-of-pocket costs for prescription drugs and disclose to the public the negotiated prices they pay for drugs, under an unexpected new Trump administration rule.

The administration said those requirements, part of a broader rule issued Oct. 29 forcing health plans to disclose costs and payments for most health care services, will promote competition and empower consumers to make better medical decisions.

The new rule does not, however, apply to Medicare or Medicaid.

The drug price provisions, which would not begin until 2022, were a surprise because they were not included in the original proposed rule issued in 2019.

It’s the departing Trump administration’s most ambitious effort to illuminate the complex, secret and lucrative system of prescription drug pricing, in which health plans, drug manufacturers and pharmacy benefit management firms agree on prices. The administration and Congress have tried and failed to reform part of that system — the rebates paid by drugmakers to the pharmacy benefit managers to get their products onto insurance plan formularies. Those payments, which some call kickbacks, are widely blamed for driving up costs to patients.

Patient advocates and policy experts, while generally supportive of the administration’s transparency concept, are divided on the cost-saving value of the new rule. Many say Congress needs to take broader action to curb drug prices and cap patient costs. Groups representing drugmakers, pharmacy benefit managers and commercial health plans have denounced the initiative, saying it will damage market competition and raise drug prices.

Advocates say the new rule will help patients in private health plans, including employer-based plans, and their physicians choose less expensive medications. It may even enable health plans to buy drugs more cheaply for their members. Three in 10 Americans say they have opted not to use a prescribed drug as directed because of the high cost, according to a KFF survey last year. (KHN is an editorially independent program of KFF.)

Under the new federal rule, starting in 2024 an insurance plan member can request and receive estimates of out-of-pocket costs for prescription drugs, both online and on paper, taking into account the member’s deductible, coinsurance and copays. Insurers say most plans already offer such cost-estimator tools.

Helping patients find drugs that cost them less could boost their compliance in taking needed medicines, thus improving their health.

“You can call your insurer now and ask what your copay is,” said Wendy Netter Epstein, a health law and policy professor at DePaul University in Chicago. “Patients often don’t do that. Whether or not this has an impact depends on whether patients take the initiative to obtain this information.”

Starting in 2022 under the new rule, private plans also will have to publish the prices they negotiated with drug companies and benefit management companies online in a digital, machine-readable format. That may be particularly helpful to employers that provide health insurance to workers, enabling them to seek the lowest price the drug manufacturer is offering to other purchasers.

The rule will not require plans to disclose rebates and other discounts they negotiate with drugmakers and pharmacy benefit managers.

That’s a disappointment to employers that provide health insurance for their workers. “We’d like a much clearer idea of how much we’re paying for every drug every time it’s dispensed,” said James Gelfand, senior vice president for health policy at the ERISA Industry Committee, which represents large self-insured employers. “We want to know where every cent in rebates and discounts is going. We’ll at least begin peeling back the onion. You have to start somewhere.”

But other experts argue the rule will do little to make medications more affordable. Indeed, they warn that publishing what health plans pay drug manufacturers could crimp some plans’ ability to get price concessions, raising the premiums and drug prices that plan members pay. That’s because manufacturers won’t want to give those discounts knowing other health plans and pharmacy benefit managers will see the published rates and ask for the same deals.

“Insurers and pharmacy benefit managers currently use rebates that are hidden from view to drive prices lower,” said Dr. Aaron Kesselheim, a professor of medicine at Harvard University who studies prescription drug policy. “If you make that transparent, you kind of reduce the main strategy payers have to lower drug prices.”

Patient advocates also questioned how useful the published rates will be for patients, because plans don’t have to post list prices, on which patient cost-sharing amounts are based. There also are practical limits to patients’ ability to price-shop for drugs, considering there may be only one effective drug for a given medical condition, such as many types of cancers.

Still, if the public knows more about how much health plans pay for drugs — and can estimate the size of the rebates and discounts that aren’t being passed on to patients — that could heighten pressure on federal and state elected officials to tackle the thorny issues of high prices and gaps in insurers’ drug coverage, which powerful industry groups oppose.

“If the information is presented to consumers so they realize they are paying a higher price without the benefit of the rebates, you’ll get a lot of angry consumers,” said Niall Brennan, CEO of the Health Care Cost Institute, a nonprofit group that publishes cost data.

The Biden administration is expected to keep the new price disclosure rule for health plans. In July, the Biden campaign issued a joint policy statement with Sen. Bernie Sanders (I-Vt.) favoring increased price transparency in health care.

But Kesselheim and other experts say Congress needs to consider stronger measures than price transparency to address drug affordability. These include letting the federal government negotiate prices with drugmakers, limiting the initial price of new drugs, capping price increases and establishing an impartial review process for evaluating the clinical value of drugs relative to their cost. Those are policies Biden has said he supports.

“There’s a limit to what transparency can do,” said Shawn Gremminger, health policy director at the Pacific Business Group on Health, which represents large self-insured employers. “That’s why we’re increasingly comfortable with policies that get at the underlying prices of drugs.” As an example, he cited the Trump administration’s proposal to tie what Medicare pays for drugs to lower prices in other countries.

Commercial insurers, drug manufacturers and pharmacy benefit managers are strongly opposed to the drug transparency rule. “This rule will disrupt the marketplace dynamics and undermine the highly competitive negotiations that kept net prices for brand medicines at a growth rate of just 1.7% in 2019,” said Katie Koziara, a spokesperson for the Pharmaceutical Research and Manufacturers of America. She wouldn’t say whether her group would sue to block the rule.

The survival of the rule, which draws its legal authority from the Affordable Care Act, also depends on the U.S. Supreme Court upholding the constitutionality of that law in a case argued on Nov. 10.

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

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

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

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BOULDER, Colo. — Brady Bowman, a 19-year-old student at the University of Colorado-Boulder, and two friends strolled down 11th Street, all sporting matching neck gaiters branded with the Thomas’ English Muffins logo. He had received an entire box of the promotional gaiters.

He thinks they are just more comfortable to wear than a face mask. “Especially a day like today, where it’s cold out,” he said, with the top of his gaiter pulled down below his chin.

More stylish? Perhaps. More comfortable? Maybe. But as effective? Not necessarily.

With states such as Colorado requiring face coverings indoors to prevent the spread of COVID-19, gaiters and bandannas have become popular accessories, particularly among college students and other young adults. Less restrictive than masks, they can easily be pulled up or down as needed — and don’t convey that just-out-of-the-hospital vibe.

But tests show those hipper face coverings are not as effective as surgical or cloth face masks. Bandannas, like plastic face shields, allow the virus to escape out the bottom in aerosolized particles that can hang in the air for hours. And gaiters are often made of such thin material that they don’t trap as much virus as cloth masks.

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As new COVID cases, hospitalizations and deaths surge upward heading into winter, many public health experts wonder whether it’s time to move beyond the anything-goes approach toward more standardization and higher-quality masks. President-elect Joe Biden reportedly is mulling a national face-covering mandate of some sort, which could not only increase mask-wearing but better define for Americans what sort of face covering would be most protective.

“Unlike seat belts, condoms or other prevention strategies, we have not yet standardized what we are recommending for the public,” said Dr. Monica Gandhi, an infectious disease specialist at the University of California-San Francisco. “And that has been profoundly confusing for the American public, to have all these masks on the market.”

Patchwork of Regulations

Masks have been shown to reduce the spread of respiratory droplets that contain the coronavirus. And the Centers for Disease Control and Prevention now says that masks not only help prevent people from infecting others but help protect the wearers from infection as well.

According to a recent analysis by the Institute for Health Metrics and Evaluation, implementing universal mask-wearing in late September would have saved nearly 130,000 American lives by the end of February.

Even so, many Americans still aren’t wearing masks. And in some states, they haven’t been required to do so.

At least 37 states and the District of Columbia have mandated face coverings but show wide variation in defining what qualifies. States such as Maryland and Rhode Island include bandannas or neck gaiters in their definitions, while South Carolina and Michigan do not, according to a KHN review of the orders. Some spell out the circumstances in which coverings must be worn or establish enforcement policies.

But according to Lawrence Gostin, a Georgetown University law professor, many states are not holding residents to those rules. Some state or local officials are choosing not to enforce them.

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“We have a patchwork of inconsistent rules and laws around the country,” Gostin said. “And when we are dealing with a nationwide pandemic, a patchwork just won’t get the job done.”

Cloth mask manufacturing was nearly nonexistent in the U.S. before the pandemic, so public health officials opted early in the year to stress the importance of wearing any face covering rather than trying to focus on one standard. As a result, Americans are wearing a hodgepodge of coverings, from home-sewn to commercial versions, with various levels of protection.

And what is worn matters. Dr. Iahn Gonsenhauser, an infectious disease specialist at the Ohio State University Wexner Medical Center, said face coverings generally fall into three categories of effectiveness. N95 masks (not those with valves), surgical masks and well-made cloth masks (constructed of tightly woven material, folded over two or three times, and properly covering the mouth and nose) are in the highly effective category.

Bandannas, neck gaiters and face shields lie at the other end of the spectrum, and most everything else falls in the middle.

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“Bandannas are typically a thinner material, so if they’re not doubled or tripled up, that can allow respiratory droplets, in particular, to move through the masks,” he said. “But the fact that they’re open along the bottom of the mouth and neck, if they’re not tucked into a shirt or something like that, also allows for a lot of that exhalation droplet to escape around the mask and become airborne.”

A plastic face shield can block larger droplets but won’t stop aerosolized particles from flowing beyond its edges.

The evidence around neck gaiters has been mixed, in part because so many materials and designs are used. But recent testing suggests even the thin material commonly used to make gaiters is nearly as effective as a cloth mask if doubled over.

“With few exceptions, the best mask is the mask that somebody is going to use regularly and consistently,” Gonsenhauser said. “It may be that the best technical mask is not going to be the mask that everybody’s going to be willing to wear all the time.”

Researchers at the National Institute for Occupational Safety and Health have found most of the commercially produced cloth masks block 40% to 60% of droplets, approaching the effectiveness of surgical masks.

“You can’t possibly test everything, but certainly one take-home message is that anything is better than nothing,” said William Lindsley, a NIOSH biomedical engineer. “We haven’t tested anything that has not worked.”

Call for Standardization

But Gandhi believes it’s time to raise the standards for masks, ramp up the production of disposable surgical masks and encourage, if not order, Americans to wear them. Early in the pandemic, the Trump administration reportedly considered sending masks to every American but ultimately decided against it.

Taiwan, on the other hand, invested in manufacturing and distributing surgical masks, and it has one of the lowest COVID death counts in the world: fewer than 10 deaths in a country of 24 million people.

“It makes more sense to standardize masks, to mass-produce surgical masks, which are not very expensive,” Gandhi said. “We’re spending a lot more on everything else.”

She said surgical masks might even reduce the severity of COVID-19. Gandhi and several colleagues recently wrote in a medical journal article that evidence suggests the less virus a person is exposed to, the less sick they become.

That’s been backed up in tests with lab animals exposed to the coronavirus and with humans exposed to other, less dangerous respiratory viruses.

Other evidence also supports that theory. While the CDC estimates about 40% of COVID cases are asymptomatic, outbreaks in food processing plants where workers were handed surgical or N95 masks as they entered showed a much higher proportion of infected workers never developed symptoms. That could explain why many Asian countries, where mask-wearing has been a cultural norm for decades, have been able to reopen their economies without seeing death rates as high as in the United States.

“Tokyo is a good example. It’s wide open, the people are walking around shoulder to shoulder, people are going to offices, people are going to school,” Gandhi said. “But they’re all masked and they have very low rates of severe illness.”

If she’s right, a national mandate calling for surgical masks could both reduce transmission and prevent serious disease.

“We can’t wait,” Gandhi said. “We’ve had enough deaths from this infection. Our case fatality rates in a country of this degree of development are just tragic.”

It remains to be seen whether Americans will be more willing to wear dowdier, less comfortable but more effective masks to protect themselves and others. When Bowman, the Boulder college student, was asked if he was worried that his gaiter might not block as much of the virus as a face mask, he seemed unconcerned.

“As long as the other person is wearing a mask,” he said.

When he started researching a troublesome childhood infection nearly four decades ago, virologist Dr. Barney Graham, then at Vanderbilt University, had no inkling his federally funded work might be key to deliverance from a global pandemic.

Yet nearly all the vaccines advancing toward possible FDA approval this fall or winter are based on a design developed by Graham and his colleagues, a concept that emerged from a scientific quest to understand a disastrous 1966 vaccine trial.

Basic research conducted by Graham and others at the National Institutes of Health, Defense Department and federally funded academic laboratories has been the essential ingredient in the rapid development of vaccines in response to COVID-19. The government has poured an additional $10.5 billion into vaccine companies since the pandemic began to accelerate the delivery of their products.

The Moderna vaccine, whose remarkable effectiveness in a late-stage trial was announced Monday morning, emerged directly out of a partnership between Moderna and Graham’s NIH laboratory.

Coronavirus vaccines are likely to be worth billions to the drug industry if they prove safe and effective. As many as 14 billion vaccines would be required to immunize everyone in the world against COVID-19. If, as many scientists anticipate, vaccine-produced immunity wanes, billions more doses could be sold as booster shots in years to come. And the technology and production laboratories seeded with the help of all this federal largesse could give rise to other profitable vaccines and drugs.

The vaccines made by Pfizer and Moderna, which are likely to be the first to win FDA approval, in particular rely heavily on two fundamental discoveries that emerged from federally funded research: the viral protein designed by Graham and his colleagues, and the concept of RNA modification, first developed by Drew Weissman and Katalin Karikó at the University of Pennsylvania. In fact, Moderna’s founders in 2010 named the company after this concept: “Modified” + “RNA” = Moderna, according to co-founder Robert Langer.

“This is the people’s vaccine,” said corporate critic Peter Maybarduk, director of Public Citizen’s Access to Medicines program. “Federal scientists helped invent it and taxpayers are funding its development. … It should belong to humanity.”

Moderna, through spokesperson Ray Jordan, acknowledged its partnership with NIH throughout the COVID-19 development process and earlier. Pfizer spokesperson Jerica Pitts noted the company had not received development and manufacturing support from the U.S. government, unlike Moderna and other companies.

The idea of creating a vaccine with messenger RNA, or mRNA — the substance that converts DNA into proteins — goes back decades. Early efforts to create mRNA vaccines failed, however, because the raw RNA was destroyed before it could generate the desired response. Our innate immune systems evolved to kill RNA strands because that’s what many viruses are.

Karikó came up with the idea of modifying the elements of RNA to enable it to slip past the immune system undetected. The modifications she and Weissman developed allowed RNA to become a promising delivery system for both vaccines and drugs. To be sure, their work was enhanced by scientists at Moderna, BioNTech and other laboratories over the past decade.

Another key element in the mRNA vaccine is the lipid nanoparticle — a tiny, ingeniously designed bit of fat that encloses the RNA in a sort of invisibility cloak, ferrying it safely through the blood and into cells and then dissolving, thereby allowing the RNA to do its work of coding a protein that will serve as the vaccine’s main active ingredient. The idea of enclosing drugs or vaccines in lipid nanoparticles arose first in the 1960s and was developed by Langer and others at the Massachusetts Institute of Technology and various academic and industry laboratories.

Karikó began investigating RNA in 1978 in her native Hungary and wrote her first NIH grant proposal to use mRNA as a therapeutic in 1989. She and Weissman achieved successes starting in 2004, but the path to recognition was often discouraging.

“I keep writing and doing experiments, things are getting better and better, but I never get any money for the work,” she recalled in an interview. “The critics said it will never be a drug. When I did these discoveries, my salary was lower than the technicians working next to me.”

Eventually, the University of Pennsylvania sublicensed the patent to Cellscript, a biotech company in Wisconsin, much to the dismay of Weissman and Karikó, who had started their own company to try to commercialize the discovery. Moderna and BioNTech later would each pay $75 million to Cellscript for the RNA modification patent, Karikó said. Though unhappy with her treatment at Penn, she remained there until 2013 — partly because her daughter, Susan Francia, was making a name for herself on the school’s rowing team. Francia would go on to win two Olympic gold medals in the sport. Karikó is now a senior officer at BioNTech.

In addition to RNA modification and the lipid nanoparticle, the third key contribution to the mRNA vaccines — as well as those made by Novavax, Sanofi and Johnson & Johnson —- is the bioengineered protein developed by Graham and his collaborators. It has proved in tests so far to elicit an immune response that could prevent the virus from causing infections and disease.

The protein design was based on the observation that so-called fusion proteins — the pieces of the virus that enable it to invade a cell — are shape-shifters, presenting different surfaces to the immune system after the virus fuses with and infects cells. Graham and his colleagues learned that antibodies against the post-fusion protein are far less effective at stopping an infection.

The discovery arose in part through Graham’s studies of a 54-year-old tragedy — the failed 1966 trial of an NIH vaccine against respiratory syncytial virus, or RSV. In a clinical trial, not only did that vaccine fail to protect against the common childhood disease, but most of the 21 children who received it were hospitalized with acute allergic reactions, and two died.

About a decade ago, Graham, now deputy director of NIH’s Vaccine Research Center, took a new stab at the RSV problem with a postdoctoral fellow, Jason McLellan. After isolating and obtaining three-dimensional models of the RSV’s fusion protein, they worked with Chinese scientists to identify an appropriate neutralizing antibody against it.

“We were sitting in Xiamen, China, when Jason got the first image up on his laptop, and I was like, oh my God, it’s coming together,” Graham recalled. The prefusion antibodies they discovered were 16 times more potent than the post-fusion form contained in the faulty 1960s vaccine.

Two 2013 papers the team published in Science earned them a runner-up prize in the prestigious journal’s Breakthrough of the Year award. Their papers, which showed it was possible to plan and create a vaccine at the microscopic structural level, set the NIH’s Vaccine Research Center on a path toward creating a generalizable, rapid way to design vaccines against emerging pandemic viruses, Graham said.

In 2016, Graham, McLellan and other scientists, including Andrew Ward at the Scripps Research Institute, advanced their concept further by publishing the prefusion structure of a coronavirus that causes the common cold and a patent was filed for its design by NIH, Scripps and Dartmouth — where McLellan had set up his own lab. NIH and the University of Texas — where McLellan now works — filed an additional patent this year for a similar design change in the virus that causes COVID-19.

Graham’s NIH lab, meanwhile, had started working with Moderna in 2017 to design a rapid manufacturing system for vaccines. In January, they were preparing a demonstration project, a clinical trial to test whether Graham’s protein design and Moderna’s mRNA platform could be used to create a vaccine against Nipah, a deadly virus spread by bats in Asia.

Their plans changed rapidly when they learned on Jan. 7 that the epidemic of respiratory disease in China was being caused by a coronavirus.

“We agreed immediately that the demonstration project would focus on this virus” instead of Nipah, Graham said. Moderna produced a vaccine within six weeks. The first patient was vaccinated in an NIH-led clinical study on March 16; early results from Moderna’s 30,000-volunteer late-stage trial showed it was nearly 95% effective at preventing COVID-19.

Although other scientists have advanced proposals for what may be even more potent vaccine antigens, Graham is confident that carefully designed vaccines using nucleic acids like RNA reflect the future of new vaccines. Already, two major drug companies are doing advanced clinical trials for RSV vaccines based on the designs his lab discovered, he said.

In a larger sense, the pandemic could be the event that paves the way for better, perhaps cheaper and more plentiful vaccines.

“It’s a silver lining, but I think we are definitely pushing forward the way everyone is thinking about vaccines,” said Michael Farzan, chair of the department of immunology and microbiology at Scripps Research’s Florida campus. “Certain techniques that have been waiting in the wings, under development but never achieving the kind of funding they needed for major tests, will finally get their chance to shine.”

Under a 1980 law, the NIH will obtain no money from the coronavirus vaccine patent. How much money will eventually go to the discoverers or their institutions isn’t clear. Any existing licensing agreements haven’t been publicized; patent disputes among some of the companies will likely last years. HHS’ big contracts with the vaccine companies are not transparent, and Freedom of Information Act requests have been slow-walked and heavily redacted, said Duke University law professor Arti Rai.

Some basic scientists involved in the enterprise seem to accept the potentially lopsided financial rewards.

“Having public-private partnerships is how things get done,” Graham said. “During this crisis, everything is focused on how can we do the best we can as fast as we can for the public health. All this other stuff is going to have to be figured out later.”

“It’s not a good look to become extremely wealthy off a pandemic,” McLellan said, noting the big stock sales by some vaccine company executives after they received hundreds of millions of dollars in government assistance. Still, “the companies should be able to make some money.”

For Graham, the lesson of the coronavirus vaccine response is that a few billion dollars a year spent on additional basic research could prevent a thousand times as much loss in death, illness and economic destruction.

“Basic research informs what we do, and planning and preparedness can make such a difference in how we get ahead of these epidemics,” he 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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SANTA CRUZ, Calif. — For Tom Davis, being told by the state this week that he must close his Pacific Edge Climbing Gym for the third time in six months is beyond frustrating. The first time the rock-climbing gym and fitness center shut down, co-owners Davis and Diane Russell took out a government loan to pay employees. The second time, they were forced to lay everyone off — themselves included. Now, as they face another surge of COVID cases across California, he fears he may lose the business for good.

California’s ping-ponging approach to managing the virus — twice reopening large portions of the service-sector economy only to shut them again — doesn’t seem just or reasonable, Davis said. As of Tuesday evening, he was planning to defy the order, keeping the gym open but with additional restrictions on capacity.

“The government is essentially saying, ‘We’re just picking you to personally go bankrupt and all the people who work with you,’” said Davis. “Nobody can afford to live in Santa Cruz on unemployment.”

It’s a grim time in the pandemic. California has surpassed 1 million cases of COVID-19 and 94% of Californians — more than 37.7 million people — live in a county considered to have “widespread” infection. Santa Cruz is one of 41 California counties now under the most restrictive orders in the state’s four-tiered COVID blueprint for determining which businesses can stay open amid the pandemic, and under what proscriptions.

Until Monday, Santa Cruz was in the red tier — the second-most restrictive — meaning Pacific Edge could be open at 10% capacity. Now, its owners are being told to close entirely.

For business owners and workers, a backward slide on the blueprint represents yet another financial setback in a bleak year, leaving some residents angry, exasperated and wondering if this is really the best the state can do.

It’s a question reverberating nationwide as every state experiences a deadly rise in COVID cases and a growing number of hospitals say they are simply out of beds. Among states, California is performing relatively well, ranking 39th in cases per capita and 32nd in deaths, according to a New York Times tracker.

But even here, the virus is too pervasive in its spread — and the public health infrastructure too enfeebled — to make the reopening of businesses and schools an easy proposition. Some experts say that during a pandemic, when the virus is everywhere, the push and pull California businesses are enduring may be what success looks like in much of the U.S. for months to come.

“The yo-yo nature of this is a feature of the pandemic,” said Dr. Ashish Jha, dean of the School of Public Health at Brown University. “And in fact, when I look at really successful countries like South Korea, Taiwan and New Zealand, they all have a yo-yo feeling to them.”

Experts say a crucial factor in being able to reopen safely is getting cases low enough that time-tested public health tools like quarantines and contact tracing can work. Most U.S. hot spots, including broad swaths of California, have never achieved those low levels.

In California, Gov. Gavin Newsom, like many other governors, is trying to thread the needle, to keep cases to a minimum while also allowing many businesses to remain open. It’s a sensitive equation, said Dr. Aimee Sisson, public health officer for Yolo County.

“It’s really hard to dial in the balances of getting our economy going again, which is important for public health, and maintaining our health, which is important for the economy.”

And while California is doing better than many other states, said Cameron Kaiser, the health officer for Riverside County, it’s certainly not cause for celebration. “At this point we’re clearly doing better, but our trends are not good either. When you’re talking about the relative impact of different tragedies, I’m not sure you’d call that a success.”

Even as it frustrates some residents, California’s tiered reopening system has won praise nationally. The system draws on three COVID metrics to guide restrictions: new cases per population; the share of people tested for the coronavirus who are positive; and, in larger counties, an equity measure to ensure cases are low across the county, including in high-risk communities. Under revised guidelines released this week, county tier assignments can change from week to week — and more than once a week if data indicates a county is losing ground.

“We think it’s a best practice nationally and globally,” said Dr. Tom Frieden, a former director of the Centers for Disease Control and Prevention. “This is not about closure — this is about adjusting what is open when.”

Still, the state blueprint isn’t perfect, health officers say. In its early stages, there were inconsistencies around which businesses could stay open. For example, nail salons were treated differently from hair salons, though the exposure conditions are fairly similar. The state has taken feedback, said Sisson, and tried to make improvements.

And perhaps the biggest weakness is how little data exists to determine which businesses present the greatest risks for exposure and transmission, said Sisson and other health officers. While restaurants and bars are broadly considered high-risk because people remove their masks while eating and drinking, not much is known about viral spread at places like gyms and movie theaters, where it’s possible to reduce occupancy and wear masks.

That’s part of what frustrates Davis in Santa Cruz. Pacific Edge has reduced occupancy to just 30 people in the sprawling old factory building and instituted a range of protective measures. “Compare that to Costco. I honestly believe we are just as safe if not safer than other businesses,” Davis said.

Measuring California’s success in navigating the pandemic depends on what your goal is, said Marm Kilpatrick, an infectious disease researcher at the University of California-Santa Cruz who has been advising local government and businesses, including Pacific Edge, on reopening. The state has prioritized both keeping businesses open and keeping cases down, which means neither can be done perfectly.

Still, he’s not sure the whiplash of openings and closings is the best the state can do. He worries the tiered system may inadvertently send the wrong signals: Again and again, public health officials have watched in dismay as residents whose counties move into less-restrictive tiers revert to socializing in large groups and shedding basic safety protocols like masks and social distancing — followed by a dangerous upsurge in infections and hospitalizations.

Dr. Mark Ghaly, the state’s Health and Human Services secretary, has acknowledged as much, stressing that cases are linked to both social gatherings and businesses. Ultimately, he said on Monday, the state is taking a “dual approach” that includes changes to business practices, and asking individuals to be disciplined in wearing masks outside the home, regularly sanitizing hands, staying 6 feet apart, and socializing outdoors and in small gatherings.

Meanwhile, the holiday season looms. The most recent spike in cases directly correlates to Halloween, several health officers said, just as previous spikes were linked to Memorial Day, the Fourth of July and Labor Day. With Thanksgiving, Christmas and New Year’s on the horizon, officials wonder whether they might have to recommend a farther-reaching stay-at-home order to keep cases under control.

“I’m very worried about Thanksgiving,” said Dr. Chris Farnitano, health officer for Contra Costa County. “The tradition of so many families is to get together with their extended families, and that means gatherings with groups of people, and that’s where the virus wants to spread.”

In addition, Farnitano said, given the realities of commerce and travel, what happens in other states affects California. “Having other states with the same restrictions would help California,” he said.

What’s really needed, several public health officials said, is a coordinated national message and strategy.

“I’m hoping we’re gonna have the new president come in and take the reins very firmly,” said Steffanie Strathdee, associate dean of global health at UC-San Diego. “He has the right people around him advising him. But, by then, winter will be half over and we’re going to be facing 400,000 deaths. Digging ourselves out of that mess is going to take awhile.”

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

Nurse Leslie McKamey has gotten used to the 16-hour shifts, to skipping lunch, to the nightly ritual of throwing all her clothes in the laundry and showering as soon as she walks through the door to avoid potentially infecting her children. She’s even grown accustomed to triaging COVID patients, who often arrive at the emergency room so short of breath they struggle to describe their symptoms.

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But despite the trauma and exhaustion of the past eight months, she was shocked when North Dakota Gov. Doug Burgum said last week that health care workers who test positive for the coronavirus but do not display symptoms could still report to work. The order, in line with CDC guidance for mitigating staff shortages, would allow asymptomatic health workers who test positive to work only in COVID units, and treat patients who already have the virus.

But many feel the idea endangers the workers and their colleagues. It comes as North Dakota faces one of the worst outbreaks of COVID-19 and grapples with health care staff shortages.

“We’re worried about somebody dying, frankly, because we couldn’t get to them in time,” said McKamey, an emergency room registered nurse in Bismarck.

According to data from the COVID Tracking Project, more than 9,400 North Dakotans tested positive for COVID-19 last week alone. About 1 in 12 North Dakota residents have been infected with the virus; nearly 1 in 1,000 have died. In early November, the North Dakota Department of Health reported that there were only 12 open ICU beds in the state.

McKamey said Burgum’s order goes against everything she’s been taught as a nurse.

“If hospital administrators start forcing COVID-positive staff to go to work, it’s going to be very scary. We’re trained to do no harm, and asking COVID-positive, asymptomatic nurses to return to work is putting patients at risk. It’s putting fellow staff members at risk.”

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Nine months into the pandemic, it’s clear health care workers already face increased risks. Lost on the Frontline, a joint effort by The Guardian and KHN, is investigating the deaths of 1,375 health care workers who appear to have died of COVID-19 since the start of the pandemic. Nearly a third of those health care workers were nurses.

McKamey described long shifts in an emergency room that has begun taking on patients overnight because other wards of the hospital did not have the capacity to admit them. Nurses pick up extra shifts to cover for colleagues who have gotten sick and take on multiple critical patients at once.

It is a scene playing out in hospitals across the country, as the coronavirus spreads unabated. As of Monday, more than 11 million people in the United States had been infected with the virus, with health officials reporting 180,000 new infections in a single day. And the country is bracing for another milestone: It will soon surpass a quarter-million deaths from COVID-19.

Health care workers are overwhelmed and exhausted. According to a recent survey from the National Nurses United, more than 70% of hospital nurses said they were afraid of contracting COVID-19 and 80% feared they might infect a family member. More than half said they struggled to sleep and 62 reported feeling stressed and anxious. Nearly 80% said they were forced to reuse single-use PPE, like N95 respirators.

Inaction at the state and federal levels have left many health care workers feeling abandoned. When Gov. Burgum issued the order that infected but asymptomatic nurses could report to work in COVID units, North Dakota had not implemented any kind of statewide mask mandate, despite expert guidance that such a measure could significantly reduce transmission of the virus.

Tessa Johnson is a registered nurse at a Bismarck nursing home and president of the North Dakota Nurses Association, which issued a statement last week denouncing Burgum’s order that infected nurses continue to work.

She said the state could have done much more to ensure patients don’t become infected in the first place. “We’ve asked and asked and asked for a mask mandate, and that hasn’t happened,” she said Thursday.

On Friday night, Burgum did an about-face and issued a mask mandate, ordering individuals to cover their faces when inside businesses, indoor public settings and outdoor public settings where physical distancing may be impossible.

“Our doctors and nurses heroically working on the front lines need our help, and they need it now,” he said in a press statement.

Still, Johnson said there’s a disconnect between what health care workers are experiencing inside North Dakota’s health facilities, and how the general population perceives the virus. And that even before Burgum’s comments, some of her colleagues felt they had to choose between taking all precautions and limited time off. “One of my closest friends, also a health care worker, said to me the other day, ‘There’s no way I will ever get tested unless I’m very sick, because I don’t want to use my paid leave.’”

McKamey, the ER nurse, said she hasn’t had time to process the stress of the past several months. She’s focused on staying healthy, gearing up for what she anticipates will be a difficult winter and keeping her patients alive. “We are willing to break our backs and work as hard as we physically can,” McKamey said. “But then to ask us to come in as a potential infectious source is just stunning.”

As the novel coronavirus emerged in the news in January, Sarah Keeley was working as a medical scribe and considering what to do with her biology degree.

By February, as the disease crept across the U.S., Keeley said she found her calling: a career in public health. “This is something that’s going to be necessary,” Keeley remembered thinking. “This is something I can do. This is something I’m interested in.”

In August, Keeley began studying at the University of Illinois at Urbana-Champaign to become an epidemiologist.

Public health programs in the United States have seen a surge in enrollment as the coronavirus has swept through the country, killing more than 246,000 people. As state and local public health departments struggle with unprecedented challenges — slashed budgets, surging demand, staff departures and even threats to workers’ safety — a new generation is entering the field.

Among the more than 100 schools and public health programs that use the common application — a single admissions application form that students can send to multiple schools — there was a 20% increase in applications to master’s in public health programs for the current academic year, to nearly 40,000, according to the Association of Schools and Programs of Public Health.

Some programs are seeing even bigger jumps. Applications to Brown University’s small master’s in public health program rose 75%, according to Annie Gjelsvik, a professor and director of the program.

Demand was so high as the pandemic hit full force in the spring that Brown extended its application deadline by over a month. Seventy students ultimately matriculated this fall, up from 41 last year.

“People interested in public health are interested in solving complex problems,” Gjelsvik said. “The COVID pandemic is a complex issue that’s in the forefront every day.”

It’s too early to say whether the jump in interest in public health programs is specific to that field or reflects a broader surge of interest in graduate programs in general, according to those who track graduate school admissions. Factors such as pandemic-related deferrals and disruptions in international student admissions make it difficult to compare programs across the board.

Magnolia E. Hernández, an assistant dean at Florida International University’s Robert Stempel College of Public Health and Social Work, said new student enrollments in its master’s in public health program grew 63% from last year. The school has especially seen an uptick in interest among Black students, from 21% of newly admitted students last fall to 26.8% this year.

Kelsie Campbell is one of them. She’s part Jamaican and part British. When she heard in both the British and American media that Black and ethnic minorities were being disproportionately hurt by the pandemic, she wanted to focus on why.

“Why is the Black community being impacted disproportionately by the pandemic? Why is that happening?” Campbell asked. “I want to be able to come to you and say ‘This is happening. These are the numbers and this is what we’re going to do.’”

The biochemistry major at Florida International said she plans to explore that when she begins her MPH program at Stempel College in the spring. She said she hopes to eventually put her public health degree to work helping her own community.

“There’s power in having people from your community in high places, somebody to fight for you, somebody to be your voice,” she said.

Public health students are already working on the front lines of the nation’s pandemic response in many locations. Students at Brown’s public health program, for example, are crunching infection data and tracing the spread of the disease for the Rhode Island Department of Health.

Some students who had planned to work in public health shifted their focus as they watched the devastation of COVID-19 in their communities. In college, Emilie Saksvig, 23, double-majored in civil engineering and public health. She was supposed to start working this year as a Peace Corps volunteer to help with water infrastructure in Kenya. She had dreamed of working overseas on global public health.

The pandemic forced her to cancel those plans, and she decided instead to pursue a master’s degree in public health at Emory University.

“The pandemic has made it so that it is apparent that the United States needs a lot of help, too,” she said. “It changed the direction of where I wanted to go.”

These students are entering a field that faced serious challenges even before the pandemic exposed the strains on the underfunded patchwork of state and local public health departments. An analysis by AP and KHN found that since 2010, per capita spending for state public health departments has dropped by 16%, and for local health departments by 18%. At least 38,000 state and local public health jobs have disappeared since the 2008 recession.

And the workforce is aging: Forty-two percent of governmental public health workers are over 50, according to the de Beaumont Foundation, and the field has high turnover. Before the pandemic, nearly half of public health workers said they planned to retire or leave their organizations for other reasons in the next five years. Poor pay topped the list of reasons. Some public health workers are paid so little that they qualify for public aid.

Brian Castrucci, CEO of the de Beaumont Foundation, which advocates for public health, said government public health jobs need to be a “destination job” for top graduates of public health schools.

“If we aren’t going after the best and the brightest, it means that the best and the brightest aren’t protecting our nation from those threats that can, clearly, not only devastate from a human perspective, but from an economic perspective,” Castrucci said.

The pandemic put that already-stressed public health workforce in the middle of what became a pitched political battle over how to contain the disease. As public health officials recommended closing businesses and requiring people to wear masks, many, including Dr. Anthony Fauci, the U.S. government’s top virus expert, faced threats and political reprisals, AP and KHN found. Many were pushed out of their jobs. An ongoing count by AP/KHN has found that more than 100 public health leaders in dozens of states have retired, quit or been fired since April.

Those threats have had the effect of crystallizing for students the importance of their work, said Patricia Pittman, a professor of health policy and management at George Washington University’s Milken Institute School of Public Health.

“Our students have been both indignant and also energized by what it means to become a public health professional,” Pittman said. “Indignant because many of the local and the national leaders who are trying to make recommendations around public health practices were being mistreated. And proud because they know that they are going to be part of that front-line public health workforce that has not always gotten the respect that it deserves.”

Saksvig compared public health workers to law enforcement in the way they both have responsibility for enforcing rules that can alter people’s lives.

“I feel like before the coronavirus, a lot of people didn’t really pay attention to public health,” she said. “Especially now when something like a pandemic is happening, public health people are just on the forefront of everything.”

KHN Midwest correspondent Lauren Weber and KHN senior correspondent Anna Maria Barry-Jester contributed to this report.

This story is a collaboration between The Associated Press 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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For years, Sharad Acharya’s frequent hikes in the mountains outside Denver would leave him short of breath. But a real wake-up call came three years ago when he suddenly struggled to breathe while walking through an airport.

An electrocardiogram revealed that Acharya, a Nepali American from Broomfield, Colorado, had an irregular heartbeat on top of the high blood pressure he already knew about. He had to immediately undergo triple bypass surgery and get seven stents.

Acharya, now 54, thought of his late father and his many uncles who have had heart problems.

“It’s part of my genetics, for sure,” he said.

South Asian Americans — people with roots in Nepal, India, Pakistan, Sri Lanka, Bangladesh, Bhutan and the Maldives — have a disproportionately higher risk of heart disease and other cardiovascular ailments. Worldwide, South Asians account for 60% of all heart disease cases, even though — at 2 billion people — they make up only a quarter of the planet’s population.

In the United States, there’s increasing attention on these risks for Americans of South Asian descent, a growing population of about 5.4 million. Health care professionals attribute the problem to a mix of genetic, cultural and lifestyle influences — but researchers are advocating for more resources to fully understand it.

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Rep. Pramila Jayapal (D-Wash.) is sponsoring legislation that would direct $5 million over the next five years toward research into heart disease among South Asian Americans and raising awareness of the issue. The bill passed the U.S. House in September and is up for consideration in the Senate.

The issue could gain more attention after Sen. Kamala Harris (D-Calif.) becomes the nation’s first vice president with South Asian lineage. Harris’ mother, Shyamala Gopalan, moved from India to the U.S. in 1958 to attend graduate school. Gopalan, a breast cancer researcher, died in 2009 of colon cancer.

A 2018 study for the American Heart Association found South Asian Americans are more likely to die of coronary heart disease than other Asian Americans and non-Hispanic white Americans. The study pointed to their high incidences of diabetes and prediabetes as risk factors, as well as high waist-to-hip ratios. People of South Asian descent have a higher tendency to gain visceral fat in the abdomen, which is associated with insulin resistance. They also were found to be less physically active than other ethnic groups in the U.S.

One of the nation’s largest undertakings to understand these risks is the Mediators of Atherosclerosis in South Asians Living in America study, which began in 2006. The MASALA researchers, from institutions such as Northwestern University and the University of California-San Francisco, have examined more than 1,100 South Asian American men and women ages 40-79 to better understand the prevalence and outcomes of cardiovascular disease. They stress that high blood pressure and diabetes are common in the community, even for people at normal weights.

That’s why, said Dr. Alka Kanaya, MASALA’s principal investigator and a professor at UCSF, South Asians cannot rely on traditional body mass index metrics, because BMI numbers considered normal could provide false reassurance to those who might still be at risk.

Kanaya recommends cardiac CT scans, which she said help identify high-risk patients, those who need to make more aggressive lifestyle changes and those who may need preventive medication.

Another risk factor, this one cultural, is diet. Some South Asian Americans are vegetarians, though it’s often a grain-heavy diet reliant on rice and flatbread. The AHA study found risks in such diets, which are high in refined carbohydrates and saturated fat.

“We have to understand the cultural nuances [with] an Indian vegetarian diet,” said Dr. Ronesh Sinha, author of “The South Asian Health Solution” and an internal medicine physician. “That means something totally different than … a Westerner who’s going to be consuming a lot of plant-based protein and tofu, eating lots of salads and things that typical South Asians don’t.”

But getting South Asians to change their eating habits can be challenging, because their culture expresses hospitality and love through food, according to Arnab Mukherjea, an associate professor of health sciences at California State University-East Bay. “One of the things South Asians tend to take a lot of pride in is transmitting cultural values and norms knowledge to the next generation,” Mukherjea said.

Acharya’s health is still an issue. He said he had to get four more stents this year, and the surgeries have put pressure on his family. But he’s breathing well, watching what he eats — and once more exploring his beloved mountains. (Eli Imadali for KHN)

The intergenerational transmission goes both ways, according to MASALA researchers. Adult, second-generation South Asian Americans might be the key to helping those in the first generation who are resistant to change adopt healthier habits, according to Kanaya.

In the San Francisco Bay Area, El Camino Hospital’s South Asian Heart Center is one of the nation’s leading centers for educating the community. Its three locations are not far from Silicon Valley tech giants, which employ many South Asian Americans.

The center’s medical director, Dr. César Molina, said the center treats many relatively young patients of South Asian descent without typical risk factors for cardiovascular disease.

“It was like the typical 44-year-old engineer with a spouse and two kids showing up with a heart attack,” he said.

The South Asian Health Center helps patients make lifestyle changes through meditation, exercise, diet and sleep. The nearby Palo Alto Medical Foundation’s Prevention and Awareness for South Asians program and the Stanford South Asian Translational Heart Initiative provide medical support for the community. Even patients in the later stages of heart disease can be helped by lifestyle changes, Sinha said.

Dr. Kevin Shah, a University of Utah cardiologist who co-authored the AHA study, said people with diabetes, hypertension and obesity are also at higher risk of COVID-19 complications so should now especially work to improve their cardiovascular health and fitness.

In Colorado, Acharya’s health is still an issue. He said he had to get four more stents this year, and the surgeries have put pressure on his family. But he’s breathing well, watching what he eats — and once more exploring his beloved mountains.

“Nowadays, I feel very, very good,” he said. “I’m hiking a lot.”

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The coronavirus pandemic has killed more than 246,000 people in the U.S., but it also has left hundreds of thousands of others grieving, and often feeling as if they have been robbed of the usual methods for dealing with the loss. For every person who dies of the virus, nine close family members are affected, researchers estimate. In addition to deep sadness, the ripple effects may linger for years as survivors deal with traumatic stress, anxiety, guilt and regret.

As the holidays approach, millions of people will be experiencing these losses afresh, as well as disruptions to comforting routines and beloved traditions.

Judith Graham, author of KHN’s Navigating Aging column, hosted a discussion on these unprecedented losses and dealing with the bereavement on Facebook Live on Monday. She was joined by Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine in New York City, and Diane Snyder-Cowan, leader of the bereavement professionals steering committee of the National Council of Hospice and Palliative Professionals.

Betial Asmerom, a fourth-year medical student at the University of California-San Diego, didn’t have the slightest interest in becoming a doctor when she was growing up.

As an adolescent, she helped her parents — immigrants from Eritrea who spoke little English — navigate the health care system in Oakland. She saw physicians who were disrespectful to her family and uncaring about treatment for her mother’s cirrhosis, hypertension and diabetes.

“All of those experiences actually made me really dislike physicians,” Asmerom said. “Particularly in my community, the saying is, ‘You only go to the doctor if you’re about to die.’”

But that changed when she took a course in college about health disparities. It shocked her and made her realize that what her Eritrean family and friends saw was happening to other communities of color, too. Asmerom came to believe that as a doctor she could help turn things around.

Faculty members and student activists around the country have long called for medical schools to increase the number of students and instructors from underrepresented backgrounds to improve treatment and build inclusivity. But to identify racism’s roots and its effects in the health system, they say, fundamental changes must be made in medical school curriculums.

Asmerom is one of many crusaders seeking robust anti-racist education. They are demanding that the schools eliminate the use of race as a diagnostic tool, recognize how systemic racism harms patients and reckon with some of medicine’s racist history.

This activism has been ongoing — White Coats for Black Lives (WC4BL), a student-run organization fighting racism in medicine, grew out of the 2014 Black Lives Matter protests. But now, as with countless other U.S. institutions since the killing of George Floyd in Minneapolis in May, medical schools and national medical organizations are under even greater pressure to take concrete action.

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Debunking Race as a Diagnostic Tool

For many years, medical students were taught that genetic differences among the races had an effect on health. But in recent years, studies have found race does not reliably reflect that. The National Human Genome Research Institute notes very little genetic variation among races, and more differences among people within each race. Because of this, more physicians are embracing the idea that race is not an intrinsic biological difference but instead a social construct.

Dr. Brooke Cunningham, a physician and sociologist at the University of Minnesota Medical School, said the medical community is conflicted about abandoning the idea of race as biological. It’s baked into the way doctors diagnose and measure illness, she said. Some physicians claim it is useful to take race into account when treating patients; others argue it leads to bias and poor care.

Those views have led to a variety of false beliefs, including that Black people have thicker skin, their blood coagulates more quickly than white people’s or they feel less pain.

When race is factored into medical calculations, it can lead to less effective treatments and perpetuate race-based inequities. One such calculation estimates kidney function (eGFR, or the estimated glomerular filtration rate). The eGFR can limit Black patients’ access to care because the number used to denote Black race in the formula provides a result suggesting kidneys are functioning better than they are, researchers recently reported in the New England Journal of Medicine. Among another dozen examples they cite is a formula that obstetricians use to determine the probability of a successful vaginal birth after a cesarean section, which disadvantages Black and Hispanic patients, and an adjustment for measuring lung capacity using a spirometer, which can cause inaccurate estimates of lung function for patients with asthma or chronic obstructive pulmonary disease.

In the face of this research, medical students are urging schools to rethink curricula that treat race as a risk factor for disease. Briana Christophers, a second-year student at Weill Cornell Medical College in New York, said it makes no sense that race would make someone more susceptible to disease, although economic and social factors play a significant role.

Naomi Nkinsi, a third-year student at the University of Washington School of Medicine in Seattle, recalled sitting in a lecture — one of five Black students in the room — and hearing that Black people are inherently more prone to disease.

“It was very personal,” Nkinsi said. “That’s my body, that’s my parents, that’s my siblings. Every time I go into a doctor’s office now, I’ll be reminded that they’re not just considering me as a whole person but as somehow physically different than all other patients just because I have more melanin in my skin.”

Nkinsi helped in a successful campaign to exclude race from the calculation of eGFR at UW Medicine, joining a small number of other health systems. She said the achievement — announced officially in late May — was largely due to Black students’ tireless efforts.

Acknowledging Racism’s Adverse Effects on Health

The Liaison Committee on Medical Education, the official accrediting body for medical schools in the U.S. and Canada, said faculty must teach students to recognize bias “in themselves, in others, and in the health care delivery process.” But the LCME does not explicitly require accredited institutions to teach about systemic racism in medicine.

This is what students and some faculty want to change. Dr. David Acosta, the chief diversity and inclusion officer of the American Association of Medical Colleges, said about 80% of medical schools offer either a mandatory or elective course on health disparities. But little data exists on how many schools teach students how to recognize and fight racism, he said.

An anti-racist curriculum should explore ways to mitigate or eliminate racism’s harm, said Rachel Hardeman, a health policy professor at the University of Minnesota.

“It’s thinking about how do you infuse this across all of the learning in medical education, so that it’s not this sort of drop in the bucket, like, one-time thing,” she said. Above all, the courses that delve into systemic racism need to be required, Hardeman said.

Edwin Lindo, a lecturer at the University of Washington School of Medicine, said medicine should embrace an interdisciplinary model, allowing sociologists or historians to lecture on how racism harms health.

Acosta said the AAMC has organized a committee of experts to develop an anti-racism curriculum for every step of medical education. They hope to share their work publicly this month and talk to the LCME about developing and implementing these standards.

“Our next work is how do we persuade and influence the LCME to think about adding anti-racist training in there,” Acosta said.

Recognizing Racism in Medical Education’s Past and Present

Activists especially want to see their institutions recognize their own missteps, as well as the racism that has accompanied past medical achievements. Dereck Paul, a student at the University of California-San Francisco School of Medicine, said he wants every medical school to include lectures on people like Henrietta Lacks, the Black woman who was dying of cancer when cells were taken without her consent and used to develop cell lines that have been instrumental in medical research.

Asmerom said she wants to see faculty acknowledge medicine’s racist past in lessons. She cited an introductory course on anatomy at her school that failed to note that in the past, as scientists sought to study the body, Blacks and other minorities were mistreated. “It’s like, OK, but you’re not going to talk about the fact that Black bodies were taken out of graves in order to have bodies to use for anatomy lab?” she said.

While Asmerom is glad to see her medical school actively listening to students, she feels administrators need to own up to their mistakes in the recent past. “There needs to be an admission of how you perpetuated anti-Black racism at this institution,” Asmerom said.

Asmerom, who is one of the leaders of the UCSD Anti-Racism Coalition, said the administration has responded favorably so far to the coalition’s demands to pour time and money into anti-racist initiatives. She’s cautiously hopeful.

“But I’m not going to hold my breath until I see actual changes,” she said.