The failure of California's infectious disease monitoring system for a stretch of at least 20 days in July and August triggered potentially deadly fallout that continues to reverberate across the state.
The fallout has been most severe in heavily populated counties, which rely primarily on a statewide electronic information system to guide their pandemic response. Local health departments couldn't clearly see where the coronavirus was spreading, dramatically slowing their efforts to trace and track new infections — leading to more death and disease, public health officials said.
Data system failures left California with a backlog of about 300,000 lab reports. Of those, nearly 15,000 turned out to be positive for COVID-19, according to state Health and Human Services Secretary Dr. Mark Ghaly.
"By the time you get those cases, even if you do your best to trace the contacts, you might be too late," said David Campos, deputy Santa Clara County executive. "Individuals who were positive didn't know they were positive and therefore may not have isolated and quarantined, so they ended up spreading the virus to other people unknowingly."
"It's frustrating and it's very scary," Campos added.
Gov. Gavin Newsom's administration is still struggling to fix the problems and prevent future breakdowns, even as school districts are weighing difficult decisions about sending kids back into classrooms, businesses are contending with repeated openings and closures, and the state is working to tamp down rising infections — all life-or-death scenarios that rely on accurate COVID-19 data.
"The whole key to lab testing is the speed with which it's done," said Bruce Pomer, a public health expert and chief lobbyist for the California Association of Public Health Laboratory Directors. "The system is slower than it should be, and it means more people are going to get sick and die. The lifeblood of public health is data."
Ghaly said he and Newsom first became aware of the magnitude of the state's data failures on Aug. 3, though the California Department of Public Health had alerted counties about problems as early as July 15.
By the time Ghaly said he was informed, the state infectious disease database — the California Reportable Disease Information Exchange, known as CalREDIE — had experienced a series of breakdowns, including an outage that prevented electronic lab reports from flowing to counties, and a lapsed security certificate needed by the commercial lab giant Quest Diagnostics to transmit records. The problems did not affect death and hospitalization data.
The state says it has since cleared the backlog.
"It is clear that CalREDIE simply does not have the capacity to scale as we had hoped," Newsom said following the resignation of the state's top public health officer, Dr. Sonia Angell, after the data system collapse. "We will reform that."
California isn't alone in its COVID-related data problems. Iowa recently discovered a major flaw that backdated thousands of test results; North Carolina learned that another commercial testing company, LabCorp, had been including out-of-state tests in its data since April; and Alabama found that some labs were not properly sending test results to the state.
But the breakdown in California stands out for its size and consequence.
In Santa Clara County, public health officials felt they finally had resources to aggressively track people who might have been exposed to the virus.
But a contact tracer for the county who declined to be named confirmed that the number of cases trickling in from the state data system was so slow by late July that tracking operations had nearly ground to a halt.
Santa Clara County did not receive data on many residents who tested positive during that time. Dr. Sara Cody, the county's health officer, said earlier this month that she had discovered missing cases of infected people as far back as July 8.
"If we can't get the data from the state system, we're all kind of flying blind," said Contra Costa County health officer Dr. Chris Farnitano. "Then our case investigation and contact tracing efforts aren't very effective."
Contra Costa and other counties are still digging themselves out of the data failures — and working to dramatically expand testing. But public health officials worry that an influx of tests will overwhelm the system, once again undercutting counties' ability to adequately respond to the pandemic.
"This really puts our whole strategy at risk," Farnitano said. "We're looking to start doing in-person school at some point in the fall, if conditions allow, but that would add a whole bunch more tests that need to perform in the system."
Mendocino County provides a glimpse of how vital real-time data is for an aggressive response. Since the beginning of the coronavirus pandemic, the sprawling rural Northern California county has kept up its old-school strategy of tracking infectious diseases by telephone and fax machine, providing a reliable flow of COVID-19 data even as the state system crashed.
That meant local officials could see that cases were spiking in the county even as state data suggested it was faring relatively well, keeping the county off the state watchlist. Mendocino County health officer Dr. Noemi Doohan nonetheless decided to proactively shut down high-risk businesses like bars without being ordered to by the state.
"I wanted to retain local control for our county, and I also wanted to do the right thing," Doohan said.
The county has since been added to the state's watchlist, which means that nine schools that had planned to hold in-classroom instruction now either have to move teaching online or seek permission to open from the county and state.
In Riverside County, where contact tracing efforts were also hampered by the data failure, public health director Kim Saruwatari said she is at the mercy of the state data system. She said fax-and-phone data collection efforts like those used in Mendocino County are not possible for larger counties like hers.
"The volume of data that we have coming in, it would take an army to receive all the reports and enter them into a system separately," she said.
Saruwatari and other county officials had been asking for state assistance to identify potential data discrepancies in the weeks before the state took action. During that time, state health officials knew there were issues but appeared to be unaware of the magnitude of the data failures and were slow to respond, some county officials said.
"We can't get a hold of anyone" at the California Department of Public Health to help, wrote Wendy Hetherington, chief epidemiologist for Riverside County, in an email to a state epidemiologist while trying to figure out why she couldn't access critical data.
"I am not aware of any specific issues, however we are starting to notice problems … because the files are becoming too large for our computers to obtain in this manner," the state epidemiologist responded.
Kate Folmar, a spokesperson for the California Health and Human Services Agency, said in a statement that the administration has "accelerated a replacement project" to ensure accurate, timely COVID-19 data. A state bid for the project went out last week, Folmar said, and Ghaly said this week that the new system is weeks away from being ready.
For years, the state has patched holes in its communicable disease information system, which was designed 20 years ago and also tracks other infectious diseases, including the flu.
Local health officials, who blame the long-standing lack of investment in public health infrastructure, describe it as clunky, slow and at times ineffectual. But COVID-19 has presented an even bigger challenge than routine cases of measles, syphilis and meningitis.
"Our systems were not designed for this kind of pandemic threat," said Daniel Zingale, a former top Newsom adviser who led healthcare initiatives for previous Democratic and Republican administrations.
Data failures are likely to continue given the limitations of the system, and not only will they harm public health officials' ability to trace COVID-19 and prevent its spread, but they will also erode the community's confidence in public health efforts, Saruwatari and others said.
Already, comments on social media and at public meetings suggest that state failures have undercut trust in public health, especially in conservative-leaning regions like the Inland Empire and California's rural north.
"There's been a lot of the questioning of the data all along, like if somebody dies, did they really die of COVID-19," said Lake County health officer Dr. Gary Pace. "Now people that were prone to not trust us or not follow guidance before are even less likely to follow it."
Grifters are taking advantage of a genuine public health intervention that's crucial to stopping the spread of the novel coronavirus.
This article was published on Thursday, August 20, 2020 in Kaiser Health News.
By Julie Appleby State officials and federal agencies warn there's a new phone scam circulating: Some callers posing as COVID-19 contact tracers try to pry credit card or bank account information from unsuspecting victims.
The grifters apparently are taking advantage of a genuine public health intervention that's crucial to stopping the spread of the novel coronavirus: contact tracing.
In one such scheme, detailed in a warning from the Montana attorney general, scammers tell their victims, "I'm calling from your local health department to let you know that you have been in contact with someone who has COVID-19." Then they move in for the kill, asking for payment information "before we continue."
Don't fall for that, say public health advocates and officials. Legitimate contact tracers don't ask for payment or seek other financial information.
"That is absolutely not part of the process," said Crystal Watson, a senior scholar at the Johns Hopkins Center for Health Security. "No one should give bank information or credit card information."
Real contact tracers generally work for health departments. They contact COVID-positive patients to track symptoms; they help the people they call figure out how to isolate themselves from others until they clear the virus, and determine which friends, neighbors, colleagues or acquaintances they might have been near in the days just before or after they tested positive for the coronavirus. Those contacts, in turn, are sought out by the tracers, who are in a race against the clock, hoping to get those folks to quarantine as well.
This tried-and-true public health tool (along with hand-washing, wearing a mask in public and maintaining 6 feet of physical distance from people outside your household) is one of the few strategies available to slow the spread of the virus while scientists work on treatments and vaccines.
Legitimate contact tracing is being employed widely in some areas, such as the District of Columbia and Hawaii, and has been credited with helping countriessuch as New Zealand and Taiwan contain the virus.
But with this success also comes bad actors. The Federal Trade Commission, Department of Justice, and Department of Health and Human Services, as well as the Better Business Bureau and state law enforcement and health officials from across the nation, have issued consumer alerts about unscrupulous people not affiliated with health departments using phone calls, texts or emails to get personal information from those they scam.
What differentiates a real call from a fake one? For one thing, legitimate tracing calls might be preceded by a text message, notifying patients of an upcoming call from the health department. Then, in that initial call, the legitimate tracer seeks to confirm an address and birthdate, especially if you are the COVID-positive patient, Watson said.
"They ask about your identity to make sure you are the person they are trying to reach so they don't disclose potentially private information to the wrong person," Watson said.
The tracers can also help people who must isolate or quarantine by connecting them with resources, such as food or medicine delivery.
"Some can even provide you with a separate place to quarantine safely" if, for example, you live in a multigenerational house with no separate bathroom or bedroom in which to isolate, said Watson.
At the end of the call, the tracer may ask if they can call or text you in the coming days to check on how any symptoms may be progressing.
What should you watch for?
Be concerned if you get an initial text asking you to click on a link, which might be spam and could download software onto your phone, the FTC warned in May.
"Unlike a legitimate text message from a health department, which only wants to let you know they'll be calling, this message includes a link to click," the agency said.
Another clear red alert: being asked for your Social Security number. Contact tracers in most regions do not ask your immigration or financial status, either.
Also, watch out if any names of COVID patients are provided.
"An authorized contact tracer will not disclose the identity of the person who tested positive and is the starting place for that tracing effort," the Wisconsin attorney general's office said in a release warning consumers about scams. Another piece of advice: Do a little research before you respond.
"Anytime someone calls you for information, you should be concerned about who is calling," said Dr. Georges Benjamin, executive director of the American Public Health Association. "If they are legitimate, you can say 'Give me your name and phone number' and you can always call them back" after doing some checking.
Did the caller ID indicate the call was from a health department? Some states are including that information. For example, Virginia's calls are from the "VDH COVID Team." Call the health department if you have any questions.
"Scammers prefer to prey on individuals who may be more trusting, are alone, or may respond out of confusion or fear," Pennsylvania Secretary of Aging Robert Torres said in an Aug. 12 press release. "It's important that they stay alert about any contact from anyone identifying themselves as a contact tracer and do not provide personal information until they are sure the individual and information are legitimate."
And, finally, if you think you've been contacted — by phone, email or text — by a scammer, report it to agencies, such as your state attorney general's office.
"If you see something, say something," California Attorney General Xavier Becerra said in a recentconsumer alerthis office issued. "We are working to track these impostors."
As the coronavirus crisis deepened in April, Georgia officials circulated documents showing that to get through the next month, the state would need millions more masks, gowns and other supplies than it had on hand.
The projections, obtained by KHN and other organizations in response to public records requests, provide one of the clearest pictures of the severe PPE deficits states confronted while thousands fell ill from rising COVID-19 cases, putting health workers at risk.
Georgia on April 19 had 932,620 N95 respirator masks — one of the best protections for health workers against infection — and expected to burn through nearly 7 million within a month. It urgently needed to buy 1.4 million more, according to documentsobtained by the Brown Institute for Media Innovation and shared with KHN. For gowns, officials expected to go through 16.1 million in 30 days, a staggering amount compared with the 21,810 the state had at the time.
"Making progress with PPE needs. Biggest challenge now is gowns and we are working it," Georgia Emergency Management and Homeland Security Agency Director Homer Bryson wrote on April 19 to two of Gov. Brian Kemp's senior-most aides.
Even so, one day later, the first-term Republican governor announced he would begin to reopen the state's economy, including gyms, restaurants, hair salons, theaters and a host of other businesses.
"We have relied on data, science and the advice of healthcare professionals to guide our approach and decision-making," he said at a news conference, "putting the health and well-being of our citizens first and doing our best to protect lives and livelihoods."
"Our state agencies and the governor felt confident in the state's ability to meet daily PPE requests from our local emergency preparedness partners and medical facilities when Georgia began implementing its measured reopening plan," Cody Hall, the governor's spokesperson, said in response to questions. "We have continued to meet those needs since April." He noted the state is now building a PPE stockpile.
A Matter of Life or Death
After Georgia eased its lockdown, COVID cases spiked. Requests for PPE from health workers in the Atlanta area escalated through April and May, according to numbers provided by the nonprofit Atlanta Beats COVID-19, which makes face shields for health workers and other residents.
According to public data on the Georgia Department of Public Health's website, at least 80 Georgia healthcare workers have died from COVID-19, including after the state reopened its economy.
One was John "Derrick" Couch, a nurse practitioner who worked in Fort Oglethorpe, Georgia. Shortly after graduating with his master's degree in nursing on May 10, the worker at Med First Immediate Care Medical Center grew sick with COVID-19. His wife, Karol, cared for him at home for a time before he was hospitalized. He died after 36 days on a ventilator, according to a GoFundMe page set up to help his family cover his healthcare expenses.
"Karol wants everyone to know that Covid-19 doesn't care or discriminate. She says John would want all of his colleagues and friends in healthcare and community to demand proper equipment and protection," it said. Med First Immediate Care did not respond to a request for comment.
Between March 16 and Aug. 9, 48 COVID-19-related complaints regarding inadequate PPE in Georgia healthcare facilities were closed by the Occupational Safety and Health Administration, the federal agency responsible for workplace safety. The PPE complaints accounted for the majority — roughly 6 in 10 — of Georgia's COVID-19 complaints submitted to OSHA during the four-month period.
In April and May, "we received thousands of requests for N95 masks, but we couldn't get our hands on the right materials to even make an N95 mask," said Caroline Dunn, Atlanta Beats COVID-19's communications coordinator.
Nationally, health workers continue to express alarm about protective equipment supplies as COVID-19 hot spots reemerge across the country. A National Nurses Unitedsurvey in July found 87% of nurses working in hospitals reported reusing at least one piece of single-use PPE. Only a quarter of nurses surveyed felt their employers were providing a safe workplace.
"There's really been this normalization and this acceptance that some people are going to be expendable. And that's completely unacceptable," said Dabney Evans, director of the Center for Humanitarian Emergencies at Emory University in Atlanta.
Another document projecting PPE supplies, dated April 10 and developed by Georgia health and emergency management officials, relied on a calculator from the U.S. Centers for Disease Control and Prevention to estimate how quickly Georgia would burn through supplies across hospitals, nursing homes, dialysis clinics, jails and prisons. The state had 527,424 N95 respirators but needed a total of nearly 1.1 million to get through the ensuing seven days. The projected need grew to 4.8 million masks when estimating supplies for the following 31 days.
It had 196,500 gloves on hand but would need more than 12.1 million to get through a week, and 54 million for 31 days. The state had about 122,000 face shields but required more than 458,000 for the coming seven days. For a month, the projected need ballooned to over 2 million.
The April 10 estimates — a day when Georgia's new COVID-19 case count rose by about 1,000 people — were sent to the U.S. Department of Health and Human Services and Federal Emergency Management Agency as part of a broad effort to assess what states needed across healthcare settings to operate for at least seven days and up to a month. Federal officials asked state public health and emergency management officials to submit PPE projections daily, according to emailsamong state personnel, HHS and FEMA.
PPE estimates would be used "to determine projections for our region and the next hot spots within each state," Jeanne Eckes, an HHS official working with FEMA on the federal government's COVID-19 response, wrote in an April 3 email to officials in multiple states throughout the South, according to correspondence obtained by KHN.
Calculations Matter
Georgia officials contend the state's estimated PPE deficits were larger early in the pandemic because projections accounted for all COVID-positive cases. Once the state had more information on how many of these positives were asymptomatic cases and how many led to hospitalizations, it could better gauge what was needed, they argued. Multiple changes were made to its burn-rate calculations, including a May 8 adjustment that replaced the total case count with hospital-based COVID cases, which reduced the projected demand for PPE.
However, multiple experts disputed the idea that knowing the number of asymptomatic patients would be relevant for PPE projections. In facilities like nursing homes and jails — both of which were accounted for in the Georgia estimates — asymptomatic individuals could spread the virus if not quarantined immediately.
"Because there's not on-the-spot, point-of-care testing available for the most part, you have to use PPE throughout the hospital all the time," said Dr. Eric Toner, a senior scholar with the Johns Hopkins Center for Health Security. "In this day and age, you just have to presume that everyone has COVID."
When the state's case count began surging in March, many COVID-19 patients treated at Tift Regional Medical Center in Tifton, Georgia, needed ICU-level care and were from nearby Dougherty County, a Georgia hot spot where hospitals were quickly overwhelmed.
"There were times to which we were down to only having a few days of PPE left," said Dr. Kaine Brown, a physician and medical director at Tift, adding that the hospital was partly saved by donations of N95 and cloth masks. Gowns were the biggest problem. PPE supplies have since improved — as of early July, the hospital had stockpiled more than eight months' worth of surgical masks and enough N95s and gowns to last six months and about three months, respectively.
Georgia's stay-at-home order for most residents expired April 30; it remains in place for individuals at higher risk of severe illness.
"We were very apprehensive about [easing restrictions]," Brown said. "Those of us who had been working on the front lines knew how infectious this was."
Since May, Georgia has reopened a broad swath of businesses. In early July, more than 1,000 healthcare workers signed a letter to Kemp urging him to institute a statewide mandate requiring face coverings, to close bars and nightclubs, and prohibit indoor gatherings of more than 25 people. Georgia currently bans gatherings of more than 50 people if social distancing cannot be observed.
State officials say PPE supplies have "greatly improved" since the start of the public health emergency. As of Aug. 14, the state had distributed 3.9 million N95s, 13.1 million surgical masks, 36.6 million gloves, 4.6 million gowns and 1.6 million face shields, among other items, according to the Georgia Department of Public Health. Early on, Georgia also relied on donations to bolster PPE supplies when many items were unattainable through normal supply channels, which have since become more reliable.
However, even with the increased stocks, workers still reuse protective equipment and many fret over the uncertainty about how long they can do so safely. Another community-based organization, the Atlanta chapter of Sewing Masks for Area Hospitals, said that from April to June the organization gave out over 59,000 cloth masks to 152 healthcare facilities in the Atlanta area, including large hospitals, such as Children's Healthcare of Atlanta and Emory St. Joseph's Hospital. Kayla Hittig, a co-founder of the sewing group, said that healthcare workers were using the cloth masks to cover their N95 or surgical masks to make them last longer.
"That's the thing we hear the most — how often do we have to use these and how protective are they, for how long?" said Richard Lamphier, president of the Georgia Nurses Association.
Lamphier wasn't critical of the state officials' efforts to ensure health workers are protected.
"I think they've done the best they could with the situation they had," he said.
It wasn't enough to protect John Couch, whose family is reeling from his death.
"He was my whole life," Karol Couch said. "My life is shattered."
The coronavirus has upended the lives of dementia patients and their caregivers.
This article was published on Tuesday, August 18, 2020 in Kaiser Health News.
By Heidi de Marco GARDENA, Calif. — Daisy Conant, 91, thrives off routine.
One of her favorites is reading the newspaper with her morning coffee. But, lately, the news surrounding the coronavirus pandemic has been more agitating than pleasurable. "We're dropping like flies," she said one recent morning, throwing her hands up.
"She gets fearful," explained her grandson Erik Hayhurst, 27. "I sort of have to pull her back and walk her through the facts."
Conant hasn't been diagnosed with dementia, but her family has a history of Alzheimer's. She had been living independently in her home of 60 years, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and fell repeatedly.
For a while, Conant remained active, meeting up with friends and neighbors to walk around her neighborhood, attend church and visit the corner market. Hayhurst, a project management consultant, juggled caregiving with his job.
Then COVID-19 came, wrecking Conant's routine and isolating her from friends and loved ones. Hayhurst has had to remake his life, too. He suddenly became his grandmother's only caregiver — other family members can visit only from the lawn.
The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.
These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.
"The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support," said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.
Nearly 6 million Americans age 65 and older have Alzheimer's disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer's Association 2020 Facts and Figures journal.
People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren't visiting or, when they do, don't come into the house, she added.
"Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion," Markwood said.
The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer's or other dementias in the United States.
The Alzheimer's Association's 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there's a greater "heaviness" to the calls, said Susan Howland, programs director for the Alzheimer's Association California Southland Chapter.
"So many [callers] are seeking advice on how to address gaps in care," said Beth Kallmyer, the association's vice president of care and support. "Others are simply feeling overwhelmed and just need someone to reassure them."
Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.
They include pen pal services and letter-writing campaigns, robotic pets and weekly online choir rehearsals.
Hayhurst has experienced some rocky moments during the pandemic.
For instance, he said, it was hard for Conant to understand why she needed to wear a mask. Eventually, he made it part of the routine when they leave the house on daily walks, and Conant has even learned to put on her mask without prompting.
"At first it was a challenge," Hayhurst said. "She knows it's part of the ritual now."
People with dementia can become agitated when being taught new things, said Dr. Lon Schneider, director of the Alzheimer's Disease Research Center at the University of Southern California. To reduce distress, he said, caregivers should enforce mask-wearing only when necessary.
That was a lesson Gina Moran of Fountain Valley, California, learned early on. Moran, 43, cares for her 85-year-old mother, Alba Moran, who was diagnosed with Alzheimer's in 2007.
"I try to use the same words every time," Moran said. "I tell her there's a virus going around that's killing a lot of people, especially the elderly. And she'll respond, 'Oh, I'm at that age.'"
If Moran forgets to explain the need for a mask or social distancing, her mother gets combative. She raises her voice and refuses to listen to Moran, much like a child throwing a tantrum, Moran said. "I can't go into more information than that because she won't understand," she said. "I try to keep it simple."
The pandemic is also exacerbating feelings of isolation and loneliness, and not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. "Caregivers are lonely, too."
When stay-at-home orders first came down in March, Hayhurst's grandmother repeatedly said she felt lonesome, he recalled. "The lack of interaction has made her feel far more isolated," he said.
To keep her connected with family and friends, he regularly sets up Zoom calls.
But Conant struggles with the concept of seeing familiar faces through the computer screen. During a Zoom call on her birthday last month, Conant tried to cut pieces of cake for her guests.
Moran also feels isolated, in part because she's getting less help from family. In addition to caring for her mom, Moran studies sociology online and is in the process of adopting 1-year-old Viviana.
Right now, to minimize her mother's exposure to the virus, Moran's sister is the only person who visits a couple of times a week.
"She stays with my mom and baby so I can get some sleep," Moran said.
Before COVID, she used to get out more on her own. Losing that bit of free time makes her feel lonely and sad, she admitted.
"I would get my nails done, run errands by myself and go out on lunch dates with friends," Moran said. "But not anymore."
MEDFORD, Ore. — From the outside, it appears to be just another suburban allergy clinic, a tidy, tan brick-and-cinder-block building set back from a busy highway and across the road from an auto parts store.
But inside the offices of the Clinical Research Institute of Southern Oregon, Dr. Edward Kerwin and his staff are part of the race to save the world.
Kerwin, 63, was tapped this spring to lead one of the nearly 90 U.S. clinical trial sites taking part in the large-scale, phase 3 test of a vaccine produced by biotech startup Moderna to fight the virus that causes COVID-19.
Starting in late July, Kerwin's clinic, set in a working-class region roughly halfway between Seattle and San Francisco, began enrolling up to 40 participants a day for the two-year study. He hopes to recruit as many as 700 volunteers by the end of August.
They'll join the 30,000 test subjects needed nationwide to determine whether the Moderna vaccine can tame a disease that has infected 5.4 million Americans and claimed the lives of more than 170,000. Another vaccine, produced by Pfizer and BioNTech, a German company, is being tested in nearly 30,000 more recruits.
"It's a perfect opportunity for science to come to the rescue," said Kerwin, a lanky figure in a bright-blue shirt and khaki pants. He led visitors to a conference room, took a chair well outside social-distancing range and doffed his mask, the better to explain the magnitude of this moment.
He acknowledged "it may seem like a surprise" that Medford is the site of a clinical trial to halt the world's biggest medical challenge in a century. But Kerwin, who worked as a NASA scientist before heading to medical school and a career in allergy, asthma and immunology, has led more than 750 clinical trials over the past quarter-century, mostly focused on asthma, lung disease and skin disorders.
He moved to southern Oregon in 1993, choosing the rural Rogue Valley because of its beauty and cultural opportunities, such as the Oregon Shakespeare Festival in Ashland. As his medical expertise grew, he built a top-enrolling clinical trial site that coexists with a clinic that treats asthma and allergy patients. Along the way, he established deep roots in the valley, where he founded Bel Fiore, a $10 million winery and vineyard that features a 19,000-square-foot chateau.
Even with his experience, however, testing a vaccine to halt a global pandemic is a challenge like no other, Kerwin said. When the call came from Velocity Clinical Research — the North Carolina-based company that operates Kerwin's clinic, known as CRISOR, and more than a dozen other COVID trial sites across the U.S. — he paused for a moment.
"You take a big gasp and say, 'Do we have the resources to do this?'" Kerwin said. "You definitely do it, but you want to do your homework."
So far, the testing is going well, he said. Unlike most clinical trials, for which it's difficult to recruit enough volunteers, the COVID effort has attracted intense interest. All of Velocity's sites are paying participants $1,962 for the two-year trial, but Kerwin's staff of two dozen didn't advertise widely at first.
"We would worry our phone would ring off the hook," Kerwin said.
The Medford clinic is the only COVID vaccine clinical trial site in Oregon, so participants have come from as far as Portland, nearly 300 miles north.
It's a prime example of the gamble drugmakers and federal trial sponsors take when deciding where to host large-scale COVID clinical trials. To gauge whether the vaccine works, you need to know there's a good chance participants will be exposed to the virus in the environment. Ethically, in traditional phase 3 trials, you can't deliberately infect people with COVID, a disease with no treatment or cure, though some propose doing just that in controversial human challenge trials.
Southern Oregon has not been a hot spot for COVID, with fewer than 500 confirmed cases and two deaths in Jackson County, which includes Medford. But, Kerwin said, it's at risk of becoming one, offering the opportunity to vaccinate trial participants before the virus becomes widespread.
"It's almost too late in New York and Arizona," he said.
In the meantime, he's trying to shift the odds that trial volunteers will be exposed to COVID-19 by reaching out to people at greater risk of infection.
So Kerwin's team has contacted businesses in industries such as agriculture and food production, where the disease has been known to spread with particular virulence. Locally, that includes employers such as Harry & David, the food retailer famous for its fruit-of-the-month shipments, and Amy's Kitchen, the maker of vegetarian frozen meals, which operates a production plant in the area.
The Medford trial site is also emphasizing enrollment of elder volunteers, those age 65 and up, who are at higher risk of serious illness or death from the coronavirus.
One of the first volunteers was Trish Malone, a 68-year-old cultural anthropologist who lives in Ashland. Like many of the other participants, she has enlisted in Kerwin's previous clinical trials of devices to treat asthma. When clinic staffers reached out to ask whether she'd participate in the COVID trial, she didn't hesitate.
"I said, 'Wow, yes,'" Malone recalled. "It's because of [Kerwin] and his expertise. Little Medford gets to have this testing."
Participating is a way to "give back" to her community, said Malone, who sat, calm and still, on a recent Thursday as study coordinator Audrey Kuehl sank the injection into Malone's left shoulder.
"She was fast. It was no pain, and it was fine," Malone said.
Half of the patients in the trial will receive two doses, 28 days apart, of the Moderna vaccine, called mRNA-1273. It uses a snippet of the genetic code of the coronavirus, not the virus itself, to instruct cells to produce a protein that triggers an immune response to protect against infection. The other half will receive a placebo, or saline dummy shot.
Three study coordinators at the Medford clinic, Kuehl among them, know which patients receive which dose, but the information is kept from volunteers and other staff members — including Kerwin, the principal investigator.
Participants who receive the vaccine may experience some side effects, such as redness at the injection site, muscle soreness, fatigue or headache, Kerwin said. "It's a sign the vaccine is working with your immune system," he said.
Four days after her first injection, Malone was disappointed to report no reaction at all. "I am bummed, totally bummed," she said. "I have no symptoms. I think I got the placebo."
That may not be true, of course. Even if it is, Malone said, she's happy to participate in an effort that may help stop the deadly virus.
"This a global pandemic," she said. "What can I do to help?"
The study will run for two years so that investigators can track the longer-term effects of the vaccine. Malone will keep a diary of her temperature and symptoms, if any, and have regular blood tests to determine whether she has antibodies to the virus.
Kerwin is optimistic about the chances the Moderna vaccine will work, agreeing with Dr. Anthony Fauci, the nation's top infectious disease expert, who predicted the study could demonstrate efficacy by November or December. Kerwin estimates that the vaccine could prove 90% effective, though outside infectious disease experts said it's far too soon to tell.
Even if the trial shows the vaccine is successful, it would take months longer to produce and deliver enough injections for the U.S. and beyond.
As he enrolls patients and awaits data, Kerwin said, he's mindful of the real-world implications of his work. His mother, in her 90s, lives in a Denver nursing home where, so far, there have been no cases of COVID-19. But the threat looms.
The tragedy of the pandemic has underscored the promise of science — and the interconnectedness of people far beyond this small corner of Oregon.
"Immunology has never been more fascinating than it is today," he said. "This is a year that reminds us we cannot live in isolation and do not live in isolation from the world."
Logistical challenges continue seven months after the coronavirus reached the United States, as the flu season approaches and as some state emergency management agencies prepare for a fall surge in COVID-19 cases.
Shortages of personal protective equipment and medical supplies could persist for years without strategic government intervention, officials from healthcare and manufacturing industries have predicted.
Officials said logistical challenges continue seven months after the coronavirus reached the United States, as the flu season approaches and as some state emergency management agencies prepare for a fall surge in COVID-19 cases.
Although the disarray is not as widespread as it was this spring, hospitals said rolling shortages of supplies range from specialized beds to disposable isolation gowns to thermometers.
"A few weeks ago, we were having a very difficult time getting the sanitary wipes. You just couldn't get them," said Dr. Bernard Klein, chief executive of Providence Holy Cross Medical Center in Mission Hills, California, near Los Angeles. "We actually had to manufacture our own."
This same dynamic has played out across a number of critical supplies in his hospital. First masks, then isolation gowns and now a specialized bed that allows nurses to turn COVID-19 patients onto their bellies — equipment that helps workers with what can otherwise be a six-person job.
"We've seen whole families come to our hospital with COVID, and several members hospitalized at the same time," said Klein. "It's very, very sad."
Testing supplies ran short as the predominantly Latino community served by Providence Holy Cross was hit hard by COVID, and even as nearby hospitals could process 15-minute tests.
"If we had a more coordinated response with a partnership between the medical field, the government and the private industry, it would help improve the supply chain to the areas that need it most," Klein said.
Klein said he expected to deal with equipment and supply shortages throughout 2021, especially as flu season approaches.
"Most people focus on those N95 respirators," said Carmela Coyle, CEO of the California Hospital Association, an industry group that represents more than 400 hospitals across one of America's hardest-hit states.
She said she believed COVID-19-related supply challenges will persist through 2022.
"We have been challenged with shortages of isolation gowns, face shields, which you're now starting to see in public places. Any one piece that's in shortage or not available creates risk for patients and for healthcare workers," said Coyle.
At the same time, trade associations representing manufacturers said persuading customers to shift to American suppliers had been difficult.
"I also have industry that's working only at 10-20% capacity, who can make PPE in our own backyard, but have no orders," said Kim Glas, CEO of the National Council of Textile Organizations, whose members make reusable cloth gowns.
Manufacturers in her organization have made "hundreds of millions of products," but, without long-term government contracts, many are apprehensive to invest in the equipment needed to scale up the business and eventually lower prices.
"If there continues to be an upward trajectory of COVID-19 cases, not just in the U.S. but globally, you can see those supply chains breaking down again," Glas said. "It is a healthcare security issue."
For the past two decades, personal protective equipment was supplied to healthcare institutions in lean supply chains in the same way toilet paper was to grocery stores. Chains between major manufacturers and end users were so efficient, there was no need to stockpile goods.
But in March, the supply chain broke when major Asian PPE exporters embargoed materials or shut down just as demand increased exponentially. Thus, healthcare institutions were in much the same position as regular grocery shoppers, who were trying to buy great quantities of a product they never needed to stockpile before.
"I am very concerned about long-term PPE shortages for the foreseeable future," said Dr. Susan Bailey, president of the American Medical Association.
"There's no question the situation is better than it was a couple of months ago," said Bailey. However, many healthcare organizations, including her own, have struggled to obtain PPE. Bailey practices at a 10-doctor allergy clinic and was met with a 10,000-mask minimum when they tried to order N95 respirators.
"We have not seen evidence of a long-term strategic plan for the manufacture, acquisition and distribution of PPE" from the government, said Bailey. "The supply chain needs to be strengthened dramatically, and we need less dependence on foreign goods to manufacture our own PPE in the U.S."
Some products have now come back to be made in the U.S. — although factories are not expected to be able to reach demand until mid-2021.
"A lot has been done in the last six months," said Rousse. "We are largely out of the hole, and we have planted the seeds to render the United States self-sufficient," said Dave Rousse, president of the Association of the Nonwoven Fabrics Industry.
In 2019, 850 tons of the material used in disposable masks was made in the U.S. Around 10,000 tons is expected to be made in 2021, satisfying perhaps 80% of demand. But PPE is a suite of items — including gloves, gowns and face shields — not all of which have seen the same success.
"Thermometers are becoming a real issue," said Cindy Juhas, chief strategy officer of CME, an American healthcare product distributor. "They're expecting even a problem with needles and syringes for the amount of vaccines they have to make," she said.
Federal government efforts to address the supply chain have foundered. The Federal Emergency Management Agency, in charge of the COVID-19 response, told congressional interviewers in June it had "no involvement" in distributing PPE to hot spots.
Project Airbridge, an initiative headed by Jared Kushner, President Donald Trump's son-in-law, flew PPE from international suppliers to the U.S. at taxpayer expense but was phased out. And the government has not responded to the AMA's calls for more distribution data.
Arguably, Klein is among the best placed to weather such disruptions. He is part of a 51-hospital chain with purchasing power, and among the institutions that distributors prioritize when selling supplies. But tribulations continue even in hospitals, as shortages have pushed buyers to look directly for manufacturers, often through a swamp of companies that have sprung up overnight.
Now distributors are being called upon not just by their traditional customers — hospitals and long-term care homes — but by nearly every segment of society. First responders, schools, clinics and even food businesses are all buying medical equipment now.
"There's going to be lots of other shortages we haven't even thought about," said Juhas.
Pennsylvania is rolling out its new "Pennie" this fall: a state-run insurance exchange that officials say will save residents collectively millions of dollars on next year's health plan premiums.
Since the Affordable Care Act's marketplaces opened for enrollment in fall 2013, Pennsylvania, like most states, has used the federal www.healthcare.gov website for people buying coverage on their own.
But in a move defying the usual political polarization, state lawmakers from both parties last year agreed the cost of using the federal marketplace had grown too high and the state could do it for much less. They set up the Pennsylvania insurance exchange (nicknamed "Pennie"), designed to pass on expected savings to policyholders. Although the final rates for 2021 are not yet set, insurers have requested about a 3% average drop in premiums.
Pennsylvania is one of six states shifting in the next several years from the federal insurance exchange to run their own online marketplaces, which determine eligibility, assist with enrollment and connect buyers with insurance companies. They will join 12 states and the District of Columbia with self-contained exchanges.
The transitions come amid mounting evidence that state marketplaces attract more consumers, especially young adults, and hold down prices better than the federal exchange. They've also been gaining appeal since the Trump administration has cut the enrollment period on healthcare.gov and slashed funds for advertising and helping consumers.
State policymakers say they can run their own exchanges more cheaply and efficiently, and can better respond to residents' and insurers' needs.
"It comes down to getting more bang for your buck," said Rachel Schwab, a researcher at Georgetown University's Center on Health Insurance Reforms in Washington, D.C.
The importance of state-run exchanges was highlighted this year as all but one of them held special enrollment periods to sign up hundreds of thousands of people hurt financially by COVID-caused economic turmoil. The federal exchange, run by the Trump administration, refused to do so, although anyone who has lost workplace insurance is able to buy coverage anytime on either the state or federal exchange.
Like Pennsylvania, New Jersey expects to have its state-run exchange operational for the start of open enrollment on Nov. 1.
In fall 2021, New Mexico plans to launch its own marketplace and Kentucky is scheduled to fully revive its state-run exchange, which was dismantled by its Republican governor in 2015. Maine has also announced it will move to set up its own exchange, possibly in fall 2021.
Nationwide, about 11 million people get coverage through the state and federal exchanges, with more than 80% receiving federal subsidies to lower their insurance costs.
"Almost across the board, states with their own exchanges have achieved higher enrollment rates than their federal peers, along with lower premiums and better consumer education and protection," according to a study published this month in the Journal of Health Politics, Policy and Law.
Controlling 'Their Own Destiny'
Since 2014, states using the federal marketplaces have had a rise in premiums of 87% while state exchanges saw 47% growth, the study found.
In one key metric, from 2016 to 2019 the number of young enrollees in state exchanges rose 11.5%, while states using the federal marketplace recorded an 11.3% drop, a study by the National Academy for State Health Policy found.
Attracting younger enrollees, who tend to be healthy, is vital to helping the marketplaces spread the insurance risk to help keep premiums down, experts say.
When the Affordable Care Act was debated, Republicans and some Democrats in Congress were cautious about a one-size-fits-all approach to insurance and accusations about a federal takeover of healthcare. So the law's advocates gave states more control over selling private health coverage. The law's framers included a provision that allowed states to use millions in federal dollars to launch their own insurance exchanges.
Initially, 49 states took the money. But in 2011, conservative groups convinced Republican-controlled states that forgoing state-run exchanges would help undermine Obamacare.
As a result, most GOP-controlled states defaulted to the federal marketplace.
In the ensuing years, several states that had started their own marketplaces, such as Oregon, Nevada and Hawaii, reverted to the federal exchange because of technological problems. Nevada relaunched its exchange last fall.
"States want to control their own destiny, and the instability of healthcare.gov in the Trump administration has frustrated states," said Joel Ario, managing director for the consulting firm Manatt Health Solutions and a former Obama administration official, who helped set up the exchanges. States running their own platform can use data to target enrollment efforts, he said.
An Effort to Hold Down Premium Increases
Marlene Caride, New Jersey commissioner of Banking and Insurance, said that "the beauty of [a state-based exchange] is we can tailor it to New Jersey residents and have the ability to help [them] when they are in dire need."
About 210,000 New Jersey residents enrolled in marketplace health plans for this year.
New Jersey has been spending $50 million a year in user fees for the federal exchange. After startup costs, the state estimates, it will cost about $7.6 million a year to run its own exchange enrollment platform and $7 million a year for a customer service center.
Open enrollment on the New Jersey exchange — called Get Covered NJ — will run from Nov. 1 to Jan. 31.
Kentucky officials said insurers there were paying $15 million a year in user fees for healthcare.gov, a cost passed on to policyholders. When the state switches to its own operation, it plans to collect $5 million in its first year to cover the startup costs to revive its Kynect exchange and another $1 million to $2 million in annual administrative costs. So insurers will pay lower fees and those savings will help cut premium costs, said Eric Friedlander, secretary of the Kentucky Cabinet for Health and Family Services.
States using the federal marketplace this year paid either a 2.5% or 3% surcharge to the federal government on premiums collected.
In Pennsylvania, where about 330,000 residents buy coverage through an exchange plan, those fees accounted for $90 million a year. State officials estimate they can run their own exchange for about $40 million and will use the savings for a reinsurance program that pays insurers to help cover the cost of extremely expensive healthcare needed by some customers. Removing those costs from the insurers' responsibility allows them to drop premiums by 5% to 10%, the state projects.
"When we talk about bringing something back to state control, that is a real narrative that can appeal to both sides of the aisle," said Jessica Altman, the state's insurance commissioner. "There is nothing political about making health insurance more affordable." (Altman is the daughter of Drew Altman, CEO of KFF. KHN is an editorially independent program of KFF.)
Without the savings from running its own exchange, Pennsylvania would not have been able to come up with the more than $40 million needed for the reinsurance program, state officials said.
In addition, Pennsylvania has extended its enrollment period to run an extra month, until Jan. 15 (federal marketplace enrollment ends Dec. 15). Pennie also plans to spend three to four times the $400,000 that the federal government allocated to the state for navigators to help with enrollment, said Zachary Sherman, who heads Pennie.
"We think increased outreach and marketing will bring in a healthier population and broaden enrollment," he said.
After terrorists slammed a plane into the Pentagon on 9/11, ambulances rushed scores of the injured to community hospitals, but only three of the patients were taken to specialized trauma wards. The reason: The hospitals and ambulances had no real-time information-sharing system.
Nineteen years later, there is still no national data network that enables the health system to respond effectively to disasters and disease outbreaks. Many doctors and nurses must fill out paper forms on COVID-19 cases and available beds and fax them to public health agencies, causing critical delays in care and hampering the effort to track and block the spread of the coronavirus.
“We need to be thinking long and hard about making improvements in the data-reporting system so the response to the next epidemic is a little less painful,” said Dr. Dan Hanfling, a vice president at In-Q-Tel, a nonprofit that helps the federal government solve technology problems in health care and other areas. “And there will be another one.”
There are signs the COVID-19 pandemic has created momentum to modernize the nation’s creaky, fragmented public health data system, in which nearly 3,000 local, state and federal health departments set their own reporting rules and vary greatly in their ability to send and receive data electronically.
Sutter Health and UC Davis Health, along with nearly 30 other provider organizations around the country, recently launched a collaborative effort to speed and improve the sharing of clinical data on individual COVID cases with public health departments.
But even that platform, which contains information about patients’ diagnoses and response to treatments, doesn’t yet include data on the availability of hospital beds, intensive care units or supplies needed for a seamless pandemic response.
The federal government spent nearly $40 billion over the past decade to equip hospitals and physicians’ offices with electronic health record systems for improving treatment of individual patients. But no comparable effort has emerged to build an effective system for quickly moving information on infectious disease from providers to public health agencies.
In March, Congress approved $500 million over 10 years to modernize the public health data infrastructure. But the amount falls far short of what’s needed to update data systems and train staff at local and state health departments, said Brian Dixon, director of public health informatics at the Regenstrief Institute in Indianapolis.
“The data are moving slower than the disease,” said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists. “We need a way to get that information electronically and seamlessly to public health agencies so we can do investigations, quarantine people and identify hot spots and risk groups in real time, not two weeks later.”
The impact of these data failures is felt around the country. The director of the California Department of Public Health, Dr. Sonia Angell, was forced out Aug. 9 after a malfunction in the state’s data system left out up to 300,000 COVID-19 test results, undercutting the accuracy of its case count.
Other advanced countries have done a better job of rapidly and accurately tracking COVID-19 cases and medical resources while doing contact tracing and quarantining those who test positive. In France, physicians’ offices report patient symptoms to a central agency every day. That’s an advantage of having a national health care system.
“If someone in France sneezes, they learn about it in Paris,” said Dr. Chris Lehmann, clinical informatics director at UT Southwestern Medical Center in Dallas.
Coronavirus cases reported to U.S. public health departments are often missing patients’ addresses and phone numbers, which are needed to trace their contacts, Hamilton said. Lab test results often lack information on patients’ races or ethnicities, which could help authorities understand demographic disparities in transmission and response to the virus.
Last month, the Trump administration abruptly ordered hospitals to report all COVID-19 data to a private vendor hired by the Department of Health and Human Services rather than to the long-established reporting system run by the Centers for Disease Control and Prevention. The administration said the switch would help the White House coronavirus task force better allocate scarce supplies.
The shift disrupted, at least temporarily, the flow of critical information needed to track COVID-19 outbreaks and allocate resources, public health officials said. They worried the move looked political in nature and could dampen public confidence in the accuracy of the data.
An HHS spokesperson said the transition had improved and sped up hospital reporting. Experts had various opinions on the matter but agreed that the new system doesn’t fix problems with the old CDC system that contributed to this country’s slow and ineffective response to COVID-19.
“While I think it’s an exceptionally bad idea to take the CDC out of it, the bottom line is the way CDC presented the data wasn’t all that useful,” said Dr. George Rutherford, a professor of epidemiology at the University of California-San Francisco.
The new HHS system lacks data from nursing homes, which is needed to ensure safe care for COVID patients after discharge from the hospital, said Dr. Lissy Hu, CEO of CarePort Health, which coordinates care between hospitals and post-acute facilities.
Some observers hope the pandemic will persuade the health care industry to push faster toward its goal of smoother data exchange through computer systems that can easily talk to one another — an objective that has met with only partial success after more than a decade of effort.
The case reporting system launched by Sutter Health and its partners sends clinical information from each coronavirus patient’s electronic health record to public health agencies in all 50 states. The Digital Bridge platform also allows the agencies for the first time to send helpful treatment information back to doctors and nurses. About 20 other health systems are preparing to join the 30 partners in the system, and major digital health record vendors like Epic and Allscripts have added the reporting capacity to their software.
Sutter hopes to get state and county officials to let the health system stop sending data manually, which would save its clinicians time they need for treating patients, said Dr. Steven Lane, Sutter’s clinical informatics director for interoperability.
The platform could be key in implementing COVID-19 vaccination around the country, said Dr. Andrew Wiesenthal, a managing director at Deloitte Consulting who spearheaded the development of Digital Bridge.
“You’d want a registry of everyone immunized, you’d want to hear if that person developed COVID anyway, then you’d want to know about subsequent symptoms,” he said. “You can only do that well if you have an effective data system for surveillance and reporting.”
The key is to get all the health care players — providers, insurers, EHR vendors and public health agencies — to collaborate and share data, rather than hoarding it for their own financial or organizational benefit, Wiesenthal said.
“One would hope we will use this crisis as an opportunity to fix a long-standing problem,” said John Auerbach, CEO of Trust for America’s Health. “But I worry this will follow the historical pattern of throwing a lot of money at a problem during a crisis, then cutting back after. There’s a tendency to think short term.”
During six weeks on life support at Northwestern Memorial Hospital in Chicago, Ramirez said, she had terrifying nightmares that she couldn’t distinguish from reality.
“Most of them involve me drowning,” she said. “I attribute that to me not being able to breathe, and struggling to breathe.”
On June 5, Ramirez, 28, became the first known COVID-19 patient in the U.S. to undergo a double lung transplant. She is strong enough now to begin sharing the story of her ordeal.
Mysterious Exposure
Before the pandemic, Ramirez worked as a paralegal for an immigration law firm in Chicago. She enjoyed walking her dogs and running 5K races.
Ramirez had been working from home since mid-March, hardly leaving the house, so she has no idea how she contracted the coronavirus. In late April, she started experiencing chronic spasms, diarrhea, loss of taste and smell, and a slight fever.
“I felt very fatigued,” Ramirez said. “I wasn’t able to walk long distances without falling over. And that’s when I decided to go into the emergency room.”
From the ER to a Ventilator
The staff at Northwestern checked her vitals and found her oxygen levels were extremely low. She was given 10 minutes to explain her situation over the phone to her mother in North Carolina and appoint her to make medical decisions on her behalf.
Ramirez knew she was about to be placed on a ventilator, but she didn’t understand exactly what that meant.
“In Spanish, the word ‘ventilator’ — ventilador — is ‘fan,’ so I thought, ‘Oh, they’re just gonna blow some air into me and I’ll be OK. Maybe have a three-day stay, and then I’ll be right out.’ So I wasn’t very worried,” Ramirez said.
In fact, she would spend the next six weeks heavily sedated on that ventilator and another machine — known as ECMO, or extracorporeal membrane oxygenation — pumping and oxygenating her blood outside of her body.
One theory about why Ramirez became so sick is that she has a neurological condition that is treated with steroids, drugs that can suppress the immune system.
By early June, Ramirez was at risk of further decline. She began showing signs that her kidneys and liver were starting to fail, with no improvement in her lung function. Her family was told she might not make it through the night, so her mother and sisters caught the first flight from North Carolina to Chicago to say goodbye.
When they arrived, the doctors told Ramirez’s mother, Nohemi Romero, that there was one last thing they could try.
Ramirez was a candidate for a double lung transplant, they said, although the procedure had never been done on a COVID patient in the U.S. Her mother agreed, and within 48 hours of being listed for transplant, a donor was found and the successful procedure was performed on June 5.
At a recent news conference held by Northwestern Memorial, Romero shared in Spanish that there were no words to describe the pain of not being by her daughter’s side as she struggled for her life.
She thanked God all went well, and for giving her the strength to make it through.
‘I Just Felt Like a Vegetable’
Dr. Ankit Bharat, Northwestern Medicine’s chief of thoracic surgery, performed the 10-hour procedure.
“Most patients are quite sick going into [a] lung transplant,” Bharat said in an interview in June. “But she was so sick. In fact, I can say without hesitation, the sickest patient I ever transplanted.”
Bharat said most COVID-19 patients will not be candidates for transplants because of their age and other health conditions that decrease the likelihood of success. And early research shows that up to half of COVID patients on ventilators survive the illness and are likely to recover on their own.
But for some, like Ramirez, Bharat said, a transplant can be a lifesaving option of last resort.
When Ramirez woke up after the operation, she was disoriented, could barely move her body and couldn’t speak.
“I just felt like a vegetable. It was frustrating, but at the time I didn’t have the cognitive ability to process what was going on,” Ramirez said.
She recalled being sad that her mother wasn’t with her in the hospital, not understanding that visitors weren’t allowed because of the pandemic.
Her family had sent photos to post by her hospital bed, and Ramirez said she couldn’t recognize anyone in the pictures.
“I was actually sort of upset about it, [thinking,] ‘Who are these strangers and why are their pictures in my room?’” Ramirez said. “It was weeks later, actually, that I took a second look and realized, ‘Hey, that’s my grandmother. That’s my mom and my siblings. And that’s me.”
After a few weeks, Ramirez said, she finally understood what happened to her. When COVID-19 restrictions loosened at the hospital in mid-June, her mother was finally able to visit.
“The first thing I did was just tear up,” Ramirez said. “I was overjoyed to see her.”
The Long Road to Recovery
After weeks of inpatient rehabilitation, Ramirez was discharged home. She’s now receiving in-home nursing assistance as well as physical and occupational therapy, and she’s working on finding a psychologist.
Ramirez eagerly looks forward to being able to spend more time with her family, her boyfriend and her dogs and serving the immigrant community through her legal work.
But for now, her days are consumed by rehab. Her doctors say it will be at least a year before she can function independently and be as active as before.
Ramirez is slowly regaining strength and learning how to breathe with her new lungs.
She takes 17 prescription medicines, some of them several times a day, including medicines to prevent her body from rejecting the new lungs. She also takes anxiety meds and antidepressants to help her cope with daily nightmares and panic attacks.
The long-term physical and mental health tolls on Ramirez and other COVID-19 survivors remain largely unknown, since the virus is so new.
While most people who contract the virus are left seemingly unscathed, for some patients, like Ramirez, the road to recovery is full of uncertainty, said Dr. Mady Hornig, a physician-scientist at the Columbia University Mailman School of Public Health.
Some patients can experience post-intensive care syndrome, or PICS, which can consist of depression, memory issues and other cognitive and mental health problems, Hornig said. Under normal circumstances, ICU visits from loved ones are encouraged, she said, because the human interaction can be protective.
“That type of contact would normally keep people oriented … so that it doesn’t become as traumatic,” Hornig said.
Hopes for the Future
COVID-19 has disproportionately harmed Latino communities, as Latinos are overrepresented in jobs that expose them to the virus and have lower rates of health insurance and other social protections.
Ramirez has health insurance, although that hasn’t spared her from tens and thousands of dollars’ worth of medical bills.
And even though she still ended up getting COVID-19, she counts herself lucky for having a job that allowed her to work from home when the pandemic struck. Many Latino workers don’t have that luxury, she said, so they’re forced to risk their lives doing low-wage jobs deemed essential at this time.
Ramirez’s mother is a breast cancer survivor, making her particularly vulnerable to COVID-19. She had been working at a meatpacking plant in North Carolina, for a company that Ramirez said has had hundreds of COVID-19 cases among employees.
So Ramirez is relieved to have her mom in Chicago, helping take care of her.
“I’m glad this is taking her away from her position,” Ramirez said.
Friends and family in North Carolina have been fundraising to help pay her medical bills, selling raffle tickets and setting up a GoFundMe page on her behalf. Ramirez is also applying for financial assistance from the hospital.
Her experience with COVID-19 has not changed who she is as a person, she said, and she looks forward to living her life to the fullest.
If she ever gets the chance to speak with the family of the person whose lungs she now has, she said, she will thank them “for raising such a healthy child and a caring person [who] was kind enough to become an organ donor.”
Her life may never be the same, but that doesn’t mean she won’t try. She laughs as she explains how she asked her surgeon to take her skydiving someday.
“Dr. Bharat actually used to work at a skydiving company when he was younger,” Ramirez said. “And so he promised me that, hopefully within a year, he could get me there.”
And she has every intention of holding him to that promise.
This story is part of a reporting partnership that includes Illinois Public Media, Side Effects Public Media, NPR and KHN.
Data to address racial discrepancies has been spotty during the pandemic, and it isn't available for most minority communities, which disproportionately bear the brunt of the virus.
This article was published on Thursday, August 13, 2020 in Kaiser Health News.
As the coronavirus swept into Detroit this spring, Wayne State University junior Skye Taylor noticed something striking. On social media, many of her fellow Black classmates who live or grew up in the city were "posting about death, like, 'Oh, I lost this family member to COVID-19,'" said Taylor.
The picture was different in Beverly Hills, a mostly white suburb 20 miles away. "People I went to high school with aren't posting anything like that," Taylor said. "They're doing well, their family is doing OK. And even the ones whose family members have caught it, they're still alive."
How do COVID-19 infection rates and outcomes differ between these ZIP codes? she wondered. How do their hospitals and other resources compare? This summer, as part of aneight-week research collaborative developed by San Francisco researchers and funded by the National Institutes of Health, Taylor will look at that question and other effects of the pandemic. She's one of 70 participants from backgrounds underrepresented in science who are learning basic coding and data analysis methods to explore disparity issues.
Data to address racial discrepancies in care and outcomes has been spotty during the pandemic, and it isn't available for most of these students' communities, whichdisproportionately bear the brunt of the virus. The participants are "asking questions from a perspective that we desperately need, because their voices aren't really there in the scientific community," said Alison Gammie, who directs the division of training, workforce development and diversity at the National Institute of General Medical Sciences.
Scientists from Black, Hispanic, Native American and other minority backgrounds have long been underrepresented in biomedicine. By some measures, efforts to diversify the field have made progress: The number of these minorities who earned life science doctoral degrees rose more than ninefold from 1980 to 2013. But this increase in Ph.D.s has not moved the needle at the faculty level.
Instead, the number of minority assistant professors in these fields has dipped in recent years, from 347 in 2005 to 341 in 2013. And some of those who have entered public health endure racial aggression and marginalization in the workplace — or, after years in a toxic environment, quietly leave.
"We really need to focus on making sure people are supported and find academic and research jobs sufficiently desirable that they choose to stay," said Gammie. "There have been improvements, but we still have a long way to go."
In 2014, the NIH launched the Building Infrastructure Leading to Diversity initiative. It offers grants to 10 undergraduate campuses that partner with scores of other institutions researching how to get poor and minority students to pursue biomedical careers.
Students in the program receive stipends and typically spend summers working in research labs. But when COVID-19 hit, many labs and their experiments shut down. "People were like, what do we do? How do we do that remotely?" said biologist Leticia Márquez-Magaña, who heads the initiative's team at San Francisco State University.
She and University of California-San Francisco epidemiologist Kala Mehta sketched out a plan for students to work remotely with bioinformatics, population health and epidemiology researchers to collect and analyze COVID-19 data for marginalized populations.
Gammie encouraged the Bay Area team to expand the summer opportunity to participants across the nation. From June 22 to Aug. 13, students spend two to three hours online four days a week in small groups led by master's-level mentors. They learn basic bioinformatics — computational methods for analyzing biological and population health data — and R, a common statistical programming language, to collect and analyze data from public data sets. "I think of basic bioinformatics and R coding as an empowerment tool," said Mehta. "They're going to become change agents in their communities, fighting back with data."
Bench science often takes years, whereas data crunching to solve problems offers a sense of immediacy, said Niquo Ceberio, who recently earned a master's in biology at SFSU and leads the team of mentors. "There was this sort of limitlessness about it that really appealed to me," she said.
Raymundo Aragonez, a University of Texas-El Paso biology major participating in the summer program, sees data analysis as a way to address confusion in the Hispanic community — including some of his family members who think the pandemic "is all a hoax." Dismayed by misleading YouTube videos and rampant misinformation shared on social media, Aragonez, who aims to be the first in his family to finish college, said he hopes to gain skills to "understand the data and how infections are actually happening, so I can explain it to my family."
He hopes to explore whether COVID-19 infection rates differ among people living in El Paso, those living in the Mexican city of Juárez, and those who frequently cross the border between the cities — like many of his friends and classmates.
Willow Weibel, an SFSU psychology major, is studying how COVID-19 restrictions affect the mental health of former foster youth and other young adults with traumatic backgrounds. Weibel spent much of her childhood in foster care before getting adopted into a Southern California family at age 17. "I've grown to really care about what other people go through in the system," she said.
Mental health is a common thread in the research questions proposed by several students in Weibel's group, including Skye Taylor, who is majoring in psychology with a minor in public health. While curious about disparities in Detroit-area COVID-19 outcomes, she also wants to examine how mental health issues affect COVID-19 susceptibility — "especially in the Black community, because mental health isn't really talked about," she said.
Having the chance to explore their own research questions is unusual for undergraduates, and particularly meaningful to students of color. "It feels like science is something that's been done to us or on us," said Ceberio, who is Black and Latina, and grew up in Los Angeles, Miami and Las Vegas before moving to the Bay Area. "This experience allows them to do research that they feel is relevant based on the way they're viewing the world. I'm trying to get them to trust their instincts."
Trainees from underrepresented groups will more likely stay in biomedicine if they feel they are giving back to their communities or doing something with a tangible purpose, said Gammie. This summer, participants "have an opportunity to engage in science that does both," she said. "Our hope is that this will inspire students to go on to be independent scientists."