Our Healthcare System Is Completely Unprepared for Long COVID

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Through the inundation of information that comes with a fast-paced news cycle, there’s one thing that continually crops up: As concerned as we are about the number of COVID-19 hospitalizations and death toll, especially in the United States, we must also consider the ongoing, unforeseen effects of the pandemic. Though more than 245,000 people have died from COVID-19 in the United States, more than 11 million people have been diagnosed with the virus at the time of this writing—and the long-term health impacts are still unknown. All we currently know is that millions of people are living with something akin to a post-viral syndrome that includes respiratory issues, fatigue, cognitive impairments, and mental health issues. We can, perhaps, look to the long-term sequelae—symptoms and conditions caused by a previous injury or illness—in the aftermath of other coronaviruses like Sudden Acute Respiratory Syndrome (SARS) to predict where we’re headed.

In 2003, the SARS outbreak—also spread by close contact—infected 8,000 people and killed a little fewer than 800 people until the World Health Organization stopped the potential pandemic before it could fully take hold. SARS symptoms will sound remarkably familiar to just about anyone nowadays: fever, fatigue, body aches, coughing, and in some cases, respiratory failure and pneumonia. At the time, people donned masks and self-isolated in droves, and outside of a few laboratory cases in 2004, the world has been SARS-free ever since. SARS-CoV-2, the scientific name of the virus that causes COVID-19, is related to the coronavirus that causes SARS. The genetic similarities and our scientific understanding of SARS’s long-term effects could be vital to understanding what life for people after contracting COVID-19 might look like.

A meta-analysis of 28 studies found that six months after being discharged from the hospital, one-third of SARS patients were still experiencing depression, anxiety, and PTSD. One year after contracting the virus, an average of 26 percent of SARS survivors were found to have decreased lung diffusion capacity (the ability for blood oxygen and carbon dioxide to exchange), decreased exercise capacity, and worse overall health. Another study of about 230 SARS patients found that even four years after the outbreak, 40 percent of them reported active psychiatric illnesses and 40 percent reported chronic fatigue. A longitudinal study published in February 2020 found that 15 years later, SARS patients with lesions were less likely to have improved lung function from 2006 to 2018 compared to SARS patients without lesions. Contracting SARS, then, led to long-term effects beyond the disease—an all-too-familiar reality for those who’ve survived COVID-19.

“If you look anecdotally, there is no question that there are a considerable number of individuals that have a post-viral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said at the July 2020 press briefing of the virtual COVID-19 Conference, sponsored by the International AIDS Society. “They have things that are highly suggestive of Myalgic Encephalomyelitis [ME] and Chronic Fatigue Syndrome [CFS]: brain fog, fatigue, difficulty in concentrating. So this is something we seriously need to look at, because there very well might be—there is, a post-viral syndrome associated with COVID-19.” Other physicians are warning of this possibility as well: A June 2020 letter to the editor published in Medical Hypotheses warned that healthcare workers who contracted SARS developed symptoms akin to the invisible illness, ME/CFS, which can cause decreased overall activity level, increased and consistent fatigue, sleeping difficulties, and pain. There’s currently no cure for ME/CFS, which might soon affect thousands more people. Other parts of the COVID-19 post-viral syndrome include lesions on the lungs, other respiratory and cardiac problems, and a host of mental health issues that are compounded by the disease.

This summer, the Centers of Disease Control and Prevention (CDC) released a health advisory about the relationship between COVID-19 and multisystem inflammatory syndrome in children (MIS-C), a severe disease that requires aggressive treatment. By the end of July, the CDC reported 570 patients with the disease who also tested positive for either having or having had COVID-19. Though only 1 percent of these cases resulted in death, MIS-C is still considered severe; symptoms include shock, cardiac dysfunction, abdominal pain, and increased inflammatory markers, which can lead to other problems. Unsurprisingly, 40 percent of these children were Latinx and 33 percent were Black, tracking with a disease that has overwhelmingly affected people of color, particularly Black and Indigenous people. Now, cases of this syndrome have cropped up in adults (MIS-A), which means the disportionate effect of COVID-19 on communities of color will continue to grow.

The problems of decreased access to care and increased healthcare demand in communities of color and impoverished communities—which often overlap because of structural racism—are being exacerbated by the pandemic as it is. Already disproportionately affected by health disparities, these groups, along with those in long-term care facilities, pregnant individuals, and women (particularly of color), will undoubtedly be the ones most affected by what some are calling long COVID-19, not only because of the disproportionate infection rate but also because of continuing structural problems. As the United States approaches another COVID-19 wave, the news is only growing grimmer and begs a larger question: How will our healthcare system accommodate an influx of post-viral symptoms weeks, months, and even years after the pandemic is under control?

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“I expect there to be a lot more research into long-term effects of COVID-19,” a pathologist in Southeastern Pennsylvania, who has requested anonymity, told Bitch. “But how will these patients be treated when they seek care for vague, poorly defined symptoms that may not be reflected in abnormal lab values? Will a history of previous COVID-19–positive status be enough for them to be taken seriously? What if they were never tested for COVID-19 and don’t have that information in the chart?” To consider these questions, we can start with what we do know: the financial impact on the U.S. healthcare system, which can help inform the moves providers are willing to take. The American Hospital Association estimates U.S. hospitals lost $202.6 billion from March to June alone because of canceled procedures, surgeries, and check-ups, decreased emergency room visits, increased hospitalizations related to COVID-19, and other costs. In March 2020, California Governor Gavin Newsom called for a 62 percent increase in hospital beds, which only stretched hospitals thinner with increased equipment costs associated with COVID-19 alongside the already pre-pandemic levels of unemployment in healthcare.

Unemployment also has a stark impact on insurance: Before the pandemic, an estimated 31 million people were uninsured and more than 40 million underinsured. These numbers that have only risen (another way people of color, in particular, will be affected). Despite the growing shortage of physicians in the United States, physician demand is currently (though perhaps temporarily) in decline due to decreased opportunities and compensation from COVID-19. This is also true of nurses and other healthcare professionals. (Healthcare positions are among the top jobs held by women of color, which demonstrates another way the pandemic has affected people of color.) Indeed, more than 250 hospitals across the country have or will furlough workers, feeding into the problem of a smaller workforce to handle a post–COVID-19 population. But the focus on the larger economic costs sidelines a more important issue: the human cost.

Four million people live in nursing homes and long-term care facilities (LTCFs), which were the epicenter of the initial COVID-19 outbreak and remain at high risk for severe illness among residents. Job demands at LTCFs also ensure a high employee turnover rate, so these facilities will lack the literal manpower to handle the myriad symptoms associated with post-viral syndrome. Physician burnout, which has long been an issue with individuals working between 50 to 60 hours on average and up to 100 hours each week depending on speciality and place of work, has also been exacerbated by the pandemic. One-third of nurses also experience burnout, a problem that can’t be “sucked up,” either; for decades, studies have demonstrated the dangers of long-term stress on emotional, mental, and even physical health. As it is, a March 2020 study published in JAMA Network found that healthcare workers in China are experiencing anxiety, depression, insomnia, and other mental health concerns due to COVID-19; this is, undoubtedly, happening in the United States as well, particularly given the shortage of personal protective equipment (PPE) to keep frontline workers safe.

Taken together—monetary losses, worker shortages, and worker burnout—the U.S. healthcare system seems ill-equipped to handle the long-term sequelae of COVID-19.

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Burnout also puts healthcare workers at a higher risk for contracting COVID-19, due to the effects of increased stress on the body’s immune system—which also leaves them at higher risk for long-term consequences of the virus. Taken together—monetary losses, worker shortages, and worker burnout—the U.S. healthcare system seems ill-equipped to handle the long-term sequelae of COVID-19. What then do we need to do in order to prepare? Digital healthcare or telehealth is becoming more popular to address some demands, which may become helpful in mitigating future issues. In April, 14 percent of weekly outpatient visits were conducted electronically, a number which has since dropped to around 6 percent; however, these numbers vary drastically by medical specialty.

Increased supplies will also be key, not only in the form of PPE and clinical COVID-19 screening tools, but of ventilators, hospital beds, and the materials needed to run COVID-19 pathology tests. The pathologist Bitch spoke to explained it has been an “ongoing struggle to maintain our supply chain,” which impacts how many tests can be done, particularly as pathologists are the ones running the COVID-19 diagnostic tests. This all circles back to the finances: Even though hospitals are losing money, we have to find a way to ensure they get the equipment they need in order to continue taking good care of patients. The pathologist said they were most concerned about long-term patient treatment: “We have to take care not to leave patients out in the cold because their symptoms end up being ones that have traditionally been brushed aside by modern medicine because we don’t understand them. Hopefully, basic science research will take up the call here and help our understanding.

That will require funding and scientists who are interested in the problem. I’m hopeful the latter will be a slam dunk, and the former will follow…although that likely depends on who is calling the shots with national science research funding.” Though healthcare professionals are the ones clamoring for more serious attention on the issues facing us after COVID-19, individuals can also make positive differences. We can help prepare for these oncoming cases by voting, which impacts funding distribution down the line. We can also follow the guidance we’ve been hearing for months: wear masks, wash our hands, self-isolate. If cases of COVID-19 drop, then healthcare professionals will have the time and resources to deal with those who are dealing with the virus’s long-term sequelae. We should also actively think about ways to mitigate burnout and stress: Healthcare professionals need to have breaks and more frequently rotating schedules. If they get sick, whether from COVID-19 or burnout, then everyone loses. We absolutely need to be taking long COVID-19 seriously. The sooner we take serious action, the more likely we can mitigate the difficulties we’ll face in the future.

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by Naseem Jamnia
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Instead of writing, Naseem Jamnia spends way too much time on Twitter and Sidequest, where they're an editor. A native Chicagoan, Naseem now lives in Reno, Nevada, with their husband, dog, and two cats.