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Under America’s Broken Health Care System, Some Who Downplayed COVID-19 Received the Best Treatment For It

12 minute read

Jodi Click, who suffers from severe Crohn’s Disease, has long been accustomed to frequent doctors visits and medical procedures. But nothing prepared the 40-year-old for her lengthy battle with COVID-19 this year. After contracting the virus in March, she has spent months enduring the aftermath of the disease: unpredictable blood pressure, abnormal heart rhythms, and low oxygenation levels. She now relies on a walker for mobility.

Her wallet hasn’t recovered either. Because of her prolonged illness, she quit her teaching job, which meant she lost her employer health insurance and was forced to switch to a government insurance plan amidst a wave of health problems. She’s now struggling to afford basic necessities, while waiting weeks for her insurance to authorize payment for medical procedures, like an echocardiogram, that her doctors recommend. “I will probably have to sell my house and move home with my parents,” Click says, “even though I turned 40-years-old the week before I got sick.”

It is from this vantage point that Click—and millions of other Americans—have witnessed President Donald Trump’s dismissive attitude toward the effects of COVID-19, a disease that has already killed more than 210,000 Americans. After announcing a positive test on Friday and reportedly experiencing heart palpitations and decreased oxygen levels, Trump was admitted to Walter Reed National Military Medical Center, where he stayed in a suite equipped with its own kitchen and dining room, was attended by a team of top-tier doctors, and immediately received a host of treatments—with no delay for insurance authorization, and at no cost to himself.

As he prepared to leave the hospital on Monday, the President appeared to conflate his own extraordinary medical experience with the one available to most Americans. “Don’t be afraid of Covid. Don’t let it dominate your life,” he tweeted. “We have developed, under the Trump Administration, some really great drugs & knowledge.”

But the truth is, most Americans, including Click, have limited access to those same “really great” treatments and have very different experiences with the American health care system generally. Trump’s blasé attitude toward COVID-19 this week underscores not only his apparent lack of understanding of how most Americans access medical care, but also just how unequal America’s healthcare system is.

While Trump and some of his top associates, like New Jersey Governor Chris Christie, were able to voluntarily admit themselves to hospitals with what they described as mild symptoms, tens of thousands of Americans have been turned away at emergency room doors. In Detroit, 50-year-old bus driver Jason Hargrove‘s wife, Desha Johnson-Hargrove, brought him to the hospital twice in March before his symptoms were considered severe enough to allow a hospital admission. He died a few days later, before she got the chance to say goodbye. Millions more Americans have suffered at home with no treatment at all, avoided treatment entirely out of fear of sky-high medical bills, or been forced to play a bureaucratic cat-and-mouse game with their insurance companies to wrangle coverage before seeking care.

Trump also received an aggressive raft of treatments, including antibodies, a corticosteroid that’s usually provided to control the inflammatory response that sometimes occurs in more advanced stages of the virus, and remdesivir, an experimental antiviral treatment that’s still undergoing testing and was until recently reserved for patients who are moderately to severely ill and receiving intensive care. But most Americans cannot access such interventions. Click, for instance, never qualified for remdesivir, which was primarily limited to patients on ventilators in intensive care units when she was diagnosed. Even when it became more accessible to people experiencing symptoms similar to hers, she says her doctors told her she was outside the drug trial’s symptom-onset window to qualify for access.

“It’s definitely a difference in care based on where you are and which hospitals you have access to,” says Click, who has had to drive hours outside of her small Indiana community to get treatment.

The threat of high medical bills

While medical knowledge about the virus has improved significantly since March and April when Click and Hargrove were first diagnosed, many barriers remain for Americans who need the kind of treatment that Trump and Christie are receiving.

One of the biggest is cost. Nearly 30 million Americans did not have health insurance last year, and an estimated 12 million people have lost insurance through their employer due to the pandemic this year, according to the Economic Policy Institute. The Trump Administration created a program this spring that promised to cover COVID-19 treatment for people without insurance, but the policy is riddled with patient-sized holes. If they do not get their treatment covered through that spotty fund or a hospital’s financial assistance program, the millions of uninsured Americans would all have to pay out of pocket for any care they receive.

Those costs can be astronomical. The median price tag on a COVID-19 hospitalization for people without health insurance or who end up getting care out-of-network ranges from $34,662 for people aged 23 to 30, to $45,683 for those in the 51 to 60 age bracket, a study by FAIR Health found this summer. For those who have health insurance, the care would likely be covered by their plans—but only after they have paid their yearly deductible, which is often more than $1,000.

Even that is too much for many Americans. Nearly 40% of U.S. adults say they would not be able to cover a $400 emergency with cash, savings or a credit card that they could easily pay off. And half of American adults report they have delayed or put off medical care in the last year due to its cost, according to a survey from the nonpartisan Kaiser Family Foundation.

Of course, to confirm they need treatment, patients must first typically get tested for COVID-19—a seemingly simple requirement that was out of reach for Americans for months early in the pandemic. While Trump has repeatedly insisted that testing is free and available for all Americans, public health professionals say that’s often not been the case. In Denver, when Tami Matthews was alerted she was exposed to a coworker who had COVID-19 after being laid off in March, she had to pay for a test that came back negative despite her worsening symptoms. After that, she was never able to get another test despite six weeks of chest pain, trouble breathing, low oxygen levels, and multiple ER visits. She has now largely recovered, but ended up paying around $4,000 for treatment even with insurance through her husband’s job.

Even as testing has become more widely available in recent months, people around the country have reported waiting days or even weeks to find out whether they’ve contracted the virus. Others say they’ve received surprise bills for COVID-19 tests, even though they’re supposed to be free. The Centers for Disease Control and Prevention (CDC) recommends that people self-quarantine while awaiting test results if they believe they may have been exposed to the virus. For most Americans, these delays can mean days they cannot work and provide for their families, but for Trump and his circle, life continues.

The White House has said Trump and his advisors have used rapid tests to screen for the virus frequently, though the tests are not conclusive and can produce false negatives. Guests at Judge Amy Coney Barrett’s Supreme Court nomination ceremony in the White House Rose Garden on Sept. 26 took rapid Abbott ID Now tests and waited as little as 15 minutes to get those results before being allowed to enter. But the occasion has become a likely super-spreader event with at least 11 people who were present now testing positive.

President Trump Announces His Supreme Court Nominee To Replace Justice Ginsburg
Attorney General William Barr says goodbye to former New Jersey Governor Chris Christie and other guests after President Donald Trump introduces 7th U.S. Circuit Court Judge Amy Coney Barrett, 48, as his nominee to the Supreme Court in the Rose Garden at the White House September 26, 2020 in Washington, DC.Photo by Chip Somodevilla/Getty Images

On Oct. 1, Trump attended a fundraiser at his golf course in Bedminster, N.J. after a senior advisor he had been in close contact with, Hope Hicks, tested positive for COVID-19 that morning. Numerous members of Congress have defied safety precautions only to catch COVID-19 and put others at risk of contracting it. Wisconsin Sen. Ron Johnson attended an Oct. 2 fundraiser in his state, which has one of the worst outbreaks of COVID-19, while waiting for his results that came back positive on Oct. 3. And Senators Mike Lee and Thom Tillis, who both tested positive after attending the Rose Garden ceremony last week, serve on the Senate Judiciary Committee that is expected to begin hearings for Barrett on Oct. 12. (Despite the CDC recommending 14 days of quarantining, both Lee and Tillis have said they will only quarantine for 10 days, likely in order to be present for Barrett’s confirmation process.)

The prospect of losing health insurance looms large

After leaving her teaching job due to COVID-19, Click was able to find a government health care plan on her state’s marketplace. But that would have been impossible without the Affordable Care Act (ACA)—the 2010 law that the Trump Administration is attempting to dismantle. Under Trump’s watch, the Justice Department is now backing a lawsuit asking the Supreme Court to overturn the entire ACA, an outcome that will be more likely if the President succeeds in appointing Barrett to the bench.

For Click and tens of millions of other Americans, the consequences of the ACA being overturned would be dramatic. Before the ACA, insurers could use a person’s health history, or their pre-existing conditions, to deny them coverage, charge them higher rates or offer them fewer benefits. If the Supreme Court were to strike down the law, COVID-19 could be considered a pre-existing condition that could make someone like Click uninsurable.

“Assuming that the ACA were overturned, insurers probably would take into account whether someone has COVID-19,” says Karen Pollitz, a senior fellow at the Kaiser Family Foundation who studies health reforms and private insurance. “They might also consider if they had a history of COVID, if they’d recently been infected or ever been infected. They might take into account other risk factors.”

These risk factors could include everything from a person’s location to their job to how often they get tested for COVID-19. Anything that makes an insurance company think someone could be expensive would be fair game, Pollitz says.

The ACA also introduced essential health benefits, or minimum requirements for what most plans have to cover. Without the law, coverage of certain prescription drugs, oxygen treatments or rehabilitation services that someone with COVID-19 might need wouldn’t necessarily be covered, and many plans might drop mental health coverage, which could be important as many Americans struggle with the long-term effects of the disease.

Click, who already had Crohn’s Disease—a pre-existing condition—before contracting COVID-19, is worried how she’ll get by if the ACA is overturned next month and she is saddled with the costs of the numerous new ailments that her bout of the virus precipitated. “I’ve added heart damage and kidney damage and lung damage,” she says. “It’s just really scary what the cost would be to stay alive and have all of that added on, because it’s not like you could not have your oxygen on for a day because you can’t afford to pay for it.”

The health care vote

Health care is often a key issue for Americans when they head to the polls and the pandemic had already been top of mind for most voters. Now with the renewed Supreme Court fight over the ACA and President Trump’s own COVID-19 diagnosis, Americans’ concerns about their personal health are even more front-and-center. A Kaiser Family Foundation poll last month showed that more registered voters say Biden has a better approach than Trump to almost all health care issues. This week, two-thirds of Americans said Trump handled the risk of coronavirus infection to the people around him irresponsibly, according to a new CNN poll. Disapproval of the President’s handling of the coronavirus also reached a new high of 60% in the poll.

That Click and Hargrove and Matthews did everything right leading up to their diagnoses is all the more frustrating, they say: They were religious about washing their hands and social distancing. They wore masks and stayed home whenever possible.

Their precautions stand in stark contrast to Trump and his White House staff, who have jettisoned masks, against the advice of government scientists, and embraced in-person celebrations, rallies, and campaign events. “They flouted all these things and got the virus, and yet they get better care than the average American does,” Matthews says. “That makes me really angry.” At Barrett’s Supreme Court nomination ceremony on Sept. 26, Administration officials and other GOP allies were seen shaking hands and hugging without masks. During Trump’s first debate against Democratic Nominee Joe Biden three days later, the President’s family in the audience removed their masks despite the event’s host, the Cleveland Clinic, requiring them.

Johnson-Hargrove, Click and Matthews say they are keeping these ironies in mind when they head to the polls in November. It will be an especially difficult day for Johnson-Hargrove, who says voting was an activity she and her late husband relished doing as a couple. “Every year we went together,” says Johnson-Hargrove. “So [Jason] definitely will be on my heart and in my mind. And I will be casting that vote proudly, proudly in honor of my husband.”

Thanks to Trump’s response to the ongoing pandemic, she says, that vote will be for Biden.

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Write to Abby Vesoulis at abby.vesoulis@time.com and Abigail Abrams at abigail.abrams@time.com