The life-altering cost of long Covid: 'It's a full-time job to get better'

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After contracting Covid-19 in December 2020, Anne, a 61-year-old nurse in Boston, still doesn't feel like her old self. She tires easily and has to meticulously record everything she has to do each day so she doesn't forget. She's more irritable than she used to be, and has trouble focusing for extended periods of time.

Anne, who asked for her last name to be withheld to protect her privacy, is one of the estimated tens of millions of Americans with post-acute Covid syndrome, or long Covid, as it's known colloquially. It exacts an often debilitating physical and mental toll on patients, and doctors and scientists are working tirelessly to find treatments for its myriad symptoms, such as brain fog and extreme fatigue.

Less talked about are the financial costs patients incur from months of doctor visits, prescriptions, procedures, lost work, mental and physical therapy and more.

Though her husband continued to work throughout her illness, Anne was the breadwinner, earning well into the six figures before she contracted Covid. Now, she has been out of work for 14 months: first on short-term disability leave, then long-term since July 2021. She was recently approved for Social Security Disability Insurance — long Covid was named a disability under the Americans with Disabilities Act last year — which helps, she says.

White House announces plan to deal with effects of long Covid
White House announces plan to deal with effects of long Covid

But in total, Anne lost over $100,000 over the course of 2021 in income and retirement contributions relative to 2020, before she was sick, according to tax documents reviewed by CNBC Make It. She's also had to pay over $2,000 in out-of-pocket expenses for co-pays and prescriptions, plus she has paid hundreds of dollars more out-of-pocket for health insurance coverage since she has been on long-term disability.

In addition to losing most of her income, long Covid has also taken away her sense of self. "I am grateful for the financial support, however, I don't like what it represents, that I am disabled and not able to work," she says. "I've never needed help my entire life, and that's hard."

Before, she envisioned retiring a few years early; now, her and her husband's retirements will be delayed due to the financial hit they've taken.

"We have a financial planner, so we had a plan. But this wasn't in the plan," she says. "I lost a lot of money."

What is long Covid?

Though long Covid can feel isolating, Anne is far from alone. While state health departments and the Centers for Disease Control and Prevention do not track case counts, recent research indicates 10% to 15% of people who had a case of Covid-19 also develop long Covid symptoms. In the U.S., that could equate to over 11 million people. Other estimates double that figure in the U.S. alone.

Like Covid itself, the condition doesn't discriminate, affecting people young and old, previously healthy and with pre-existing conditions, says David Putrino, director of Rehabilitation Innovation for Mount Sinai Health System.

The illness presents itself in different ways depending on the patient. Some people suffer from brain fog, fatigue and shortness of breath for months after first falling ill from Covid, their energy easily depleted, or their sense of smell or taste permanently altered. Other symptoms can include heart palpitations, dizziness when standing, mood changes, headaches and changes in menstrual cycles.

Treatments vary depending on the patient and the symptoms they present, and can be experimental. In some cases, the Covid-19 vaccine appears to help alleviate symptoms.

It's not just the cost of treatments and medical bills patients contend with, Putrino says. These lingering symptoms can profoundly affect their productivity at work, or their ability to work at all, as his research shows

Long Covid care is no joke. Symptoms are debilitating and extremely concerning.
David Putrino
Mount Sinai

"Long Covid care is no joke. Symptoms are debilitating and extremely concerning," says Putrino.

In fact, other studies suggest that about 1.1 million Americans may not be working due to long Covid at any given time, contributing to the current labor shortage in the U.S. That doesn't take into account those who have reduced their hours, gone part-time or taken a demotion — and likely a pay cut — because of their illness.

The hardest part of the past 14 months for Anne has been her inability to carry out all of the work duties she previously performed for decades without issue as a discharge nurse, like managing multiple caseloads at one time. She attempted to return to work for a few part-time shifts last spring, but lasting symptoms make it nearly impossible for her to focus for an entire workday and be as productive as she once was. 

"I couldn't process information, the noise was distracting," she says. "It was very humbling. I basically had to tell people I look OK, but I'm not OK."

A disruption to life as we know it

Like Anne, Ken Todd has suffered from long Covid for a full year. Before, the 53-year-old routinely ran marathons; now, he's lucky to get outside of his New York City apartment for a walk around the neighborhood. Todd's energy depletes quickly; it is difficult for him to read or look at a computer screen for longer than a few minutes at a time without getting dizzy.

That impedes his ability to perform all of the duties for his job in marketing at a media company in New York where he has worked for 25 years. He went on short-term disability for 26 weeks in 2021, and is currently working out a part-time arrangement with his employer.

Todd says he is lucky to have good health insurance and an understanding boss. But he's still spent about $4,000 on out-of-pocket medical expenses, including physical therapy appointments, seeing specialists, glasses to help with computer work and other treatments like acupuncture. He also lost 30% of his income while on short-term disability last year, as his plan replaced 70% of his pay.

Ken Todd is a Covid Long Hauler.
Courtesy of Ken Todd

It's not just the cost to him individually that should be considered, he says, but the cost to his employer and others, as well. Long Covid will profoundly affect worker's compensation, disability insurance, health insurance and more going forward, as Claire Pomeroy writes in Scientific American.

Plus, all of Todd's lost productivity adds up. Multiply that by millions of people in the U.S. alone, and long Covid is a drain not just on the individual, but on society as well. Long haulers like Todd bear the brunt of the burden, but long Covid could disrupt life as we know it for years to come.

"All of these doctors appointments, the cost of my insurance coverage, the cost to my company, lost productivity," says Todd. "One person impacts a lot of people."

Beyond the financial costs, an untold amount of time is spent managing the condition, between arranging medical care, dealing with their insurance companies, applying for disability benefits and trying out new therapies. All of that needs to be handled between bouts of fatigue, headaches and other ailments, as well as the responsibilities of normal life. That just adds to the weariness and frustration many patients feel.

"I'm very fortunate that I have access to health care, and I wasn't questioned" about the illness, says Anne. "But it's a full-time job to get better."

A life-changing disability 

Much remains unknown about long Covid, including how long it might last, or if patients will relapse once they feel better, says Mount Sinai's Putrino. That's another worry for patients like Anne.

"There is no health-care provider who can tell any Covid long-hauler if we will ever recover, or if there are long-term health implications down the road," says Anne. "You are healthy one day until you are not, and that is a big adjustment."

And costs will vary for each patient, depending on their symptoms, how long they last and their severity; the patient's insurance; where they are treated; if and how their jobs are affected; and myriad other factors. Some patients owe a few hundred dollars after medical care, while others are stuck with bills for hundreds of thousands of dollars.

In the U.S., all of that is amplified for the 8.6% of the population without health insurance coverage. To avoid costly medical bills, they may forego care they need altogether, which could exacerbate the effects of long Covid down the road. Considering low-income Americans were hit harder by Covid-19 than richer Americans, this is concerning, says Putrino.

What is clear is that policy makers, health professionals and employers need to continue to take the condition seriously, says Putrino. 

One of the best things employers could do to help workers with long Covid is to work with them so that their work responsibilities are easily manageable and don't trigger their symptoms, he says, like Todd's employer has. And because long Covid falls under the Americans with Disabilities Act, employers must make a reasonable attempt to change the work environment so that employees with the condition can do their jobs.

"What we need to do moving forward is make sure that workplaces are understanding and not ableist, so that individuals with long Covid can continue to maintain jobs," Putrino says.

Todd says he hopes everyone realizes the toll that the condition can take on those suffering from it — especially on those less fortunate than him, who do not have health insurance, or who work physically demanding jobs.

"If I worked in a warehouse having to do physical activity, I couldn't do it," Todd says. "This is a life-changing disability."

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