- On top of the toll it takes on their health, long Covid patients report a devastating impact on finances, including massive medical expenses and job losses.
- "We're barely making ends meet," said Teresa Harding, who hasn't recovered from her bout of Covid in the summer of 2021.
It took three months for Teresa Harding to open her termination letter.
"I couldn't look at it," Harding, 47, said. For seven years, she'd worked at a pain management center in Lexington, Kentucky. "I enjoyed my co-workers and our patients.
"It was a fun, exciting job," she added.
But after a serious bout with Covid in July 2021 that landed her in the hospital, Harding never got better. Unable to work, she was laid off in January.
"I just sit at home, watching movies that I've seen before but don't remember," Harding said. "I've lost my purpose."
She and her husband, Roy, also need to pay around an extra $300 a month for treatments for her lingering symptoms of memory loss, severe fatigue and migraines.
"We're barely making ends meet," Harding said.
On top of the toll taken on their health, patients with long Covid — a chronic illness with symptoms that persist for months or years after infection — describe a devastating impact on their finances.
Nearly half of people with long Covid reported increased medical expenses, according to a recent survey conducted by the Patient Advocate Foundation. The nonprofit polled 64 people with the condition between 2020 and 2022. More than a third of respondents said their income had gone down as a result of long Covid.
"Long Covid is a prime example of a condition that will create big expenses because it has multiple symptoms, any of which could require distinct medications or treatments," said Caitlin Donovan, a spokesperson for the National Patient Advocate Foundation, the PAF's sister organization focused on educational resources.
"It also directly threatens patients' ability to work consistently," Donovan added.
As many as 23 million Americans are struggling with the chronic condition, and "this number will only continue to grow as Covid-19 continues to circulate," according to a recent report by the U.S. Department of Health and Human Services. The government agency warned that the illness may affect people's financial stability, "leading to an increased chance of eviction or homelessness."
Although the Biden administration is researching long Covid and gathering task forces to address it, patients still describe difficulties navigating the existing safety net and the absence of any specific new protections or aid to which they can turn. Earlier in the public health crisis, the government expanded unemployment benefits and sent direct payments to households.
"Long Covid is as much part of the pandemic as is the acute phase, during which the government went to great lengths to treat people and save lives," said Oved Amitay, president of the Long Covid Alliance, an advocacy group. "We should have the same urgency and intentional effort to address this."
Nearly three years after Sharon Sunders got Covid, she's still coughing.
In the spring of 2020, when months had passed since she'd first contracted the virus, Sunders tried to return to her job as a project manager at a marketing agency in Minneapolis.
Almost immediately, she realized she wasn't up for it.
"There's no way I could keep working," said Sunders, 59. "My memory stinks.
"I'm short on breath when I talk or move around," she added. "There's severe exhaustion, too."
Fortunately, Sunders had disability insurance through her job and has been able to live off those payments. However, they cover just about half of her prior earnings.
"It's enough to meet our basic needs, but not anything else," she said.
Sunders had planned to work for at least five more years to build up her nest egg. Those plans are now foiled, and she and her husband, Joel, are considering beginning to withdraw from their retirement savings years before they'd hoped.
"It's had a pretty dramatic effect on my retirement planning," she said. "It's scary."
She's also been hit with a slew of additional costs related to her condition.
"They've done MRIs of my heart and lungs; I've been to cardiologists and pulmonologists," Sunders said. "I've had more tests than I can remember."
One Harvard University researcher estimated that long Covid could leave patients with an extra $9,000 a year in medical expenses.
Over the last two years, Sunders has also been denied twice for Social Security Disability Insurance, the federal benefit meant to supplement the income of those physically unable to work.
The Biden administration announced in July 2021 that long Covid could be considered a disability under the Americans with Disabilities Act, but patients and experts say it's incredibly difficult for those with the condition, which can be tricky to diagnose, to get approved.
"A lot of people with long Covid are being denied Social Security disability insurance," said Dr. Monica Verduzco-Gutierrez, professor and chair of the Department of Rehabilitation Medicine at the University of Texas Health Science Center at San Antonio. Verduzco-Gutierrez works primarily with Covid patients through the clinic she established in 2020. She also spends a lot of her time on disability applications.
Of the long Covid patients she has seen, only 2 out of 50 who have applied for SSDI have been approved so far, she said.
"They may not have the resources to go through the process," Verduzco-Gutierrez said. "They're having to hire attorneys. Some of them are just giving up."
Sunders is adamant that she qualifies for the benefit, and refuses to give up. She's currently involved in her third appeal of the government's decision to reject her.
But the fight has worn her down even more.
"I usually have about a good hour a day," she said. "It's hard for me to respond to all these requests for medical records."
To date, the Social Security Administration has flagged about 44,000 disability claims nationally that include Covid as one of the medical conditions, according to agency spokeswoman Nicole Tiggemann, making up just 1% of all disability applications the agency has received.
To be approved, "a person must have a medical condition or combination of conditions that prevents the individual from working and is expected to last at least one year or result in death," Tiggemann said.
Sunders wishes the Biden administration would do more to help those financially struggling with long Covid.
"Our government is abandoning us," she said. "But I'm just the beginning; there's a tidal wave of us coming."
Harding feels the same.
"I read in my support groups daily how people are losing their jobs because they're no longer physically able to perform them, but you can't live on nothing," Harding said. "If the government doesn't acknowledge what's going on, you're going to have tons of people without homes, going hungry."
The White House did not respond to requests for comment.
When her paychecks stopped coming in, Harding had to cash out her 401(k) retirement savings. She had about $15,000 in the account.
In the following months, she and her husband have also racked up more than $8,000 in debt on their credit card.
"We put food, gas, medication and hospital bills on it to make sure we're able to pay for our car and home," she said.
Harding applied for SSDI in August, but hasn't heard back yet. The wait is stressful. And a person in the Social Security office had been discouraging.
"They said that it's usually a two- to four-year battle to get it," she said.
— Jessica Dickler contributed reporting.