The high price of long COVID

The second time Joy Tashjian got COVID-19, in December 2021, she could barely walk from her bedroom to the bathroom. Tashjian had been taking care of COVID patients for two years as a travel nurse and then as a staff nurse based in Salinas, California. She’d taken precautions, gotten vaccinated and boosted. She assumes she got sick at work.

Dizzy, exhausted, and suffering from muscle pain, she went to the emergency room. Her diagnosis: long COVID, which causes lingering symptoms after infection with SARS-CoV-2. Even with good health insurance, Tashjian’s ER visit cost her $1,100 out of pocket.

By some estimates, 10% to 30% of infected people develop long COVID, though a meta-analysis of studies involving nearly 50,000 COVID patients, published in August 2021, found that as many as 80% had long-term symptoms. A new report by the U.S. Government Accountability Office estimates that as many as 23 million people nationwide are affected by long Covid, and 1 million are too sick to work. Because long COVID can affect any organ system, people experience a wide range of symptoms — fatigue, trouble breathing, brain fog, heart and kidney problems, and mental health issues, among others. While there are no specific therapies for the syndrome or even a definitive diagnostic test, the costs of treating often-debilitating symptoms, plus the costs in lost work time, can be astronomical.

An analysis by two Harvard economists, published in October 2020, suggested that the COVID-19 pandemic could cost the United States more than $16 trillion — an astonishing 90% of our GDP —  including more than $4 trillion in long-term health and mental health impairments.

Since her expensive trip to the ER, Tashjian says she has managed her care largely on her own. Her biggest financial hit came in lost wages. She had to take six weeks off, mostly unpaid, because she hadn’t accrued much sick time at her new job. 

Her ailment preceded California’s 2022 COVID-19 Supplemental Paid Sick Leave Law, which requires public and private employers with 26 or more workers to provide up to 80 hours of additional paid leave for COVID-related needs. Tashjian can apply for these benefits retroactively.

People in 12 states with mandatory paid sick leave policies have some protection against lost wages due to long COVID. But according to New York University researchers, as of 2020, 18 states had laws prohibiting local governments from enacting paid sick leave regulations, leaving millions of people without a safety net.

Factoring financial unknowns 

With more than 30 million U.S. adults estimated to have had, or have, long COVID, the costs of care will add up significantly for individuals, employers and health insurers. The exact price tag is unclear, in part because nobody knows how long symptoms will persist. 

“The concern in the payer community is not the 30 days, it’s the 30 years,” said Dr. John W. Rowe, professor of health policy and aging at the Columbia University Mailman School of Public Health and former chairman and CEO of Aetna.

It’s also not clear whether the federal government or states will mandate certain long COVID treatments, the way some states require insurers to cover infertility treatment or autism services. Insurers are bracing for that possibility.

Meanwhile, people with long COVID should prepare to pay medical bills for the long haul, Rowe said. “If somebody told me they had long COVID, I would tell them not to buy a high-deductible health plan. I would tell them to get a good plan and pay the premium because they’re going to be a heavy user.”

That advice, of course, doesn’t help people who can’t afford better coverage, or any at all.

Long-haulers fend for themselves

Amanda Finley has had COVID-19 three times, first in early March 2020. She was uninsured but knew something was seriously wrong because she had to leave work early with what she describes as a “cough from hell” and pneumonia symptoms.

“I never left work early because I was working all gig jobs,” Finley said. “You don’t get (sick days) with a gig job. You work or you starve or you go homeless.”

Finley sought free care at a community health center. That early in the pandemic, though, the clinic didn’t have much care to offer. She went home and says she didn’t open the front door for four months.

“I just didn’t get better,” Finley said.

She’d heard of someone else who hadn’t recovered and started a Facebook group in June 2020 to connect with others. Finley expected 50 people to join; by September 2021, there were nearly 14,000 members. 

Group members don’t just compare symptoms, they also crowdsource financial support for one another, like a mutual aid society. Each week, Finley says, they highlight a different member and encourage people to chip in what they can. Raising $100 — with $5 donations — can allow someone to eat that month.

At best, this informal system provides only the flimsiest support. Finley tells the story of one long-hauler who got the money through the group to buy an inhaler. But his condition deteriorated and he couldn’t scrounge up the $60 for heart medication. He died in September.

Long COVID patients may be protected by the Americans with Disabilities Act and other legal safeguards for people with chronic diseases. The Biden Administration has issued guidance that long COVID can be a disability under various civil rights and anti-discrimination laws.

But like other people with chronic diseases, those with long COVID will need to fight for expanded access to health care coverage and less restrictive insurance rules. The Chronic Disease Coalition advocates for continued access to telehealth and for expanded access to Medicaid, Medicare and Medigap. The coalition also argues against insurance practices, such as prior authorization, that make it hard for people to get the care they need.

Beyond access to affordable health care, Finley says, funding is needed for food and housing for those with long COVID. She also urges support for continued research to better understand long COVID, particularly as it evolves.

Today, though, people with long COVID are often left to fend for themselves. “This should not just be on us,” Finley said.