Melissa Hamre’s nursing career was abruptly put on hold in March 2020, when she contracted COVID-19 while working at the Holyoke Soldiers’ Home. She was one of hundreds infected in the facility’s devastating outbreak.
She survived, but was soon racked with a cascading series of symptoms: debilitating fatigue, digestive issues, inflammation. That May, she developed two blood clots in her right arm. The last time she went into work was in July 2020. She left in an ambulance.
“My blood pressure had gone through the roof. I couldn’t control my heart rate,” said Hamre, 51. Insomnia, which has plagued her since her infection, sometimes keeps her up until 3 a.m.
Something else keeps her up, too: She can, quite literally, no longer afford to have long COVID. The disease has robbed Hamre not only of her health, but of her career, income, and insurance coverage. Since getting sick, she exhausted the short-term disability insurance from her job and about $20,000 in savings. Her health insurance has changed five times. In December, she was approved for monthly disability checks from Social Security, but it’s barely enough to cover her mortgage.
“I had been climbing that ladder for 20 years,” Hamre said of her nursing career. “It’s just absolutely devastating to be in this situation now and not be able to work my way out of it.”
Hamre is one of thousands of people in Massachusetts and millions across the country who face significant limitations resulting from long COVID — the term coined for the array of long-term health problems that can arise after a COVID-19 infection. Ailments, which often don’t show up on routine tests, range from “brain fog” to joint pain to heart palpitations.
Long COVID is not only having a profound impact on the health and financial stability of patients, but on the US economy as well, adding to the nation’s already acute labor shortage. A report from the Brookings Institution in August estimated that anywhere from 2 million to 4 million people are not able to work because of it, with the toll in lost wages ranging from $105 billion a year to $230 billion.
“Unfortunately, the costs are huge,” said David Cutler, a Harvard University economics professor who conducted a separate analysis that estimated the long-range costs of the illness to be $3.7 trillion. That includes lost earnings, higher medical care costs, and an accounting for a reduction in quality of life.
He likened the economic toll to the Great Recession, and said that if current trends continue, “it really would be very, very big for the economy at large.”
The Globe spoke with 10 self-identified “long-haulers” in New England, all of whom testified to the toll the condition has taken on their careers and finances: a therapist who has halved her working hours because of fatigue, a former hotel housekeeper who struggles to move around her house, a singer who now finds it painful to speak for more than a few minutes at a time.
Yet little is happening on the policy front to bring financial relief to patients.
It’s been more than a year since the federal government declared that long COVID could be considered a disability under the Americans with Disabilities Act “if it substantially limits one or more major life activities.” But many patients say it is a grueling process to get that designation, much less any financial assistance associated with it, since there are still no best practices for diagnosing or treating long COVID.
“It’s exhausting to have to not only try and take care of yourself, but then have to paddle upstream the whole time,” said Sue Booth-Daniels, 60, who caught COVID when she returned to the classroom in 2021 as a paraprofessional, and has not worked since the end of that school year. Her retirement plans are now on hold; she and her husband now both depend on his income and health insurance.
Many people with long COVID find themselves volleyed from specialist to specialist, from test to test, in search of evidence of their condition in order to qualify for financial assistance. Even with health insurance, copays can stack up, and the quest for proof of their illness can quickly prove exorbitant in its own right.
“I could spend thousands of dollars trying to get answers, and I’m still not going to get them,” said C. Dana Marvel, a therapist in Salem who caught COVID in March 2020 and began experiencing debilitating symptoms about a year later. She still works, but has had to let go of some clients and no longer takes on new ones.
Many long-haulers get stuck in a vicious cycle — they lack the stamina to wade through the bureaucracy to get financial lifelines, but can’t afford not to. Booth-Daniels, who struggles with severe headaches and difficulty thinking, recently applied for Social Security disability after putting it off.
“I just thought, ‘I don’t have the energy for this,’ ” she said. “But now we’re at the point where we really need it.”
Even if long-haulers can continue to work, that doesn’t spell the end of their financial troubles. Christopher Dansereau, an IT professional living in Fall River, got an accommodation from his company to take two days off a month after he caught the virus in March 2020. He was able to work remotely through the brunt of his illness, “and even that was a struggle,” he said. Even with continuing income and health insurance, medical bills put a significant dent in his family’s emergency fund.
“We definitely don’t have the cushion that we used to have, that’s for sure,” said Dansereau, 48.
For those unable to keep working, short- and long-term disability insurance may be an option. But those benefits are temporary and often not available to the lower-wage workers hit hardest by the pandemic, said Massachusetts-based disability attorney Patrick Hartwig.
Social Security disability benefits are often the next line of defense, said Hartwig, who has seen a “slow but steady increase” in long COVID clients coming to him for help getting federal benefits. But this, too, is a notoriously slow and difficult process. And, even if clients are approved, with an average monthly payout of $1,362 per disabled worker, the funds are hardly enough to live on.
“I’ve had a job since I was 14 years old. I was used to working and providing for my family,” said Layanna Stoker, a Dorchester resident who was recently approved for Social Security. Before catching COVID this year, Stoker, 45, worked as a housekeeper at a nearby Marriott.
Her doctor tells her she should focus on healing, not money, but she can’t help but fret. “You can’t tell me that I can’t worry — I have to have some place to live,” she said.
There are steps the government and employers can take to help blunt the financial impact of long COVID, said Katie Bach, author of the Brookings report on the disease’s economic cost. Employers could be more flexible with accommodations, allowing employees to work remotely or letting them take more frequent breaks. Congress could tell the Social Security Administration to expedite reviews for disability applications citing long COVID.
“There [is] complexity with anything we want to try,” said Bach, “but right now, there is just this huge gap where the safety net should be.”
It remains to be seen whether new policies will come to fruition. A $1.15 billion federal research effort into long COVID is underway, with several Boston-area hospitals conducting studies to better understand the condition. Representative Ayanna Pressley and Senator Edward Markey sponsored bills related to long COVID treatment and research earlier this year, though neither has made much headway in their respective chambers.
As colder months ahead bring fears of more cases and new variants, some worry long COVID cases and their associated costs will only grow. “I think we’re just beginning, unfortunately,” said Hartwig, the disability attorney.
In the meantime, long-haulers like Hamre are hanging on, unsure if they’ll ever again be on firm financial ground.
“Every day I tell myself I’m trying to do as much as I can, that my body allows me to, but many, many nights I’ve spent awake thinking about our financial situation,” she said. “I don’t know. It’s just always there.”