COVID long-haulers need more help, understanding from insurers

Disability Law /
Courtney Mulqueen
Latest posts by Courtney Mulqueen (see all)

By Tony Poland, LegalMatters Staff • Clinical trials to test the safety and effectiveness of potential long-COVID treatments have the added bonus of discovering treatments for other “invisible illnesses” with similar symptoms, says Ontario disability insurance lawyer Courtney Mulqueen.

However, with no immediate relief in sight for COVID long-haulers or those suffering from other illnesses that are difficult to diagnose and treat, insurance providers need to be more accepting of alternative care, she says.

The National Institutes of Health in the United States recently announced clinical trials for treating long-COVID that will focus on alleviating brain fog, memory loss and other cognitive problems; reducing viral persistence and excessive sleepiness and sleep disturbances; and treating autonomic nervous system problems, which include heart rate, breathing and the digestive system.

“This is excellent news. These trials cannot come soon enough. We often rely on the U.S. to spearhead this type of research,” says Mulqueen, principal of Mulqueen Disability Law Professional Corporation. “There can also be the positive ripple effect of finding treatments for the same symptoms related to other conditions that are either undiagnosed or are due to immunological conditions including chronic pain and chronic fatigue and other diseases such as Lyme disease and metabolic syndrome. 

Help to entitlement to benefits

“My long-term disability (LTD) clients, regardless of diagnosis, could soon have appropriate treatment options available to them as a direct result of the research that is being done to treat symptoms of long-COVID,” she tells LegalMattersCanada.ca. “This will not only help them in their recovery but also in proving their entitlement to disability benefits.” 

According to Long-Haulers Canada, long-haulers are those who have persistent symptoms for four weeks or more that are either continuous or arise weeks or months after initially recovering from the virus. Symptoms can include:

  • headaches;
  • cough;
  • tiredness or fatigue;
  • dizziness;
  • difficulty thinking or concentrating, also known as brain fog;
  • shortness of breath or difficulty breathing;
  • chest or stomach pain; and
  • change in smell or taste.

While there is no established definition of long-COVID, researchers say it presents a problem for both patients and clinicians because more than 200 symptoms can occur. 

A person typically suffers an average of 60 symptoms in nine different organ systems over nine or more months before recovering, according to a study published in the Lancet.

Those who tested negative may still develop long-COVID

Research suggests that even those who tested negative for COVID-19 can develop long-COVID.

“We estimated that there were approximately 10 million people in the first year of the pandemic in the U.S. who are in this predicament: who got COVID, got long-COVID, but tested negative for COVID,” researcher Igor Koralnik told STAT.

Long-haulers can feel fine one day and then weeks later be unable to get out of bed. They can also suffer a lower quality of life than those with serious and even life-threatening medical conditions such as Parkinson’s disease or late-stage cancer, according to some studies.

“So much is unknown, which is what makes it so daunting for long-haulers to claim the insurance benefits they need and deserve,” says Mulqueen. “Researchers estimate 10 per cent of those infected with the virus suffer from long-COVID. Sadly, researchers say many are not going to doctors because they have given up hope.”

She says in the past year she has had an increasing number of inquiries about long-haul LTD claims. These claims can be difficult to prove because they are based on self-reported symptoms that may not stem from a confirmed diagnosis, Mulqueen says. 

“For those clients with long-COVID, even a diagnosis might not be sufficient to persuade an insurance company of the severity of the impairment,” she explains. “Insurance companies struggle with invisible conditions where it is self-reported.

‘People don’t choose to go on disability’

“I often find that when these claims are denied, insurers are not giving the person the benefit of the doubt,” Mulqueen adds. “There is a concern that these people may be exaggerating or malingering or have some other reason for being unable to work when in fact they are legitimately struggling. People don’t choose to go on disability. Who wants to receive a benefit that is only a small percentage of their earnings?”

One problem with making a claim is trying to determine what is at the root of the ailment, she says.

“People may not know why they suddenly cannot get out of bed or why they have strange new symptoms,” says Mulqueen. “They may not even associate what they are experiencing with COVID. And because there are so many possible symptoms, that makes it difficult for doctors to definitively say it is long-COVID.”

Another hurdle faced by long-haulers is that insurance companies commonly use what she refers to as a redemptive arc to assess recovery that may apply to most injuries or illnesses but not all.

The redemption arc is a storytelling device for a type of character development in which a person atones for their flaws and transforms from bad to good. 

Conditions may not fit neatly into insurance timelines

“The arc is very objective. An insurer will look at the condition to determine the treatment and the expectation for recovery,” Mulqueen says. “Unfortunately, long-COVID conditions do not fit neatly within those timelines or within those acceptable or appropriate treatment lists.

“Insurers often want to see that the person is receiving appropriate treatment,” she adds. “But with long-COVID, it can be difficult to demonstrate what is appropriate.”

Some disability policies insist the claimant undergo traditional medical treatment, says Mulqueen.

“Many people who experience lingering symptoms that are long-COVID related have tried everything and nothing seems to be working for them,” she says. “They may try alternative types of medicine or therapies that provide a little bit of relief from their symptoms. Not necessarily a cure, but enough that it helps them feel better. However, many insurance companies don’t seem to like that. They prefer to see some traditional medicine, which often doesn’t work.”

Mulqueen says it is not unusual for claims to be terminated or denied because someone opted for alternative therapy when traditional treatment failed to provide relief. 

People need financial help now

However, with long-COVID treatment still in the infancy phase, it is incumbent on insurers to provide people with the financial help they need now, even if it means considering a non-traditional approach, she says.

“It is a very long road and insurance companies need to start to appreciate that these are not easy conditions to assess because there may not be a diagnosis. I am hoping that insurance companies are coming around to the need to consider all possibilities,” Mulqueen says. “I do see approach in some litigated cases. 

“Long-haulers are doing everything possible to alleviate their pain. It shows that they are motivated,” she adds. “Often, they are paying thousands of dollars for these non-traditional, alternative medication treatments out of their own pocket. They would not be doing that if it did not help. I am hopeful that lends credibility to their LTD claims.”

The sooner effective treatments become available and accepted by the medical community the clearer the insurance picture will become, Mulqueen says. 

People can prove they suffer from a legitimate condition

“People will be then able to prove not only that they suffer from a legitimate disabling condition,” she says, “but also that they are receiving the appropriate treatment required to be eligible for LTD and other disability income benefits.”

Mulqueen says while she understands it can be frustrating to deal with long-COVID claims, she encourages people not to lose hope and seek legal help.

“I know some people believe the litigation process will only add to their stress and possibly worsen their condition but the opposite can be true,” she says. “Having someone fight for their rights allows them to focus on their treatment and their recovery. Just passing that responsibility off to somebody can be a relief. 

“What really makes things worse is if someone is without money to pay for treatment or their everyday living expenses,” Mulqueen adds. “I tell my clients to concentrate on their doctor’s recommendations and I will deal with the insurance company for them.”