Chantal Renaud and her husband David Lackey suffer from debilitating COVID-19 long-haul symptoms and have been unable to work, but Renaud's disability claim has been denied, leaving them with the difficult decision to sell their home. Photo provided by Chantal Renaud.

Chantal Renaud has spent much of the last nine months suffering from breathing difficulties, profound fatigue and heart issues, seeing specialists and undergoing a battery of tests to determine what could be wrong and how to get better. She had no prior health issues, but now finds even the simplest task physically draining, making work all but impossible.

For Renaud and others like her, this has meant relying on savings, government assistance, an understanding workplace, and disability insurance to help bridge financial gaps. But with her long-term disability claim denied, Renaud and her husband recently came to the difficult decision they would have to sell their home.

She is one of an unknown number of patients who had or believe they may have had COVID-19 and are being denied coverage by their workplace insurance company in what one lawyer describes as becoming a “huge problem.”

“Fighting this debilitating illness is really only a small part of a much bigger struggle … we have to plan for the worst now,” Renaud told CTVNews.ca in an interview.

Her first symptoms struck in mid-April. They lingered, improved, and worsened in turn throughout the year as she tried to keep working -- until her body finally crashed. She never tested positive for COVID-19, but in retrospect, believed she caught it from her husband, David Lackey, who got infected prior to the spring lockdown.

Specialists, chest X-rays, echocardiograms, ultrasounds, and visits to the emergency department failed to determine what was wrong even as doctors suspected it was likely related to the coronavirus, said Renaud, who last year also developed postural tachycardia syndrome, characterized by an abnormal increase in heart rate after sitting up or standing, and is on heart medication.

Renaud went on short-term disability leave, but tried to go back to her communications job in Ottawa twice after feeling somewhat better. The first time, she worked a single full day and ended up crashing for the next 11, barely able to move or get out of bed, she said.

She tried again to return to work, but much more gradually the second time. That effort lasted seven weeks, ending after the introduction of some full work days worsened her breathing difficulties and exhaustion.

She fought to get her remaining weeks of short-term leave, which were initially denied, and won on appeal. But when those ended and her long-term disability claim was rejected, Renaud decided to hire a lawyer, filing a statement of claim in December against the insurance company.

“My husband is in the same boat I am,” said Renaud, explaining that he too has had similar lingering symptoms, in addition to sciatic nerve pain and a sinus infection that would not go away.

With little income coming in, Renaud and her husband do not want to become heavily indebted over their home, which is not yet listed. It will take some time to get it ready to sell, she said, given the physical exertion required to prep -- let alone move. They can only do a little each day and are considering help.

Renaud and her husband are among the many Canadians who say they are COVID-19 long-haulers -- people who were infected by the virus, or suspected they were infected -- and developed symptoms that lasted weeks and months.

A typical day for Renaud means sleeping at least 12 hours. She is able to make a little bit of food, but hasn’t really cooked in a long time. She can go out briefly for a short walk around the block or a simple grocery run, but must take long breaks in between her activities. Pushing herself too hard leaves her bedridden with crippling fatigue and breathing problems. A recent media interview she conducted left her completely exhausted. Her husband’s days are similar too, she said.

She is functioning at 10 per cent of her pre-COVID life and has lost a lot of hair, which she said may be her body’s reaction to her severe illness, rather than a symptom of the virus.

“The fatigue is really a big part of it. It’s debilitating and I constantly have to pace myself,” Renaud said.

Chantal Renaud and David Lackey are pictured on a trip in 2018. Renaud has breathing difficulties, profound fatigue and heart issues and says she is functioning at 10 per cent of her pre-COVID life. Photo supplied by Chantal Renaud.

CLAIMS ASSESSED “CASE BY CASE”

Despite her circumstances, Renaud says she is luckier than others and also has the support of her company and her doctors.

“A lot of employers have actually been really more tolerant of people’s post-COVID (situation),” said Daniel Lublin, a partner with employment law firm, Whitten & Lublin. It has been the insurance companies that have been more difficult, he noted.

“The amount of claims that are being denied are skyrocketing right now. This is a huge, huge problem where people are unable to get appropriate coverage.”

There is currently no data available to determine what the trends have been relating to COVID-19 claims, according to the Canadian Life and Health Insurance Association (CLHIA), the industry group to which insurance companies directed CTVNews.ca’s queries. The group also could not speak to specific claims, but a spokesperson said in an email that coverage is “generally based on an assessment of an individual’s condition and the requirements of their job.”

This is a new virus, there’s no history or precedence for it, several employment and disability lawyers told CTVNews.ca, and no one knows yet what this disease is going to be like in two years or over the long term. With policies differing from insurer to insurer, there are no easy or straightforward answers on why disability coverage might be denied, they add.

“This is such a new area, where new information is constantly coming up, it’s really difficult to pinpoint how the issues are going to evolve over time,” said Yinka Oyelowo, a lawyer focused on workers’ rights at Yinka Law.

In some instances, employees are also placed in the difficult situation of being barred from returning to work by their employer due to COVID-19 concerns, but denied coverage by the insurance company while they are on leave, according to Oyelowo. It’s a tough situation, though not insurmountable, she said.

One insurance company that responded to CTVNews.ca’s queries regarding disability claims declined to comment on hypothetical or specific examples or cases, citing privacy considerations.

“We empathize with anyone who has lost a loved one to COVID, or who is struggling themselves with this new virus that has so many unknowns,” said Diane Bezdikian, a senior vice-president of plan member services with Canada Life, via email, adding that claims related to COVID-19 are assessed on a case-by-case basis, just like any other claim, in part due to varying plan coverages.

“Generally speaking, companies with Canada Life’s standard disability group coverage provide their plan members with a level of income replacement, for a specified time frame when they can’t work due to disease or injury. Plan members are eligible for disability benefits if they meet the plan’s definition of disability, including where disability is caused by COVID-19 infection.”

NOT THE ONLY ONE

Renaud is not alone in grappling with the consequences of having coverage denied.

Candice Makhan said she began experiencing unusual symptoms at the beginning of March -- before the first lockdown, before COVID-19 testing was widely available, and before the medical community and the public knew much about the wide ranging symptoms that can develop and linger with an infection. A week earlier in February, she had attended two private wine events with people who had travelled internationally, she recalled.

Makhan said she developed heart palpitations, pink-eye, and headaches -- but they went away, and for two and a half months, she felt pretty good. Then, many of the original symptoms flared up and became much worse. She went for a COVID-19 test, but by then it had been months since the symptoms first appeared, and the results, unsurprisingly, came back negative.

She has lost 42 pounds since March, she said, and also suffers from chest pain, dizziness, vision problems, and hair loss.

“I spend my day in bed and pace myself to get up for meals, shower and to attend medical appointments. My husband has had to take over all the household duties like cooking, grocery shopping, cleaning and any driving,” Makhan said.

She worked from home until August, at which point there were days where she could barely sit up. With her doctor’s support, she applied for short-term disability leave, but her insurance company declined her claim because she had no confirmed diagnosis, Makhan said. She appealed twice, and was denied both times. The insurer did not respond to queries from CTVNews.ca.

Mark Yazdani, a disability lawyer with Yazdani Law Office, said a client’s eligibility should not be dependent on diagnosis.

“The definition of disability varies from policy to policy, but it’s almost uniformly a variation of, do you suffer from either an illness or you suffered an accident that has prevented you from carrying out your job duties,” Yazdani said.

“And if you have the symptoms and they’re severe enough that they prevent you from being able to do your specific job duties, then you should qualify for disability benefits, even if you don’t have a specific diagnosis.”

Like Renaud, Makhan’s employer was supportive and continued to pay her while she was on unauthorized leave and as she tried to get her short-term disability claim approved. But now, she has been asked to return to work and has not been paid since late December.

Also like Renaud, Makhan took a slew of tests and scans and saw specialists including a cardiologist, but no one could pinpoint a diagnosis other than it seemed likely to be COVID-19, she said.

Unlike something like cancer and chemotherapy, where the diagnosis and treatment are clear, the post-COVID symptoms long-haulers experience are not always showing up on medical imaging, Lublin, the employment lawyer said.

Makhan said she spent nearly $3,500 out-of-pocket for three different antibody tests from private health-care providers in late fall, all of which came back negative. The costs included a hefty membership fee and medical assessment required by MedCan, one of the private health-care clinics, in order to take their antibody test. Antibody tests for COVID-19 are generally not covered by OHIP, except in specific instances.

She shared letters of support from her doctor, who was following up with her on a weekly basis.

“She is quite eager to … return to a state where she would be physically fit to work,” her doctor wrote in one letter, noting the cardiac MRI, chest CT, Neck MRI and ophthalmologist referrals that were pending at the time and Makhan’s proactive efforts to improve her health situation.

“Given the severity and frequency of her ongoing symptoms, she is not medically fit to work at this time.”

Candice Makhan has been dealing with worsening COVID-19 symptoms since early March. She is unable to work, but has had her short-term disability claims denied. Photo provided by Candice Makhan.

DOCTOR’S NOTE NOT ALWAYS ENOUGH

A letter from the doctor in itself, however, is not always enough for insurance companies, who have their own team of medical experts determining eligibility, lawyers say.

Most of Yazdani’s clients who have had their claims rejected had physicians who supplied letters and forms stating that the person was unable to carry out their job.

“Disability is a grey area question. Oftentimes, there’s no proof, there’s no objective way of proving one way or another if somebody is disabled or not,” Yazdani said.

It can come down to how much evidence you can produce, Oyelowo said, adding that a doctor’s note should be specific in describing how an employee’s health issues impact their ability to work. “Oftentimes it will depend on how your medical doctor says how the disease will actually impact your functional abilities,” she explained.

This would include explaining exactly how the symptoms would hamper an individual’s ability to do their job. An example might be specifying that their persistent headaches, vision problems and/or fatigue prevents them from being able to sit in front of the computer for long periods of time.

“One problem ... is they are focused almost exclusively sometimes on the physical component of the job, when oftentimes a desk job has a high cognitive component as well,” Yazdani said.

“If you’re required to review detailed reports or come up with analysis, or you’re working in an occupation that has high responsibility, or significant time deadlines -- if you suffer from severe fatigue -- that’s going to impact your ability to focus, to properly carry out your job duty.”

Despite the challenges facing claimants, Yazdani says few cases end up in court because it is a risk for both insurance companies and plaintiffs, and that the vast majority of disability cases end up resolved or in settlement.

Still, it may be cold comfort for long-haulers like Renaud and Makhan, fighting to get their coverage while struggling with crippling health problems.

“I’m still not well, I’m worse,” said Makhan, who is consulting with a lawyer on her next steps.

“But I’m stuck in a difficult position of trying to prove that something is wrong with me.” 

Edited by Producers Sonja Puzic and Michael Stittle