As the medical community struggles with how to address lingering health issues related to COVID-19, those patients — known as long-haulers — are struggling with more than just their health.
Barrie-based lawyer Steve Rastin says a battle is brewing between those with long-haulers who have been unable to work and are looking to use their benefits to survive, and insurers refusing to pay up.
A year-old British study found that 10 per cent of those who have been infected with COVID-19 are believed to have symptoms that do not resolve over the subsequent months, describing it as a multi-system disease.
But Rastin figures that could be the bottom end of the scale — an American study suggests it could be up to 30 per cent.
But even at 10 per cent, that represents 140,000 Canadians of the 1.4 million infected with COVID-19 who could be long-haulers.
Their struggles with insurance companies over benefits have already resulted in lawsuits.
“We don’t have a working definition of long-haul COVID” outlining how long a patient has symptoms before they’re considered long-haulers, Rastin said. “There’s not one unified set of symptoms for everybody.”
Long-lasting symptoms often include fatigue and brain fog. But some people have also complained of muscle aches, shortness of breath and/or gastrointestinal issues as well as other medical problems.
A local respirologist earlier told BarrieToday that the symptoms are varied and the medical community is stumped about how to deal with the underlying cause of all the problems.
Some with lingering symptoms who have been off work for an extended period have been hitting a brick wall as they apply for long-term disability benefits. Rastin says insurance companies want proof that the applicants are indeed ill and unable to work.
“The problem that the long-haulers have is that there is no established diagnostic criteria for this, there’s no testing for this… a lot of insurance companies are requesting objective evidence,” he said.
Susie Goulding, who launched the COVID Long-Haulers Support Group Canada, which now has about 14,000 members, says that lack of definition of what makes a long-hauler is the problem. Insurance companies have relied on that “loophole” to prevent disability payouts, she says.
“They’re denying claims left, right and centre,” Goulding said. “Because there is no definition, these insurance companies don’t have any code to write off of.
“The people who haven’t been supported throughout this whole pandemic are the people who actually have been affected by the virus directly, who have the virus and who aren’t able to work. They’re falling through the cracks," she added.
Goulding, who had the virus during the first wave, is critical of Canada’s national health system, which only acknowledged long-lasting COVID-19 symptoms in recent weeks, much later than other countries, she says.
In a July 7 statement, Canada’s chief public health officer indicated the prolonged or recurring symptoms, it referred to as Long COVID, are recognised by the World Health Organization as “post-COVID-19 condition."
Initial findings led by the Public Health Agency of Canada indicated that most — 83 per cent — of laboratory-confirmed COVID-19 patients continued to experience one or more symptoms within four to 12 weeks and 56 per cent beyond 12 weeks.
“Due to low certainty in the evidence, further research is needed to determine the true burden of post COVID-19 condition,” said the statement from the country’s chief public health officer.
The delayed recognition has resulted in delayed efforts to come up with a definition of what constitutes a long-hauler, leaving a whole community that is not ready, able or willing to work and with no access to benefits, says Goulding.
Some of the other stumbling blocks Rastin and Goulding point to are an inability for some to see their family doctors to get documentation of the objective evidence insurance companies are asking for and, for some of the early COVID-10 patients like Goulding, not having positive testing results.
“We’ve had these problems before,” said Rastin, pointing to chronic pain resulting from fibromyalgia, which was difficult to diagnose, and even Lyme disease. “It’s a post-infection chronic disease syndrome.
“The insurance companies have generally put people’s feet to the fire: ‘Well, you have to prove that you have this problem'.”
Rastin sees a major legal battleground developing as those patients struggle to prove they’re too disabled to work. He says it’s fundamentally unfair that, after paying long-term disability benefits, that long-haulers are now being denied benefits.
All this, he adds, falls on the heels of an insurance vacuum resulting from the pandemic lockdown in which there were far fewer people on the roads, resulting in far fewer insurance claims. Personal injury lawyers found their phones stopped ringing for an extended period because there were so few crashes, slip-and-falls and bar fights.
The closure or reduction of the courts meant existing insurance claims either weren’t being addressed or settled and those who did have benefits were unable to access many therapies.
“The insurance companies benefitted in a number of instances” from the pandemic, Rastin said.
Goulding’s group is asking for recognition of Long COVID, research to identify and define the problem and rehabilitation to treat it.
“Canada needs to recognize that Long COVID is a national crisis and that it is a disability,” she said. “It also needs to be taken seriously by the government and, like other countries, we need to have access to disability benefits. ... And how does going back to work look like?”