COVID-19 long haulers in need of support making treatment plans, insurance claims

While long-COVID patients are pleased Alberta Health Services is recognizing how many people are managing the condition, advocates say more needs to be done to better support the group.

AHS estimates 68,200 Albertans have or are expected to develop symptoms health officials deem "long COVID." The figure is generated from an estimated prevalence rate of 20 per cent of all confirmed pandemic cases in the province, not from independent analysis.

"We are pleased that there is any number," Sarah Bara, Twitter lead for COVID Long Haulers Support Group Canada, said in an interview. "To this point, all long haulers across Canada have been listed as recovered and this is not what recovered looks like."

However, Bara wants to see "hard numbers," rather than an estimate, so everyone affected by the condition is accounted for.

"It's a massive amount of people," she said. "It's a much higher risk than hospitalization and a much higher risk than death.

"Long COVID is always going to be the bigger nightmare."

After testing positive for COVID-19, Bara says she developed postural orthostatic tachycardia syndrome (POTS), a condition where her heart rate changes when moving from sitting to lying down or standing can cause lightheadedness or fainting.

Her concern is for people who develop long COVID but do not have a positive PCR test result as proof for insurance or WCB claims.

"That doesn't seem to be on anyone's agenda," she said.

'MY COVID JUST DIDN'T GO AWAY'

Lisa Lauzon, who was a long-distance runner, tested positive in April 2021 and waited for two weeks to feel better after battling the virus.

"My COVID just didn't go away," Lauzon recalled.

Lauzon suffers from brain fog, headache, and severe fatigue.

"I had to relearn how to breathe," she told CTV News Edmonton. 

"One of the biggest learning curves is accepting being able to work within your energy envelope." 

Lauzon said she could not receive her COVID-19 vaccination before she contracted the virus as she was too young.

She accessed resources from one of Alberta's long-COVID clinics and the U.S. to help aid her recovery process.

"There's no protocol for dealing with this," Lauzon said. "Long haul has such a varying amount of symptoms. There's no treatment plan. They've got nothing to work with."

STUDYING LONG-COVID

Doug Gross, a physiotherapy professor at the University of Alberta, is involved in a long-COVID qualitative study seeking to understand individual experiences with the condition in the province.

"We still don't know a lot about (long COVID)," Gross said. "There's a lot of confusion about it. There's not even a standard diagnosis for it.

"Long COVID, it's this umbrella diagnosis meaning you have symptoms for 12-weeks or longer after that initial acute infection," he said.

In his experience, there are three types of long-COVID patients. The first are people who spent prolonged periods in hospital or intensive care.

"If you spend four weeks on a ventilator, you are going to have problems that last a long time," Gross said.

The second group is individuals with organs or systems affected directly by COVID-19.

"These people with very specific effects because of the virus infection," Gross explained, adding impacts can range from nerve damage, heart damage, or lung conditions.

Lastly, some patients have a various array of symptoms affecting several organs or bodily symptoms, like chronic fatigue, brain fog, memory difficulty, sleep disturbances, and physical difficulties.

Gross said his research into long COVID has shown there were often diagnosis barriers for many patients in the first few waves, but awareness of the condition is growing.

"The more we talk about it, the more awareness is raised, the more the health care professionals take it seriously," he said. "We've had to take a step back and learn about something new."

Much of the initial support COVID-19 long haulers receive is from peers who also have the condition, Gross said. 

Like COVID Long Haulers Support Group Canada, which has more than 15,000 members, several online communities have been formed to help people navigate their recovery journey.

"I've researched a lot of conditions over the years, and by far, this is the most active group in terms of people wanting to engage in the conversation and the research," he said.

Gross says the best defence against long-COVID is getting fully vaccinated, as it can reduce the risk of developing the condition by half.

In May 2020, Alberta Health Services created a rehabilitation advice line for long-COVID patients to help triage, assess, and provide recommendations to those experiencing long-term symptoms.

The toll-free line is available for Albertans over the age of 18 and operates from 10 a.m. to 6 p.m. daily.