As Canada enters its fifth year navigating COVID-19, some experts and advocates are worried treatment options for the virus remain disappointingly inadequate.
Despite significant strides in understanding the virus, Jennifer Hulme, a 42-year-old emergency physician at the University Health Network in Toronto, says many Canadians suffering from long-term COVID-19 are left without many options.
She is one of them.
“I got COVID on April 1, 2022, and I’ve been sick ever since,” she told Global News, adding that when she first contracted the virus it was “relatively mild.”
“I wasn’t completely bedbound for the full 10 days. I was able to walk around, and I was taking care of my toddler, who also had COVID at the same time,” she said. “I felt quite confident that I would be able to get back to my normal.”
After testing negative on day 11, Hulme said other than lingering fatigue, she was functional and able to go back to work.
However, more than a week later, she said she was suddenly struck with a completely new set of symptoms that were “terrifying and disabling,” and exactly what she was worried about — long COVID.
'It was a nightmare'
Long COVID, also known as post-COVID-19 conditions, refers to physical or psychological symptoms experienced more than 12 weeks after getting infected with the virus, according to Health Canada.
While the exact number of long COVID cases remains uncertain in Canada, preliminary findings from Health Canada’s March 2023 report on the disease help shed light on the matter. It found more than 17 per cent of adults who got the virus reported longer-term symptoms after having had COVID-19.
Symptoms can range from extreme fatigue, difficulty breathing, chest pain, dizziness, depression or anxiety or stomach pain, according to Health Canada.
There is no cure for long COVID, and treatment options are scarce.
It’s also not fully understood what causes it, but Dr. Brian Conway, medical director of the Vancouver Infectious Disease Centre, said there are some theories.
“Whether it relates to residual low-level viral infection, whether it relates to damage that was done to the organ systems that were affected during COVID, or whether it relates to the immune system remaining turned on after infection,” he said, “all three of those things require three different treatments.”
When Hulme fell ill with long COVID, she said her symptoms ranged from severe cognitive impairment, disorientation, and shortness of breath to extreme fatigue. Confined to bed, she struggled to even recall her house address.
She said she was desperate for these debilitating symptoms not to become chronic.
“Like most people, as soon as you get sick with long COVID, you’re like, how can I make this get better, faster?” she stated.
However, her doctor said there was not a lot they could do. She was told to take time off work and rest as there were not a lot of evidence-based treatments available.
“It was a nightmare. We now know that the quality-of-life impact on people is similar or worse than those with stage four cancer,” she said. “The treatment is resting and pacing.”
'We don't have a lot of drugs to fight against COVID-19'
In Canada, Paxlovid (a mix of two anti-viral drugs, oral nirmatrelvir and ritonavir) is the most commonly used treatment option to help ease COVID-19 symptoms.
The drug is authorized by Health Canada to treat adults with mild to moderate COVID-19 and who are at high risk of serious illness, including hospitalization or death.
“Paxlovid helps alleviate some of the symptoms of COVID-19,” explained Zahid Butt, an infectious disease epidemiologist at the University of Waterloo. “It’s mostly given to people who are 60 years of age and above and it’s mostly intended for a target group.”
A patient will take the drug twice a day for five days, he said. But it is not meant for long-term use, meaning those suffering from long COVID cannot continue taking it.
“If you develop severe disease then it’s a different story because then it’s more like supportive treatment and you’re put on life support and other things,” Butt said. “We don’t have a lot of drugs actually to fight against COVID-19. For long COVID, currently, there is no cure, and there’s no real treatment. It’s more a supportive treatment.”
Hulme can attest to this.
As she was starting to slowly recover from her long-haul symptoms, in November 2022 she contracted COVID-19 again. But this time, she immediately went on Paxlovid.
While it provided temporary relief for her symptoms, she said it still wasn’t a cure, and she continues to grapple with the lingering effects of long COVID.
“It didn’t do me any good from a long COVID perspective, but I do think it prevented it from getting worse in my case,” Hulme said.
Although other treatment options have helped, such as physiotherapy, anti-depressants and metformin (a common diabetes drug that helps relieve COVID-19 symptoms), Hulme said she’s still without a magic bullet.
“When we talk about real treatments — like really treating the underlying cause of long COVID — you’re going to be disappointed,” she said.
There is currently a Canadian clinical trial for the long-term use of Paxlovid, one that Hulme was a part of. It’s called CanTreatCOVID and the study looks at whether any acute treatment can prevent long COVID.
'A multisystem disease'
Identifying long COVID presents a major hurdle, primarily due to the wide spectrum of symptoms, Butt explained. The sheer variety of symptoms often results in many individuals and health-care providers overlooking the lasting impact of the virus.
“The issue with long COVID has been in recognizing or creating a definition,” he said. “You have like 100 or 200 symptoms of long COVID. And I think there’s some under-reporting of long COVID because some people may not think that these fatigue or other symptoms that they have are related to the infection that they had maybe a year back or so.”
He believes that we are only beginning to see the lasting effects of the pandemic, and among these impacts is the realization dawning on people that they may be grappling with long COVID.
“I think awareness is very essential. Public health messaging is very important,” he said.
Once people are aware of the condition, Butt believes current treatment options can centre around a holistic approach, acknowledging the multifaceted challenges associated with long COVID.
“If you look at long COVID, it’s kind of like a multisystem disease because it affects different parts of the body,” he said.
“So the care should also be holistic in the sense that you should have a team. A team of internists, a team of neurologists, and psychiatrists take care of the patient. I don’t think it’s just enough for just a family doctor to treat all the different spectrum of symptoms.”
What is the solution?
This is why, patients like Hulme are advocating for more long-COVID clinics across Canada as a way to provide specialized care to a multisystem disease.
Hulme has been a patient at the University Health Network’s Post-COVID Condition Rehabilitation Program since she was diagnosed with the condition in 2022.
The rehabilitation centre has been key for recovery, she said, adding that she was able to access different specialists on her road to recovery, such a physiotherapists. She noted that the “hyperbaric oxygen was incredibly helpful” for her.
“I do think it’s needed because for the family doctor to take this on … it is incredibly complex and challenging,” she said. “I think what the government can do is to help create a network of long-COVID clinics that can be integrated with primary care.”
However, experts like Conway advise that the long COVID clinics, specifically in British Columbia (which have all since shut down), did not show to be successful.
“They were not necessarily being as helpful as they could be,” he said. “The wait lists were in the neighbourhood of nine to 12 months. So it wasn’t really serving a purpose,” noting that this is because the symptoms of long COVID often begin to subside after the first year for many individuals.
While there isn’t a universally recognized standard of care for long COVID, Conway advises people who suspect they may be affected to seek out local experts. These experts, he said, can work closely with them to explore potential clinical trials or medications.
The World Health Organization said in March 2023 that because long COVID is a new condition, doctors have often been uncertain as to the most effective ways to care for these patients. With over 200 reported symptoms, “a one-size-fits-all treatment plan simply does not work.”
The WHO has also published a rehabilitation guideline for those suffering from long-term COVID-19, which includes physiotherapy, pain education, prescription of short-term anti-inflammatory drugs and mental health support.
Meanwhile, Hulme believes there just isn’t an appetite to treat COVID as she believes it’s not very profitable.
“But there is no lack of demand,” she said. “I have 13 people asking me for help right now. I feel like I’ve been like the personal doctor to everyone in the country because they have no support.”
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