Ontario has released a billing code for doctors to use when diagnosing long-term COVID — a move doctors and advocates say is a crucial first step toward better understanding, treating and destigmatizing a growing problem.
The new fee code came into effect on January 13. In a bulletin to all doctors a few days earlier, the Ministry of Health said that long-term COVID “has emerged as a complex and multisystem disease that is expected to require multidisciplinary management and treatment across the country and continuous care.”
The ministry said the code can be used in the treatment of patients with suspected or confirmed persistent COVID, which is also known as the post-COVID-19 condition.
The province’s top doctor said the code would allow researchers to track long-term COVID patients over time.
“Defining a specific code really helps us track, count and look at the severity of this in Ontario,” Chief Medical Officer of Health Dr. Kieran Moore told The Canadian Press.
Deep fatigue, palpitations, depression
The Department of Health has sent guidance to primary care doctors to help them understand how to assess and manage patients with prolonged COVID.
Moore pointed to the work of several clinical researchers leading the way on the long COVID, including Dr. Kieran Quinn.
“This code is a big deal, it’s useful for us, and I think it will help change the way health care is delivered in Ontario in the future for people with prolonged COVID,” said Quinn, a clinical expert on prolonged COVID and assistant professor at the University of Toronto.
Quinn and other researchers have used painstaking work to estimate how many Canadians are living long with COVID. they believe about 1.4 million have the condition.
The virus that causes COVID-19 affects almost every part of the body. Over 100 symptoms have been described.
WATCH | Most lingering symptoms of COVID disappear within a year, new research shows:
Most lingering symptoms of COVID disappear within a year, new research shows
New research from Israel suggests that most symptoms of prolonged COVID disappear within a year, but some — such as weakness and breathing problems — are more likely to persist.
The most common symptoms include deep-seated fatigue, brain fog, palpitations, insomnia, and mood disorders such as anxiety and depression.
“We have a lot of work to do on almost everything related to treatment and supporting people with it,” Quinn said. “But I think the first step is just acknowledging that it’s a real thing.”
Quinn congratulated the ministry on the move.
“This is really critical and something we’ve been asking for and advocating for for a while,” he said.
The science table said the lack of code was a problem
For now, the plan to deal with the province’s long COVID will be with primary care doctors.
“The belief of our review is that the majority of patients can be treated through their primary health care provider,” Moore said.
Ontario’s disbanded scientific panel told the province in a brief released in September that the lack of a diagnostic code for long-term COVID was a problem. He also warned the government in October that the burden of COVID-19 would fall on primary care doctors going forward.
There is a shortage of family doctors in the province, with 1.8 million Ontarians without one. Another 1.7 million have family doctors age 65 or older. Moore also said that as a backup to family doctors, a number of hospitals have opened outpatient clinics with lingering COVID.
There are 11 of them across the province, although all are in cities and only one in the north, in Thunder Bay, Ontario.
“There just aren’t enough of them,” Quinn said.
Life hasn’t been easy for Susie Goulding lately. She got very sick early in the pandemic, the testing was almost impossible to qualify for, and her family doctor didn’t believe it was COVID-19.
Her doctor hesitated over the following years, but never officially diagnosed her with long-term COVID. When she struggled to walk, she saw a neurologist who told her she was suffering from anxiety.
She struggles with low energy levels and lives with constant brain fog that affects her speech.
“The more I talk, the fewer words I can find,” she said.
“First step of a thousand”
She started the COVID Long-Haulers in Canada support group to help others find a community to believe in them.
They now have 18,000 members nationwide and have become instrumental in helping researchers like Quinn better understand the disease.
Those with him also struggle with grief, she said.
“People mourn the loss of who you were,” she said. “I’m not who I was before COVID.”
The new fee code is a small victory for both her and the group.
“This is just the first step of a thousand,” she said. “We want to see a commitment from the government with some kind of strategy on how they’re going to deal with the long COVID.”
There is some hope for treatment. Quinn and his colleague, Dr. Angela Cheung, are soon set to launch clinical trials called the Reclaim Trial in Ontario, which will investigate different treatments “to really improve people’s quality of life and directly treat ongoing COVID.”
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