Ontario's long COVID strategy is 'insufficient' and 'unsustainable': ministry documents

Ontario's lack of a long COVID strategy has led the health sector to cobble together "fragmented" clinics that are at risk of closure and may lead to little to no support for patients, internal Ministry of Health documents warn.

Long COVID is not yet well understood, but the current and likely rising volume of patients will have an effect on Ontario's recovery and may place added pressures on emergency rooms, say the documents obtained under a Freedom of Information request.

"Ontario does not have a coordinated approach to care for patients with PCC (Post COVID-19 Condition)," the health ministry's strategic policy branch wrote last June.

"While some providers are responding to the immediate demand for post-COVID care, these offerings are insufficient, fragmented, and unsustainable without dedicated funding."

Between 10 and 20 per cent of people who have had COVID-19 still experience symptoms 12 or more weeks post-infection, the documents note. Researchers estimate 1.4 million Canadians are living with long COVID. The documents highlight possible effects on both the health-care system and the economy, with a survey suggesting more than 70 per cent of long COVID patients have had to take time off work.

Other provinces are "national leaders in PCC care," the document says, pointing to British Columbia, Alberta and Quebec.

Ontario Health Minister Sylvia Jones and Chief Medical Officer of Health Dr. Kieran Moore have made conflicting statements as to whether a long COVID strategy is in the works, so The Canadian Press submitted a request under the Freedom of Information Act.

The documents include an undated 34-page record withheld in its entirety because it would reveal cabinet deliberations, a two-part presentation to the health minister's office from the strategic policy branch in October, and an almost entirely redacted document from December titled, "Ministry of Health Proposed Announcement/Opportunity: Post COVID-19 Condition (PCC)."

Jones' office would not say what long COVID announcement was in the works in December or why it never happened, and a spokesperson also declined to shed any further light on what the ministry is doing to develop a long COVID strategy.

Instead, Hannah Jensen noted that the government had implemented a long COVID fee code for doctors to use when assessing and managing patients.

"We will continue to work with our healthcare partners to better connect Ontarians to the high-quality care they need when they need it," she wrote.

Dr. Kieran Quinn, a clinician-scientist at Sinai Health System who researches long COVID, said developing a provincial strategy to support people with long COVID is essential, though it won't be easy.

"It will help to minimize potential inequities in health and social outcomes that we see in many conditions, including long COVID," he said in an interview.

"There are challenges in the timing and design of that strategy, which are related to a poorly understood condition – there are probably multiple subtypes of long COVID – and an evolving definition, as our knowledge and understanding of it evolves with that."

There are concerted national and provincial efforts to review the best evidence to inform care pathways, he said.

"I hope that in the near future we will have some meaningful discoveries to support (long COVID patients) and there will be some progress on what this strategy will look like from the provincial government," Quinn said.

A ministry briefing in October to the minister's office – in order to "seek minister's office approval on a proposed approach to supporting Ontarians with Post COVID-19 Condition" – said that standardization in diagnostic assessment, referral criteria and educational resources are essential to ensure consistency in care.

“The PCC care model needs to be nimble and responsive to emerging evidence," the document said. "A provincially coordinated approach would be most effective."

In the absence of a co-ordinated provincial strategy, several hospitals have established long COVID clinics, but they have mostly relied on redeployed resources and shifting funding from other areas of the hospital.

"This model is not sustainable and could result in little to no support for Ontarians with PCC," the briefing warned. "These clinics are currently at risk of closure due to lack of funding."

At least one of those clinics has already closed.

Hotel-Dieu Grace Healthcare in Windsor, Ont., set up a long COVID clinic in the summer of 2021 by moving around some resources from other outpatient programs, but by the next summer it was increasing wait times for those other programs too much and they had to close it.

Janice Dawson, the hospital's vice-president of restorative care and chief nursing executive, said government funding was "a little bit all over the map," with only some clinics receiving money – not including Hotel-Dieu Grace.

The ministry briefing documents say that in 2021-22 the government gave Ontario Health $2.3 million to reimburse expenses for eight hospitals that operated long COVID clinics.

For 2022-23, the documents say no funding commitments had been made.

Dawson said the Hotel-Dieu Grace clinic found the most common symptoms they were treating were brain fog, chronic fatigue, anxiety and regaining taste and smell. The hospital is still taking referrals for long COVID patients, and directing them for treatment based on their symptoms, such as sending a patient to their cardiac or pulmonary clinic, Dawson said.

But having a co-ordinated approach and a provincial strategy would greatly benefit patients, she said.

"It opens the door to have a better collaborative effort between sectors," Dawson said.

"Mental health can be talking to rehab, we can be talking to acute care ... It probably also opens the door to how (Ontario Health Teams) could support this type of strategy, and it opens the door to the conversation around needing dedicated funding in which to do it."

The hospital had a preliminary conversation with Ontario Health about possible funding in December, but has not heard anything since then, Dawson said.

"We're talking about $200,000," she said. "It's not a huge amount of money to be able to do this."