Federal government still not listening to Lyme sufferers
Public health agency shelves report.
If you’ve heard the accounts of thousands of Canadians who’ve suffered from the symptoms of chronic Lyme disease and have spent years trying in vain to get health professionals to listen to them, this story is going to sound depressingly familiar.
Around the same time last fall as the U.S. Centers for Disease Control was announcing an update to its definition of the disease to include “long Lyme,” Canada’s federal health agency was shelving a report aimed at building a framework for gathering crucial patient data – one that would have used a method called “participatory action research” to solicit information directly from patients who live with the illness.
The report, commissioned by the Public Health Agency of Canada (PHAC), was supposed to be the first step in addressing a major issue: how to diagnose and treat Canadian residents who “do not meet the case definition for probable or confirmed [Lyme disease} but who exhibit various symptoms” consistent with it or conditions like it.
Report highlights
Released in July of 2023 and authored by Jacques M. Chevalier of the University of Ottawa and Zelie Larose of the CEGEP de l’Outaouais, the document outlines a proposal to gather advice and input that would eventually lead to a plan to collect “health surveillance information” from such patients.
Citing observations and advice from 39 interviewees, the report recommends:
- Seeking participation from patients who exhibit symptoms but don’t meet the present PHAC definition of Lyme disease.
- Adding Lyme-related questions to the Canadian Community Health Survey.
- Collecting biobank samples from patients with Lyme disease and those who exhibit symptoms but don’t meet the present PHAC definition.
- Including surveys from health agencies, physicians, patient groups and researchers.
- Drawing on international expertise, especially from countries that have updated their clinical and diagnostic definitions of the disease.
Lyme cases continue to climb
Cases of Lyme, which is caused by bacteria transmitted by the black-legged tick, began to increase sharply in the early 2000s in Canada as climate change allowed the ticks to spread into new habitats. That prompted public health officials to designate it a reportable disease in 2009. Because it is relatively new to many Canadian physicians and a complex infection with many different manifestations, the condition is notoriously difficult to diagnose and treat. But detecting it and recommending treatment is also complicated by disagreements over the definition of the disease and how it’s transmitted. Many patients exhibit symptoms but don’t meet the criteria for diagnosing the disease set out in the country’s public health and infectious disease guidelines. That has led to suffering and tragedy for many of these people.
Between 2009 and 2023, provincial public health units reported nearly 20,000 cases. But the official statistics “do not provide an accurate picture of the incidence and prevalence of [Lyme disease] in Canada, let alone its demography and its impact on people’s lives,” the report says. “A gamut of accessory methods can be used to gather more information … and fill in the gap.”
In an email to the Canadian Lyme Disease Foundation, PHAC says it “has decided not to proceed with the next phase of the contract” upon its review of the report, but doesn’t explain the reasons for its decision in detail.
“We have … concluded that a contracting mechanism does not provide the flexibility needed to undertake participatory action research or a community-based research approach,” the email reads.
Canada lagging
PHAC’s decision puts it well behind public health authorities in other countries that have updated their definitions of the disease. And it further delays the effort to gather the data needed to update methods of surveillance, diagnosis, and treatment as mandated in the Federal Framework on Lyme Disease Act passed in 2014. So far, there’s been no word from the agency on how it intends to move forward now that it’s rejected the report.
But that does not mean crucial research to collect the necessary data is not taking place. The Canadian Lyme Disease Foundation has funded studies that have gathered valuable information directly from Lyme disease sufferers and their families. The foundation is pushing for more such research as it campaigns to have PHAC move forward in its effort to redefine the disease.
