Lyme Disease by the Numbers
A new study published October 15, 2018, by Drs. Ralph Hawkins and Vett Lloyd explores the issue of Lyme disease under-detection in Canada. This type of initiative is the result of listening to patients, responding to real-world problems, and designing research studies around priority concerns.
NEWS RELEASE - October 17, 2018
Mount Allison researcher, Calgary doctor publish study on diagnoses numbers of Lyme disease in Canada
With risks of Lyme disease growing across the country, one of the challenges nationwide is calculating the number of Canadians who are infected. Dr. Vett Lloyd, Mount Allison biology professor and founding member of the University’s Lyme Research Network and Dr. Ralph Hawkins, MD, clinical associate professor at the University of Calgary’s Cumming School of Medicine and member of the Libin Cardiovascular Institute of Alberta, are shedding some light on this number. Their findings were recently published in the journal Healthcare.
Lyme disease is a serious and debilitating bacterial infection that can result from the bite of an infected tick. As ticks, particularly black legged ticks, increase in numbers and spread into new parts of Canada, this disease is garnering more attention in the country and affecting more and more individuals.
“One unknown aspect of this contentious disease is the number of Canadians who are infected,” says Lloyd. “There has been an enormous discrepancy between the experiences of people in affected communities throughout Canada and the official numbers of those affected with Lyme disease. If everyone is working from the same baseline information we can perhaps start to move forward to dealing with this disease.”
Lloyd and Hawkins analyzed three independent data sets, U.S. public health data, Canadian public health data, and the number of dogs with a Lyme disease infection to generate an estimate of the true number of Canadians suffering from this disease. The province of New Brunswick, where Lloyd’s lab is located and where Lyme disease is emerging, was used as a case study, but the results are applicable across Canada.
Their results showed an under-detection of Lyme disease across all data sets. The pair estimate only between three and four per cent of cases are being documented in Canada.
“As a doctor, what worries me the most about this work is the fate of those people who are infected but not diagnosed,” says Hawkins, site lead for General Internal Medicine at Alberta Health Service’s South Health Campus, in Calgary. “We know that the outcome for untreated Lyme disease patients is not good.”
Lloyd has been studying ticks and Lyme disease over the past five years and contracted Lyme disease herself when bitten by a tick in her yard. Hawkins treats Lyme patients from across Canada.
Lloyd and Hawkins say that addressing discrepancies around the number of people affected by Lyme disease is a beginning step in helping those affected obtain treatment. This study shows the value of independent research and the need to address the experiences of all Canadians with the disease, not just the minority that are captured by conventional Canadian testing.
Lloyd and Hawkins’ study is available at: https://www.mdpi.com/2227-9032/6/4/125
Response to CIHR Network Funding Announcement
October 16, 2018
For over three decades, Lyme disease has had a dire impact on the health and financial well-being of an ever-growing number of Canadians who have found themselves falling through the cracks in the medical system. The researchers in the Canadian Lyme Consortium are committed to working in partnership with Lyme patients, caregivers and patient advocates and our partners in the medical professions to do the research that will lead to advances that will improve diagnostics and treatment.
The Canadian Lyme Consortium (CLC) reached out to patients, caregivers/families and healthcare providers in a recent survey that asked: “What does meaningful engagement in Lyme disease research mean to you?” Over 700 Canadians responded. The survey results indicate strong support of Lyme disease research within the patient community but only in conjunction with active patient engagement and the highest ethical standards.
On October 15, 2018, Minister of Health Ginette Petitpas-Taylor announced that $4 million in federal funding for Lyme disease research has been awarded to the Canadian Lyme Disease Research Network (CLyDRN). We very much hope that the CLyDRN will engage patients in research in a meaningful way. We remain concerned by the lack of patient participation in the new Network and we are disappointed that the Canadian Lyme Disease Research Network did not take the opportunity offered by this funding process to engage in a respectful and meaningful way with the patient groups that advocated for Bill C442 and this funding opportunity.
For too long patients have been ignored by the established public health and research community even as they suffer. The CLC is not only listening, but patients are the core of our group. We remain committed to independent research working with the patient and medical communities to obtain better understanding of, diagnosis of and treatment for Lyme disease.
Study: What does 'meaningful engagement' in Lyme disease research mean to you?
The Canadian Lyme Consortium administered an informal survey to the community to better understand how patients and their advocates view research, and wish to be involved. Over a one-month period in the summer of 2018, 721 respondents shared their opinions. View the full results here (PDF format).