History and advocacy of Lyme disease

2024 marks the 20th Anniversary of the Canadian Lyme Disease Foundation. For the past two decades CanLyme has advocated for patients by supporting diagnostic and treatment approaches that reflect emerging research and expertise from across the globe. Despite the combined efforts of CanLyme and other advocacy groups, many Lyme patients are unable to receive the diagnosis and treatment they need. 

The history of Lyme disease controversies and advocacy efforts have been the subject of many books and documentaries over the years. The following is a snapshot of significant events and Lyme disease advocacy milestones over the past five decades. Many of these events and groups are also highlighted in this Lyme Disease Timeline.

The controversy

For the past forty years there has been ongoing debate about the testing, diagnosis, treatment and even the definition of Lyme disease. From one viewpoint the testing and treatment protocols we have are for the most part adequate. The reality is that many patients are unable to receive a diagnosis and proper treatment for this disease, and are left seeking solutions on their own. 

This is a global problem, one which is currently being addressed by advocacy groups around the world. As a result of inadequate testing and treatments for Lyme patients, groups and organizations have formed to help support patients and advocate for change. CanLyme would like to recognise all of those individuals and groups who have worked tirelessly over the years to support patients and their clinicians and advocate for better healthcare for patients.

1970’s: Lyme Connecticut

In the mid 1970’s two mothers in Lyme Connecticut noticed that many people in their neighbourhoods were experiencing similar but mysterious symptoms. One of those mothers, Polly Murray, gathered this information and brought it to the attention of health authorities. She continued to advocate to raise awareness about this new disease.

1980’s: Lyme in Canada

Borrelia, the bacteria that causes Lyme disease, was discovered in the BCCDC laboratories around 40 years ago, in 1985. The Lyme Borreliosis Society of BC was formed in 1989 to address this emerging disease. In the same year there were 93 cases of Lyme disease in Manitoba, 51 of those had a bullseye rash. In the late 1980’s, a number of articles were written that described the complexity of Lyme disease, including the chronic nature of the disease, its neurological manifestations and maternal-fetal transmission of the disease. 

1990’s: Provincial advocacy and patient support groups formed

The Lyme Disease Association of Ontario was founded in 1990. Two Lyme disease conferences were held in Canada in the 1990’s – one national and one international. Several Lyme disease groups were formed, including Ontario, Manitoba, Saskatchewan and New Brunswick.

Meanwhile in the US, the Infectious Diseases Society of America, or IDSA, established their two-tiered testing protocol. This test shaped the history of Lyme disease in the US, Canada and other parts of the world. It has been used to direct research along with the diagnosis and treatment of Lyme disease. This has placed limitations not only on the research that has been done, but also on which patients receive treatment and how physicians approach the diagnosis and treatment of the disease. 

In 1999 the International Lyme and Associated Diseases Society, or ILADS, was formed to address this limiting approach. 

2000’s: Advocates respond

In 2000 the IDSA published their first set of guidelines for the diagnosis and treatment of Lyme disease. In 2001 the US Lyme Disease Association published a report to illustrate the financial and other conflicts of interest involving authors of the IDSA guidelines. 

In 2003 the Canadian Lyme Disease Foundation, CanLyme, was formed as a national patient support group based in BC. In 2004 ILADS published their first set of guidelines. In 2006 the Public Health Agency of Canada held a conference. Dr. Daneil Cameron, Dr. Sam Donta, Dr. Harris from Igenex and lawyer Lorraine Johnson attended. A report was published two years later. None of the recommendations from the conference were enacted.

Throughout the 2000’s, new guidelines were published by the IDSA, explicitly denying chronic Lyme disease. Advocacy groups, including CanLyme, the Lyme Action Group in Ontario, and ILADS and the LDA in the US continue to advocate for better testing and treatments. 

In 2009, 17 US States enacted legislation and other initiatives to protect doctors who treat chronic Lyme disease. Canada has never taken this approach; several Canadian physicians have been investigated for treating Lyme patients who are not cured by short courses of antibiotics. Canadian clinicians who treat patients with chronic Lyme disease continue to report increased scrutiny. This is very problematic for clinicians and for all Lyme patients in Canada.

2010’s:

Lyme advocacy groups continue to form across Canada. Rallies are held, patient groups are formed to support those who are unable to receive proper diagnosis and treatment, and advocates and politicians raise their concerns in provincial and federal parliaments. Bill C442, a private members bill tabled by Elizabeth May, is passed, and in 2016 the Conference to develop a federal framework on Lyme disease was held. 

During the 2016 Conference, scientists, doctors, politicians were asked to speak, along with hundreds of Lyme patients from across the country. Patients described the challenges they faced in receiving a diagnosis and adequate treatment. Many also described the difficulties they had in gaining access to effective health care, paying out of pocket for treatments outside the public healthcare system, and being disbelieved by their doctors, and sometimes their family and friends.

As a result of the conference, the Federal Framework on Lyme Disease was drafted. Patients, advocate groups and researchers vocalized their disagreement with many of the recommendations laid out in this document, leading to roundtable discussions involving these stakeholders along with government and public health officials.