Shannon Brooks

Recently, media outlets have started to draw public attention to the importance of public prevention against tick bites. However, public health policy has invested few resources into research to create a Canadian framework for combatting Lyme disease born of tick bites. Cases of Canadians being infected by Lyme-carrying ticks have spread throughout the provinces, but these incidents have been met with few changes in policies for proper detection and treatment of this disease.

Lyme disease itself is caused by a spirochete, which is a corkscrew-like bacteria that is known to imitate many other diseases and can infect any organ in the body. According to CanLyme, an advocacy organization raising awareness of the disease, Lyme disease is an inflammatory infection that spreads to humans through tick bites. CanLyme recognizes three stages: early infection, the spread of infection (days to weeks following infection), and chronic Lyme (when left untreated or not properly treated after months and years from infection).  Early diagnosis and treatment is critical to attacking the bacteria before it can spread and infest itself throughout the body.

I interviewed Emily, a friend of mine, who has Lyme disease. She explained that she had been, “stonewalled by doctors and the Canadian health system.” She notes that “it takes a long time to become diagnosed and, if you are lucky enough, to even get treated.”

Emily contracted the disease when she was 6 years-old. She was taken to her family doctor, where the tick was tested and found to be carrying Lyme disease. She had no symptoms and the doctor advised that she had been lucky. But she was not lucky—she was failed by a lack of knowledge. Symptoms did not arise until she was 16 years old, when she had an accident and started to experience chronic pain. At the time she was bitten, doctors did not know the research that shows children often do not exhibit symptoms until they hit puberty—as such, it was easy to blame the accident as the cause of the lingering pain, rather than a trigger for looking further into the possibility of Lyme disease.

Upon moving out west to attend university, this pain became worse and she started seeking medical assistance in helping to diagnose the problem. After numerous tests and specialist visits, every doctor placed the onus on her, saying it was in her head and that she should be living a healthier lifestyle. A naturopath she visited decided to send blood to a Stanford-University lab that specialized in the diagnosis of Lyme disease. The naturopath recommended that Emily should be diagnosed in the United States rather than Canada, as Canada only runs two kinds of blood tests to diagnose the disease, tests that have found to be incomplete. The United States, however, runs five types. The blood tests in Canada are viewed as ineffective for finding the bacteria, which results in a growing number of false negative reports. For Emily, one of the US tests came back positive and it found the disease in her red blood cells.

Once she received her diagnosis, Emily sought assistance in Canada to treat the disease, but found that no doctor was willing to treat her. I interviewed my friend Charissa, who also suffers from Lyme disease. She experienced this same reluctance of Canadian health practitioners to treat her disease, pushing to find a doctor willing to recognize that she had the disease. She had to send a blood sample to Germany in order to be properly diagnosed (which is the country in which she believes she contracted the disease from). Both friends experienced chronic Lyme disease, which requires an extensive treatment plan. Charissa explained, “basic doctor appointments require payment out of pocket and the cost of travel 6 hours to go to see the doctor and have no one in Canada that believes you.”

Both Emily and Charissa attempted to seek diagnosis in Canada. However, no doctor will treat a client unless he/she has confirmation from a Canadian administered blood test.  Both currently receive treatment in New York State, placing the cost of medical care and the antibiotics to treat the disease on these women and their families. Due to the fact that it is issued by the state of New York, it cannot be filled in Canada because it was prescribed by a doctor in the United States. Support is critical for any steps forward, particularly as the number of Canadians with the disease continues to increase

Europe and Germany, in particular, have better response systems and are willing to provide treatment. Charissa had a number of friends from Germany who were diagnosed with the disease and are in remission because the country’s structural framework for diagnosing and treating is much more efficient than Canada’s. Canada based its framework on the poorly defined guidelines from the United States Centers for Disease control rather than more developed understanding of the disease from research in Europe.

Just recently, Toronto’s Humber River Hospital has established the G. Magnotta Foundation, which, in conjunction with the Canadian Lyme Disease Foundation, supports research, testing, and the potential for proper treatment of the disease. However, the health system has failed many people like Emily and Charissa. As a result, they both deal with the symptoms of Lyme disease on a daily basis. There is no standard timeline to recovery and you keep treating it until your symptoms are manageable. Remission is the only thing that exists; a cure does not exist because you can never know if it is gone for good. The critical component when it comes to treating Lyme disease is taking various forms of antibiotics that train your immune system to fight the infection on off days.

Charissa inquired, “What good is free health care if it does not serve you and your disease?” Canada has invested its resources to treat people, but what happens when it fails to do so?

The first recommendation is for better recognition and development of Canadian health prevention and awareness, creating a framework that spurs Canadian research and the use of outside research from other countries like Germany. The second is to create a more encompassing diagnosis and educational framework for health practitioners to properly recognize the many signs and symptoms of Lyme disease. The work of organizations like CanLyme has recommended that the Canadian guidelines be revised to allow for open ended treatment based upon judgment of the primary care physician, instead of the current framework based on flawed policy that does not allow for open research. The first step to doing this is developing a more encompassing way of testing, as well as an increased focus on patient care and outcomes. Canada’s next steps are critical with the predicted increase of Lyme disease due to deforestation, which is killing species that used to help minimize the tick population. As such, it is time to listen to the stories and experiences of those around us who are living with Lyme Disease.

Shannon Brooks is a current MPP candidate at the University of Toronto, Class of 2017. Some of her policy interests consist of immigration and refugee policy, social policy, housing, and environmental policy. She graduated with a Bachelor of Arts Honours from Carleton University with a double major in Law and Human Rights. She is passionate about social justice, and aspires to work within the international community.