Thank you very much, Mr. Chair.
My name is Ralph Hawkins. I'm a physician with a practice in an academic medical setting in Calgary. I'm told anecdotally that my practice seeing my patients is one of the largest in Canada. Since 2012 we have evaluated more than 300 patients presenting with alternatively diagnosed Lyme disease, and we presently have over 200 patients on a waiting list to be seen. We have recently had to suspend intake of new patients onto the wait-list due to the sheer volume of demand.
My father was born in rural Saskatchewan in 1914. He died just over five years ago, but last week would have been his 103rd birthday. I want the committee to know that I admire my father and try every day to emulate his example. There were a number of things he could not abide, and being overly negative was one of them. He insisted that we always look for something good coming out of every situation, so with that lens applied, I wish to make some positive observations about the framework itself.
I appreciate the interest of parliamentarians in passing the framework act in the first place. I appreciate the efforts made by the Public Health Agency of Canada under the leadership of Dr. Taylor to engage and collaborate with all stakeholders. Those efforts paid off with the framework conference, which was noteworthy in getting stakeholders together in one venue to discuss the issues and set some priorities.
I wish I could be as positive about the activities of the Public Health Agency—I'll refer to them as PHAC from now on—in the several months following the framework meeting. Unfortunately, the framework document called “Lyme Disease in Canada” was created by PHAC without the same collaboration and engagement with stakeholders that was evident in the planning process.
I appreciate that the document mentions that human risk is increasing outside of known risk areas. I appreciate that the document mentions that cases are likely under-reported. I appreciate that the document lists as a foundation statement that all stakeholders, including patients and their advocates, health care providers, and public health authorities have important interests in making progress on Lyme disease. The document identifies three priorities that I will speak to briefly in turn.
First, on surveillance, in February 2017 provincial and territorial authorities met and agreed to implement “less burdensome” methods of tick surveillance than had been employed in the past. This concerns me if this means that surveillance will be de-intensified. The Canadian case definitions for Lyme disease were revised in 2016 and released by publication in February 2017 and demonstrated a heavy reliance on laboratory corroboration of diagnosis for reporting. This has been demonstrated to be highly insensitive in practice.
A recent publication looking at commercial diagnostic kits identifies that the sensitivity of laboratory kits presently used in practice is in the 40% to 50% range. This means that false negative test results are generated for patients truly suffering from Lyme disease in the magnitude of 50% to 60% of the time. Additionally, the number of cases counted through laboratory surveillance is magnitudes lower—perhaps fivefold to tenfold different—than cases actually occurring in provincial jurisdictions.
Second, on education and awareness, education to enhance tick awareness is needed. It is important that educational materials be accurate and contemporary. All of the pictures of the classic erythema migrans rash in educational materials are demonstrated on Caucasian white skin, but the reality of Canada in the 21st century is that we are increasingly a country of ethnic and racial diversity. The fact remains that we have erythema migrans rashes that look different on pigmented skin.
Another example is that the PHAC framework report employs maps of brisk areas that are not consistent, meaning that they are too confined when compared to contemporary published scientific literature. Additionally, the risk areas are undoubtedly going to expand over the five-year lifespan of the framework, yet the maps of risk areas will remain in the hard copies of the document for the five years. This speaks to the need for the document to be a living document with frequent updates during its lifespan. The document also states that Lyme risk occurs mainly in areas of established tick populations, but this is an unproven conjecture. The clinical diagnosis of Lyme is heavily biased by the definition of a case emphasizing exposure in a risk area.
Next on guidelines and best practices, it is a positive step that the framework acknowledges the existence of ILADS', International Lyme and Associated Disease Society's, treatment guidelines. It demonstrates a bias within the PHAC authorship that it refers to IDSA , the Infectious Diseases Society of America, guidelines as being “used by the broader medical community”, and that it relegates the ILADS guidelines to a subordinate position followed by “a small number of front-line health professionals”.
I am very concerned that the document identifies the Canadian Public Health Laboratory Network as providing the sole leadership on diagnostics. Test methods in common use in other jurisdictions are not offered in Canada due to this network's exclusion of legitimate alternative testing methodologies. For example, Liz and I attended the Best Brains Exchange on Lyme diagnostics in June 2015 where use of the T-cell test called ELISpot was discussed. The action items arising from that meeting included suggestions for lab physicians and clinical practitioners to collaborate on innovations, such as investigating the use of ELISpot, which would be useful in assisting front-line practitioners to improve diagnostic sensitivity. In the two years since this CIHR-sponsored event, however, no collaboration or innovations have been forthcoming.
As a result, practitioners still make use of laboratories in the United States or Europe to obtain lab work that could be provided in Canada. The patients are left to pay the bill for these investigations. This framework is lean on specifics of research, particularly upon who will define the research priorities, ensuring that patients and front-line providers are involved in setting the research priorities, monitoring the investments in research, and tracking outcomes. An example of how such monitoring could occur would be the U.S. Congress's recent 21st Century Cures Act, which establishes a Lyme research oversight committee with equal representation of stakeholders, including patients, caregivers, researchers, funding agencies, and legislators to set the Lyme disease research agenda and to closely monitor its progress. Your standing committee, which oversees CIHR activities, has the power to implement exactly such a measure if you choose to.
The framework has its deficiencies. It is silent on the plans to monitor congenital transmission, the blood system, or for the emergence in Canada of novel Borrelia species, including new North American and European Lyme strains.
I will close by reminding the committee of the scores of patient testimonies and the hundreds of letters that patients suffering from the disease have brought forward. These patients are suffering today. The framework gives them no hope that things will be different soon. My patients this afternoon in clinic will still be obliged to pay for out of Canada testing.
Lyme disease sufferers are an identifiable group who are being systematically wronged by a system not responsive to their plight. We are in the midst of a tragedy of our own making. During the framework conference last May, I had the honour of taking my then 13-year-old son to the House of Commons to witness the long-overdue apology for the Komagata Maru incident. It made me proud to witness a system that could be introspective, that could see and admit its wrongdoing, and to make amends for it.
I believe our system's intrinsic tendency to eventually do things right persists. Lyme disease sufferers today are being wronged. Wrongdoing is not always deliberate. Institutional wrongdoing is more often inadvertent. I would recognize the hardship of Lyme disease suffered in Canada exists today as a result of systemic institutionalized wrongdoing. As a private citizen, I would suggest to this committee that a formal inquiry would be the appropriate remedy, or perhaps my son, in his later years, will someday attend Parliament to witness the long-overdue apology to Lyme sufferers for our inaction today.
Thank you.