Good morning. I'm Dr. Elizabeth Zubek, and I am a clinical instructor with the University of British Columbia Faculty of Medicine, department of family practice. I've also worked, from 2013-14, as a UBC consultant on the treatment of Lyme disease, with the university's complex chronic disease program, which was created to be a central provincial referral site for patients with Lyme disease. I now work in private practice, with the treatment of tick-borne infections occupying about 20% of my time.
I'm honoured to be chosen to speak at the House of Commons Standing Committee on Health regarding an action plan, the federal framework on Lyme disease. You, as our federal MPs, listened to the suffering of Canadians with chronic Lyme disease. You responded to the thousands of people in your constituencies who presented evidence that Lyme disease is not being properly diagnosed and treated in Canada. You had the courage to vote unanimously to create an action plan to correct these issues. Now it's time to take this information, designate the funding, and create a solution for all Canadians.
I urge you to remember the why, the impetus behind Bill C-442: Canadians becoming disabled from a treatable disease. This should inform our decisions.
Three pillars are addressed by the framework: surveillance, education and awareness, and guidelines and best practices. I would like to address each of those three pillars in succession. I'll address these from the perspective of a family physician and from the perspective of one of the few Canadian physicians specializing in the treatment of chronic tick-borne illnesses.
On surveillance, although surveillance is already being funded by the Government of Canada for Borrelia burgdorferi, we know that data obtained becomes obsolete quickly due to climate change and due to migratory birds, as they travel, spreading ticks into new areas. There is no region in Canada that can be considered safe from Lyme disease. As a family doctor, I assess the patient in front of me. If that person was bitten by a tick and develops an unusual rash, or neurological or arthritic symptoms, it doesn't matter to me whether the rate of infection in ticks in my area is 5% or 20%, I treat the person in front of me, and I need appropriate testing for tick-borne disease in that scenario.
We know there are multiple species of Borrelia, at least 10 of which cause human disease, and multiple strains among each species. There are then other Borrelia species that cause a relapse and fevers. We know that ticks carry multiple other bacteria, viruses, and parasites. I think it's more important to allocate our resources to test the sick human for the presence of disease rather than count how many ticks in a field contain the Borrelia bacteria. Surveillance has its role, and new Lyme cases are reported, but this already has some funding. Sick people need diagnosis and treatment, not more regional statistics.
Education and awareness is the second pillar. This is very important to prevent new cases of Lyme disease and to recognize symptoms of chronic infection. I believe the entire process of this framework has robustly increased education and awareness in Canadians. There's been so much press about Bill C-442, the all-party support, the controversies involved, and the media has effectively done more than any print campaign the government could have devised. As such, my recommendation would be that the dollars attached to this area of education and awareness be designated towards physician education.
I work in a region of B.C. that's considered endemic for Lyme disease, yet I frequently hear physicians saying, “Lyme disease isn't found in B.C.”, or physicians suggesting a Lyme test immediately after a tick bite, when the test couldn't possibly be positive yet. I teach final year medical students who have not learned about acute and chronic manifestations of Lyme disease. It is to physicians that educational efforts must be directed.
The third pillar is guidelines and best practices for diagnosis and management. On best practices for diagnosis, this framework recognizes that testing with better sensitivity is needed. We cannot accept the current two-tier tests, which as Ralph said, only have a 40% chance of picking up disease, and that's only if you're lucky enough to have your disease caused by one particular strain, B31, of one particular species, sensu stricto, of Borrelia.
Better tests exist now. I recommend that funding go toward evaluating the ELISpot test in our Canadian population. The ELISpot is a lymphocyte transformation test. This type of testing is accepted in Canada as the gold standard for assessing active versus latent or dormant tuberculosis, which is another spirochete disease.
The ELISpot can diagnose 84% of Borrelia infections, is positive earlier in the course of disease, and will go down to zero when treatment is completed. This has added benefit in areas of high endemicity, where a person can be reinfected after the treatment was completed. ELISpot testing currently costs between $200 and $400. Patients, as Ralph said, are now paying for it out of pocket. But it is being used by most of the treating doctors I know in Canada. Better testing for Canadians must be a top priority.
Finally, there are best practices for management. The framework recognizes there are two different approaches to management. One guideline is supported by the Infectious Diseases Society of America, IDSA, and the other is supported by the International Lyme and Associated Diseases Society, ILADS.
In evaluating the trustworthiness of any set of guidelines, specific criteria must be met, as outlined by the respected Institute of Medicine. Guidelines must include regular review and monitoring as new research becomes available. A multidisciplinary panel of experts and representatives from key affected groups, patients, update the guidelines.
Only one set of guidelines meets these criteria, the ILADS guidelines of 2014. These are on the U.S. National Guideline Clearinghouse website and used internationally. Strangely, we in Canada have not publicized these very current and evidence-based guidelines for doctors to use in Canada. We still post the old IDSA guidelines, published over a decade ago, in 2006, never revised, and which were discarded from the U.S. National Guideline Clearinghouse well over a year ago.
This is a critical point to address. There has been an explosion of research on Borrelia this past decade. We have discovered that Borrelia has three different shapes or morphologies and it switches easily between them. The three forms include a corkscrew shaped spirochete with a cell wall, an intracellular form, and a round body that is a more dormant form. It takes a different type of antibiotic to treat each one of these three forms. As a result, the most effective protocols use three different antibiotics all together or in a pulsing pattern.
I looked on the PHAC website just last night for any treatment advice for late Lyme disease, and in its “for physicians” section, it linked me only to a 2006 article of treatment protocols. Those old protocols use only one antibiotic by itself for only two to four weeks, even when the brain is affected. We need PHAC to acknowledge the updated 2014 ILADS guidelines and formally post this most up-to-date information for physicians on their website so that doctors can manage their patients appropriately.
In summary, priorities for funding must align with the priorities of people affected by Lyme disease and their experts. The top two priorities would be diagnosis and management related. For diagnosis, we must evaluate the use of a more sensitive yet still specific diagnostic test such as the ELISpot, and make it available to Canadians immediately as a part of that evaluation. For management, Canadian clinical practice guidelines must consider the most up-to-date research and meet Institute of Medicine standards.
We must do broad education for physicians in all specialties and in general practice. We also need to train up a cohort of physicians with special expertise in the treatment of people with chronic manifestations of Lyme disease. Physician expert engagement must include the College of Family Physicians of Canada, which has a mandate to provide holistic patient-centred care. Family doctors are the ones on the front lines, from diagnosing initial infection to caring for complex systemic diseases.
Finally, it is very important that patients be an integral part of the research direction and research network.
Thank you for your attention today.