As the number of Canadians with Lyme disease continues to climb, Canada is developing a federal framework for dealing with the issue.
The framework will focus on guidelines for identifying and treating Lyme disease, tracking infection rates and their economic impact, and developing standardized educational materials for public health providers.
In Ontario, Lyme disease is spread through bites from infected blacklegged ticks, also called deer ticks. In May, Toronto Public Health held a press conference in Morningside Park to discuss the city’s growing blacklegged tick population and warn residents to protect from bites.
Along with Morningside Park, Rouge Park and Algonquin Island have been identified as areas where the ticks are most likely to be found in Toronto. Ticks from Rouge Park have tested positive for Lyme-disease-causing bacteria. First identified in Toronto in 2013, blacklegged ticks, which can’t fly or jump, migrate by attaching to birds and other animals, so they can be found outside known areas as well.
As part of the federal framework, there was a public consultation in June 2015 and a conference in Ottawa this May. Jim Wilson, president of the Canadian Lyme Disease Foundation, was one of the conference chairs.
“I hope the end result will be that physicians recognize that Lyme disease is neither easy to diagnose, nor is it easy to treat,” said Wilson of the framework. “I think the evidence that was presented (during the conference), and the evidence that is published in many different research papers, has shown that the testing protocol that we’ve been using (in Canada) over the past decades is not accurate. It will not cover all of the strains of bacteria that we know we have and they’re still discovering more.”
Along with funding for more research, including human tissue study, Wilson hopes the framework will change how Lyme disease is diagnosed and treated.
“Tying the diagnosis to the patient having been in a known endemic area is foolhardy in a disease that’s transplanted randomly, so we hope that’s going to change,” he said. “Limiting the treatment to a specific period of time, three-to-four weeks of antibiotics for example, considering the evidence that was presented (at the conference) and the many research papers, that too must change. Doctors must be free to treat the patient based upon the symptoms.”
He also hopes diagnosis will stop being tied to people having a “bull’s eye” rash. While Lyme literature notes most people with the disease develop the mark, Wilson said current research and his foundation’s experience indicate many people don’t develop any sort of rash at all.
Wilson wants transparency in the framework and people with Lyme disease to have a say in it.
“I just want to make sure that the patients and their experts are given the voice they deserve at the table where the policy decisions are made. We want to be engaged in the writing of policy, and not just token representation, and not just as reviewers of something that somebody else has written.”
Ontario’s Chief Medical Officer of Health, Dr. David Williams, said the province’s main focus is helping people reduce the risk of getting Lyme disease.
“So we have a public that is more aware, more knowledgeable on ticks, on handling of ticks, on accessing their physician in a timely fashion,” he said. “An ounce of prevention is worth a pound of cure ... It’s really very much in the hands of the public, because they’re the ones that choose to get exposed, they’re the ones that choose to go see a doctor or not, and choose to ask about it, so we want them as knowledgeable as we can get them.”
To help, Ontario launched a public awareness campaign as part of its “Combating Lyme Disease Through Collaborative Action: Ontario’s 10 Step Education and Awareness Plan” that was released in July.
Williams has seen “snippets and bits” of the federal framework, but noted it hasn’t been finalized, because some aspects are still being discussed. He hopes it will help provinces and territories better understand how other parts of Canada approach the issue, and how it varies throughout the country where different strains of Lyme-disease-causing bacteria are found.
“And keep pushing the research agenda on a go-forward basis, so not just sitting and saying, well this is as it is. Let’s keep driving and looking for solid evidence and science that would move all the aspects of it, and so we’re really hoping that (the federal government) might stimulate that and keep that moving ahead,” he added. “I know a lot of people are wanting to look at the actual treatment, concepts around chronic Lyme disease, and we’re waiting for those experts in various areas to continue to review all those standards in that, and definitions, and assessments, and diagnosis around that, as well as the federal paper.”
Once the framework is released, the Ontario government will review it, see what it agrees with and ask questions about points of difference.
“And to see then what kind of so-called federal-provincial-territorial conjoint activities can, or should, or would we do,” Williams said. “Or what can we do more in our own respective jurisdictions.”
He wants a better picture of how many Ontarians may have been exposed to infected ticks, because monitoring is done through testing and doctors sometimes use preventative medicine instead of ordering tests. Testing isn’t effective in the very early stages of infection, when medical intervention is thought to be most effective, because tests rely on antibodies that need time to build up. Instead, doctors sometimes prescribe antibiotics to keep a potential infection from setting in.
“We would like to document that a bit better, so we can understand the work that our primary care doctors are doing in that regard, so it’s part of our surveillance system,” Williams said.
He believes Ontario’s testing method is the best.
“We have a standardized one that we use, the same as CDC Atlanta and the other top-leading laboratories, it’s a two-stage one. We’re continually looking at our testing to make sure we’re trying to standardize it with other leading centres, and we feel ours is the gold standard.”
He added, “We take (Lyme disease) very seriously, and we’re very concerned about it.”
The provincial government will continue its awareness campaign.
“We really want to make (the public) aware of what we are doing, that we want to do more of it, and want to do it better.” he said.
“And keep raising that bar up on a prevention mode.”
Visit www.ontario.ca/lyme for information about Lyme disease from the Ontario government, and www.canlyme.com for more about the Canadian Lyme Disease Foundation.