Health Canada’s new Lyme disease plan: You act, we’ll watch

Canada is under pressure to show leadership as Lyme spreads, but its ‘action plan’ shows it’s out of touch

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The term “litterbug” was popularized in the 1950s in public service announcements produced by Keep America Beautiful, a non-profit composed of government agencies, citizens, and corporations—Philip Morris, Anheuser-Busch and Coca-Cola, among them. The group wanted to draw attention to the growing problem of litter on newly built highways. The campaign was a success; “litterbug” remains a pejorative. But putting the onus on individuals as the cause ignored a larger, systemic problem we’re grappling with to this day: the excessive, extraneous packaging of consumer goods.

The litterbug story came to mind when I spoke recently with three scientists at the Public Health Agency of Canada (Gregory Taylor, deputy chief public health officer; Robbin Lindsay, head of field studies; and Nick Ogden, senior research scientist) about the agency’s new Lyme “action plan,” which includes talking to journalists to get the word out. An initiative to raise awareness, and to improve diagnosis and treatment, of the tick-borne infection is desperately needed in this country. Incidence of Lyme is on the rise, abetted by global warming, which extends ticks’ habitats. The spectre of a Canadian “Lyme epidemic” prompted Green Party Leader Elizabeth May to propose Bill C-442, itself a “national action plan” on Lyme disease. It passed through third reading in the House of Commons in June and has been referred to the Senate.

The bill was necessary. Canada has assumed the ostrich position toward Lyme for decades. Stories abound of people eventually diagnosed who were initially told by their doctors that they couldn’t have contracted Lyme because black-legged ticks don’t live in the vicinity. Lawsuits have been launched, one against the Canadian military. Lyme misdiagnosis in Manitoba is the subject of a Ph.D. thesis. It is a topic riven by rancorous debate. One area of dispute is the conventional wisdom that Lyme almost always announces itself via a bulls-eye rash. Lyme advocacy groups and “Lyme-literate” doctors dispute this—a position backed by a recent study of children in Nova Scotia that found undiagnosed Lyme led to arthritis: 76 per cent of those children showed no sign of a rash.

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As that story illustrates, getting Lyme diagnosed can be difficult. As reported in Maclean’s, the two-tiered testing protocol used in Canada and the U.S. is riddled with false negatives and is unable to detect all bacterial strains and co-infections. Health Canada said as much in a 2012 advisory. Lyme’s early symptoms—fever, chills, joint pain, headache—accompany many conditions. Yet, early detection and treatment is critical; untreated Lyme affects neurological and motor functions, manifesting symptoms often misdiagnosed as MS, Parkinson’s and ALS. Lyme advocacy groups refer to this as “chronic Lyme,” a definition rejected by the Canadian government and by the Infectious Disease Society of America (IDSA), which sets Lyme treatment guidelines. They both refer to lingering or worsening symptoms as “post-treatment Lyme syndrome,” which assumes Lyme was identified and treated in the first place. Here, too, debate is polarized. IDSA guidelines advise Lyme can be effectively treated with no more than four weeks of antibiotics. Lyme advocacy groups and doctors believe long-term antibiotics are required to vanquish the infection; Canadian doctors who’ve treated “chronic Lyme” with long-term antibiotics have been disciplined and/or seen their medical licences revoked, sending many Canadians to the U.S. for treatment.

It would be good to report that the government’s new “action plan” brings clarity, direction and help to Canadians suffering from Lyme disease—as well as those currently undiagnosed. But, fairly quickly, it becomes clear that by “action,” the government is referring to what people need to do to avoid being bitten by a tick in the first place. A big part of its awareness and education includes directives: Wear long sleeves and light colours in the brush; use bug repellant; shower after being outdoors; do daily “full body” checks for ticks on yourself, children and pets. Those who find a tick are advised to send it in for analysis. Canadians are also told to keep their lawns “well-maintained” and “to seek medical help if experiencing a range of symptoms.”

“We would like to see people not get infected at all,” says Gregory Taylor, optimistically. Anyone with a history of walking in the woods who has seen a tick and has some of the symptoms should seek help and receive early treatment to avoid “having the long, bad outcomes with Lyme,” Taylor says. That scenario suggests Lyme is a rural concern—which it’s not, as the directive to tend lawns makes clear. Similarly, a focus on spring and summer as “tick season” suggests ticks are seasonal, like corn or peaches. But they live through the winter as well.

Yet, let’s say someone walks in the woods, sees a tick, and has symptoms. The system they face remains unchanged—and that’s a big problem. The government plan promises “improved diagnostic methods, as they become available.” But Taylor expresses satisfaction with the status quo: “I think diagnostic testing in Canada, currently, is on a par with what’s in the U.S., and it’s a validated test,” he says. Treatment protocols are outside the government’s purview, says Taylor, though he speaks enthusiastically of research on antibiotics used as a prophylactic on those exposed to a tick bite, before symptoms emerge. He expresses concern about long-term antibiotic treatment, noting risks of antibiotic resistance and diarrhea. More research is needed, he says. Even so, he speaks of a system fixed in its ways. Doctors diagnosing conditions with Lyme-like symptoms reject the Lyme diagnosis, he says: “Specialists in neurology or rheumatology don’t believe it’s Lyme.”

The action plan also focuses on tick surveillance—along with “new methods of controlling the ticks that carry and spread Lyme disease.” Jim Wilson, president of the Canadian Lyme Disease Foundation, expresses skepticism: ”I wish them luck with that,” he says. His organization has been involved in ongoing consultation with the government; one condition of its participation, he says, was that the government update information to say a bulls-eye rash is not always present in most Lyme cases. Talking to government scientists, “messaging” about the rash is still unclear. Taylor reports that 75 to 80 per cent of Lyme cases are accompanied by a bulls-eye rash; Lindsay interjected to say that a rash is seen in fewer than 80 per cent of cases and that it may not always look like the classic bulls-eye. “We’ve altered our messaging away from that,” Lindsay says. Still, doctors looking for information about Lyme on the government’s website will find it says that a bulls-eye rash is present in 70 to 80 per cent of cases.

Clearly, the government is under pressure to show leadership. But the fact that it’s focusing on a Lyme “action plan” suggests it’s out of touch. What’s needed instead is a “tick action strategy,” given rising incidence of diseases spread by ticks, including babesiosis, which has been dubbed “American malaria” because it can be fatal. In 2012, the Centers for Disease Control was notified of 911 cases in the 22 states where incidence is reportable. Less than half of those reporting it—43 per cent—recalled having a tick bite in the eight weeks before symptom onset. It’s also spread via blood transfusion and from mother to child. Seven cases of babesiosis in blood recipients were classified by the reporting state as transfusion associated; one reported case was attributed to congenital transmission from mother to child.

When I asked what measures are being taken to ensure the Canadian blood supply is safe, Taylor said there is “no evidence of anyone being infected with Lyme via blood transfusion.” Lindsay jumped in to say several hundred cases of babesiosis have been reported in the U.S., but the risk in Canada is far lower. Canadian Blood Services has been conducting serological surveys on close to 30,000 blood donors and none was positive, he says. Still, there’s “concern” about babesiosis in future, Lindsay says: “In some locations, we are starting to see what appear to be established infections within small mammal populations.”

CanLyme’s Wilson sees the government’s “action plan” as pre-emptive. “They know what’s coming down the pipes,” he says. According to Health Canada, there were 500 reported cases of Lyme in Canada last year, up from 128 in 2009, when the agency started keeping track. At a hearing into Bill C-442 in May, an infectious disease specialist claimed Lyme “will affect more than 10,000 Canadians per year by the 2020s.” Wilson believes we’re at 10,000 Lyme cases annually. He expresses concern that no infrastructure is being built to deal with the mounting numbers: “We’re talking billions of dollars in health care and other tax dollars of social assistance [for people disabled by Lyme],” he says. Instead, Canadians are being told to conduct full body searches for ticks—not unlike the motorists who were told 60 years ago that not tossing a wrapper on the highway would somehow, magically, solve the problem.




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Health Canada’s new Lyme disease plan: You act, we’ll watch

  1. Thank you for this! It is one of the clearest and most concise snapshots of this issue in Canada. Unfortunately, the author fails to acknowledge how hard won this Bill was, and that anything further or deeper would have been thwarted. At this point, awareness is critical and prevention is an essential first step.

    Now there is a foothold in legislation, we will be able to climb the wall and demand more action as awareness of the Osterich Attitude increases.

    I have late stage LD and am being ruined financially, career-wise, marriage-wise and otherwise by it. I have no expectation that the system here will help me. I am soon going to start a fundraiser online to go out of country if need be. Soon, though, Canada will see what needs doing. I can’t wait for that.

  2. The lack of awareness by peers and society is as damaging as the systemic issues within Health Canada.

    It is so isolating, so terrifying, so frustrating and so exhausting not to be understood. I am grateful the Bill for a National Strategy Disease has made it. Yes the Action Plan is immature and needs work, but a flame starts with a spark. Keep publishing about this and related diseases, MacLeans!

    The U.S. is not a place to look for better standards, Mr. Taylor, as their current FDA approved tests are not so great.

    This blog, showing how people with Cancer are far better supported and understood than people with Lyme Disease, articulates up my experience so far.

    I mean not to diminish those with Cancer. If you know someone with LD, please read this and then reach out to them.

    http://reachwhite.com/blogemilyreachwhite/2013/4/5/at-least-it-isnt-cancer

  3. Bravo!!! Finally a well researched and accurate article on Lyme Disease in Canada. As a sufferer of Chronic Lyme Disease myself, i was so pleased to see a writer finally investigate deeply enough to really understand the issues at hand. I would highly recommend that the author read the Schmidt Report which was obtained by Gwen Barlee through a FOI. It tells of a conspiracy that has long been going on in BC’s Health Depts for many years. I live in BC and must pay a doctor out of pocket, my Lyme testing was done in the US as the Cdn tests are deplorable and not equal to any other countries testing standards. Even though i was positive for Rocky Mountain Spotted Fever and Bartonella on Canadian tests, i was offered no treatment whatsoever, in fact, i was told to leave the doctors office as i sat in the consultation room, as the doctor had nothing else to say to me. I certainly hope the public will insist that Elizabeth May’s bill be followed to the letter. It is a dark stain on Canada’s reputation of having one of the best health systems globally.

  4. I went to a Lyme information meeting in Victoria BC a couple of months ago, mainly out of curiosity. (I know a couple with Lyme, husband with a positive test and mild symptoms and wife with negative test and huge symptom list). I was horrified. You would not such a group of suffering people in any emergency room in any hospital in Canada. Twitches, sunglasses for light sensitivity, walker and wheelchairs. Some people were clearly mentally affected too. A real horror show. About 100 people there and about 40 of them had positive tests from the USA! Very very few were “official” Lyme sufferers because our doctors get in trouble (with the medical associations) if they report the cases to the province. Which is utterly ridiculous. How can you have a real response if at every turn you deny the size of the problem? Lyme is huge in the rural parts of Victoria and the Cowachan valley right now. I “interviewed” (I share videos on youtube) a lady from the valley, she has 5 co-infections! And she has been basically hung out to dry, or hung out to die, by our medical associations. Nobody will help her because they could lose their license. Another couple were very matter of fact about the likelyhood that her lyme was probably contracted sexually from him. At which stage do the medical people and politicians wake up? Co-infections transmitted from mother to child? Co-infections getting into the blood banks and being transmitted by blood transfusion? It is long past time to stop using the ISDA guidelines and mandating a reliable test that reliably finds the positives and negatives. Lyme is not something where we should rely on a test that is only slightly more accurate than tossing a coin. It is a clear and present danger to you, and your wife and your children. And I have seen first hand people who live with bad cases of it, it is a living hell. One person told me in tears that she hopes Jesus takes her soon. Is that any way to let people live?

  5. Great work as usual Anne! Nice to see that the government is exhibiting it’s usual stance of gambling with the health of Canadian Citizens. Perhaps the government believes that if they deny problems vehemently, these problems will just go away without further adieu. Thank you for exposing this aberrant behavior to the Canadian public.

    Judy Butcher

  6. Amongst the “action” we need is access to Permethrin-treated clothing to ward off ticks when working/playing in areas with known concentrations of black-legged ticks carrying Lyme, especially during in early summer when the liklihood of getting bitten is highest. I spend as much time exploring natural areas as I can as well as promoting such activites more broadly. I am particularly concerned about children’s susceptibility to ticks and Lyme disease – we want them to enjoy nature, but use of DEET, one of the tick preventation measures advised by our health officials, is not a good option for children. Permethrin-treated clothing, however, has no such restrictions and used in combination with a personal pesticide on exposed skin is described as being 100% effective in preventing tick bites. Scientific studies may not support the 100% estimate but do show that use of permethrin-treated clothing reduces tick bites very substantially (93%) over only using personal pesticides. (I prefer repeated applications of natural pest repellents, rather than DEET on exposed skin.) Tents and other fabrics can also be treated with permethrin, adding to protection. Remarkably, permethrin products for treating clothing and clothing pre-treated with permethrin are NOT available in Canada because the federal agency which regulates sale and use of pesticides, the Pesticide Management Regulatory Agency (PMRA), has not approved use of permethrin to treat fabrics, or the sale and use of pre-treated fabrics, in Canada. Hence we cannot purchase such products in Canada, and presumably could be prosecuted for importing and using them in Canada. Perhaps for that reason, there is a dearth of discussion about this option in Canada. At least one application to the PMRA to register such products was made in 2007 or earlier and there may have been others. The PMRA will not reveal why such applications may have been turned down or even whether there are any such applications currently being considered. On the other hand, the Canadian military makes use of permethrin treated fabrics and Health Canada (the agency overseeing the PMRA) advises Canadians to use permethrin-treated clothing to protect themselves against insect-carried diseases when visiting other countries. Further, permethrin is registered for a wide range of other uses in Canada. These include treatment of head lice infestations in children. The U.S. Center for Disease Control and Prevention advises use of permethrin-treated fabrics as a key tool for preventing tick bites.
    Use products that contain permethrin on clothing. Treat clothing and gear, such as boots, pants, socks and tents. It remains protective through several washings. Pre-treated clothing is available and remains protective for up to 70 washings. So why the PMRA & Health Canada are, apparently, reluctant to register (PMRA) such products in Canada and to promote their use (Health Canada) is a mystery. It seems unlikely it is because of possible adverse effects on the user as the permethrin is bound to the clothing, and permethrin is considered safe enough to be used against lice on children. Except for dealing with the disposal of permethrin-treated clothing, there would seem to be no significant environmental issues, which is not the case in relation to many of the pyrethrin- and pyrethroid-based pesticides approved by the PMRA which are highly toxic to beneficial insects and to many aquatic organisms. Currently, according to the PMRA database, there are 345 registered products containing permethrin in Canada! Please see noticks.ca for sources of the information cited above.

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