Infectious disease experts question Lyme disease bill

Organization wants three paragraphs stripped due to concerns over wording of bill

TORONTO – An organization representing Canada’s infectious diseases specialists plans to raise objections to a private member’s bill on Lyme disease at Senate committee hearing today.

Their concern: The bill appears to support the notion that significant numbers of people in Canada are suffering from a condition they believe to be chronic Lyme disease and that these individuals are being failed by a medical system that refuses to accept that diagnosis.

Further, the preamble of the bill suggests Canadian medical guidance on how to spot Lyme disease replies on U.S. guidelines it terms “so restrictive” that they severely limit the diagnosis, leaving sick people to suffer.

The organization, the Association of Medical Microbiology and Infectious Diseases Canada or AMMI Canada, is hoping to persuade the committee to strip three paragraphs from the preamble to the bill, saying it can support the rest of the document.

But Green Party Leader Elizabeth May, who proposed the bill, says that isn’t possible at this stage.

May, an MP for the British Columbia riding of Saanich-Gulf Islands, says the preamble cannot be altered without sending the bill back to the House of Commons. And that, she says, would effectively kill the bill; there would not be enough time for it to make its way back through Parliament before next fall’s election.

May doesn’t see the problem, however, insisting the preamble does not take sides on the very thorny issue of whether chronic Lyme disease exists.

“This is an attempt on my part to be completely non-partisan and also not to take sides on the heated debate about whether there’s such a thing as chronic Lyme or whether there’s post-Lyme syndrome,” she said in an interview.

“I’m not a doctor. I’m not taking positions on these things.”

But infectious diseases specialists feel May has done just that by framing the bill with wording that questions the current diagnostic guidelines and quotes a B.C. government report supportive of the views of the vocal Lyme lobby.

Their fear is that in criticizing the existing guidelines, developed over the course of several years by the Infectious Diseases Society of America, the bill is tacitly supporting another approach to diagnosing and treating Lyme disease, developed by the International Lyme and Associated Diseases Society.

An independent review of those guidelines, commissioned by Britain’s Health Protection Agency — now Public Health England — concluded they did not provide “a scientifically sound, evidence-based approach to the diagnosis and care” of patients with Lyme disease.

“It sets a tone and it gives what I think is a false state of the science around testing and clinical treatment of Lyme disease,” Dr. Bonnie Henry, B.C.’s deputy chief medical officer, says of the preamble to May’s bill.

Dr. William Bowie, who teaches infectious disease medicine at the University of British Columbia, will represent AMMI Canada at the Senate hearing.

Bowie, who has been involved in drafting the Lyme disease guidelines drawn up by the Infectious Diseases Society of America, feels the preamble dismisses the whole evidence-based process used to arrive at this type of guidance for medical practitioners.

“We have the funny situation of this person who fights for climate change and believes in science … who here is totally missing the point,” Bowie says.

“She’s arguing on behalf of an anti-science lobby, which seems to me to be incredibly ironic.”

May disagrees. But she admits she had anticipated encountering push-back to the bill’s preamble — though not for the sections that have raised AMMI Canada’s ire.

The preamble refers to the fact that climate change is predicted to expand the range of the habitat of the ticks that carry Borrelia burgdorferi, the spirochete that causes Lyme disease. May expected to have to fight to hold onto that reference to global warming.

But C-442 has garnered support from all sides of the political spectrum. It is expected to pass, which is rare for a private members’ bill.

It calls on the government to convene a conference of provincial and territorial ministers plus stakeholders — medical experts and patient groups — to develop a comprehensive Lyme disease strategy.

The strategy would include a national surveillance program to track rates of infections, establish guidelines for preventing infections, diagnosing when they occur and treating them according to “current best practices.”

Henry notes a similar effort was undertaken in 2005. But the consensus conference organized then by the Public Health Agency of Canada failed to reach one, and nothing was ever published as a result.

“It was a really challenging situation and I think we’re setting ourselves up to do that again with this bill. To put ourselves in the place of having to defend science again. And I don’t think it does a service to anybody who is truly suffering,” Henry says.

For her part, May says the preamble isn’t the part of the bill that requires government action and should therefore not be such a source of concern.

“I’m trying to create a mechanism by which the very best experts from across Canada and potentially around the world put their heads together and come up with better tools for diagnosis, a better program for prevention and awareness and ideally the resources that continue to look at the issue both for better diagnosis and for better modes of treatment,” she says.

Further, May says the bill has the support of the Canadian Medical Association, the Canadian Nurses Association and the College of Family Physicians and Surgeons. She added that the Public Health Agency of Canada “welcomes the opportunity the bill presents.”

Bowie questions the latter, saying AMMI Canada was asked over the summer to intervene by an official of the Public Health Agency, after the bill passed the Commons. He says it was the first time the organization was consulted about the proposed legislation.

However, the Public Health Agency of Canada did not raise concerns about the bill when its representatives appeared before a Commons committee studying the bill in June.

May expressly asked Steven Sternthal, director general of the centre for food-borne, environmental and zoonotic diseases, whether there were things about the bill he would like to see improved.

“No,” said Sternthal. “As I indicated, we view this building on our (Lyme disease) action plan, moving forward, and taking it to the next level of work.”

In written responses to questions about the bill, the Public Health Agency said on Wednesday that it is already working on key elements in the bill through its Lyme disease action plan.

“Going forward, the Agency will engage a range of stakeholders and experts to review and update public health and laboratory diagnostic guidelines on Lyme disease,” it said in an email.

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