This week, infectious disease specialists stood before a Senate committee to voice their concerns about proposed legislation on a national Lyme disease strategy. They say the bill's preamble dismisses accepted evidence and is "anti-science". Brent speaks to Dr. William Bowie who represented the Association of Medical Microbiology and Infectious Diseases Canada at the Senate hearing this week, and Green Party leader Elizabeth May who sponsored the private member's bill.
The fight over fighting Lyme disease
For years, renowned author Amy Tan struggled with a variety of ailments that perplexed her. She had a racing heart, nausea, insomnia, head and muscle aches and seizures. She couldn't connect disparate thoughts and had trouble writing and reading.
Tan saw ten doctors before being diagnosed with chronic Lyme disease. She says long-courses of antibiotics gave her back her life. But she now has permanent physical damage.
Tan's story is not unique. Lyme disease - caused by Borrelia burgdorferi, a bacteria transmitted through a tick bite - can be hard to diagnose. Symptoms can take from three days to one month to appear and many of the them (fever and chills, fatigue, headache, muscle and joint pain) are similar to other ailments. If untreated, it can have lasting neurological effects.
Lyme disease is on the rise. The Public Health Agency of Canada says that in 2012, there were 315 cases of Lyme disease in this country. The final numbers for 2013 aren't in but are expected to be about 500. The agency predicts 18,000 cases by 2020.
Private Member's Bill Two years ago, Green Party leader Elizabeth May sponsored a private member's bill that proposes developing a national strategy on Lyme disease. That strategy includes tracking infections and establishing guidelines for prevention, diagnosis and treatment. The bill garnered support from all parties - which is rare for a private member's bill - and passed the House of Commons in June. It's now before Senate and is expected to pass there as well.
Scientists weigh in
But Lyme disease is controversial
. Factions are divided over the way it's diagnosed and treated, and whether chronic Lyme disease even exists at all.
This week, infectious disease specialists presented their concerns with the proposed legislation to a Senate committee. Dr. William Bowie, an infectious disease specialist who represented the Association of Medical Microbiology and Infectious Diseases Canada in the Senate, explained why they're taking issue with the preamble of the bill in particular.
"It proposes that we ignore decades of solid scientific work and instead buy into a belief system that is largely founded on what I would say is pseudo-science and factoids and misrepresentation of data that does not have any solid scientific support behind it."
"It's one of the most egregious anti-science and pseudo-science pieces of legislation I've ever seen," he adds.
Dr. Bowie says that while he remains open to the possibility, there's currently no scientific evidence for chronic Lyme disease. "The data that Lyme advocates put forward has no proven clinical relevance."
Dr. Bowie's and AMMI Canada's main concern is that the preamble appears to support the idea that significant numbers of Canadians are suffering from a condition they believe to be chronic Lyme disease and that the medical system is failing them by refusing to accept that diagnosis.
They say the preamble suggests Canadian medical guidance on how to spot Lyme disease relies on U.S. guidelines it terms "so restrictive" that they severely limit the diagnosis, leaving sick people to suffer. Dr. Bowie says there is no doubt whatsoever that cases of Lyme disease are increasing. He supports the rest of the legislation but is not convinced a new federal strategy is needed. He says if strategies for treatment are based on science, they would likely end up being the same as they are now.
He warns of negative consequences for Canadians if the preamble is allowed to stand.
"One, you are saying to them, you have Lyme disease. Then they stop looking for alternative explanations that are making [their] lives hell. The second part is that they are being exposed to often months and months of antibiotics that likely do no benefit, but certainly carry risk, direct side-effects which sometimes result in hospitalizitons, and for one woman in B.C., death. They result in risk that drives our huge problem of antibiotic resistence."
Dr. Bowie and AMMI Canada want to strip three paragraphs from the preamble to the bill, saying it can support the rest of the document. The preamble to the bill will not be part of the law once its okayed by the senate, says May.
Green Party leader pushes back
But Green Party Leader Elizabeth May says that isn't possible at this stage, without killing the bill. And that there was a two-year period when the bill was before the House of Commons, and Dr. Bowie never raised these concerns. Bowie says AMMI Canada was asked over the summer to intervene, after the bill passed in the House.
In response to Dr. Bowie's claim that it's based on pseudo-science, she says: "The preamble as with the rest of the bill, is very science-based." If it weren't, she says: "It's extremely unlikely, if not impossible, that Health Canada, the Public Health Agency of Canada, the Canadian Medical Association, and the College of Physicians and Surgeons of Canada would all have been so positive and supportive of the bill."
"I'm not a doctor, I'm a parliamentarian," says May, who adds that she's "distressed and extremely alarmed about the number of Canadians who have come to me...who are suffering. It is a growing infectious disease problem. I'm just trying to get out in front of it with a very constructive and collaborative approach to develop a federal framework."
May says there's a need to increase and share best practices between provinces and the federal government, and between medical practitioners.
"Lyme disease patients need help," she says. "We want to get them that help."