Disease expert's excuse is 'hogwash'

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Lyme sufferers accuse disease control centre of covering up real figures
By Alan Campbell, Richmond News November 12, 2010

•Story•Photos ( 1 )
Three members of the Goertzen family in Richmond suffer from what they believe is Lyme disease. They say the B.C. Centre for Disease Control suppressed data that contradicts the centre's assertions that Lyme disease is relatively uncommon in B.C. The Goertzen family, from left: Graham, Taylor, Shannon and Parker. Mom Shannon and her two sons, Taylor and Parker, all suffer from Lyme disease related illnesses.Photograph by: Chung Chow, File photo"It's total hogwash."

That was Shannon Goertzen's reaction to the explanation given by B.C.'s top disease expert, Dr. Bonnie Henry, for an alleged cover-up and massive discrepancy between the BC Centre for Disease Control's (BCCDC) official Lyme disease figures and the number of cases diagnosed by the province's doctors.

In 2007, the BCCDC reported just 13 cases of Lyme -- a potentially life-altering tick-borne disease that can ravage both body and mind if not diagnosed early -- while a survey of B.C. physicians by that same organization discovered that 221 cases of Lyme had been diagnosed in the same year.

Moreover, the doctors' survey answers were only handed over to a member of a Lyme support group, Canlyme, after 18 months of repeated inquiries and, eventually, the filing of a freedom of information (FOI) request.

Henry -- director of Public Health Emergency Services at the BCCDC and assistant professor, School of Population and Public Health at UBC -- claimed that the survey results were "not kept quiet in any way" and that the results have been presented "at a number of meetings and conferences" and are undergoing scientific review and validation. That in itself is a "very public process," she added, via an e-mail interview.

Goertzen, a Richmond mother of three, said Henry's response is entirely indicative of her family's experience of how the disease is still being ignored in B.C.

The News highlighted Goertzen in May, along with her two sons, as having their lives turned upside down by Lyme and spending their life savings paying for medical help from U.S. doctors.

"It's the standard party line and I've heard it all before," said Goertzen. "And it doesn't even come close to answering the question as to why there is such a massive difference between the official figures and the number of cases being diagnosed."

As for the survey results being readily available, as claimed by Henry, Goertzen said it's simply not true.

"A Canlyme member had terrible trouble getting those results," she said.

"In our experience over the many years, this is exactly the way we've been dealt with. (The B.C. medical profession) will continue to deny there is a problem with Lyme in this province.

"We're still getting people coming to us and asking for advice on Lyme disease, it's crazy. They read the Richmond News articles online, Google us and contact us because they can't get answers in B.C. for what they're suffering from."

Gwen Barlee, the Canlyme member and Lyme sufferer who filed the FOI request to get the survey results, was stunned to hear Dr. Henry's explanation.

"During January, 2009, I asked the BCCDC for the survey results and I asked another three times and was told each time I was getting them," said Barlee, who's also a policy director of the Western Canada Wilderness Committee.

"But 18 months later, I had to file a freedom of information request to get the results. Only then did I get the results. They have never been released to the public.

"I find (Henry's) comments very bizarre ... I'm not sure why she is saying that."

David Cubberley, a Canylme board member, was equally astonished to hear Henry claiming the survey results had been made public.

"Dr. Henry has never acknowledged it publicly before. However, she has said many times that the survey supports her claims of low incidence of Lyme and that doctors in B.C. know how to diagnose and treat Lyme, yet the few results reported contradict her claims," Cubberley said.

"Bottom line: evidence refuting the official story was covered up for three years. We have never been allowed to see any actual survey results to determine for ourselves, despite repeated requests.

"What's troubling is that the BCCDC persisted in claiming low incidence of Lyme, while having robust evidence that many physicians were seeing and treating it clinically all across B.C.

"The BCCDC didn't acknowledge this because it contradicts their fiction that Lyme is rare in B.C."

When the News asked Dr. Henry to explain the gulf in doctor's diagnosed cases and figures released by the BCCDC, she said the centre can't report it if they don't know about it.

"In order for a case to be reported to the BCCDC, the case must be lab confirmed or a physician must report it to the BCCDC," she said by e-mail.

"This survey provides valuable insight into clinician knowledge, beliefs and practice in B.C.

"One (survey) question asked about the number of patients with (Lyme) that physicians had seen in their practice in 2007.

"It was a general question and did not ask if they were acute cases, had signs and symptoms which meet the surveillance criteria we use in B.C., whether it was an assessment of a tick bite, or whether they were affected while in B.C. or traveling etc.

"For these reasons, we cannot use this data as official reporting. Also, based on this data, it is difficult to determine if each case saw more than one physician (ie. two or more doctors are referencing the same patient)."

Henry was also asked to explain why, according to the BCCDC's survey, only 60 per cent of B.C.'s doctors knew that Lyme was even a reportable disease.

"The simple answer is that physicians do not report clinical cases to medical health officers with the degree of completeness that we would like," Henry said.

"This is true for all the 40 plus reportable diseases and in our surveillance we are largely reliant upon laboratory testing to alert us to trends. British Columbia is no different from any other jurisdiction in this regard."

Cubberley said Henry's response to the News' questions stinks of a cover-up. "Dr. Henry can't have it both ways -- claim that doctors have the knowledge to diagnose Lyme from symptoms, and then dismiss as anecdotal evidence that those doctors are diagnosing Lyme far beyond acknowledged levels," Cubberley said.

Meanwhile, the Goertzen family, although getting a rough ride of it lately, are well on the road to recovery after seeking help south of the border.

"(Parker) was doing great up until this week. He started an intensive course of IV treatment six weeks ago and we were warned that he might hit a wall at the six-week mark. Prior to that he was been swimming, playing basketball and running around and hadn't used his wheelchair in a long time."

She said that 17-year-old Taylor had a rough summer but has made "big improvements" recently.

As for the mom herself, her U.S. doctor said she's about 70 per cent recovered.

"I'll never be cured," she said. "It's always a rollercoaster. We've still a road to haul, all of us. But we're on the right track."

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