Chronology of Lyme disease in B.C. and the Complex Chronic Disease Program
May 2010: After years of pressure from the Lyme disease community, the B.C. government commissioned an internal report, which was completed by Provincial Health Service Authority official Brian T. Schmidt and presented in May 2010. The Schmidt report said most doctors lack knowledge of Lyme, and B.C.’s testing system was flawed, needing “urgent attention.”
The report also highlighted the controversy surrounding Lyme, saying:“The diagnosis and treatment of Lyme disease is contentious, and has fractured professional relationships … The controversy impacts patients and patient care.”
March 2011: The Schmidt report, obtained by Lyme disease advocate Gwen Barlee through a Freedom of Information request, hit the media on March 29, 2011, including the front page of the Vancouver Sun.
The next day, the B.C. government announced that a“$2-million provincial clinical and research study will help patients with a variety of complex chronic diseases, such as chronic Lyme disease.”
Of that day in 2011, Barlee says now:“It was like high-fives all the way around ... It was a moment of elation, and thanks, and looking at a government that had recognized that they had a problem and that they needed to do something to fix that problem, and the clinic was meant to be a step toward fixing the problem.”
August 2013: After two years of working behind the scenes with the CCDP on its patient advisory committee, the Canadian Lyme Disease Foundation, or CanLyme, publicly withdrew from the committee and removed their endorsement of the clinic, which had started seeing a few patients before its official opening set for September 2013.
In a statement at the time, CanLyme president Jim Wilson said the CCDP’s approach would not meet their mandate to “provide better treatment for neglected chronic Lyme disease patients; people who couldn’t get adequate treatment in B.C. ... If we’d been informed at the outset that the clinic was limited to the wholly inadequate status quo on treatment, we’d never have gone near it, let alone endorsed it.”
Wilson, who lives in Kelowna, told The Province this month that the CCDP was“a huge disappointment,” and he hopes to find out more about what happened when Barlee’s FOI material becomes public.
May 2014: CCDP medical director Dr. Alison Bested abruptly left the clinic, to the dismay of hundreds of patients. Bested, a highly respected expert, was brought in from Ontario in 2012 to set up and run the CCDP.
Bested released a public statement in July 2014, saying the CCDP had shown “great promise” earlier, but “regrettably, for the many British Columbians suffering chronic debilitating illnesses and pain, this promise was not kept.”
This month, Bested told The Province the primary reason for her departure was her frustration with hospital management implementing changes in a “heavy-handed ”way that was “just not acceptable, ”leading her and other doctors there to believe patient care would be compromised.
Along with Bested, three other doctors left the clinic last year. One of them, Dr. Liz Zubek, said all four resigned from the CCDP “in protest to the administrative restraints.”
Zubek said: “Dr. Bested was doing everything she could for good patient care, to get the treatment the Lyme patients needed. But she just ran into so many obstacles.”
Patients have lamented the doctors’ departures. Susan Owen still attends the CCDP, but said: “When Dr. Bested was there, there was a lot more hope for things getting done.”
October 2014: With B.C. Lyme patients reeling over the loss of the CCDP doctors, Barlee set to work to find out what went on behind the scenes, and how things had gone from the high hopes of May 2011 to their “demoralizing” position in late 2014. Barlee filed a Freedom of Information request for internal government records and communications about the CCDP, and was told it would cost $2,160 to access the records. She turned to crowdfunding to raise the money, and hit her target within four hours of launching a fundraising campaign.
Zubek offered to pay half the fee, matching dollar-for-dollar everything raised by donors. Barlee applauded Zubek, who had left the clinic months earlier, for “putting her money where her mouth is.”
December 2014: In Ottawa, a private member’s bill calling for a national Lyme disease strategy passed the Senate, and became law. Introduced by Elizabeth May, MP for Saanich- Gulf Islands and leader of the federal Green party, the Federal Framework on Lyme Disease Act had support from all parties and the Canadian Medical Association.
Dr. Bested said Bill C-442 is “a great thing, ”and“a recognition that people are getting sick with Lyme disease. So it’s a beginning. At least we’re at the beginning now, it’s better than where we were before.”
While Bill C-442 came as welcome news to Lyme patients, advocates and doctors, they are cautious in their optimism — they’ve been let down in the past.
Bested points out there are still many challenges ahead in improving treatment and testing for such a complex and little-understood disease.
“It’s like we’re where we were with HIV 30 years ago,” Bested said, adding it wasn’t until doctors designed reliable, sensitive tests for HIV and AIDS that things really started to improve.
“We don’t have a reliable test for early-stage Lyme disease,” Bested said. “It’s like we’re learning the alphabet of Lyme disease now.”