‘THE HEALTH-CARE SYSTEM HAS TURNED ITS BACK ON ME’
Lyme disease sufferers say Vancouver clinic has been a failure
In 2013, a clinic heralded as the first of its kind in Canada opened in Vancouver with a mandate to diagnose and treat Lyme disease in B.C.
It was a moment of great hope and optimism for many chronic Lyme sufferers in B.C. But two years later, frustrated patients say the clinic, the Complex Chronic Disease Program, has been a failure and they haven’t been able to get the treatment they seek — and they want to know why.
According to Health Canada, Lyme disease is a serious illness caused by the bite of an infected black-legged tick. Symptoms can include fatigue, recurring arthritis, paralysis and cognitive dysfunction.
Lyme disease has often been a contentious topic in Canada, and the CCDP has been beset by controversy. The Canadian Lyme Disease Foundation publicly renounced and criticized the CCDP, and a series of doctors resigned their positions to protest management decisions they said compromised patient care.
Next week, Lyme disease patient and advocate Gwen Barlee hopes to gain some insight into what happened behind the scenes at the CCDP, as she expects to receive access to internal government records and documents through a Freedom of Information request filed last year.
Barlee and many others want to know how the CCDP went from the “tremendous opportunity” she believed it was when announced in 2011, to the situation now, which she describes as “a slap in the face to Lyme disease patients.”
David Cubberley, a former B.C. MLA and opposition health critic, said after the optimistic time in 2013 when the CCDP opened, “it was all downhill from there. A luge ride downhill.”
Janice Holdershaw, a Lyme patient in Haida Gwaii, got a doctor’s referral and made the threeday trip in March 2014, at significant expense, from her remote home in the North Coast to the CCDP in Vancouver. It wasn’t an easy trip for her, but she was “thrilled” at the prospect of seeing a Lyme disease specialist.
But she didn’t see a Lyme-literate doctor at the CCDP. In fact, she said, she didn’t get to see any other doctor. Holdershaw saw a nurse practitioner who gave her a 15-minute lesson on meditation for relaxation, she said, and she went home exhausted and disappointed.
“The CCDP was a complete disappointment and waste of time, travel, and taxpayers’ money,” Holdershaw said.
The clinic, located at B.C. Women’s Hospital, is mandated to treat other complex diseases, including Chronic Fatigue Syndrome and Fibromyalgia.
One of the CCDP’s early patients, Susan Owen, a registered nurse now on disability, said: “They were mandated by the provincial government to establish this clinic to offer treatment and to do research. And in my eyes, and many other people’s eyes, it has been a total failure. For myself, I kind of feel like the health care system has turned its back on me after all the years of service I’ve put in as a registered nurse.”
Dr. Jan Christilaw, president of B.C. Women’s Hospital, defended the clinic and said the CCDP is doing important work.
“It’s fair to say we’ve got off to a bit of a stormy start. And in the last year, we’ve done a ton of work on this clinic,” Christilaw said. “We have moved forward in many, many very positive ways at this clinic.”
Christilaw said they’ve recruited new doctors to replace those who left, and they have increased the clinic’s capacity, which had been a “huge issue” for them.
“We know that ... within the province there may be 80,000 or 100,000 people that might be able to benefit from coming to a clinic like this,” she said.
“We cannot actually hope to serve that whole capacity in a single clinic ... We are trying our best to build up the clinic so we can actually serve these people because we know how desperately they need help.”
The controversy over the CCDP comes at a time when public health officials say the risk of contracting Lyme disease is on the rise across Canada, with much of southern B.C. recognized as an elevated risk area.
Lyme disease advocates are raising alarms about what they see as an under-recognized crisis.
Cubberley, now a director of the Canadian Lyme Disease Foundation, says: “The potential is there for anybody to get it in virtually any part of the country now. And because the health care system has turned its mind away from the matter, it’s closed its mind, that constitutes a crisis ... You basically do have a crisis in slow motion.”
Lyme disease made headlines this month when Canadian pop singer Avril Lavigne opened up about her experience battling the illness, which she said left her bedridden for five months.
“I thought I was dying,” Lavigne told People Magazine. “I had no idea a bug bite could do this.”
In 2009, Lyme disease was added to Canada’s list of nationally notifiable diseases, and over the next five years the Public Health Agency of Canada noted the number of recorded cases across the country quadrupled.
But still, it’s estimated “the true number of infections to be at least three times higher than what has been reported today,” said Steven Sternthal, of the Public Health Agency of Canada, speaking to Parliament in Ottawa last year during deliberations on a bill calling for a national Lyme disease strategy.
Barlee believes the CCDP has been “such a missed opportunity. Here we (in B.C.) went from potentially being leader of the pack, to going ... backwards when the rest of Canada is going forwards.”
Christilaw, of Women’s Hospital, disagreed with that characterization. She said the CCDP is helping B.C.’s Lyme community, adding: “B.C. is not behind the curve here, if anything, we’re ahead of the curve.”
Now, Barlee is counting the days until she can dig through the records and release what she finds — coincidentally just in time for May, which marks international Lyme Disease Awareness Month.