Last week, Lyme disease patients across Canada cheered as Elizabeth May’s private member’s bill on Lyme disease passed third reading. This historic moment was cause for celebration, not only because private member’s bills almost never receive all-party support, but also because it showed the federal government is finally taking Lyme disease seriously.
In British Columbia, however, it is a different story.
Last week, yet another doctor resigned from the Complex Chronic Disease Program, an initiative announced by the B.C. government with much fanfare three years ago. The program was supposed to treat Lyme disease and other complex chronic illnesses.
This doctor didn’t go quietly into the night; instead, Dr. Liz Zubek made her resignation letter public, saying she was leaving because the program was “going backward instead of forward” in terms of meeting its mandate.
Specifically, Zubek pointed out that the program was not providing antibiotic treatment for Lyme disease.
Yes, you read that correctly.
Although Lyme disease is an infection, caused by the Borrelia spirochete, instead of antibiotics the program was advocating cognitive behavioural therapy as “treatment” for Lyme disease patients. Nowhere in the annals of medical literature does it show that deep breathing exercises and yoga will eradicate an infection.
The failure of the program to meet its original mandate regarding Lyme disease led Zubek to sound the alarm and to publicly resign, but unfortunately for patients, it appears that what has unfolded at the clinic is just a microcosm of how Lyme disease is mismanaged in B.C.
Across Canada, the infection rate in the the black-legged tick that carries Lyme disease has soared. In Newfoundland the infection rate has reached 27.3 per cent, in Ontario 15.9 per cent, in Nova Scotia 11.8 per cent and in Alberta an astounding 20 per cent. However in B.C., medical authorities report that, magically, we have just a 0.5 per cent Borrelia infection rate in our black-legged ticks, a rate that is unchanged in decades.
The notion that B.C. can stop infected ticks at our border is, of course, ridiculous, especially when you consider the staggering rate of infection south of the border. In 2012, the U.S. Centers for Disease Control reported about 30,000 cases of Lyme disease a year. However, in August 2013, the CDC made a stunning announcement that they believed Lyme disease had been under-reported ten-fold and there were actually 300,000 cases annually. Compare those numbers to the 315 cases officially reported in Canada and the 18 Lyme disease cases that were identified last year in B.C.
The earthquake doesn’t stop there. New and compelling science is rapidly changing what we know about Lyme disease. Peer-reviewed studies show persistence of infection after antibiotic treatment and recent scientific papers reveal how different strains of Borrelia, such as Borrelia miyamotoi (a strain likely to be found in B.C., if anyone were looking), can not only cause Lyme disease patients to present with a different array of symptoms, but can also confound blood tests. These findings are triggering vigorous, more informed discussions about this serious tick-borne illness.
Indeed, new science led Health Canada to recently announce that the diagnosis of Lyme disease should be a “clinical” one; where doctors diagnose based on a patient’s symptoms rather than a substandard blood test.
Acknowledging that our current tests in B.C. aren’t identifying all strains of the bacteria that cause Lyme disease might be embarrassing for some medical authorities, but it isn’t a crime. What is unacceptable, though, is for those authorities to continue to defend inaccurate tests as “best practices” and to provide outdated and erroneous information to doctors who desperately need help treating this challenging illness.
Patients with Lyme disease in B.C. deserve better. For too many years, people living with this illness have had to go to the U.S. and pay for tests and treatment they should be able to get at home. People have mortgaged their homes, lost their jobs and seen their children end up in wheelchairs because of the inadequacy of treatment here. This simply has to change.
B.C. is at a fork in the road: Will we continue to defend the status quo and effectively deny Lyme-disease patients the diagnosis and treatment they desperately need; or will we recognize that we can do better, admit our mistakes and move ahead, as the federal government is doing, by embracing new science, updating treatment practices and working with patient advocates and their experts?
The choice is ours.
Gwen Barlee is policy director of the Wilderness Committee and an advocate for victims of Lyme disease.