Thursday, January 20, 2011

Let's End The Denial

December 14, 2010

Honourable Colin Hansen, Minister of Health, Province of B.C.

Dear Minister Hansen,

Recently we joined Gwen Barlee in releasing partial results of a 2007 Lyme-disease doctor survey obtained under FOI from the BC Centre for Disease Control disease. The full survey hasn’t been made public, but the few results we obtained contradict the BC CDC’s claims that Lyme disease is rare, and that doctors have the knowledge to diagnose and treat it. Despite having these results for three years, the CDC hasn’t informed the public or intervened to remove barriers to prompt Lyme diagnosis and treatment.

In 2007, the BC CDC acknowledged just13 cases of Lyme disease across the entire province, up from seven in 2006. Yet the 2007 survey of 5397 doctors reveals that 148 doctors diagnosed and treated 221 cases of Lyme disease across B.C. This level of diagnosing Lyme is far greater than officially acknowledged, pointing to inadequacies in our testing and reporting procedures. Yet the BC CDC has buried these issues, preferring instead to sit on the evidence. We see this as covering up obvious flaws in their approach rather than meeting their obligation to protect the public from infectious disease.

In the FOIed material, the BC CDC claims the survey shows BC doctors are knowledgeable about Lyme disease. In fact, it shows just the opposite: 63% of doctors surveyed don’t know a bulls-eye rash is diagnostic of Lyme and should lead directly to treatment without requiring tests. This means that anyone presenting with such a rash has less than a four-in-ten chance of receiving immediate therapy for Lyme disease. B.C.’s two-step test nearly never detects Lyme disease (4 – 6 cases in a typical year). People with a rash who are denied therapy on the basis of a test they shouldn’t be given are forced to endure chronic Lyme disease, which is debilitating. Despite knowing that some citizens would have been infected and denied treatment (and were and are being, in each and every year, before and since) due to this situation, the BC CDC opted to do nothing except sit on the facts. This is utterly unacceptable conduct by a public health bureaucracy and it should trigger immediate attention and action.

Last month I heard from a new Lyme-sufferer in a small community in the Kootenays, whose experience is sadly quite typical. Bitten in August, with a bulls-eye rash and classic flu-like symptoms, mobile joint pain, headaches and increasing disorientation, this woman visited all three doctors available to her locally. The first doctor was in the over six-in-ten group who don’t recognize the bulls-eye rash – but with an added barrier: ‘I don’t believe in Lyme disease’. The second doctor was also in the over-six-in-ten group who don’t treat on the basis of the rash, so he made the patient take the BC Lyme ELISA, which of course came back negative, as it nearly always does (see Sperling, email to BC Deputy Provincial Health Officer, August 2008, for detail on this issue). So the second doctor ruled out Lyme disease based on the test result – which means no treatment ever under current guidelines. Fortunately for this patient, the third doctor was in the small group of Lyme-aware physicians (about 8% of those responding to the survey) and he clinically diagnosed Lyme and prescribed antibiotics. Regrettably, after all the delay with the previous doctors, the woman now has chronic Lyme, meaning she needs longer-term antibiotics, which the BC CDC guidelines and the Infectious Disease Doctors of BC categorically refuse. If she isn’t cured with a short course of antibiotics, she’ll have to join the many citizens buying care in the United States.
This is the Lyme-trap snaring many infected people in B.C. today. The BC CDC fiction is, Lyme is rare here and should you be unlucky enough to get it, your doctor knows what to do. The fact is, all of southern BC is endemic for Lyme, it’s in every community and the BC CDC has made our docs so wary and reluctant to see Lyme disease that many infected people aren’t promptly diagnosed and treated.

Here’s an example from Sheri Souch of what happens to patients routinely:
“I removed an attached tick in the same year (2007) and developed a bull’s eye rash around that tick bite and classical Lyme symptoms. My doctors even video-taped two secondary bull’s eye rashes, but said that they could not diagnose me with Lyme because I tested negative on the ELISA. I have since recovered, having received Lyme treatment from the US, but not before having my life and finances destroyed for over two years.” (Sheri Souch, email to Dr. H.M. Oetter, Registrar, BC CP&S, cc’d to Dr. Perry Kendall, November 2010). Note Minister, she was denied antibiotics despite having the rash because the test – which should not have been required – showed negative. It would be most unfortunate if this systemic denial of healthcare had to be remedied by the courts!

A true public health approach would involve seeing the test’s failure to detect in cases where patients had the diagnostic bullseye rash as indicative of flaws in the test design. Knowing that an unspecified but potentially large group of British Columbians were being denied access to treatment due to flaws in diagnosis and testing protocols, the BC CDC should have intervened to rectify the situation.

Mr. Minister, British Columbians are being denied access to medically necessary care due to flawed tests and an induced skepticism about Lyme’s prevalence promoted by the CDC on the U.S. model. Actions are needed to provide doctors with appropriate diagnostic tools and to free them to recognize and treat Lyme effectively when it appears in their offices. This is not difficult to do, but it means getting out from under the inadequacies of the BC CDC’s suppressive approach to this disease. And this needs to be done before the disease becomes an epidemic.

CanLyme and the Canadian scientists on our board would be pleased to work with the Province of British Columbia to improve access to reliable diagnosis and effective treatment for patients. Catching Lyme early and treating it promptly doesn’t involve rocket science and isn’t cost-prohibitive – but bias and cultivated ignorance have to be replaced with scientific knowledge and medical knowhow. We would welcome the opportunity to work with you for prompt diagnosis and care of Lyme disease.

Respectfully yours,

David Cubberley, BC Director, Canadian Lyme Disease Foundation
This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.