Sunday, September 18, 2011

The Rights To Treat and Be Treated

There’s a real possibility that recent events in British Columbia signal the beginning of change in Canada’s suppressive approach to Lyme disease. So far in 2011:
  • A report on chronic Lyme disease by a senior public health official found the Lyme test ‘inadequate’, acknowledged that chronic Lyme can be treated to improve quality of life, and recommended doctors be empowered to adopt ‘realistic but flexible’ approaches to treatment in consultation with their patients.
  • For the first time, a provincial health minister acknowledged the presence of undiagnosed and untreated chronic Lyme disease in BC and confirmed that doctors have the right to prescribe longer courses of antibiotics than set out in the Lyme guidelines.
  • BC announced a new initiative to set up a complex chronic disease clinic to gain experience treating chronic Lyme and to initiate research on a reliable Lyme test.
It’s clear that something changed in the BCgovernment’s approach in 2011. Asked pointedly in Estimates debate by MLA LanaPopham whether BC doctors have the right to prescribe antibiotics for Lyme disease beyond current guidelines, Health Minister Mike de Jong responded:

“There are no constraints on the part of a physician in the circumstances the member has described from prescribing alonger course of antibiotics. That remains the exclusive domain of the physician.”

This frank statement gives primacy to a physician’s judgment in prescribing a remedy for disease. It means that if a doctor diagnoses a patient with Lyme and believes that antibiotics should be given until symptoms resolve,s/he has that right. Unfortunately, it’s also a right not exercised by many doctors today.

In Minister de Jong’s words: “there is, admittedly, a reluctance to do so because the physicians in general terms will follow the guidelines they are presented with by the College in Canada and by international bodies.” That’s the reality in BC and across Canada, and it’s why the guidelines and messaging to docs about the threat and incidence of Lyme need desperately to change.

Most GPs feel pressed to conform to what’sapproved by their licensing body, the public health apparatus, and specialist doctors. Most won’t exercise a right to treat more comprehensively when those holding their license uniformly repeat that a one-size-fits-all formula is best. This is especially true for a disease that few have wittingly dealt with, onethey’re insistently told is ‘rare’ and unlikely to be seen.

Fact is, BC docs are actively discouragedfrom diagnosing Lyme. It’s not too much to say there’s a stigma attached to it,nor that a dim view is taken of any doctor who breaks ranks. The message is,let the test tell you the answer. Fear of being outed for treating Lyme is why Dr. Brian Schmidt, author of a high-level report on chronic Lyme disease for the DM of Health, recommended BC“satisfy itself that a doctor may prescribe therapy to a patient that departs from prevailing medical practise”; and that “a doctor will not be investigated solely on the grounds that the registrant practices complementary medicine oruses non-traditional therapies”. I take him to mean that BC should remind doctorsthey have this latitude, should they in their professional judgment determine a therapy is advantageous to patient health.

These are rights and obligations set out in BC medical law that both doctors and regulatory bodies are insufficiently aware of – especially with respect to diagnosis and treatment of chronic Lymedisease. A longer course of antibiotics for chronic Lyme departs from prevailing practise, yet would qualify as complementary or non-traditional therapy for an illness the physician believes exists.

In Dr. Schmidt’s words: “Concerns continue about the rights of physicians to provide treatment advice to their patients,and the patients’ rights to receive care. Despite the advice of regulating bodies to the contrary, many physicians are fearful of retribution”. In other words, behind the scenes in medicine, there’s a chill on prescribing practises that depart from guidelines for Lyme patients. For infected patients looking to access needed medical care, this chill combines perversely with the Infectious Diseases Society of America’s denial of a chronic form of Lyme.

Dr. Schmidt’s recommendations reflect the urgency of reminding doctors that they are to make the choices in concert with their patients, and that the CPS’s role isn’t to penalize them for supplying a higher standard of care. There is after all a body of research supporting the existence of chronic Lyme and the possibility of symptom-relief and return of function using longer-course antibiotic therapies.

Dr. Schmidt determined that scientific opinion, rather than denying a chronic form of Lyme,supports the idea that it’s a bona fide disease for which ‘no effective test currently exists’. And clinical experience (ie. what physicians have learned from repeated courses of treatment) – if allowed to weigh in the balance – shows definitively that many can return to normal function with antibiotic therapy.

Patients with chronic lyme know thedifficulties of getting such therapy in BC. Inevitably, for an infectious disease that’s bacterial, antibiotics are needed, and when chronic, certainlyfor longer than a month. Absurdly, that’s just what the IDSA guidelines aredesigned to rule out. This works very well for US private insurance companies seeking to close off reponsibility for ongoing therapy, but it deals Canadian patients right out of their care benefits.

Treatment may, for some very sick people,involve taking antibiotics intravenously (many cannot take sustained oral ingestion without reaction). This option is effectively policed out in Canada,via quiet collaboration between Infectious Disease doctors and the hospitalistswho would install the PICC lines for IV therapy. If an IDD won’t authorize theinstallation – and none in BC will so far as I know – IV therapy simply can’t happen.

The BC guidelines are all about confiningantibiotic use to the narrowest circumstance, only where a flawed test ‘finds’Lyme, and then for only the shortest period of time – sometimes as little asten days. And never more than once, whether a patient has had Lyme for a weekor for years.

Dr. Schmidt’s review of the literature concluded what every Lyme victim sadly comes to realize – the test is inadequate and cannot be relied on – yet it’s being used to rule it out definitively. No positive test result, no diagnosis, and no antibiotics – now or ever.

Reliance on a test that doesn’t work keep sick people from accessing medically needed care. Denial of treatment for chronic Lyme keeps disabled people from any relief of pain and return of function. The IDSA guidelines are also used by private insurance companies inCanada (and the infectious disease doctors working privately for them) to deny sick patients care-benefits under their extended healthcare plans (drugs, homecare and nursing, LTD).

Dr. Schmidt notes that “the current state of diagnostic methods for Chronic Lyme and other related infections is inadequate”. He recommends “urgent attention” be given to creating betterdiagnostics and that testing for co-infections become “a component of thestandard diagnostic panel”. Improving diagnostics “is the first and highest priority for BC”.

Compare this to the BC CDC’s Dr. Henry,whose faith abides in the two-tiered test regime – despite strong evidence to the contrary; and in the ability of BC doctors’ to diagnose Lyme – despite 63%of them not recognizing the sole physical symptom (a bulls-eye rash) theguidelines allow as diagnostic.

This I believe is why Dr. Schmidt warned againstthe ‘risk of complacency’: passive surveillance of the population based on confidence in a test whose poor design is fixed like an insect in amber means no clear picture of the actual number of Lyme cases. And refusal to treat those with chronic Lyme means a sentence in hell and/or personal bankruptcy for manyinnocent people.

Just as Schmidt’s confidential report was being released by Lyme advocate Gwen Barlee, BC announced a significant newinitiative: a $2-million specialty clinic to develop experience in diagnosing and treating chronic forms of resistant illness, including Lyme disease. The new clinic is also to have a research component aimed at contributing to development of new diagnostic technologies.

Back to Minister de Jong: “We are obviouslydealing with an area where there are some differing views among clinicians…I and the government and the ministry are satisfied that there are people whose Lyme disease was not diagnosed or treated, and they went on to have real longer term chronic complications.”

This is a giant step forward for government and the ministry of health, placing them beyond the ruling orthodoxy. Minister de Jong acknowledges that Lyme is sometimes missed in BC, goes on to become chronic, and that this has consequences for the lives of patients. These peoplehave been mostly abandoned to their own devices to this point. The new clinicis intended to create a base of experience that might begin to remedy that situation by contributing to new standards of care.

Sustained denial of all problems with Lyme policy has been government’s typical reaction, so this marks a major turning point. The new position is consistent with Schmidt’s reading of the scientific literature, which found the test unreliable but affirmed the efficacy of antibiotic and anti-microbial strategies in treating chronic Lyme – a disease that places “a significant burden on patients who are sometimes given few options or hope.”

“In the face of existing diagnostic knowledge, which is ambiguous at best, it is understandable that a significant proportion of the medical profession is hesitant to move away from the strong and appropriate tradition of only practicing within established standards of care. Hopefully, standards of care and better diagnostics will change with more evidence, but in the face of no treatment at all patients are in the middle of the issue.”

The current ‘standard of care’ results in most physicians providing no treatment at all for chronic Lyme. Enter the clinic: “The good news is that the government recognizes that….we’re probably in a position where we want to get some reliable information and data of our own, which is why the $2-million has beenallocated to fund the diagnosis study.”

It’s fair to infer from this that the clinic is intended to create a space wheretreatment experience can accumulate and be documented and openly discussed. By extension, it implies the high fence the IDSA has built to isolate chronic Lyme from obligations to treat may now have an escape hatch. It will be necessary to ensure no IDSA ideologues invade the treatment space, if learning is actually to occur.

Minister de Jong refers to the “uncertaintyor debate about what… best practises on the diagnostic side actually are”. The$2-million clinic-study is intended to “add to the body of evidence that will help resolve that”. “…until those best practises change, we’re unlikely to seethe response from medical practioners change”.

It’s still early days for the BC Lyme clinic. Negotiations are under way with a potential host and there’s work being done on a clinical delivery model. Therehave been initial discussions with CanLyme about how the clinic might work and on the technical matter of a working definition of chronic Lyme. An advisory group with advocates included is part of the design, but hasn’t been convened. We’re still a long way fromanyone with chronic Lyme actually getting treated. But in the design phase at least, the door appears open to more patient-focused model of care.

Research is to be a second thrust for the clinic: CanLyme is encouraging work towards a reliable test that will bring the kind of ‘certainty’ that enables clear identification and prompt treatment. The potential involvement of Genome BC in the initiative is intriguing. B.C. has donestellar work in developing an HIV test that is now used worldwide – perhaps a reliable test for Lyme could emerge from this collaboration.

All of this is good as far as it goes. But the IDSA guidelines remain in place and doctors, most of whom are kept Lyme-ignorant by design, will continue to rely on ELISA results to rule Lyme out definitively. This means that an unknown but growing number of British Columbians will be condemned each year to develop a life-ruining illness for which they’re unlikely to receive any treatment (unless they self-diagnose without-of-country testing and can somehow find their way into the new clinic).

As advocates, we obviously can’t put all our eggs in the clinic basket. Enough is already known about Lyme to detect it clinically and treat it pre-emptively. It’s not hard to get Lyme, but it can be easy to cure if the intervention follows soon after the bite. Schmidt put the Lyme test’s accuracy in the first five weeks of infection at as low as 20% -that’s the window in which you can treat it most easily and avoid dissemination.Many would put the test’s efficacy far lower still.

With appropriate signals from the Minister of Health and the College, more doctors would feel confident in using their judgment to detect new Lyme infection. The cost of treating it with a month of antibioticsas early as possible is negligible. Think of all the suffering (and expense) that would be spared if the system erred on the side of treating early, rather than on the side of delaying and denying it.

While developing our own treatment experience here is vital, there’s vast experience in treating chronic Lyme in the USA. It would be an excellent idea to find ways to transfer some of the strategicknowledge of doctors like Sam Donta and Raphael Stricker to BC, in order to accelerate our learning.

Dr. Schmidt characterizes Lyme as a stealth pathogen that takes multiple forms and is resistant to extirpation. He refers to the huge potential to aim therapy more strategically at the hiding forms borrelia assumes when it’s chronic. Doctors with broad treatment experience may have useful ideas about how to do that, and how best to deal with the complications of co-infections like Babesia. Conveningopen symposia on pattern recognition and treatment modalities would beconsistent with his recommendation for “more professional education on atypical symptoms and presentations related to B.b. and related coinfections”.

Minister de Jong’s responses to MLA Popham’s questions were encouraging to hear. It’s a giant step beyond his predecessor’s one liner that ‘ BC treats Lyme to international standards’. The fly in theointment is the Minister’s belief that the BC CDC has renewed efforts to raise awareness among B.C. doctors. While he sees this as a sign that Lyme detection is improving, these efforts unfortunately are firmly rooted in reinforcing the status quo. The CDC’s communications with doctors,such as they are, aim to pull them back into the IDSA straightjacket, and into continuing reliance on theflawed test regime to rule Lyme out.

BC has over 5,000 doctors that need to hear that most of BC is endemic for Lyme disease and that people can be exposed to infected ticks in their backyard orin the local park. They need to be educated to recognize variable symptom patterns and warned not to rely on the test. Lyme disease in BC is overwhelmingly neurological, not arthritic. Coinfections are becoming the norm. There should be a clear message to doctors that a negative ELISA should never be used to rule out Lyme disease.

Certainly no one with a bulls-eye rash should ever be told it’s just a ‘spider bite’ or that ‘we don’t have Lyme in BC’. These last two responses – both frequently heard – represent deep ignorance rather than medical insight. They instantly create new Lyme victims and deal sick people out of care-benefits they’re entitled to. They would be immediately addressed if public health were actually seized of its mission to protect the public’s health.

I think many doctors would benefit just from seeing the Minister’s statement that they retain the right to prescribe according to their professional medical judgement. Some know it already, butmost have been captured by the group think that is the IDSA guidelines. I think they would also benefit from seeing Schmidt’s conclusion that ‘antibiotics are inexpensive and generally considered safe…if carefully chosen, delivered, and medically overseen.”

Access to IV antibiotics, which may be necessary for some patients with complex infections that are chronic, is another matter. Currently infectious disease doctors are mobilized to refusesuch therapy for tick-borne infections – somehow this monopoly has to be broken up, as the refusal to recognize chronic Lyme and the blanket prohibition on IV therapy stands between sick people and their health.

Doctors have rights to treat infectious disease with antibiotics, and patients have public health rights to receive medically necessary care as needed. Current circumstances conspire to removeboth sets of rights using rigid formulas where more open approaches are required. We need to keep the Schmidt report in front of the government, the public, and especially our corps of doctors.

That said, we also need to hope we don’t lose Minister de Jong to a cabinet shuffle, and that he continues to move along the Lyme disease learning curve. Openness to change is very welcome. And long overdue.

Tuesday, May 3, 2011

Visiting Canada’s Lyme-leper Colony in San Francisco

Recently I visited with family members living in San Francisco for treatment of a son’s chronic Lyme disease. Refused diagnosis in Alberta, their son Riley got so ill that he and his mother had to move to the US to try to get his health back. A desperate measure, but when the door slams shut on therapy in Canada, there’s only one choice left.

As it turns out, my relatives had joined western Canada’s growing Lyme-leper colony in California. No one in public health up here bothers to notice how big this exodus is – when it comes to Lyme, they prefer to let sick dogs lie. But in San Francisco I learned there’s a whole clutch of Calgary families there buying their Lyme-care. And we can be sure there are Edmontonians and Vancouverites too, because Canada’s refusal to treat people infected with Lyme disease is as universal as our healthcare system.

Young Riley is one very sick boy, having picked up three nasty infections from a single tick bite. This is increasingly the case in Canada, but it wasn’t detected at home – Alberta relies on a faulty Lyme test and doesn’t check for co-infections. We could, of course, decide to improve our shoddy testing, and help our doctors learn to diagnose Lyme from symptoms, but that would require a clear commitment to combat tick-borne infection. Right now, that’s not a public health goal anywhere in Canada.

As a result of Alberta Health’s failure, Riley is now immobilized in a far-away bedroom in San Francisco, where light, movement and sound can be closely controlled. Lyme invades the brain and disrupts the limbic system, making external stimuli painful and disorienting for patients. So Riley is sequestered from people and sound much of the time.

This is a bedroom where he’s tended lovingly by his nurse-mother Christine, for long hours every day. A bedroom he only ever leaves laboriously and briefly, occasionally in a wheelchair for visits to his doctor. A bedroom that’s really now his entire world, in a relative’s house, where family and friends visit in order to help keep hope alive.

Riley was brought to California to be close to his Lyme-literate MD because he’s far too sick to commute from Alberta for appointments. He also needs constant monitoring for his reactions to medications. There are no LLMDs anyone’s aware of in Calgary, nor would one, if s/he actually existed, be allowed to treat chronic Lyme disease in the ongoing, exploratory ways needed.

Riley has a PICC line in his chest to receive the IV antibiotics, antimicrobials, and supplements he needs to clear infections. His digestion is highly disrupted, so he takes his food in liquid form, as smoothies that Christine makes and feeds him, slowly, using a Dixie cup. The medications make him very ill with serious Herx reactions (mass die-off of bugs). Obviously it would be far better if Riley could get his care in Alberta, from local docs, under public health insurance.

Typically, a Canadian doctor known to treat any amount of Lyme disease in any province attracts the unwanted attentions of the local College of Physicians and Surgeons. It shouldn’t, of course, but the behind-the-scenes threat is loss of license. Prescribing open-ended antibiotic therapy would also bring down a posse of Infectious Disease Specialists, whose true specialty seems to be blanket refusal of antibiotics for tick-borne infection (‘self-limiting diseases’ in their 1984-speak).

Like every Canadian Lyme-victim, Riley has an abstract ‘right’ to receive ‘medically necessary care’ for a treatable illness – he’s an insured member of our mandatory healthcare plan. But Canada and the provinces have adopted American ‘practice guidelines’ that effectively de-insure Lyme disease, completely trumping that right. Mandatory inclusion turns into total exclusion from benefits.

Riley did eventually get tested for Lyme in Alberta, and of course he was negative (isn’t everyone!). And under the U.S. private-insurance-company standards that rule Lyme diagnosis in Canada, that test result ‘proves’ he doesn’t have Lyme. It’s bizarre that a test with at best ‘coin-toss diagnostic utility’, that likely misses over nine in ten cases of Lyme, would be relied on to deny it definitively!

Yet Riley did in fact have Lyme and eventually got the serology to show it. But it was delayed a long time, because doctors were disinclined to test him at home, believing firmly that ‘there’s no Lyme disease in Alberta’. As none of these doctors had any clinical knowledge of Lyme, in the end one defaulted to the flawed test to rule it out. And by the time Alberta Health got around to doing this, the bugs had become chronic and colonized much of his body.

More reliable testing, purchased later in the USA, showed him to be positive for Lyme, as well as having Bartonella and Babesia. In other words, ‘better diagnostics’ revealed an all-out assault on Riley’s immune system that was carelessly missed, and glibly dismissed, at home. Another Canadian patient with multiple infections doomed to endure a wasting disease due to complacency in public healthcare.

Note that across Canada, if your step-one ELISA test reads negative, you don’t have Lyme, period. Ergo, you must have something else. Often it turns out to be something fuzzy and untreatable, like an ‘idiopathic’ eating disorder (which ‘explained’ Riley’s thirty pound weight loss); but just as likely, the doctor who says ‘we don’t have Lyme in Alberta’ decides quite arbitrarily that the problem is really in the patient’s head!

It’s funny how so many formerly healthy people, who one day mysteriously begin deteriorating and have the clear feeling that something’s running amok inside, are quickly deemed hypochondriacs by doctors unqualified to make such a diagnosis. And it’s perverse that a lousy screening test allows them to slam the door on more constructive explanations.

Dr. James Schaller, a specialist in tick-borne infections, says of this test: “if your clinician wants to first use an ELISA, simply run! To put it bluntly, the ELISA test as a screening tool is useless…” He continues: “many labs use inferior test kits that are so poor that they miss patients who present with obvious bulls-eye rashes and clear Lyme symptoms.” He’s speaking about the USA, but Canada relies on the same flawed test to definitively rule out Lyme disease – and we’re very good at ruling it out!

Even with clear evidence of Lyme from an Igenex ‘best-practice’ Western Blot, people like Riley are denied all treatment in Canada. Just like private U.S. insurance companies, our governments refuse to provide any therapies for chronic Lyme disease. They just withhold antibiotics and leave you to rot.

Indeed, public health officials line up squarely behind the Infectious Diseases Society of America in denying there’s any such thing as chronic Lyme disease (an irrational idea without scientific evidence). So Riley’s family, like hundreds every year, learned the hard way that Lyme disease is Canada’s first fully privatized illness. And like lots of other western Canadian families, they faced the wrenching choice of travelling (in their case moving) to San Francisco – where they may not leave their hearts, but will definitely leave bags of their cash.

One day I watched nurse-Christine order drugs and supplements following a visit to Riley’s naturopathic doctor, and carefully create a written schedule for his daily IV drips. This process took over a day to complete, with goods arriving in boxes via courier the next day. She’d done a lot of comparison shopping to try to keep prices down. Still the cost, for what would partially cover a couple of weeks at best, was way over a thousand dollars! That’s fiscal reality in Lyme-leper land.

San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.

I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.

If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada).

Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.

Riley had 42 symptoms of Lyme disease listed by the second set of practice guidelines – but these symptoms aren’t accepted for diagnosis in our monolithic healthcare system. None of his 19 Alberta doctors recognized them! There’s just one diagnostic symptom allowed under IDSA guidelines, and most people never have it. So it’s too bad, so sad – now get lost!

This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.

Riley’s illness was allowed to run rampant due to Alberta’s complacency and the failure to get a couple of hundred bucks worth of antibiotics into him pronto. Now he needs tens if not hundreds of thousands of dollars worth of them suffusing his pain-wracked body indefinitely. And with uncertain outcomes!

Cost of care, ballpark, in San Francisco, with the LLMD, naturopath, rolling tests, antibiotics, pro-biotics, homecare nurse for IV cleansing, and assorted therapies, could be as much as $100,000 a year. Easily that much if we allow for lost income for the nurse-mother, or place a value on her 18-hour days. Then there’s rent in San Francisco for most people, often living alone in some grubby flat.

During my stay, I boned up on Lyme when I wasn’t chatting with Christine about the formidable challenges of nursing her boy back to health. I read essays on different approaches to treatment by doctors of varying backgrounds, full of insight into ways of defeating a cunning pathogen and its many manifestations. Pattern recognition is vital in treating complex illnesses, and it only comes from clinical experience. I was impressed by the breadth of experience of doctors who do treat chronic Lyme disease, and aghast that we’re doing nothing to transfer their knowledge into our Canadian medical toolbox.

Riley’s Lyme disease is strongly neurological, and he has co-infections, which requires different approaches than if he had arthritic Lyme and no co-infections. His is also chronic, meaning it was allowed to disseminate. Early on, when the Lyme spirochetes are mainly in the blood, they’re much more treatable than when they spread to organs and remote tissues. They then take persistent forms that evade detection and are more resistant to antibiotics.

Everything in the literature emphasizes the complexity of dealing with chronic forms of Lyme; all evidence reinforces how vital it is that we catch Lyme and the co-infections early and hit them hard with antibiotics. This is pre-emptive public health policy that would cost peanuts to enact but would reduce suffering and debility immensely. Greedy insurers may not wish to do this, but there’s no such motive in a public health plan where risk is pooled and early intervention is the mantra.

Poor Riley got a triple whammy, getting undetected Bartonella and Babesia as well as Lyme. Dr. Schaller calls Babesia Lyme’s ‘cruel cousin’. Increasingly they travel together in ticks, yet Babesia is completely neglected in Canada. Schaller describes their evil synergy: “Lyme weakens your immune system and makes it less capable of controlling Babesia. Interestingly, Babesia infection helps make Lyme disease stronger.”

‘Interesting’ is too neutral a term for the agonies inflicted by these terrifying diseases. The cost in individual lives of missing the opportunity to pounce when they first occur is incalculable. Canada’s indifference in light of the mounting evidence before government is inexplicable and outrageous. It completely violates the spirit and intent of the Canada Health Act’s commitment to all Canadians. And it violates a Charter right to security of person.

Recently, Lyme-activist Gwen Barlee released a confidential report by Dr. Brian Schmidt of the BC Provincial Health Services Authority. To his credit, Dr. Schmidt acknowledged that patients are being abandoned by practice guidelines that rely on poor testing and arbitrarily limit treatment to a short course of antibiotics. Even if an absolute cure for chronic Lyme is elusive, resolution of symptoms and return to an active, independent life is achievable for most.

Dr. Schmidt’s report outlines a positive direction for Lyme disease diagnosis and treatment that would re-open the door to medically necessary care for infected British Columbians. Prior to travelling to California, I’d begun urging our Liberal government and NDP opposition to move forward on these progressive recommendations. The opposition appears open to these changes, which is very encouraging. We’re still waiting for word from government.

I reread Dr. Schmidt’s report carefully while with the Lyme-lepers in San Francisco. It offers hope for a return to an ethical compass in public health policy on tick-borne infections. It provides a direction for addressing and preventing an untold amount of human suffering. Being with Riley and his mom, seeing their struggle firsthand, resolved me more than ever to agitate against a status quo that de-insures Lyme disease and denies ‘medically necessary care’ to people with tick-borne infections.

I’ll have more to say about Dr. Schmidt’s recommendations in future posts, as they deserve a much fuller public airing than they’ve had to date. In the meantime, consider this reality: every day Lyme diagnoses are missed all across Canada, generating new victims who’ll ultimately be forced to seek treatment in a foreign country and pay out- of-pocket. Some of them will become so sick they’ll have to go and live there. Many simply won’t be able to afford that choice.

So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it. We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.

There are many good reasons to visit San Francisco. Lyme disease should never be one of them.

For more on Riley’s story, go to:

To read the Schmidt report, go to:

For an informative article about Lyme and a Canadian doctor’s struggle to have it addressed in Canada:

Friday, April 8, 2011

Concerning Schmidt

The day after release of the Schmidt report last week by Lyme advocates, the B.C. government announced $2-million for a clinical and research study of a variety of complex chronic diseases, including Lyme.

The possibility of a move in this direction was raised in correspondence with the Health Ministry (see previous post). It seems the release of the Schmidt report, with its frank admission of current failings, hastened the announcement as a way to change the channel.

Regrettably, it lumps chronic Lyme with Fybromyalgia and Chronic Fatigue Syndrome as diseases “where the cause is unknown”. This is worrisome as Lyme disease is caused by a known bacterial agent, and it has (like Syphilis) an acute and a chronic phase, which are scientifically documented.

Indeed, Schmidt canvasses the emerging science on how Lyme infection persists in the body, and the complexities of getting rid of it once it disseminates. It’s difficult, but he concludes that patients deserve access to therapies that are now withheld. The difficulty of eradicating lyme once it becomes chronic is why prompt diagnosis and effective treatment of new Lyme infection is essential.

“The clinic will take referrals from family physicians or other health care providers for patients with symptoms of these chronic illnesses. The goal is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management.”

While this clinic can be a step in the right direction, much depends on whether the chronic-Lyme deniers at the CDC and among B.C.’s Infectious Disease Doctors are allowed to oversee it. If they are, obviously it will fail patients, and it will not develop the new knowledge and diagnostics that are desperately needed.

While there’s been informal contact with CanLyme about this idea, so far we haven’t been involved in its design and operation. Lyme sufferers want CanLyme at the table, in the same way the Canadian Cancer Society or other respected disease societies are involved in developing new programs. This would help steer clear of the rocky shoals of systemic bias and the suppressive guidelines in place today.

Since B.C.’s endorsement of the IDSA guidelines ensures that acute Lyme disease is radically under-diagnosed, the incidence of chronic Lyme disease will only continue to mount despite the new initiative. The Schmidt report acknowledges that, given current conditions, we lack a clear picture of how much Lyme infection there really is in B.C. The official story is that it’s rare, based on the few cases confirmed by two-tiered testing – which Schmidt says is unreliable.

We’re urging Health Minister Mike de Jong to make a fresh start by commiting to implement Schmidt’s eight recommendations, beginning with a clear message to all GPs that chronic Lyme disease is a treatable illness under Medicare.

Importantly, a specialty clinic for complex chronic illnesses was not among Schmidt’s eight priorities. Clearly he’d heard of it, as he noted that “a complex care clinic may have merit in the future”. However, he says that “as a first step, attention must be given to immediate action on the development of better diagnostic technologies to detect bacterial and other organisms that may be responsible for chronic Lyme and Lyme-like symptoms.”

“Without better diagnostics there will be no certainty, and little basis for rational treatment decisions.” Today it’s evident we lack a framework for rational decisions about Lyme.

The biggest pitfall is that the $2-million program could be used to whitewash existing practices, which are shoddy and consistently fail patients. The existing two-tiered test regime misses virtually all new Lyme infection, and is poorly suited to detecting chronic disease.

The ELISA – a junk-test for Lyme that should be dropped entirely – is relied upon by many GPs and most IDDs to rule out Lyme disease definitively. Given what’s known about its failings, this is unethical! Show negative on the ELISA, which most do, and you do not have Lyme disease, period and forever in B.C. This must change!

If your acute infection is missed – which it nearly always is, as only one in thirteen B.C. doctors (based on the CDC’s own survey) have the confidence and/or moxy to diagnose and treat Lyme disease from symptoms – you will develop a chronic form of the illness, which is debilitating.

Once you have chronic Lyme, you’re entirely on your own in B.C., as the IDSA guidelines (enforced behind the scenes by the BC CDC Lyme ‘experts’) deny its existence entirely. Infectious Disease Doctors, who currently control access to longer courses of antibiotic therapy, refuse to treat anyone for longer than four weeks, once in a lifetime, and never without a positive Western Blot in B.C.

Among the hundreds and hundreds of newly infected people each year, fewer than ten on average show positive on both an ELISA and a Western Blot.

If you have a negative ELISA in B.C., get ready to go to the USA and buy your care there. It’s credit card medicine all the way. The test-reliant IDSA guidelines turn Lyme into a self-pay disease and the only option for most is outside Canada. Pity those with no resources – it’s a descent into hell with no reprieve.

Current guidelines imported from the private healthcare system to the south of us remove your right of timely access to medically necessary care by design. As a result, Lyme is in effect largely a privatized illness in Canada.

This is what needs to be focused on in B.C., and the Schmidt report offers the way forward. My next posting will outline Brian Schmidt’s sensible, patient-centred approach to Lyme diagnosis and treatment. It remains a wonder that someone highly placed managed to approach the topic with such an open mind!

I urge Minister de Jong to move ahead with implementing the Schmidt recommendations – they provide the foundations for a progressive approach that will make B.C. a global leader in Lyme detection and cure.

One day I’d like awaken to a Vancouver Sun headline like the one last week on HIV-AIDS – “Made-in-BC test used worldwide”. We do know how to get that sort of thing done here in B.C. We have the innovative research capabilities. We just need the ‘can-do’ attitude to tackle the challenge.

As they say at Canadian Tire, ‘Let’s get started!’

David Cubberley

Here are two recent radio interviews:
Lyme piece begins at 15:43.
There is a “C-Fax Market Update First” then a couple of minutes later they get into the Lyme disease topic.

The complete Schmidt report can be found here.

Friday, February 11, 2011

A sign of progress?

Dear Friends,

I recently received a letter from the Assistant Deputy Minister at the Ministry of Health that maybe - just maybe - is a sign that the BC government is beginning to take steps to fix their broken policy on Lyme disease.

Here is what it said:

Dear Mr. Cubberley:

Thank you for your email of December 14, 2010,
regarding the development of standards for Lyme disease diagnosis and treatment. I am responding to you on behalf of the Minister of Health Services.
I appreciate the time you have taken to share your concerns with the Ministry of Health Services (the Ministry). The Ministry remains aware of the debate around the treatment and diagnosis of Lyme disease, and as such, has asked the Provincial Health Services Authority to conduct a review and present options for establishing a provincial program for patients with complex symptomatology possibly related to underlying infectious diseases including Lyme Disease. The review is expected to be complete in Spring 2011.

Again, thank you for writing. I appreciate the opportunity to respond.

I appreciated and was heartened by this reponse because it wasn't a defense of the status quo but a surprising commitment which could lead to positive change. Here is the response I sent today.

Heather Davidson,
Assistant Deputy Minister,
Ministry of Health Services,
Province of British Columbia.

Dear Ms Davidson,

Thank you for responding to my December 14th email criticizing Lyme disease diagnosis and treatment standards in B.C. I was intrigued to hear that the Provincial Health Services Authority will “conduct a review and present options for establishing a provincial program for patients with complex symptomatology possibly related to underlying infections”. Even tacit acknowledgement of unexplained chronic illness in B.C. – some of which is certainly Lyme and other tick-borne infections – is welcome and a potentially positive step.

It would clarify the intent of this review if its full scope were made public, so we can know whether it includes evaluating flaws in the existing diagnosis and treatment protocols. These after all are the principal source of so much chronic Lyme disease, with such devastating consequences for families. B.C.’s first priority must be to catch Lyme early and treat it effectively, so no one is left behind for lack of a month of off-the-shelf antibiotics. This will require addressing what’s happening in doctors’ offices across BC today, where fewer than one-in-twelve are sufficiently Lyme-aware to diagnose from symptoms, and nearly two-thirds don’t even recognize a bulls-eye rash as diagnostic of Lyme disease (without using tests). Just last week I heard from two chronic Lyme-sufferers who’d had EM rashes dismissed by doctors as ‘spider bites’, and were refused Lyme diagnosis and treatment on those grounds.

This made disseminated Lyme disease inevitable for both, a condition refused treatment under B.C. Lyme guidelines. While much depends on what this review looks at, more still depends on who is doing the looking. Lyme advocates are anxious to hear that no public health or infectious disease doctors who categorically deny the existence of chronic Lyme disease will lead the review or play a role in devising options for the clinic. Persistent refusal to acknowledge chronic infection is at the root of our problem today. Involvement of the architects of B.C.’s flawed approach to Lyme – the same parties who refused to disclose the results of the 2007 doctor survey or the exact laboratory methodology used to establish low rates of Borrelia in Ixodes pacificus or I. angustus ticks – would render it useless. These are the same officials who refuse to do anything to curb the inappropriate use of the flawed ELISA to definitively rule out Lyme disease, irrespective of symptoms including the EM rash! It’s also essential that whoever is given the clinical lead for a provincial centre for chronic illness have a more open mind than most of B.C.’s Infectious Disease specialists, whose association’s guidelines suppress detection of Borrelia and deny the existence of a chronic form. Can you give a clear undertaking that this initiative will avoid these pitfalls?

Finally, I would like to know what role those who advocate on behalf of higher standards of care for Lyme sufferers will play in the review of current standards and the development of this clinic? I think that CanLyme can make a huge contribution to improved standards of care, given its experience helping those who’ve been refused diagnosis and care due to Lyme-denial.

Notwithstanding any of the above comments, I was pleased to receive a response that wasn’t simply a rationalization of the status quo. Thank you on behalf of B.C.’s rapidly growing Lyme disease community.

Yours for prompt detection and effective treatment,

David Cubberley,
BC Director, CanLyme

Cc: Hon. Colin Hansen,
Minister of Health Services,
Jim Wilson, President, CanLyme
Dr. Perry
Kendall, Provincial Health Officer, MHS

I know there are many who will be watching these developments with great anticipation. I will certainly continue to keep you informed.


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.