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.
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.
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!’
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.