February 7,  2017                                     
Dear Minister Philpott,

As more and more Canadians are contracting Lyme disease all across Canada, we are alarmed and very concerned as this is the fastest spreading infectious disease in the world.    As more and more Canadians are contracting Lyme disease and suffering from the debilitating and devastating consequences of Lyme all across Canada, your government and its advisors seem further and further removed from acknowledging and taking meaningful action to address this healthcare crisis.
 
On February 7th 2017, the Government released the draft Federal Framework on Lyme Disease required by Bill C-442.  This draft document is completely inadequate and frankly is a slap in the face to all Canadians who supported and pushed for Bill C-442.  In good faith, we expected complete transparency and partnership.  We expected that the Framework would incorporate the compelling feedback and concerns from Lyme sufferers on record, and the cutting edge science presented by doctors, experts and researchers from around the world, also on record.  This is a is a travesty and isn’t a framework for an action plan at all, but merely an everything is okay status quo report.
 
We expected collaboration which would be marked by an invitation and willingness for equal partnership between federal beaurocrats, PHAC policy-makers and Lyme stakeholders. However, this didn’t happen.
 
Lyme stakeholders were shut out and ignored, they were not consulted for input.  This is devastating.
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Lyme Sufferers Systematically Ignored:  For several decades, Canadian Lyme sufferers have been calling out, speaking out, crying out, literally begging the government for help and equitable access to appropriate testing, assessment and treatment.  Minister Philpott, what will it take for you and your government to incline your ear to our call for help and to start listening and taking effective and immediate action?    
 
Dismissiveness, Belittling and Denial:  Canadian patients are encountering dismissiveness, ridicule and shame when they try to consult the medical profession on Lyme disease, some are even sent denial letters by ID (Infectious Disease) specialists.  They are told to stop ‘trying to self-diagnose with Dr Google’ and to stop seeking the ‘disease du-jour’. 
 
Denied Disability Benefits:  Patients are being denied disability benefits because ‘chronic Lyme doesn’t exist.’
 
Financial Hardship:  Patients who seek proper diagnosis and treatment are forced to become medical refugees and many have incurred huge debt to pay for their medical care in the US and abroad.  This burden is compounded by loss of income.  Many patients rely on fundraisers and the kindness of their neighbors, families and communities to crowd-fund on their behalf to pay for the costs of out-of-country medical care.
 
Lyme Experts labelled as Quacks:  When we do get diagnosed with Lyme disease outside of Canada, we are told that the Lyme Literate physicians, naturopaths and other practitioners are quacks and profiteers.
 
Suicide:  Patients are being driven to despair and hopelessness, some choosing suicide as they cannot bear the suffering and neglect any longer.  Lyme related deaths are becoming all too common.
 
Fear and Silence: Many families affected by Lyme refuse to even talk, they are genuinely afraid that if they are vocal about the abuses which they have faced especially by departments of Infectious Disease, that they will be refused care or labelled as crazy or even more devastating having Munchausen’s by Proxy. 
 
Children and Families Losing Hope:  Many families suffer in silence and pay for treatment costs out of pocket, many are in huge debt, marriages are strained, children are losing hope as they cannot attend school,  their lives having been shattered by an illness which physicians systematically turn their back on. 
 
Exhaustion: Patients are exhausted as they continuously have to defend and ‘present their case’ on behalf of themselves and their children. Fear, uncertainty, disillusionment in our medical system prevail. 
 
Congenital Transmission:  Many parents believe that their children were transmitted Lyme disease through transplacental transfer. Congenital infection is a huge concern which has already been scientifically proven and published and yet seemingly ignored within our medical system.  https://caudwelllyme.com/2016/04/22/congenital-lyme-disease
 
Sexual Transmission: Lyme Sufferers are concerned that this infection can be transmitted sexually.  Recent research on this subject indicating sexual transmission is subject to intense ridicule and rejection. https://www.lymedisease.org/lyme-sexual-transmission-2/

Lyme Doesn’t Exist Here:  We are told over and over by those in medical professions that ‘Lyme Disease doesn’t exist here’, or ‘I don’t believe in Chronic Lyme Disease’ or ‘the tick wasn’t attached long enough so don’t worry’, or,  ‘your rash can’t be Lyme because we don’t have Lyme-infected ticks in our area, here put on this cream’, or ‘there are many people just like you, with symptoms just like yours, we just don’t know what it is, but it’s not Lyme.’  Our concerns, our suffering and our questions are countered with dismissiveness and we are offered no meaningful differential diagnosis. 
 
High costs to Canadian Healthcare:  Within Canada, patients are shuffled around from one specialist to the next and subject to costly laboratory and diagnostic imaging and tests to look for answers.  They are willing and ready to do whatever it takes to find answers to their complex, scary and debilitating symptoms.  This costs thousands upon thousands of tax-payer dollars. 
 
Labelled as Psychiatric:  When medical answers can’t seem to be found, it is suggested that patients be seen by a psychiatrist and take an anti-depressant, or practice meditative yoga.   Patients are often told that their symptoms are psycho-somatic or ‘all in their head’.  In reality, Lyme Disease often manifests with neurological and psychological symptoms including infectious encephalopathy, OCD, anxiety, neuro cognitive changes and memory loss.
 
Out of Country testing – patients Further Denied and Ridiculed:  When patients obtain positive Lyme testing outside of Canada, they are further ridiculed and shamed.  They are told to stop wasting their money and that these ‘outside’ tests are of ‘highly dubious value’ from ‘un-validated’, ‘for-profit’ labs.  They are told that the Canadian testing is gold-standard. 
 
Positive Canadian tests considered False Positive:  To make things even worse, when patients do have the good fortune of testing positive with the Canadian ELISA (first tier), they are often told that this is a false positive and that they don’t have Lyme.  It just doesn’t make sense!
 
Limited Treatment:  For the few who are diagnosed as having Lyme in Canada, they are given a month, perhaps an extension of another month or two of antibiotics. They are told up-front that their treatment will be limited and not necessarily based on treatment response.  For most, the Lyme diagnosis takes place months to years later after the Lyme bacteria has systematically invaded their body, causing chronic systemic infection, inflammation and dysfunction.  A month of antibiotics is totally insufficient to treating a systemic illness. Despite initial improvement, patients are often cut off antibiotics after and told that their infection has been adequately treated.   
 
Placebo Effect:  Many patients are told that their positive response to antibiotics is due to placebo effect. 
 
Antibiotic Resistance:   Long-term antibiotics are freely prescribed for dermatological conditions such as acne and rosacea.  In contrast, Lyme patients are often denied life-altering treatment based on the fear of antibiotic resistance.  Long term antibiotics are currently used to successfully treat tuberculosis, rheumatic heart disease and many other infectious illnesses.
 
Relapses:  Even when patients relapse after a short course of treatment and in many cases, symptoms worsen, they are told there is nothing more that can be done and doors are closed to further treatment.  They are told they have post-treatment Lyme syndrome or pain syndrome.   
 
Failure to identify Early Infection:  The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada. 

Denial of Chronic Lyme: Worst of all there is no mechanism to track the disease and its cost to society because the medical leadership deny the existence of chronic ongoing active infection despite the abundance of evidence based published peer-reviewed science.

Media Coverage Belittled:  In a recent article from the Canadian Journal of CME, Oct 2016 – an Infectious Disease doctor advised another doctor with these words. ‘There is great publicity in the mainstream media about Lyme and the reporting has generally been shoddy and sensationalistic’.  These repeated messages serve to denigrate and diminish the Lyme patients’ reality and, at the same time, to disseminate a sense of cynicism, suspicion and doubt amongst other health care professionals who read these opinions and take the comments of their peers seriously.  So even when mainstream media report on this tragedy, their credible reporting and questioning of the status quo is shot down!  It seems that those who stand and speak out about Lyme disease  become target practice.  
 
Denied access to Research Development and Design:  Certain medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our tax payer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place.  Poor data in equals poor data out.  It is a telling situation that CIHR stresses on one hand the importance of involving patients and their chosen experts at the earliest of stages yet we have been continually denied access to research direction and design relative to this disease.  After the fact, token review does not equate to collaboration.

Lyme is not a Religion:  Minister Philpott, Lyme Disease is not a religion or belief system.  It’s not something to believe or not believe in.  It exists, it is here, all across this country.  Its existence and persistence validated and reported in over 700 peer reviewed scientific journal articles.   Why would anybody want to be diagnosed and associated with a disease which is treated so unjustly? http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/

What does it take to be respected? When will we as patients be given the respect and credibility we deserve?  When will we as patients be invited, alongside Lyme-literate experts, scientists and researchers; to discuss, determine and direct our urgent need for appropriate diagnostics, treatment and research?  We insist that our medical leadership follow ethical and collaborative standards and that they stop making claims that are factually non-provable (ie. These patients are sick with something but it is not Lyme disease). 
 
WHAT WE NEED:
 
Full Collaboration:  Patient advocates and their experts from CanLyme (physicians, scientists, allied healthcare professionals and researchers) must be invited to the table to fully participate, discuss and determine the policies which will guide the Federal Lyme Framework.  We must be equal partners to develop and direct education, surveillance, diagnostics and treatment of Lyme in Canada.  We must be involved at the earliest stages and be fully engaged as trusted and credible partners throughout the process. 

ILADS Guidelines Instituted and Physician Education:  We need Canadian clinicians to receive education from physicians and scientists and researchers from the International Lyme and Associated Disease Society – ILADS.  We need our Federal Framework to include ILADS guidelines for treatment so that our physicians have direction and choice to provide us with the best possible care.  Patients also must be given choices and support in treatment modalities.

Physicians and Protected:  Medical regulatory colleges must get off the backs of doctors who are willing to diagnose and treat chronic Lyme disease and associated tick-transmitted diseases. Lyme disease is a clinical diagnosis, and must be treated accordingly. Since the majority of Canadian patients become chronically ill before they get diagnosed, long-term treatment is often required.

New Testing:  The two-tier Lyme disease system must be revisited and replaced with the Western blot as an initial screening test with full transparent reporting of banding patterns including band 31 and 34.  Other testing modalities such as EliSpot testing, tissue typing and DNA sequencing must be considered. We need the testing to cover the bio-diversity of Lyme strains which have clearly been identified.

Congenital Transmission, Sexual Transmission, Blood Supply Safety:  We need the reality of congenital transmission (from mother to child) addressed and studied.  It has already been identified and reported but for some reason, in Canada, not acknowledged.  We are concerned about sexual transmission and even blood supply safety.  All these issues have been raised within our provincial and federal regulatory bodies and governments and yet we fear that our concerns are falling on deaf ears.  There is credible, scientific, evidence based, peer-reviewed literature which backs up our concerns.

We need You to Address Real Needs and Make a Difference:  Minister Philpott, I am a concerned Canadian and I respectfully request that you take this letter and the Lyme Letters Canada Campaign seriously.  As was so eloquently written in the January 5th, 2016 CMAJ article by Roger Collier, you are passionate about the needs of the under-served and forgotten and have been raised on the value of serving others.  You chose the medical profession so that you could ‘come in contact with people, to address real needs, to make a real difference’.  You describe that ‘there will always be opposition’ and leading the Ministry of Health would be a ‘daunting task’ – but you have been chosen and appointed for such a time as this.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4732957/

Minister Philpott, you are rooted and grounded in integrity and this is what is needed most within this Lyme crisis.

We ask that you take our concerns seriously and also ask your own questions.  We ask that you speak out and advocate on behalf of Canadian Lyme sufferers.  We need our hope in the Canadian medical system restored, we need restored faith in our medical profession.  We want a made in Canada solution to the Lyme crisis. This may seem like a monumental and even overwhelming task, but nothing is impossible.  We believe that mountains can be moved and hope restored.
 
Sincerely,   Sue Faber, BScN