How the new impatient patient is disrupting medicine - Macleans.ca
 

How the new impatient patient is disrupting medicine

Patient activists have never been as vocal. But are they truly being heard?


 
Jennifer Kravis and Sue Faber prepare for their meeting with the Minister of Health in Ottawa to discuss Lyme Disease. (Photograph by Jessica Deeks)

Jennifer Kravis and Sue Faber prepare for their meeting with the Minister of Health in Ottawa to discuss Lyme Disease. (Photograph by Jessica Deeks)

In late August, Sue Faber and Jennifer Kravis hauled close to 150 pounds of documents and scientific research into a Health Canada office in Ottawa. The two women, co-founders of Lyme-patient advocacy group LymeHope, had been granted a 15-minute audience with then federal health minister, Dr. Jane Philpott, and Dr. Theresa Tam, head of the Public Health Agency of Canada. They’d lobbied hard for the face time and intended to make the most of it.

Faber, a former registered nurse who lives in Burlington, Ont., and Kravis, an Oakville, Ont.-based lawyer who’s not currently practicing, call themselves the “Lyme Moms,” a folksy moniker that belies their organizational and research skills. The two suitcases they rolled into the room contained months of work: a petition circulated online calling for urgent government action signed by more than 47,000 Canadians; 2,700 letters, organized by province, from people sharing their harrowing experiences with the bacterial infection spread by ticks; and binders of published research.

That Canada’s top health officials spared even 15 minutes to meet with civilian advocates reflects the current medical moment, one in which patient activism appears to be driving the medical status quo, with “patient-based medicine” and doctor-patient “shared decision making” the new buzzwords.

READ: The truth about Lyme disease

Examples of patient groups driving the agenda abound—from the push to legalize medical marijuana to the right to assisted suicide. It also underlines the federal government’s $4-million “Framework on Lyme Disease” introduced in the spring, mandated by Green Party leader Elizabeth May’s Bill C-442 which was passed unanimously in 2014. May, who calls Lyme “a national emergency” given rising incidence due to climate change, inaccurate testing and treatment protocols, credited patient advocates for the bill’s passage. Likewise, people with MS pressured the federal government to sponsor a $6-million clinical trial into treatment for a newly classified venous condition, dubbed  CCSVI, shown in an observational study and YouTube testimonials to benefit some people with MS, against recommendations of the Canadian Institutes for Health Research (CIHR), the MS Society of Canada and MS neurologists.

It’s a landscape in which the very word “patient” — derived from the Latin “patior,” to “to suffer, experience, or endure” — is an anachronism. In a recent video for NEJM Catalyst, “What if our care were designed by patients?” American radiologist Stephen Swensen suggests “patient” be replaced by “people,” as it’s more “humanizing.”

But that word doesn’t capture the new wave of patient advocates, represented by Kravis and Faber. With their access to medical research, medical professionals and social media mobilization, they’re more accurately “impatients.”

Closer examination of recent patient activism, however, reflects a more complex story—systemic failures, establishment backlash, and evidence the mandate to “listen” to patients doesn’t always mean they’re being heard. The medical establishment is quick to point out that the Internet can put users at risk. With its echo chambers, social media can abet “confirmation bias,” seeking information that reinforces one’s beliefs. Bad and false science can readily be spread, seen in the rise of the anti-vaccine movement and on Gwyneth Paltrow’s Goop.com.

But the Internet has also brought a more positive sense of connection between previously isolated people who share a diagnosis—as well as channels to exchange information and mobilize, which in turn has given patients a greater voice in decision-making. Elizabeth May, for instance, called for patients to have input into creation of the Lyme “action framework.” That didn’t happen. Recently, an Alberta government official came forward to say the “patient experience” surveys, intended to gauge patient satisfaction as well as areas needing improvement, aren’t being used. Such data is only valuable if it’s acted upon, Stafford Dean, chief analytics officer for Alberta Health Services, told HealthyDebate.ca in September. Currently it’s not, he says: “Bottom line, we’re not actively managing or trying to move these patient experience measures….It’s all passive improvement.”

READ: Medicine’s deadly gender gap

It’s a shifting landscape in which tensions run high and questions remain. How to base patient demands on “evidence-based” science? How will the changing role of patients affect doctors’ roles? Who decides healthcare spending? And, ultimately, who tells the story of disease?

Surges in patient activism, and the rise of patient rights, have historically mirrored societal shifts. The first patient-led societies, the National League of Blind People and the National Association for the Deaf and Dumb in the 1880s, occurred alongside the rise of the British labour movement; the civil rights’ and women’s movements of the ‘60s saw a concomitant recognition of patient rights; now, the current Internet-driven iteration is proving the most seismic yet.

Better Aids Care Demanded; Activists demanding improved health care and drug funding for AIDS patients demonstrate yesterday outside downtown health ministry offices. AIDS groups say they are fed up with a year of incaction from the provincial government. (Bernard Weil/Toronto Star/Getty Images)

Better Aids Care Demanded; Activists demanding improved health care and drug funding for AIDS patients demonstrate yesterday outside downtown health ministry offices. AIDS groups say they are fed up with a year of incaction from the provincial government. (Bernard Weil/Toronto Star/Getty Images)

HIV/AIDS activism in the ‘80s brought “patients” into the political/policy realm. These activists introduced the concept of a self-educated ‘disease constituency’ able to critique and challenge the medical establishment in its own language, Steven Epstein writes in Impure Science: AIDS, Activism and the Politics of Knowledge. The FDA altered drug efficacy criteria to fast track AIDS drugs to market as a result.

The arrival of ‘80s neoliberalism transformed patients into “stakeholders” with a right to sit “at the table”; they became de rigeur on research review panels, ethics and drug policy committees, health-policy conferences, and the like.

The right-to-die movement is tethered to the rise of patients’ rights, notes Sandra Martin, author of the 2016 book  A Good Death: Making the Most of Our Final Choices:  “People have always asked their doctors for help in dying. And doctors have complied, but out of compassion, not a sense the patient had a right to ask for help.” Martin draws an analogy with “consumer advocacy,” though cautions the comparison is imperfect. “These are rights we’re entitled to,” she says. “Patients want to be able to say ‘I’ve had enough. I don’t want another chemo round’.”

The desire for personal testimony, in memoir and later blogs, has factored too. Suffering commands attention and compassion, even credibility, witnessed in how a letter written by 84-year-old Gillian Bennett, diagnosed with dementia who died of suicide in 2014, rekindled the assisted suicide debate. “People want to get their message out as a legacy,” says Martin.

In that regard, the Internet and social media have delivered tools to detonate what Canadian psychiatrist Norman Doidge calls “the military metaphor of medicine” — one in which the patient is “merely the passive battleground where the two antagonists, the doctor and the disease, fight it out.”

In 1998, PubMed.gov went online, giving the public direct access to biomedical research. People once homebound and invisible were able to form online communities — to share experiences, rate their doctors, even discuss participating in clinical trials, formerly a taboo topic. Chatrooms and Facebook pages became places to mobilize, to circulate petitions, and to exchange research that ran contrary to medical dogma.

That was the story of CCSVI advocacy which was inspired by research conducted by Paolo Zamboni, an Italian vascular specialist working outside of the multiple sclerosis establishment. Zamboni identified patterns of extracranial venous blockages in people with MS and found, in a small observational study, that venous angioplasty reduced and even eliminated MS symptoms. Joan Beal, a Los Angeles-based opera singer who had been investigating vascular links to MS after her husband, music composer Jeff Beal, was diagnosed with the condition in 2007 forwarded Zamboni’s study to doctors at Stanford University. Michael Dake, an interventional radiologist, saw its merit and performed the treatment on Jeff Beal. His positive post-treatment results, shared online, spurred people living with the incurable, degenerative disease to seek the procedure offshore, contrary to their neurologist’s advice. Results, shared on social media, indicated the procedure worked for some, but not for others. Media coverage put the spotlight on the conflict, one that saw fault lines grow between people with MS, MS neurologists and MS societies who rejected Zamboni’s hypothesis. The ensuing fallout saw some MS patients sever relationships with their doctors to form their own groups that held conferences to discuss new scientific research that wasn’t receiving mainstream attention. Joan Beal would go on to become a leading proponent of a new vanguard of emerging scientific research unearthing links between the vascular system and neurodegenerative diseases.

The concept of “patient-based” medicine should be a redundancy. In the late 19th century, Sir William Osler, a Canadian physician and founding professor at Johns Hopkins Hospital, famously advised students to “Listen to your patient, he is telling you the diagnosis.”

More than a century later, in 2011, the CIHR initiated a strategy for “patient-oriented research” (SPOR) to make patients “active partners” based on the recognition “patient-identified” priorities are seen to “improve patient outcomes.” In August, Dr. Laurent Marcoux, incoming president of the Canadian Medical Association, told doctors they must serve patients “first and foremost,” an instruction that should not be necessary: “We have to put the interests and the needs of our patients as a whole before our own,” he said.

It’s an instruction that reflects deeper health care malaise. SPOR’s creation, the CIHR website notes, was in response to the finding that 50 per cent of patients don’t receive treatments of “proven effectiveness” and up to 25 per cent get care that isn’t necessary or is potentially harmful. Marcoux pointed out that people are receiving needless tests under the false belief early diagnosis is beneficial: “We think it’s better, but it’s not,” he said. Likewise, in his video calling for a more emphatic doctor-patient relationship, Stephen Swensen says that could result in more patients taking their meds; the lack of trust in doctors has led to a third of prescriptions handed out by U.S. doctors not being filled, he says.

The fault lines are laid out by Dr. Joel Lexchin’s in his new book Doctors in Denial: Why Big Pharma and the Canadian Medical Profession Are Too Close for Comfort. The physician and professor emeritus at the School of Health Policy and Management at York University, outlines a system in crisis — healthcare spending under pressure, a flat CIHR budget, and increasing industry-funded research and influence. The interests of industry, directed to maximize profit, are diametrically opposite to those of public health and patient care, Lexchin writes.

There’s no more damning sign of crisis than the rise of a “patient advocate” industry, in which private advocates are paid to help patients and their families navigate Canada’s labyrinthine healthcare system.

The newfound influence of patient-based groups is also reflected in the fact drug companies are targeting them much as they did physicians and medical groups — to increase their influence with governments and to market products. It’s a phenomenon charted in the new book, Advocacy Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement, by Sharon Batt, a former patient activist who teaches in the Department of Bioethics at Dalhousie University. Batt describes the uneasy alliance between industry and patient groups, outlining how patients’ best interests are compromised.

No disease is historically more indebted to patient activism — nor as riven by patient-doctor friction — than Lyme. It was research by two intreprid mothers, Polly Murray and Judy Mensch of Old Lyme, Conn., not by scientists or doctors, that put Lyme on the map in 1975. Murray began investigating when her four sons and husband experienced mysterious joint pain, headaches, fatigue and neurological symptoms. The women created a data registry of 250 children initially diagnosed with “early onset juvenile arthritis” that was later reviewed by the CDC. Borrelia burgdorferi, the spirochete that causes Lyme, was identified in 1982.

The timeline of Lyme advocacy dovetails that of HIV/AIDS, says Holly Ahern, associate professor of microbiology at SUNY Adirondack, N.Y. Ahern began researching Lyme after her daughter fell sick in 2010 as a college student. The year it took to receive a diagnosis as “a nightmare,” Ahern says, with doctors suggesting symptoms that included joint pain, crushing fatigue and neurological symptoms were psychosomatic: “One said it was because she was ‘a girl under pressure at school’.”

The experience alerted Ahern to longstanding conflict over Lyme between two factions: the Infectious Diseases Society of America (IDSA) which sets guidelines followed by the CDC and most Canadian practioners, and the International Lyme and Associated Diseases Society (ILADS). The IDSA maintains that Lyme is difficult to catch, usually identifable with a bull’s eye rash, and easily cured with a few weeks of antibiotics; persistent symptoms are known as “post-treatment Lyme syndrome; it warns long-term antibiotic use is dangerous. ILADS maintains Lyme can be chronic, which requires long-term antibiotics; a bull’s eye rash is usually not present; the complex bacteria can form biofilms and enter a dormant state, evading antibiotics; other tick-borne coinfections are often present and need to be treated.

Ahern’s research revealed a medical crisis, she says, adding that the ISDA’s approach to Lyme is grounded in “anchor bias” in which early published studies by eminent researchers remain the most influential.

In 2012, she co-founded Lyme Action Network, an advocacy group. New York state has passed a series of bills to deal with the mounting threat of Lyme, she notes, with a Congressional group formed to reevaluate the science. Patients are expected to be at the table.

Not all doctors want to see them there. Washington, D.C.-based rheumatologist Arthur Weinstein, who sat on panels that approved the original Lyme guidelines, gave a presentation at a University of Toronto medical school reunion last May, titled “Lyme Disease: the Facts and the Fiction.” One slide pinpointing areas of activism in the U.S. was disparagingly titled “Lyme Fuss;” another, which referred to the Kravis/Fabers petition, “Be Concerned About Public Education and Government Affairs petition.”

Weinstein expresses concern about “naïve politicians” wading into medical issues under the influence of such pressure. In an email to Maclean’s, he said, “My experience has been that they are swayed by the emotional pleas of the patients and advocacy groups rather than scientific truth.”

Certainly successful advocacy can skew resources irrationally. A 2011 study by Charity Intelligence Canada identified that 47 percent of the cancer charity funding in Canada goes to breast cancer, 38 percent to children’s cancer, and 8 percent to prostate cancer. That leaves the remaining 7 percent for all other types of cancer, including some of the deadliest and most prevalent, such as lung, liver, and colorectal.

Forty years after the first “Lyme Moms,”  Kravis and Faber went to Ottawa to lobby for Lyme patients. The two women refer to themselves as “accidental activists,” spurred by their Kafka-esque experiences with Lyme. In 2016, Faber and one of her daughters tested positive for a European strain of Lyme in Ontario (her two other girls are also afflicted); Kravis suffered five years of debilitating symptoms that forced her to leave an executive position at a bank; she was diagnosed in the U.S.

Both women sought long-term antibiotic treatment in Canada, but ended up travelling to the U.S. After two years of intensive antibiotics, Kravis says, her stamina and quality of life improved. Like Faber, she never saw a rash. Lingering symptoms remain, she says, including severe muscle and joint pain, insomnia and fatigue. It wasn’t a cure: “I missed the early window.”

Both women also express frustration that the government didn’t consult with Lyme patients when creating the Lyme “framework,” despite a three-day government-sponsored conference in May, 2016; 360 of the 581 attendees online and in person were patients, caregivers or members of patient groups.

Weeks later, HealthyDebate.ca, the sponsors of which include the CIHR, ran an opinion piece arguing that Lyme patients should not be equal partners in policymaking. The recommendations made by patients at the conference were based on “controversial and unproven claims,” authors Melanie McPhail and Jacob Shelley argued, warning U.S. advocates convinced legislators to allow long-term antibiotic use “despite a lack of credible evidence.”

Shelley, a professor at the Faculty of Law & School of Health Studies at Western University, found the conference frustrating, he told Maclean’s:  “Experience of disease was conflated with expertise,” he said. “During patient testimonials, patient after patient got up to say how they’d been ignored by the system, then went on to talk about the 40 or 50 tests they had done and the 30 specialists they’d seen. I say, ‘You’re not being ignored, you’re just not getting the results you want’.”

Philpott acknowledged patient frustration when the framework was announced: “Canada’s medical system has failed Lyme disease patients,” she said.

Kravis and Faber delivered stories from thousands of those patients: adults and children with bull’s-eye rashes being denied treatment; GPs refusing to test because they don’t know what to do about tick bites; anger about new Health Canada/CBSA policy to seize Lyme patients’ prescription drugs at the borders.

They brought with them documentation of how children with possible Lyme are being classified as psychiatric cases and admitted to psych wards, and how parents are being threatened with Children’s Aid investigations for treating kids out of country. They also connected dots, suggesting that undiagnosed Lyme might explain high incidence of mental health, arthritic and chronic illnesses in Indigenous communities which tend to be hyperendemic for Lyme and coinfections.

They left the 15-minute meeting optimistic. Minister Philpott was receptive, they say. They left behind four binders of research, including a 1988  Canadian Medical Association Journal  study on transplancental transmission that defies the prevailing view that Lyme cannot be transmitted in utero (the government is planning a literature review into the topic).

Kravis returned to Ottawa in mid-September for a Lyme patient roundtable. They asked that clinicians and scientists with expertise treating Lyme be present but were turned down.

Societies representing patients are scrambling to adapt to the rise in patient advocacy. In 2012, the year the CCSVI clinical trial was announced, the MS Society of Canada invested almost $280,000 of its research money to study CCSVI activism, which upended its research agenda. CCSVI has become both a warning and a cautionary tale of the threat of patient advocacy. Preliminary results from the clinical trial were announced last March. It found treatment for CCSVI “inefficient” for MS. (The complete study has yet to be published.)  The CCSVI file should be closed, neurologist Anthony Traboulsee, who led the trial, told CTV News: “It’s done.”

Last month, the study into CCSVI commissioned by the MS Society was published. “CCSVI is a harbinger of insurrection to come,” says the study’s author Michelle Driedger, a professor and Canada Research Chair in Environment and Health Risk Communication, at the University of Manitoba. “It’s going to happen again because we have so many diseases with unmet therapeutic needs.”

The MS Society initially came across “as not being sufficiently responsive to donors or the population group they are intended to serve,” Driedger told Maclean’s. They’ve changed strategy: “There has been more engagement of MS patients — meetings across country to find out what research they’re most interested in.” One offshoot has been a study into nutrition and MS.

Caution is required in a publicly funded system, says Dreidger: “Just because a patient might ‘want’ something, doesn’t mean they should have access,” she says, noting that, for the most part, health-care administrators aim to ensure insured services are supported by evidence.

The public-health researcher points out that having “a seat at the table” doesn’t guarantee participation, or assurances that patient/public experiences will be addressed.” She calls for “a mechanism to engage broad groups of people in more than a tokenistic fashion.”

Most physicians have a hard time trying to implement “shared-decision making” in practice, Dreidger notes. She sees the need to get past “health-system gate-keeping” to ensure that something inherently uncertain isn’t dismissed without consideration to whether or not it could be as plausible an explanation as anything else. This is particularly true of Lyme, which is often misdiagnosed for such incurable conditions as MS, ALS and Alzheimer’s. Last year, 80-year-old singer and actor Kris Kristofferson, initially diagnosed with Alzheimer’s, was tested to find out he had Lyme.

As the patient role changes, so must that of doctor, a word from the Latin “doceo” — “to show, teach, cause to know.” So claimed a 2016 New England Journal of Medicine op-ed, calling for doctors to embrace “medical uncertainty,” the reality that they don’t always know the answer. It’s a concept that runs contrary to the culture of medicine, for both doctors and patients, the authors write: “In medicine today, uncertainty is generally suppressed and ignored, consciously and subconsciously” as it “instills a sense of vulnerability in us — a sense of fear about what lies ahead.”

In the future, “value as physicians will lie in the ‘gray-scale space,’ where we will have to support patients who are living with uncertainty — work that is essential to strong and meaningful doctor–patient relationships.” While doctors grapple with “uncertainty,” patient advocates are funding research themselves. The California-based Bonnie J. Addario Lung Cancer Foundation, a “patient-founded, patient-focused, and patient-driven” organization, recently released a report celebrating the fact patients sharing a specific genetic mutation are connecting online to form groups to fundraise and advance research for their specific cancer subtypes. Laura Greco, a stage IV non-small cell lung cancer patient, a member of “ALK Positive” which raised $120,000, expressed frustration that the research status quo “is not enough to save our lives.” Ross Cambridge, director of thoracic oncology at the University of Colorado spoke of a new patient sensibility: “There’s an element of not just offering yourself up [for research] and having someone then treat you as a piece of meat.”

These collectives also mirror the changing image of cancer — into smaller and smaller molecular subgroups — that drives the new push for genome-based therapeudics. Most of the foundation’s sponsors are major pharmaceuticals.

In Canada, the CIHR is about to put out a call for research submissions on Lyme, with patients being invited to the peer review panel. Meanwhile, the G. Magnotta Foundation for Vector-Borne Diseases donated $1.4 million to a lab at the University of Guelph this June which will research how to improve Lyme testing and treatments. The non-profit was established in 2012 by Rossana Magnotta, CEO of Magnotta Winery, in honour her husband, Gabe, who died in 2009 of complications from Lyme; he’d been ill for close to seven years, four seeking diagnosis as his health deteriorated. He finished aggressive antibiotic treatment out of country in August 2009 and could walk over a kilometre a day. In December, he died of a heart attack. He was 59. “My goal is to solve this problem through evidence-based research,” Magnotta told Maclean’s. Current testing failed her husband and is failing thousands, she says: “Canada should be leading this research but isn’t. They did work on the tick and the bacteria, and surveillance but no money was invested in human tissue research.”

In other words, no money was earmarked for how the infection affects human beings, those people formerly known as patients.

Clarification: This post has been updated to include more context regarding CCSVI advocacy.


 

How the new impatient patient is disrupting medicine

  1. Canadian medicine NEEDS a shake-up. It’s slow and assembly line.
    If I could buy private medical care, I would.

    • Most sensible thing you’ve ever said. We need that option too. It’s foolish to force everyone to depend on the same system, with no back-up in the private sector, no competition, and no options. The Supreme Court nearly overturned the Canada Health Act in 2005 on a Charter violation, but one judge decided to abstain to avoid making such a disruptive ruling, and it ended in a 4-4 split vote. We can have a solid public system without forcing every single last person to depend on it, and without banning other options.

      • LOL I was PC for 30 years, but I’ll never be SoCon.

      • You have many other options for private care. If it is so important to you then go to the US for treatment – they have some of the best hospitals in the world. Go abroad for treatment. There are many options so don’t pretend that you can’t have private care if you want it.

  2. Thank you Anne Kingston for highlighting the important issues faced by Lyme sufferers across Canada. LymeHope website is at http://www.lymehope.ca

  3. It is a sad thing that Lyme patients(people) have to fight so hard for help when they are so so sick. A sad thing that patients have to fight to be heard, recognized, tested, treated, while being made to feel they are fabricating their disease. A sad thing that thousands of dollars have to be spent travelling to another country for help. Shame shame, Canada. Believe me, nobody would ever choose this.

  4. I think the author should have stuck to the topic of Lyme Disease because the article was all over the map and difficult to follow. The article was poorly written and poorly edited. You can do better Macleans!

    • I disagree, KAREN366, I thought it was riveting, I couldn’t stop reading.
      All those facts about other groups and diseases solidify and prove the need for more patient rights and advocacy for Lyme. They bear it!
      If the doctors are feeling uneasy about Lyme, they ought to just imagine the great uneasiness for people who are suffering!
      Things are changing, and the doctors need to accept that they don’t know everything yet, and listen to the people, who may very well have an answer, or an idea.

  5. Arthur Weinstein was in charge of “data safety monitoring” for one of the OspA trials. Turns out the Western Blots were unreadable so neither LYMErix nor ImmuLyme were actually proven to prevent Lyme:
    “The manufacturer of the only currently FDA-approved (and released) recombinant OspA Lyme disease vaccine has suggested that vaccination does not interfere with serological evaluation of Lyme disease in vaccine recipients—a statement that is not supported by the data presented here.”
    https://academic.oup.com/cid/article-lookup/doi/10.1086/313920

    It is no wonder is is being a loud mouth here, disparaging victims. He does not want to go to jail. See more about the crime here truthcures.org/charge-sheets and actionlyme.org
    — The Whistleblower

  6. Excellent article; however, I am somewhat concerned with parallels draw with the MS liberation treatment. Quality Lyme disease testing and and treatment is available in the US and thousands of Canadians are being successfully treated including Avril Lavigne. That diagnosis and treatment is denied to those who don’t have deep pockets prolonging the torture of an undiagnosed mystery illness and burdening the heath care with countless trips to ER’s and specialists. I myself had 3 MRIs, 2 CT scans, 2 EMGs, and 1 spinal tap all of which failed to produce a diagnosis at huge cost to the health care system. A $1000 test in the US confirmed my diagnosis. After 8 years it was too late for effective treatment. Shame on the provincial medical colleges for having their heads buried in the sand!

    • “somewhat concerned with parallels draw with the MS liberation treatment?” This is how I learned about Lyme – my sister with MS (25 years) had CCSVI (blocked veins in neck) – while at a presentation for MS with CCSVI in Barrie Ontario 2012 – I asked the question to the Interventional Radiologist that had performed thousands of what is termed “liberation treatment” when in fact it should be termed as Venoplasty (exact same procedure performed 100’s of times daily across Canada for dialysis patients but cannot have it done if you have MS) – since I had heard more than just MS patients have this procedure done – I asked the question – what is the biggest patient population you are treating for CCSVI? – I was told Lyme patients – as a matter of fact we encourage every patient with an MS diagnosis who comes for the procedure to be tested for lyme disease when they get home – so my research began on LYME – look at Yolanda Foster (with lyme) – posted on her instagram August 23, 2016 – TVAM procedure (aka CCSVI) – “In it to win it” and since then has NEVER posted anything on her Instagram account about being so sick – where previously she had posted a lot about how sick she was with LYME.

  7. Excellent article; however, I am somewhat concerned with parallels draw with the MS liberation treatment. Quality Lyme disease testing and and treatment is available in the US and thousands of Canadians are being successfully treated including Avril Lavigne. That diagnosis and treatment is denied to those who don’t have deep pockets prolonging the torture of an undiagnosed mystery illness and burdening the heath care with countless trips to ER’s and specialists. I myself had 3 MRIs, 2 CT scans, 2 EMGs, and 1 spinal tap all of which failed to produce a diagnosis at huge cost to the health care system. A $1000 test in the US confirmed my diagnosis. After 8 years it was too late for effective treatment. Shame on the provincial medical colleges for having their heads buried in the sand!

  8. Kingston’s article is quite balanced. We do need to rely on evidence to guide our practice, but patient experiences can also inform practice as well as policy. The problem comes when patient experiences are used to generalize to a population as a whole. Double-blind random controlled studies can guard against this. Officials need to pay attention to the quality of the research available and act on its conclusions. When patient activists demand, based on the experience of their suffering, high-quality research studies that will lead to policy changes, they should be listened to.

  9. “lack of trust in doctors has led to a third of prescriptions handed out by U.S. doctors not being filled” – yet another example of opinion being aped by the press as somehow ‘evidence based’, yet they’re also all over stories of patients who can’t afford prescribed medications. It’s pretty common for patients to ignore doctor’s advice or to only partially follow it. Journalists commonly jump the gun on studies and research, first not even knowing the difference, ignoring the basic principle of science reproducibility: scientific theory is a preponderance of evidence consequently only consistent results from multiple independent researchers can be considered meaningful. Unfortunately, this misconception is somewhat promoted by targeted research groups that, in order to recruit funding, create the impression that a single stream of research is sufficient; worse, this is also an aspiration of commercial enterprises and academic institutions keen to exploit intellectual property which, by definition, must be produced in isolation. In this article we also see allusions to silver bullet theories of therapy when in reality many are partially and/or selectively effective. Also, microscopic focus produces misleading results: in reality there are thousands of conditions, variable symptomology for many of them, overlapping symptomologies, etc as well as diversity in accepted treatment for various conditions; in short, diagnosis is not as simple, deterministic or practically easy as some make out. Considering infectious disease alone, routine screening for the myriad of possible pathogens is impractical – balance that against the prevailing meme that there is too much / unnecessary testing being done. The fundamental fallacy that constantly intrudes into such discussions is that there is always a simple solution to complex problems.

  10. Thank you Maclean’s for this article highlighting patient driven advocacy – our health system failed our daughter miserably when she became very ill in 2014. If it were not for our tenacity as parents in searching for answers I do not know where we would be – I am thankful we found the resources both financial and expert to get our daughter the help she needed – but this needs to change for all Canadians to get proper diagnosis and access to treatment. Our daughter who had been an honour student and varsity swimmer grew sicker and sicker, became confined to a wheelchair, developed speech articulation problems, facial palsy, and her family doctor just told her to set her alarm a bit earlier and go back to school – because the ABC’s of her Ontario bloodwork were ‘normal” so she was “fine”. Every month we missed the diagnosis she grew sicker and sicker – and physicians would only view her through a mental health lens. Lyme Disease was the culprit – 14 months into treatment she is walking again with the assistance of a walker, reading again, improving daily . The inhumane the way she was treated by doctors and specialists who were not Lyme literate was destructive to her health and to our entire family. We need to change this so other families do not have to suffer this hardship. We have had to spend thousands of dollars of wheelchairs, ramps, therapies, out of country treatment – I am not complaining because we would do anything for the health of our children, but this has to change so that all Canadians have access to proper diagnosis and affordable treatment. Hoping for change for all Canadians – LYMEHOPE

  11. Thank you Anne Kingston for bringing awareness of the lack of attention that Lyme sufferers today need from our healthcare system and our government. If advocacy garners those who can make a difference to take notice, then Canadians across this country have advocated and made sure they have been heard. Now the appropriate action is what is needed to address their concerns.

  12. I grew up in a small town in southern MB. I was the shy but adventurous girl who rode horses in 4-H, biked into town, cut grass, and lived in mosquito bites. Sometimes I would find this strange bug stuck in my skin, too. By the time I found them, they were already white. Ugly things. I didn’t know how ugly they REALLY were until I had kids of my own.

    In Sept 2014, my husband and I were over the moon with the birth of our second child. It should have been one of the happiest times of our lives. But, it soon became a living nightmare. Excruciating upper back and neck pain became my new normal. No medical therapies helped. Insomnia, fatigue, anxiety. Vibrating sensations in my abdomen, burning fingers, bone pain, pressure headaches, air hunger. But that back pain… Something had to be very wrong. Countless trips to my GP, specialists, MRIs, blood tests, ER visits. No answers, no relief. I was given very addictive pain medicine, but not offered any answers to what was causing my debilitating symptoms. At times I was completely ignored and laughed at by doctors. When my back pain became too much (which was quite often), I had suicidal thoughts. Those were not taken seriously either. All of this in the midst of raising one toddler and a baby with very little help while hubby was at work. I was going down, fast.

    One day, a friend told me that my symptoms sounded like a friend of hers. This friend had Lyme Disease. I put it in the back of my mind for a while… and then I looked it up. The flood gates officially opened.

    In May 2016, I became a part of an online Lyme support group. It was there that I learned our Canadian Lyme testing misses up to 70% of cases. I realized I had to spend thousands to get properly tested by an out of country lab. A couple of weeks later, I finally had my answer. I have chronic, late stage Lyme Disease. Relief! No. In order to get proper treatment, I would have to go out of province. My own GP wouldn’t recognize my positive test results. He referred me to Infectious disease for a second opinion, but as most people with Lyme are, I was denied an appt. Like so many others, I would have to seek treatment elsewhere. We had set up a go fund me to help with the testing costs, and now I’d need more help to get to BC to see a Lyme specialist. I finally felt a sense of hope.

    It has now been over a year of countless combinations of antibiotics and herbal therapies. There IS some progress, but it is slow and very expensive. Our Canadian health insurance does not cover Lyme treatment and specialist appts. Our government doesn’t recognize my disability. One that has made my husband not only work a full time job, but come home after it to care for 3 instead of 2.

    The only choice I have is to keep trying to feel better. My kids are what keep me going, even though they make this process more difficult as I don’t have any real time to focus on resting and healing. It could be years before I feel any better, or it might never happen at all. If me or my parents knew back in the 90s what I know now, I wouldn’t be sick today.

    Southern MB is a tick hot spot, and this is going to be a record year. Please do regular tick checks on yourself and your kids. I would urge everyone to treat the bite. Both deer ticks and dog ticks can transmit infections. Prophylactic antibiotics right after the bite can save you from years of antibiotics and suffering later on. There doesn’t need to be a rash. The tick doesn’t have to be attached for any specific length of time.

  13. Thanks for covering Sue and Jennifer story. The Lyme community is lucky to have them as advocates. My husband was bit by a tick back in 1982 near Kenora. We knew nothing about Lyme but shortly thereafter he started getting symptoms. Since his GP could offer no solutions he ended up at a naturopath. For the most part sticking to a strict diet helped him feel better but he had lots of ups and downs. Then at 55 his health crashed and he retired because he had lost his memory and cognitive function. His brother mentioned Lyme disease and we said he had been tested. His brother said I read the test is not accurate. I started researching the symptoms and he had many of them. I read Anne Kingston’s first story about Lyme and promptly called Dr. Mcshane in Plattsburgh NY. Treatment had a positive affect on his health and he is now 80 percent better. I worry that my children have been affected. My 34 year old son heart stopped beating at work last summer. He spent two days in a coma and a full thirteen days at KGH and they found no reason for his heart to stop. My daughter also has some symptoms. They can not afford to pay for treatment in the states. It’s frustrating to hear about people getting hit and getting two pills.

  14. I truly hope something changes in our healthcare system as lives depend on it. Living with chronic Lyme disease I was sent to over six specialists who all denied I had Lyme until I found a Naturopath who listened to me and put the puzzle pieces together. There is a lot of good science behind chronic Lyme but it is a constant uphill battle getting establishments and our own GPs to listen or go out on a limb to learn something new about a disease that is so complex. My GP would rather sit with me for 5 minutes and then send me off to specialist after specialist without ever getting to the root of the problem or taking any ownership of my condition. I’m so thankful I finally found my answer despite the difficult journey to health and healing I face everyday. You can read my story and others at http://www.itslyme.com. I hope by sharing these stories others will seek proper answers and treatment sooner.

  15. PHAC officials invited written responses to the Draft Report on the Federal Framework on Lyme disease. The Draft Report was a 180 degree turn from the Conference Summary Report which should have become the final report. Over 400 responses were received and each reply stated “your response will be carefully considered”. Officials must have rejected all of them in their final report which was completed with no transparency. Medicine is a self-governing profession and doctor’s usually take their lead from scientists. Frustrated main stream scientists and researchers are becoming involved because their input is being ignored and there has been no progress in 30 years.
    This is dogma and patients face institutionalized denial, discrimination and neglect. All decisions are made behind closed doors and the epidemic has grown by over 1,000%. There is a very narrow definition of Lyme disease favoured by the CDC/ IDSA/ AMMI and the insurance industry and a broad definition favoured by scientists and researchers. We have pointed out that in evidence based medicine you must accept all the evidence, not just cherry pick the bits you approve of while rejecting everything else. Canadians were hoping for a made-in Canada policy on Lyme and are fed-up with the U.S. for-profit insurance companies dictating our management of tick-borne diseases.

  16. There has always been politics in medicine, with the internet however now we can highlight the fact that our health is nothing but a political game and what is being portrayed as the “truth” does not actually hold up to the research, facts and evidence. The Lyme and co infection denial issue is worldwide not just in Canada and worldwide patient advocates are turning the tables slowly, people are starting to acknowledging this disease, patients are starting to inform and educate doctors and one by one as we stand together with the research and evidence. Doctors are slowly starting to think for themselves and speak up and take a stance. “The goal of education is the advancement of knowledge and the dissemination of truth. John F. Kennedy
    http://www.ilads.org/ilads_news/2017/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/

  17. This is an excellent article and I was really interested to see the number of conditions – from the marginalized, like Lyme, to the mainstream, like some types of cancer – where Canadians are not getting anything like state-of-the-art treatment and support. Please add to that list the more one million (that’s more than one million) Canadians who have been diagnosed with environmental and multiple chemical sensitivities, myalgic encephalomyelitis (sometimes called chronic fatigue syndrome) and fibromyalgia. (see http://recognitioninclusionandequity.org/ to learn more). These patients are extremely sick, very poor and stigmatized on the basis of a long standing erroneous belief their ailments are psychological. The chemical sensitivity patients have been trying for 30 years to get health system response. So the real question for Canadians is this: why is our medicine so far behind and so resistant to change, and what measures in mandatory education, treatment standards, professional incentives and penalties do we need to turn this situation around? Only the affluent and the well-enough-to-travel can seek care in the US and Europe, so we need good prevention and care here. Answering that question means fundamentally changing the behaviors of ministers and ministries of health, who control the all-important purse strings, as well as physician’s education, colleges and associations. Varda Burstyn, Peterborough ON

  18. Thank you for this article. Awareness is so important for moving forward and hopefully people suffering can finally get the help they need.

    We are a family of six living with lyme disease, and when I say living, it is more like surviving hell on earth. My own lyme disease symptoms started when I was 10 years old (or at least when things drastically changed for me) I had a normal childhood, no big dark secrets or trauma’s (like psychologists and psychiatrists tried to find later in life).

    I had always had lot of unexplained fevers, and got sick with anything that came around. At 10 years old I started having a hard time dealing with irrational emotions, and brain fog, I couldn’t remember things that I knew and I had a hard time reading and retaining information. I felt stupid, I couldn’t learn like the rest of the kids. I was often tired but fought to keep up with everyone else. Figuring it was normal to feel tired often. I started having joint and muscle pain, and my back hurt constantly. Through teenage years I saw so many doctors and specialists to figure out what was wrong with my back… like so many stories, when they couldn’t find anything I was referred to a psychiatrist and eventually told “it was all in my head” and prescribed meds. Over the years I tried every SSRI out there, and none of them helped. Then I was told I was just looking for attention. When I had insomnia to the degree where my record was 5 days without sleeping, I went to my GP and she told me “contrary to what people think, we don’t need sleep we just need rest” WHAT???? I sat there with tears running down my face, saying I NEED sleep. She wrote me another prescription, and those magic pills everyone else seems to fall asleep on, just made me incredibly drowsy

    FFWD to having 2 kids, who also had multiple fevers, ear infections, and other health issues. Our son was just turning 6, he had been sick with multiple 105 fevers (not at all uncommon in our house) and rashes all over his body. Then he started having episodes of losing time. A couple that were quite dangerous, we were snow skiing, and he just started headed right for a tree, I was yelling for him to turn, or stop but he just kept going picking up speed. I started skiing as fast as I could and tried to cut him off, wiping us both out, he had no clue what was going on. Then in grade one he left school in what we know now was a seizure. I opened the door to this little boy scared and crying, he had no idea how he got home. That year he was diagnosed with epilepsy. Which never felt right with me. Over 6 years, I had to repeat my story at almost every appointment and to countless doctors, I would always say, it started with those rashes and fevers. But I was dismissed and another medication would be prescribed and tried.

    In grade 5 he started rapidly declining, cognitively. He was losing memories, information, and was sick all the time. Specialists had no answers. That was when we looked for alternative medicine to save our son, and where we finally got the answers to all our ailments. He HAD Lyme disease, Bartonella, RMSF, Babesia, and more. I was baffled, and I said where would he have got this? She said hard to say, but maybe from you. From ME????? But how????? This was the beginning of our LYME HELL! But it explained so much, it explained my medical history, from ruptured discs, repeated dislocating knees, the joint and muscle pain, the brain fog etc. It explained my daughter complaining of stomach pain since she was two, that we had no answers, and were told kids get stomach pain, and sometimes we never find out why. They either learn to live with it or it goes away. AGAIN WHAT????

    It explains our twins and their sleep issues, OCD, hyperactivity, emotional outbursts, fatigue, stomach pains, joint and muscle pains, headaches… and again MANY more symptoms. Finally, we have answers and can get help!!

    WRONG!!!!!!!!!! I was warned early on about the L – word and not to mention it to doctors. But I thought, how could that be in this day in age, and in CANADA??!! Well we learned fast, and sometimes it slips out even now, when we are in an emergency situation, I feel doctors need to know the whole picture. My son was screaming in pain from chest/heart pain (and he’s a tough kid!) my husband accidently said the word, so when the doctor came to see him, he said we don’t need to run any tests, he listened very quickly to his chest (had to make it look like he did something I guess???) and said “yup you guys can go, he looks good, want a lollipop?” WHAT???!!! The bizarre and in-humane way patients are treated that mention lyme is disgraceful! WE are already living something they could never possibly imagine unless you are going through it, and the abuse we have to take on top is absolutely uncalled for.

    Before writing a novel, I’ll cut it short, We have all since been diagnosed with lyme disease and the same co-infections as our son. All CONGENITAL. That’s right I unknowingly passed this hell on to all four of my kids. This description here, doesn’t even start to describe the hell we have and continue to go through. We have all declined in health, and desperately need medical care. But have spent over 50k in the last 2 years alone. We have nothing left to continue to save ourselves. When people think oh Lyme… not a big deal, at least it’s not cancer or something. I am here to say it would be better if it was, because we would get help! I have had it so long it is in my brain, liver, kidneys, heart, and there is likely damage that will be life long. Our story’s end can probably be imagined if this disease doesn’t not get recognized. The disease has crossed the blood brain barrier in all of us, it is scary and it is slowly sucking the life out of us. LYME needs to be acknowledged and it needs to be now. Our Health system at the top knows this, but are still letting people suffer…. WHY? And why are we letting them get away with it??

  19. There is evidence-based science to support Lyme disease. There is testing available in the world that is more accurate than the flawed testing used in Canada. There are more effective treatment guidelines than the ones being used by Canadian Doctors. Canadians are beginning to become aware of the dangers of ticks and how to recognize the symptoms and are arriving in droves to doctors’ offices. Many of the doctors are not treating effectively or even recognizing the symptoms. What good is educating the public, if the doctors and nurses themselves are not being educated on the disease? Canada needs to improve testing and treatment for people with Early (acute) Lyme disease. Otherwise, the 1000s of stories collected by the Lyme Moms, will become the stories of so many more. Canada cannot continue to ignore Lyme Disease and those advocating for its sufferers. Ignoring the advocates will not make this growing epidemic disappear. It just won’t.