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Incidence and economic cost of Lyme disease cases in Canada given climate change projections

Grappling with the challenge of estimating future Lyme disease incidence and economic costs for the 21st century with projected climate change.

Climate change projects for Canada.

The Lyme disease (LD) community has complained for years that PHAC officials have been lowballing case numbers even though there was a degree of consensus on the issue. Dr. Nick Ogden, Canada’s chief research scientist has provided us with a multiplier of 13.7 to use on the officially reported numbers. Case numbers are important for government officials when it comes to allocating scarce health resources.[1]

Read the open access paper

Ogden NH, Dumas A, Philippe Gachon, Rafferty E. 2024. Estimating the Incidence and Economic Cost of Lyme Disease Cases in Canada in the 21st Century with Projected Climate Change. Environmental Health Perspectives. 132(2). doi:https://doi.org/10.1289/ehp13759.

LD was first characterized by a rheumatologist, Dr. Allen Steere in 1977 and has now rapidly expanded to become the most common vector-borne disease in the northern hemisphere. Although we hear mostly about mosquito-borne diseases, ticks are responsible for 90%-95% of vector-borne diseases in North America, 82% of which are Lyme. World wide, mosquito-borne diseases kill more people. 

Lyme disease (LD) is established in parts of Canada and emerging in others owing to the range expansion of the main tick vector Ixodes scapularis. “The objective of this study was to estimate future LD incidence in Canada, and economic costs for the 21st century with projected climate change. Three scenarios (optimistic, intermediate, and pessimistic) for maximum incidence at endemicity for modeling purposes were selected based on LD surveillance, and underreporting estimates, from the United States.”[1] The authors confirm that climate change is accelerating the pace of growth and spread of tick populations.
“Projected annual LD cases for Canada ranged from 120,000 to >500,000 by 2050.” Variation in incidence was mostly due to the maximum incidence at endemicity selected, with minor contributions from variations among climate models and variations in greenhouse gas emission scenarios. Projected annual costs were substantial, ranging from CA$0.5 billion to $2.0 billion a year by 2050. There was little difference in projected incidence and economic cost from 2050 to 2100, By 2050 the most densely populated areas of the study region are projected to be climatically suitable for ticks.” The authors concluded that future incidence and economic costs of LD in Canada are likely to be considerable, but uncertainties remain.[1]

The problem with Lyme disease

From a strictly economic point of view the social cost of permanently disabled persons with late severe tick-borne neurological involvement is considerable.[2] This Canadian study estimates that loss of work productivity and non-medical costs were a huge amount (over 85%) of the cost of late LD. That’s because this disease takes a huge toll on patients. Many patients are unable to work entirely and others have to cut back their work hours or change the nature of their work because of the disease.[3] Compared to the loss of work productivity and income to patients with persistent LD, the direct medical costs are insignificant. Additionally there is the loss of tax revenues to governments who now have to pay for social assistance. Before they became ill many of these patients were some of the most active community members.[2]

The authors used a multiplier of 13.7 to adjust the incidence numbers reported in Canada in order to better align with industry data used in the U.S. and more closely reflect the reality of under-reporting/ under-detection. The CDC states there are 476,000 cases a year in the U.S., not the 63,000 cases reported in 2022. It’s more accurate to say 476,000 is the estimated number of people treated for LD and likely excludes untold thousands of patients who were actually infected. The Bay Area Lyme Foundation estimates that 620,000 U.S citizens were infected in 2024.

Symptoms of LD vary with different stages of progression. “Early localized LD is characterized by mild illness, if untreated, frequently progresses to early disseminated LD with more serious neurological or cardiac manifestations. If untreated at this stage, most patients suffer late disseminated LD with neurological and arthritic symptoms. At each progression, the disease becomes more difficult to treat and has a longer impact on the patient’s health.”[1]

There is no evidence that Borrelia burgdorferi (B. burgdorferi) bacteria responsible for Lyme clear the body on their own and no test of cure.[4] In fact the opposite holds true with voluminous amounts of evidence in the literature from animal studies including monkeys and human autopsy reports that B. burgdorferi cause persistent inflammation and infection. Lyme is a contested illness with only a handful of objective signs and poor tests.[4,5] It was misclassified by the conflicted Centers for Disease Control (CDC) as a minor nuisance disease not worthy of further investigation after the insurance industry red-flagged it as being too expensive to treat. The long-term disability insurance industry doesn’t want to underwrite the costs of treating  persistent Lyme and tick-borne diseases (TBDs). Insurance executives, in cahoots with academics who study, not treat the disease, developed a test with a high bar and a set of highly restrictive guidelines that remove the need for clinical skill and judgement along with patients’ right to autonomy, the fundamental right to be provided with choices where those exist and make informed decisions about their care.[6]

Infectious disease (ID) doctors are focussed only on those that can pass their narrow set of criteria and flawed test (PDF) that misses a third of those that truly do have the disease. Once they have been treated the patient is no longer of interest and becomes someone else’s problem. Physicians haven’t been informed that the guidelines and tests they use are flawed (PDF).  Only recently has the CDC listed B. burgdorferi as an infection that can cause chronic symptoms- just short of admitting that LD can become chronic.

Prevalence

All pandemics from polio to COVID have chronic forms. The Infectious Diseases Society of America (IDSA) invented a syndrome that had the same symptoms as the original disease. This has proven to be advantageous for the long-term disability insurance industry and ensures healthy profits. It also benefits infectious disease doctors (ID) who are paid as expert court witnesses to decline disability payments to individuals.[6]

It is not clear how the authors evaluated the morbidity, significant societal and economic costs associated with escalating burden of persistent LD in Canada which they have lumped together with the term post-treatment Lyme disease syndrome (PTLDS), a term coined in 2006 to mask treatment failure. The authors state a proportion of patients suffer from PTLDS and that they understand this to be a treatment-refractory syndrome. The medical and societal costs of not treating those with persistent LD or PTLDS is considerable but was not included because the authors explain there is so little known about the condition.[1] 

Late-stage, untreated or undertreated Lyme is by definition “chronic” infection and is much more difficult to treat. The number of Canadians who have been diagnosed late, undiagnosed or misdiagnosed is unknown but is likely significant. There is consensus that 10%-20% or more of LD patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS. 30-40% of LD patients who have been infected for weeks to months before getting diagnosed, and then treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic LD,” or CLD. Because the disease is chronic, the numbers grow exponentially each year.[7] Whether PTLDS and CLD patient subgroups even have LD remains contested. The disputed nature of this illness has very little to do with whether a person is actually sick. It has everything to do with the lack of a clinically accurate diagnostic test for the LD bacteria. 

The authors fail to mention that the term PTLDS is a strict research definition that was created to define a subset of patients who receive a prompt diagnosis and treatment of early LD. PTLDS does not include patients who received a delayed diagnosis – either due to a false negative test result or failure of a physician to recognize the symptoms and provide a clinical diagnosis of LD.

There is consensus that 10%-20% or more of patients treated for Lyme according to the Infectious Diseases Society of America Infectious Diseases Society of America (IDSA) guidelines remain ill. Using the multiplication factor of 13.7 provided by Dr. Ogden we can calculate that an estimated 272,000 Canadians have had LD since 2010 and from that further. estimate that 27,000 – 82,000 Canadians are left suffering from persistent LD until 2023. These patients have been medically abandoned as this is not a recognized condition in Canada due to the lack of an accurate test. PTLDS is considered a syndrome rather than a disease and syndromes are not treated with antimicrobials.

The problem that LD has is that few die outright, patients look normal and the disease doesn’t photograph well. As the girl in the award winning documentary “Under Our Skin” says “You don’t die, you just wish you were dead.”

Lyme disease treatment costs

The estimated annual direct medical costs for treating complex disseminated LD extrapolated from Adrion et al. 2015, are $7,163 per individual or $585,000,000 across Canada. This estimate doesn’t cover the considerable costs of medical appointments, prescriptions and medical travel encountered by Canadians who are forced to seek treatment outside of Canada. There are only a handful of Canadian physicians who are Lyme literate and will treat complex cases beyond what is allowed by the 2021 IDSA guidelines even though the guidelines themselves state that they are voluntary and individual circumstances may vary. Most physicians are too afraid to treat for fear of being investigated by the provincial licensing bodies and loss of licensure. 

Most patients with persistent Lyme or CLD have severe symptoms, require lots of medical care, and suffer a low quality of life with high disability and unemployment rates.[3] Unfortunately, for every year that we do not address the problem and find a cure for those who remain ill, the number of people living with chronic LD increases.[7]

The CDC/ IDSA/ AMMI Canada continue to advise against further antimicrobial treatment for PTLD. PHAC has prioritized the preservation of the antibiotic supply over returning Canadians to health.

“In medicine nothing is absolute, the science is never settled and patient care needs to be as individualized as the individual.”

L. Marcum 

Very few studies exist that calculate the economic impact of persistent LD. The cost for governments of having chronic Lyme patients sick in perpetuity is very large.[2]

Very little research has been conducted regarding how best to treat patients who do not respond to short-term treatment approaches but trials in Canada and the U.S. are underway or starting. This report doesn’t examine the major personal and societal costs associated with the burden of PTLDS or long Lyme such as loss of employment income, direct health care costs, disability supplements along with the loss of government tax revenue. This paper doesn’t look at the financial implications of ignoring patients with persistent LD that they refer to as PTLD versus the benefits of returning them to health and full employment using individualized treatments.[2]

Blinded randomized controlled studies are great except they are 1.) too expensive 2.) take too long and 3.) don’t apply to most people. They work well when there is only a single variable but LD infections are heterogeneous and case management is complicated by the presence of co-infections and the various strains of B. burgdorferi found across Canada. What works for one may not work for the next. This is why healthcare providers must listen to their patients and why we must continue to do research, conduct clinical trials, and seek cures.

The 2014 Act to create a Federal Framework on LD stated that current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute LD and deny the existence of continuing infection, thus abandoning sick people with a treatable illness. Canadians have made it very clear that we want a made-in-Canada set of LD guidelines or the adoption of guidelines produced by the International Lyme and Associated Diseases Society (ILADS).

Dr. Howard Njoo, Deputy Chief Public Health Officer with PHAC has stated that health is a provincial matter and provinces are free to do as they choose, the feds will not lead. In the meantime PHAC controls the direction of research and remains gatekeeper in charge of the flawed testing (PDF) that helps perpetuate the problem. 

Canada along with other nations agreed to support the CDC and follow its lead on LD but the CDC seems to be moving backwards on the issue. Members of the International Lyme and Associated Diseases Society (ILADS) disagree with the CDC/ IDSA position and have found most of cases of complex disseminated LD are in fact treatable, not with brief rounds of monotherapy as advocated by the IDSA, but with individualized combination therapies to address the various forms and many sophisticated survival and defensive tactics of B. burgdorferi. ILADS concludes that the very real consequences of an untreated chronic Lyme infection far outweigh the potential consequences of long-term antibiotic therapy. Further, they assert that although it is too early to standardize restrictive protocols, effective treatment options are available for these patients.

“Future incidence and economic costs of LD are likely to be substantial, but uncertainties remain. Because densely populated areas of Canada are projected to become endemic under conservative climate change scenarios, mitigation of greenhouse gas emissions is unlikely to provide substantial health co-benefits for LD.”[1] The authors didn’t take into account that there are substantial efforts underway such as the $10 million LymeX Prize to develop an accurate test along with better treatment protocols and regimens that are likely to disrupt the current medical stalemate that sees patients caught between feuding private medical societies in danger of losing their jobs, homes and lives.

Complex disseminated Lyme is treatable

There is insufficient evidence to withhold treatment. In fact denying Lyme treatment is deeply institutionalized discrimination”. Patients simply want to be returned to health and we know from two observational studies along with a retrospective study of Canadian patients that most cases of persistent LD are treatable.[8,9,10] The authors of a French observational study pointed out the moral and economic considerations of treatment.[9] They concluded that costs are considerable compared to habitual short term treatments. “However, what price-tag can one put on the benefit of the return of an adult person to complete motor autonomy and to work? Moreover, on that of a teenager to normal life? These human advantages are enormous.”[9]

Final complete remission, chiefly when enabling a return to work, represents an enormous economic benefit. Such therapies are not only morally good actions, but also highly socially profitable enterprises.[9]

PHAC, AMMI Canada and the deep divide

The IDSA and AMMI Canada emphasize the potential harms of treatment with antibiotics beyond what is allowed in the IDSA Guidelines and none of the benefits. AMMI Canada and the Royal Colleges have a 100% success rate in Canada in investigating physicians who treat LD beyond the IDSA guidelines and either have them sign a silencing agreement or remove them from practice. In other areas of medicine only 40% of clinicians are investigated. Connecticut Attorney General (now Senator) Richard Blumenthal found that the IDSA and by extension AMMI, although a nonprofit, is working in a similar manner as ‘for profits’ to eliminate competing ideas and associations. The result is most physicians are too afraid to treat

Patient centred research is seen to be important because medicine is authoritative. Status quo researchers have different goals and end points than patients. Patients simply want to be returned to health. PHAC has prioritized the preservation of the antibiotic supply over returning Canadians to health and that means maintaining the acute disease only (the rash) conceptualization of LD and ignoring all opinions and evidence to the contrary.

An example of this deep divide can be found in the fourth recommendation of PHAC’s Audit Committee in their Evaluation of PHAC’s activities for the Federal Framework on LD and Action Plan report released on 30 May 2022. “Consider enhancements to engagement processes and partnerships with patient advocacy groups related to TBD activities, as these continue beyond the completion of the Federal Framework.” It recommends that federal public health authorities  attempt to manage  expectations of stakeholder groups. “This may include clearly  communicating actions that result from the engagement, and setting clearly defined roles and expectations for all participants.”

This report also reiterates the false dichotomy between “science groups” (i.e. only IDSA ideologues) and “patient stakeholders”. This dichotomy implies (falsely) that patient stakeholders are not operating based on credible scientific evidence. This is belittling and reflects PHAC’s one-sided support for the IDSA “acute Lyme only” perspective, instead of a more balanced science-based ILADS approach. The report indicates that PHAC will continue to work with its traditional partners in government and industry to the exclusion of all others in order to maintain the status quo. PHAC is not ready for change, innovation or sharing power.

CIHR states that “patients are active partners in health research that will lead to improved health outcomes and an enhanced health care system.” In Strategy for Patient-Oriented Research (SPOR (PDF)) Patient Engagement Framework, CIHR claims that “engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients’ concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results.” Unfortunately, when it comes to LD these words and stated goals are ignored.

“True collaboration and patient input is required to start right from the beginning, right from the terms of reference of what it is that you’re studying… You don’t bring the patient in after everything’s been done, the surveys have been written. That’s not collaboration, that’s just checking off a box.”

Jim Wilson, founding CanLyme President

It’s all about controlling the agenda and maintaining the status quo. CDC/ PHAC will continue to model the disease and draw conclusions from the models, not the disease. PHAC will participate in group think as it continues to work with its partners that share similar views. PHAC has no interest in pursuing studies that would benefit patients and claim this is not part of their mandate. Dr. Howard Njoo has told us that health is a provincial matter and provinces are free to do as they choose. In the meantime he will maintain control over the testing at the National Microbiological Laboratory. It’s these tests that use obsolete 1960’s technology that got us into all this trouble in the first place and they must be abandoned. He will also control the direction of research.

Despite one’s viewpoint, there is no question that patients are suffering and deserve help. If their patients fail to get better with treatment physicians are instructed to treat them nicely and send them to whoever will make them feel better such as the physiotherapist. How about some cures?

The authors pin their hopes on better public education, awareness and tick avoidance along with the new Pfizer/ Valneva vaccine that is in stage 4 trials. We have lots of questions about the new vaccine and are awaiting answers. The vaccine may not be the magic bullet that most are hoping for. Physicians and the public have been misled for years into believing that LD is rare, easy to diagnose and treat and that patients get better even if untreated. Will the vaccine work on the co-infections such as Babesia, Anaplasma, Borrelia miyamotoi, Powassan virus, Bartonella, Mycoplasma, Rocky Mountain Spotted fever etc.? What impact will vaccine skepticism have? The U.S. is years ahead of us on public health education and prevention messaging but that hasn’t stemmed the tide as the hidden ignored epidemic continues to escalate.[2] So far the ticks are winning.

As patients and patient advocate stakeholders we want to be included in the decision-making. There is no more important stakeholder in health care than the sick patient and their medical and scientific advocates. No such participation in policy development has been allowed in Canada. Lyme and TBDs are a plague that will only become exponentially worse in Canada over the next 75 years, as outlined in this paper. Although these diseases are often difficult and expensive to diagnose and treat effectively, the human and economic cost of not doing so will be much worse. 

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

Dr. Kenneth Liegner

 References

  1. Ogden NH, Dumas A, Gachon P, Rafferty E, Estimating the Incidence and Economic Cost of Lyme Disease Cases in Canada in the 21st Century with Projected Climate Change. Environmental Health Perspectives. 2024 Feb 13;132(2):027005; https://doi.org/10.1289/EHP13759
  2. Davidsson M. The financial implications of a well-hidden and ignored chronic Lyme disease pandemic. Healthcare 2018 Feb 13 (Vol. 6, No. 1, p. 16). MDPI: https://doi.org/10.3390/healthcare6010016
  3. Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ. 2014 Mar 27;2:e322: https://doi.org/10.7717/peerj.322
  4. Maloney EL. Controversies in persistent Lyme disease. Journal of Infusion Nursing. 2016 Nov 1;39(6):369-75: https://doi.org/10.1097/NAN.0000000000000195
  5. Controversies & Challenges in Treating Lyme and Other Tick-borne Diseases, ILADS: https://www.ilads.org/research-literature/controversies-challenges/
  6. Johnson L, Attorney General Press Release: IDSA Lyme Disease Guidelines Flawed and Driven by Conflicts of Interests, Lymedisease.org 2008-May-01: https://www.lymedisease.org/15/
  7. Johnson L, Prevalence of Lyme disease is a big and growing problem – let’s look at the numbers, Lymedisease.org 2019-Jan-03 https://www.lymedisease.org/mylymedata-lyme-disease-prevalence
  8. Rogerson AG, Lloyd VK. Lyme disease patient outcomes and experiences; a retrospective cohort study. In Healthcare 2020 Sep 4; 8(3) p322). MDPI. https://doi.org/10.3390/healthcare8030322
  9. Trouillas P, Franck M. Complete remission in paralytic late tick-borne neurological disease comprising mixed involvement of Borrelia, Babesia, Anaplasma, and Bartonella: use of long-term treatments with antibiotics and antiparasitics in a series of 10 cases. Antibiotics. 2023 Jun 7;12(6):1021; https://doi.org/10.3390/antibiotics12061021
  10. Xi D, Gilbert L, Lambert JS et al. A Longitudinal Study of a Large Clinical Cohort of Patients with Lyme Disease and Tick-Borne Co-Infections Treated with Combination Antibiotics. Microorganisms. 2023 Aug 24;11(9):2152; https://doi.org/10.3390/microorganisms11092152

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