During a Lyme Support Group gathering recently, it hit home that there are many people now struggling with Lyme and/or Tick-borne diseases that are in the dark about the issue. Having been fully immersed in all things Lyme since 2011, I forget that not everyone is at the same stage as me. It’s time to rectify that – a bit anyway. A lot of the info will be Nova Scotia specific. Some Canada specific due to the federal government’s involvement with Lyme in Canada. The information will not be all encompassing, but will give a little background for those new to the topic.
The first reported case of Lyme in Nova Scotia was in 2002. However, Kelly Burke, was the first person to actively investigate Lyme after a bite in 1999 in New Ross, NS – https://canlyme.com/2011/10/13/kellys-story/. As her story became public, more and more people reached out to the Burke’s and CanLyme with similar stories. Kelly’s husband, Larry became a Director of the Canadian Lyme Disease Foundation and the NS CanLyme Representative. He dealt with many calls over the years before stepping down in 2012 (if I recall correctly). In 2013, Rob Murray, DDS, joined the Board of the Canadian Lyme Disease Foundation. Since 2013, Dr. Murray has been working diligently to change conditions on the ground for present and future patients in Nova Scotia. I took over as the NS CanLyme rep in late 2015, with Dr. Murray remaining as a Director on the Board.
Since 2002, the number of confirmed/probable cases have generally continued to climb but, of importance to note, those numbers are only a portion of the actual cases. In the last two years, two research papers were published with regard to the actual case numbers in Canada. The first one, entitled “Under-Detection of Lyme Disease in Canada” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/) was written by Vett K. Lloyd and Ralph G. Hawkins. The second one, entitled “What is the real number of Lyme disease cases in Canada?” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6599318/) was written by N.H. Ogden, C. Bouchard, M.A. Drebot, T.F. Hatchette, … Both documents note that underreporting is an issue, but they differ as to how much is taking place. The second document notes that “We speculate that approximately one third of cases are reported in regions of emergence of Lyme disease, although prospective studies are needed to fully quantify under-reporting. In other words, when speaking about Lyme cases in Canada, one should always preface the number with the fact that these numbers are only those that were reported. In the US, the number of actual annual cases are generally considered to be at least 10x more.
In 2009, Lyme became a nationally notifiable disease in Canada. According to the “Surveillance of Lyme disease” document on the Government of Canada website (https://www.canada.ca/en/public-health/services/diseases/lyme-disease/surveillance-lyme-disease.html), in 2016 Nova Scotia reported the highest incidence in Canada at 34.4 per 100,000 population, which was 12.7 times the national average.
Bill C-442, “An Act respecting a National Lyme Disease Strategy” received First Reading on June 21, 2012. On December 16, 2014, the “Federal Framework on Lyme Disease Act” received Royal Assent and is now law. Bill C-442 was the first private members’ bill to receive unanimous support. The bill was introduced by Member of Parliament Elizabeth May after speaking to numerous constituents dealing with Lyme and Tick-borne diseases, including Nova Scotia’s very own Brenda Sterling-Goodwin, Lyme advocate extraordinaire.
In May of 2016, the Conference to Develop a Federal Framework on Lyme Disease was held in Ottawa. I was fortunate to be able to attend that conference. This conference was mandated by the Federal Framework on Lyme Disease Act. The purpose of the conference was to bring together a variety of stakeholders to develop a framework that would focus on the three areas within the Act: medical surveillance; education and awareness; and guidelines and best practices. There is a considerable amount of information available on-line about the conference, including videos posted on the Canadian Lyme Disease Foundation (CanLyme) website from the three day conference.
You can find quite a bit of information at:
- CanLyme YouTube Channel – https://www.youtube.com/channel/UCbvRlKgYPsuQuK9coZKDoiw
- Government of Canada – Lyme Disease in Canada – A Federal Framework – https://www.canada.ca/en/public-health/services/publications/diseases-conditions/lyme-disease-canada-federal-framework.html
- Synopsis: Lyme Disease in Canada – A Federal Framework – https://pubmed.ncbi.nlm.nih.gov/29770048/
The following two links give a different perspective from Lyme advocates/patients, and will give a brief look into what/who we are dealing with.
- AMMI Canada’s Position Statement – https://pubmed.ncbi.nlm.nih.gov/29770048/. I will be discussing AMMI in a bit more detail in my next post. AMMI is not a friend of Lyme advocates/patients, for a number of reasons.
- “Making Lyme Disease Law: The Role of Patient Advocacy in Health Law and Policy” – https://healthydebate.ca/opinions/role-patient-advocates-lyme-disease-policy-limited
In May of 2017, the Federal Framework was published – https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/lyme-disease-canada-federal-framework/lyme-disease-canada-federal-framework-eng.pdf – to much dismay by patient advocates. The document did not take into consideration most of the concerns expressed by patient advocates and many of the stakeholders in attendance at the conference.
On October 15, 2018, it was announced by the Honourable Ginette Petitpas Taylor, Minister of Health, that $4 million would be given to the Pan-Canadian Research Network on Lyme Disease (now called the Canadian Lyme Disease Research Network) – https://www.canada.ca/en/institutes-health-research/news/2018/10/government-of-canada-takes-action-to-address-lyme-disease.html. This also resulted in dismay by patient advocates across Canada as it appeared that the entire Lyme funding was being given to a single group whose members consisted of a number of well-known people across Canada who have been vocal about their thoughts/opinions about Lyme and whether individuals are actually dealing with Lyme and Tick-borne diseases. It was felt that any research undertaken by this group would result in more of the same. More on the Canadian Lyme Disease Research Network can be found on their website – https://www.clydrn.ca/.
Another Lyme research network also exists in Canada. The Canadian Lyme Consortium – http://www.clymec.ca/ – was formed to seek funding assistance from the federal government. Unfortunately, all funding went to the Canadian Lyme Disease Research Network, rather than a portion going to both groups and to others within the country undertaking research. The Consortium’s membership consists of researchers from four universities in Canada, as well as clinicians and representatives of the patient and advocacy communities.
In 2017 the “Ticking Lyme Bomb in Canada” petition (https://www.change.org/p/minister-hajdu-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now?) was started by Sue Faber and Jennifer Kravis of LymeHope. To date, the petition has over 86,500 signatures and 14,000 comments from people all across Canada. The petition has not been closed as very little has changed since the petition was started to help those struggling with Lyme and Tick-borne diseases. If you have not done so already, please check out the petition, sign, and share. There is also a considerable amount of information on the site.
Since 2002, various members of the provincial government have stood up in the Nova Scotia Legislature and requested that Lyme be given serious consideration. To date, it appears that it is only those people not in power that speak up about the issue. History suggests that those same people stop discussing the issue once their party is in power. For instance, prior to becoming Premier, Darrell Dexter raised the issue, more than once, if I recall correctly. In particular, as Leader of the Opposition in October, 2005, he gave notice to move the adoption of Resolution No. 4916 which stated, in short, “Therefore be it resolved that the minister review how health officials address the real threat Lyme disease poses to the well-being of the people of this province, and that the Canadian Lyme Disease Foundation be included on the Lyme Disease Working Group to assist in preparing a plan of action on how this province intends to proceed to deal with the disease.” I believe the Lyme Disease Working Group he refers to is what is now known as the “NS Zoonotic Diseases Technical Working Group”. This group was responsible for developing and implementing the Tick Borne Diseases Response Plan. Although it has been requested, numerous times, to have the patient perspective represented on this Working Group, there has not been any to date. It wasn’t just the NDP though. All parties at some point have spoken about the issue when not in power. Once in power, we are told that Lyme disease is being dealt with appropriately.
In October, 2014, Bill 41, the Lyme Disease Strategy Act, received First Reading. This Bill was introduced by Tim Houston, MLA for Pictou East. Second reading of this bill was undertaken on May 6, 2015. A very interesting discussion/vote ensued. It can be found in the NS Legislature Hansard notes. I would actually suggest to everyone that you search through the Hansard notes for all discussions concerning Lyme disease. They are very enlightening. It appears that this bill did not go any further at that time.
On November 27, 2015, a petition with 2,349 signatures was tabled in the NS Legislature by Tim Houston. The petition had five Asks:
- Provide Nova Scotians access to Doctors trained to clinically diagnose all stages of Lyme disease, which is recommended by Health Canada, rather than relying on the ELISA test which has sensitivity and specificity limitations (https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/health-product-infowatch/canadian-adverse-reaction-newsletter-volume-22-issue-4-october-2012.html)
- Protect Doctors that clinically diagnose and treat patients until they are symptom free from prosecution by the College of Physicians and Surgeons. Doctor’s hands are presently tied by the College and this has been proven to be harmful, detrimental and even fatal to the residents of Nova Scotia. Many US States have enacted laws in this regard.
- Request that the Minister of Health meets immediately, and at least once annually thereafter, with Lyme Patient Advocates. They are the eyes and ears regarding Lyme Disease in Nova Scotia.
- Undertake a year round awareness campaign such that ALL Nova Scotians become knowledgeable about ticks, their locations (everywhere), what diseases/infections they can carry, how to prevent being bitten, how to properly remove, how to landscape to prevent, etc.
- Ensure that an Active Tick Surveillance Program is being undertaken as per the “Tick Borne Diseases Response Plan” and that residents have easy access to this information.
Unfortunately, due to Ask #2, the petition was unable to be tabled. The ruling was based upon the fact that “O’Brien and Bosc states on Page 1167 that matters that properly belong before a tribunal may not be made the subject of a petition to the House.” “The College of Physicians and Surgeons falls within the types of bodies referred to in O’Brien and Bosc.”
On April 4, 2019, Bill No. 137, “An Act Respecting a Lyme Disease Strategy for Nova Scotia” was introduced by Tim Houston, MLA for Pictou East. It appears that this bill went no further than First Reading.
For many years, Lyme advocates in this province have been trying to change the dialogue about Lyme and Tick-borne diseases and to engage with members of public health and government in an effort to ensure that health care professionals are better educated and that the general public is aware of the issue. They have had letter writing campaigns; have written numerous Letters to the Editor to a variety of NS publications; they have been interviewed on radio and TV and for print articles; they have met with the sitting Minister of Health (only one sitting Minister of Health has agreed to meet to date as far as I know); the Chief Medical Officer of Health; various staff members of the Department of Health and Wellness; many politicians, and provided MLA’s, MP’s, and Senator’s with an abundance of information on ticks, Lyme and Tick-borne diseases; given presentations; held conferences; held awareness events; etc. Even with all that, very little headway has been made.
One of the reasons little headway has been made, in my opinion anyway, is that many of those that speak out are women. Most are women of a certain age. I feel that we are sometimes not listened to because it is felt that we are hysterical; menopausal; looking for attention; or bored. At one meeting I was in with the Minister of Health, we brought a 26 year old female who had been diagnosed with Lyme carditis. It felt like the interest in the room rose significantly when she spoke. It also appears that when a male occasionally speaks about the issue, they also seem to be given more credence. What this province needs, again, in my opinion, is more young people and males to start speaking up and becoming involved in Lyme advocacy and activism. We need to show a broader demographic of affected individuals. I would love to hear from you if you are interested.
There have been at least four Lyme conferences that have been held by Lyme advocates. One in New Glasgow, two in Halifax, and one in Bridgewater. All conferences had presenters from outside the province, including practicing physicians, university researchers, Lyme advocates, and authors. The 2018 Halifax Lyme Conference and the Bridgewater Lyme Conference both have videos available for viewing on YouTube at “Nova Scotia Lyme Awareness” Playlists – https://www.youtube.com/channel/UCe2yM3BPfLmlUMCM493GC1w/playlists.
Since September, 2017, Lyme advocates from across Canada have been in consultation with the Public Health Agency of Canada, about issues regarding ticks, Lyme and Tick-borne diseases. We have sat at the table, participated in webinars, and have been asked for our advice on a variety of issues. Although a few minor improvements have been made, it sometimes seems like one step forward, and then two steps back, is the norm.
In early 2020 another attempt was made on a petition to be tabled to the NS Legislature. It was felt that the petition would be tabled in the fall of 2020, given several months to obtain signatures. Of course, with the advent of COVID-19, the opportunity to obtain signatures has been severely restricted. Unless restrictions open up such that a large number of signatures can be obtained, the petition will no doubt wait until 2021. The new petition is similar to the earlier one, but no longer has the Ask that was in question.
The Asks are:
- Provide Nova Scotians with reasonable access to a Doctor(s) fully trained to clinically diagnose, as recommended by Health Canada, all stages of Lyme and Tick-borne diseases. At present, inadequately trained physicians, feeling unfamiliar with the range of both objective and subjective Lyme symptoms, rely on the ELISA/Western Blot tests, which misses a large number of cases annually.
- Undertake a year round awareness campaign, including signage, such that ALL Nova Scotians and visitors to the province have the opportunity to be informed about ticks, their locations, what diseases/infections they can carry, how to prevent being bitten, how to properly remove, how to landscape to prevent, how to get diagnosed/treated, etc.
- Ensure that Nova Scotia has a Tick Identification Program and a Tick Testing Program within the province and that the Tick Surveillance Program is being undertaken as per the “Tick Borne Diseases Response Plan”. Tick testing should include more than just Lyme and should include all species of ticks that bite humans/pets.
- Ensure that information is readily available advising Nova Scotians that a negative ELISA does not necessarily mean that you do not have Lyme disease.
- Include in the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia”, the following statement contained in the Infectious Diseases Society of America (IDSA) Lyme Guidelines, which the NS Infectious Diseases Expert Group recommends for treatment: “It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment (sic) with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”
Unfortunately, with COVID ongoing, there has been a hold on this petition. This delay has resulted in the newly updated IDSA Lyme Guidelines being posted – https://www.idsociety.org/practice-guideline/lyme-disease/ – and the wording of the caveat noted in the guidelines has changed to include some additional wording, such that our petition will no doubt have to be updated once COVID is no longer an issue. The new wording is:
It is important to realize that guidelines cannot always account for individual variation among patients. They are assessments of current scientific and clinical information provided as an educational service; are not continually updated and may not reflect the most recent evidence (new evidence may emerge between the time information is developed and when it is published or read); should not be considered inclusive of all proper treatments methods of care, or as a statement of the standard of care; do not mandate any particular course of medical care; and are not intended to supplant physician judgment with respect to particular patients or special clinical situations. Whether and the extent to which to follow guidelines is voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances. Although IDSA, AAN, and ACR makes every effort to present accurate, complete, and reliable information, these guidelines are presented “as is” without any warranty, either express or implied. IDSA, AAN, and ACR (and its officers, directors, members, employees, and agents) assume no responsibility for any loss, damage, or claim with respect to any liabilities, including direct, special, indirect, or consequential damages, incurred in connection with these guidelines or reliance on the information presented.”
On June 25, 2020, we held the first NS Lyme Advocacy/Activism meeting (via Zoom). There were five people in attendance, with four others interested in being involved. However, more people would be helpful, especially males and youth/young adults. We need to show that this issue can affect anyone, and everyone. If anyone is interested in learning more about this group, please reach out to me. I would love to hear from you.
A second meeting of the NS Lyme Advocacy/Activism group was held on November 26, 2020. The main purpose of the meeting was to chat with Marnie LePage of Manitoba Lyme to learn about what Manitoba is doing regarding Lyme and Tick-borne diseases. It was a very informative meeting and it was great to learn about the Manitoba Lyme Clinic and how well Manitoba Lyme and the Manitoba Health Association work together.
The next meeting of the NS Lyme Advocacy/Activism group will be held on February 25, 2021. We now have 14 interested people, but hope to continue to build. More on this meeting after it happens.
In July of 2020, I became a Global Lyme Alliance Lyme Education Ambassador. Although the Global Lyme Alliance is predominately a US organization, I felt that this affiliation would help increase my knowledge and expand my networking capabilities. I hope to continue my affiliation with the Canadian Lyme Disease Foundation, with any monies that I can fundraise going to them.
Through my involvement in Lyme Disease education and awareness in Nova Scotia, I, as well as several other Lyme advocates/patients across Canada, have been asked to participate in the Patient Advocate Consultation for the Canadian Association of Schools of Nursing’s (CASN) Climate-Driven Vector-Borne Disease project. It has been an interesting undertaking to date and we are hopeful that our feedback is being heard and will be incorporated in this educational e-resource for nurses.
As I do with the Lyme Information document that I wrote a few years ago, I will continue to update this one with information as I remember it or with new things that occur. This document was prepared for a couple of reasons:
- To bring new people somewhat up to speed on what has been happening; and
- To help come up with a different strategy(s) to finally move this issue forward as what we have been doing to date has not been enough.