HOPEFUL news about Lyme disease in Canada!
Today MPP Randy Hillier (Lanark-Frontenac-Kingston) addressed the Honourable Ontario Health Minister Christine Elliott on behalf of his constituent Jennifer Wheeler and her son Nicholas.
Watch and Listen to MPP Hillier’s question and Honourable Minister Elliot’s response here:
Nicholas is suffering from Lyme disease and his mom, Jennifer Wheeler and her husband Josh were reported to Children’s Aid by a doctor from CHEO after she was forced to seek treatment for her son outside of Canada and there was a disagreement with the course of treatment.
The treatment the Wheeler's chose was what helped their son to improve his quality of life, and helped him to regain his health. Their doctor in Ontario who wanted to help was also inappropriately reported to the College of Physicians and Surgeons. Both reports to CAS and the College were unfounded, and now Jennifer is working with CHEO, MPP Randy Hillier, LymeHope, MD's, RN's, Lyme advocates, and now the Honourable Minister of Health of Ontario Christine Elliott to put into place a pilot program aimed to improve diagnostics and treatment for those who face Lyme Disease.
MPP Hillier stated: “Ontario’s health system often treats people with Lyme in a reprehensible and atrocious manner..”.
He asked Minister Elliott if she would meet Jennifer (and her team of professionals) “to discuss a pilot project to reform these outdated attitudes and harmful practices and help people who are suffering with Lyme disease”.
Some politicians are willing to listen and will take action! Please consider thanking MP Hillier for raising such a critical issue and asking / encouraging your MPP to support this.
Are you a Canadian outside of Ontario? Do the same in your own Province. Google “how to find [my Province] MPP/MLA email”. Share MPP Hillier’s video and ask your representative if they would consider asking your Provincial Health Minister the same question.
Sue Faber, Jennifer Kravis, Tamara House
I am writing to let you know many of your constituents are also suffering from Lyme disease and are unable to access any care or treatment in Ontario due to outdated and insufficient guidelines. This is an urgent non-partisan health crisis affecting many Ontarians, adults, children and babies alike. It is also causing huge waste in our health system and putting all of us at risk.
Please join MPP Randy Hillier in calling for and supporting a pilot project led by the Honourable Christine Elliott, Minister of Health, which must involve patients and their experts, whose voices continue to be ignored in favour of the abysmal status quo. It’s time for real change.
[your name & contact information]
Recent interview with Cindy Kennedy for her podcast 'Living with Lyme'. I share my personal journey as a registered nurse, Lyme patient and advocate and an overview of how LymeHope started - as the result of reaching out and engaging with Lyme patients from across Canada - so that their voice would be heard and amplified.
- Sue Faber (Co-Founder LymeHope)
Very serious allegations have been made that Public Health Agency of Canada is interfering with the World Health Organization (WHO)’s process for the new ICD Codes by requesting the WHO delete the code for Congenital Lyme Borreliosis.
Regardless of whether these allegations are true, the code for Congenital Lyme Borreliosis appears to have been inappropriately removed from the WHO ICD-11 platform despite being declared stable as of June 2018.
Attached FYI is a pdf of our letter this morning to our Prime Minister, Health and Justice Ministers and Public Health Agency of Canada and opposition leaders. We are calling on Canada, as a United Nations member state, to protect the integrity of the WHO process and insist that the WHO immediately reinstate the ICD Code for Congenital Lyme Borreliosis and allow the WHO process to proceed uninterrupted and without interference.
Update: On December 21st and 22nd, 2018, Ms Kimberlie Elmslie, Vice-President, Infectious Disease Prevention and Control Branch of the Public Health Agency of Canada wrote in an email response to LymeHope and others:
“I am writing to indicate that the Public Health Agency of Canada did not request that the WHO remove congenital Lyme disease from ICD-11. The WHO has a well-established process of scientific evaluation used to update and revise the International Classification of Diseases. You may wish to seek information from the WHO on this process.”
“I can confirm that PHAC did not make representations to WHO MSAC at their September 6th or October 25th meetings. PHAC did not have advance knowledge of the outcomes of these discussions and only became aware through the postings on the ICD portal. The fact that we have never contacted WHO on congenital Lyme disease has also been confirmed directly to us by WHO officials.”
The purpose of this update is to share with you our most recent letter to Public Health Agency of Canada executives and Minister of Health Ginette Petitpas-Taylor. Our December 3, 2018 'Open Letter' outlines our requests for PHAC and Ministry of Health to take urgent action regarding in-utero transmission of Lyme disease. Letter below.
We are also sharing this link and letter to every single MP and Senator we have met in the last 18 months (from all parties) - all 63 of them as this issue is of great concern.
Please consider sending this link and letter to your MP with a short personalized cover note indicating you are concerned and ask him / her to raise this in Parliament.
You may look up your federal MP here (plug in your postal code in the search bar on right): http://www.ourcommons.ca/Parliamentarians/en/constituencies/FindMP
As always, thank you for your continued engagement and support. Should you feel our work is valuable, we would gratefully accept donations of any size to assist us in continuing to raise the voices and concerns of Canadians and to effect change in Canada and around the world. We cannot offer tax receipts at this time.
With Thankfulness and Hope,
Sue Faber RN BSc(N)
Jennifer Kravis BA, LL. B
In June 2018, PHAC hosted an in-person Multidisciplinary Round table Discussion on Lyme Disease. This was attended by diverse representation of provincial Public Health representatives, healthcare professionals, allied healthcare/veterinary, medical/nursing societies and associations and Canada-wide representation from patient advocacy groups and organizations.
Session Report June 2018
Webex Report October 2018
On October 24, 2018, PHAC hosted a web-ex Multidisciplinary Round table discussion on Lyme disease.
30 years after transplacental transmission of Lyme disease (Borrelia burgdorferi) was first documented and acknowledged by Federal Public Health officials in their 1988 Health and Welfare Canada Report, the Public Health Agency of Canada has just published a Systematic Review which confirms risk of in-utero transmission as well as risk of adverse pregnancy outcomes associated with gestational Lyme disease (Lyme disease in pregnancy). https://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report
Scientists from Public Health Agency of Canada (PHAC), assisted by a co-author from the U.S. Centers for Disease Control & Prevention (CDC), recently reviewed the global scientific literature on the impact of Lyme disease during pregnancy and the effect on the fetus and newborn. Their findings were published on Nov 12, 2018 in PLoS ONE, a scientific journal.
LymeHope was honored to be invited by PHAC, as valued stakeholders, to share our expertise and feedback as reviewers of this important paper prior to publication. PHAC shared a draft copy of this review in February 2018 and we have been in close communication with review authors and senior Public Health officials as a result. We initially provided PHAC authors with over 50 pages of comments, questions and recommendations – all linked back to the peer reviewed literature. We were also thankful for the opportunity to engage in-person with the review authors and PHAC executives at our Oct 5, 2018 meeting in Ottawa. https://www.lymehope.ca/news-and-updates/breaking-news-canada-acknowledges-maternal-fetal-transmission-of-lyme-disease
We are delighted that much of our feedback was incorporated into the final review and we believe this will open more doors for this alternate mode of transmission to be acknowledged and researched in a meaningful, transparent way – for the sake of all children who suffer as a result of Congenital Lyme Borreliosis – in Canada and indeed around the world.
Some of the key findings in the review include:
This of course raises questions and concerns for those mothers who do not know they have Lyme disease (asymptomatic, misdiagnosed, undiagnosed) or those who know they have previously been infected, but may have been under-treated. Just last month, a new Canadian study authored by Dr. Ralph Hawkins and Dr. Vett Lloyd states that only 3-4% of Lyme cases are officially diagnosed – the current testing approach is failing ALL Canadians (not just our babies). This further highlights the magnitude of the problem in Canada affecting men, women, children and newborns alike. https://www.lymehope.ca/news-and-updates/published-research-suggests-only-3-4-of-lyme-cases-are-officially-diagnosed
We are pleased that Canada is positioning themselves as a global leader and agent for change when it comes to recognition and acknowledgement of this alternate mode of transmission (mother to child in utero) and we are thankful and honored to be a part of this historical process. The review is consistent with the World Health Organization’s recent recognition of Congenital Lyme Borreliosis in their updated ICD-11 codes: https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis
Literature cited in the review reference list also identifies several critical issues which were not in the scope of this review, but need to be highlighted. For a more detailed review of the evidence of in-utero transmission and adverse outcomes of Borrelia burgdorferi please visit: https://www.lymehope.ca/advocacy-updates/march-03rd-2018
Where Do We Go from Here?
Your stories, letters, emails and signatures on the Canadian Lyme petition highlighting the reality of the suffering of Canadians of all ages, especially families where all all their children sick with Lyme disease, have been instrumental in guiding this process. Thank you. https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now
We trust that this Systematic review will serve as a critical launching point for renewed scientific rigor and medical interest in this alternate mode of transmission. At LymeHope, we look forward to continued collaboration with multiple stakeholders, education of frontline medical professionals on these important issues. We will continue to prioritize meaningful patient engagement to press forward.
With Hope, All things are Possible,
Sue Faber, Jennifer Kravis and Tamara House
LymeHope had a fantastic 45min meeting on Nov 2, 2018, with Ontario Minister of Health Honourable Christine Elliot.
We gave her a copy of the Ticking Lyme Petition comments - with over 81,000 Canadian signatures and 14,000 personal comments from every province across Canada, if you haven't yet signed the petition please do - the link here: https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now
We shared the historical in-depth literature which clearly documents in-utero transmission of Lyme Disease. https://www.lymehope.ca/advocacy-updates/march-03rd-2018
We also shared about the World Health Organization (WHO) recognition of congenital Lyme borreliosis in ICD-11 codes. https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis
The 14,000 comments and common themes and concerns from over 2700 'Lyme-letters' written by affected Canadians (men, women and children) formed the basis of the Registered Nurses Association of Ontario (RNAO) resolution on Lyme disease which I co-authored earlier this year - clearly highlighting and acknowledging the diverse and serious concerns of Canadians affected. https://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-rnao-focuses-on-lyme-disease
We very much appreciated her time, listening and concern.
Joint press release:
“Lyme patient groups from across Canada are unified in their concern over the federal Minister of Health’s awarding of $4 million of Canadian taxpayer monies for Lyme disease research to a research group that has not included the patient voice in a meaningful and inclusive way from its initial conception and on up through all stages of research development.
We strongly agree with the CMAJ’s deputy editor, Kirsten Patrick, who wrote in the October 16, 2016 issue of the CMAJ:
‘For each step in the research process, investigators need to consider how best to involve patients in planning and decisions. For patient-relevant research to be meaningful, patient and public engagement in research cannot comprise a token lay person on a research ethics review board. Patients and their caregivers must be involved in decision-making at all steps in the research process, from design to choice of primary and secondary outcomes, through dissemination and implementation.’1
A robust and fully inclusive patient voice is of utmost importance in Lyme disease research for true advances in testing, diagnosis and treatment to come about.
Patient groups feel that at least two Lyme disease research networks are necessary in Canada to ensure differing viewpoints are heard.
The status quo has not served Canadians well up-to-this-point. Differing opinions need to be heard, understood and embraced before we can effectively move this issue forward. Independent researchers can also make an impact and we need to ensure that they are also heard.
While Lyme patient groups support thousands of Canadians who are now living with tick-borne illnesses, we also work hard to prevent even more Canadians from experiencing tick-borne illnesses down-the-road. It’s time for real change and that can only come about with meaningful patient engagement!”
Canadian Lyme Disease Foundation
L’Association québécoise de la maladie de Lyme
Lyme Disease Association of Alberta
Lyme Disease Association of B.C.
Manitoba Lyme and Tick-borne Diseases
New Brunswick Lyme Disease Association Inc. – LymeNB
Nova Scotia Lyme Disease Support Group
Ontario Lyme Alliance
Saskatchewan Lyme Disease Association
Under-Detection of Lyme Disease in Canada: Published in peer-reviewed journal HealthCare
co-authored by Dr. Vett Lloyd and Dr. Ralph Hawkins
Interview with Dr. Ralph Hawkins on CBC Radio: https://www.cbc.ca/listen/shows/calgary-eyeopener/segment/15618889 (interview starts at 14:14)
Interview with Dr Vett Lloyd on CBC Radio: https://www.cbc.ca/player/play/1348167747992
Interview with Dr Vett Lloyd on CBC Radio -Information Morning - Fredericton Oct 19, 2018
Radio Canada International - http://www.rcinet.ca/en/2018/10/19/lyme-disease-may-be-vastly-under-detected-in-canada/
CBC News Article -Lyme disease vastly under-detected in Canada, according to new study
Calgary Star Article (Oct 22, 2018): Research shows Lyme Disease vastly under-detected in Canada
The Chronicle Herald: https://www.thechronicleherald.ca/news/thousands-more-people-suffer-from-lyme-disease-than-reported-study-251500/
Canadian Lyme Consortium Statement: http://www.clymec.ca/news.html