'One network' only approach funded by Federal Government rejected by Canadian Lyme Patient Groups
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
Breaking News: Canada Acknowledges Maternal-Fetal Transmission of Lyme Disease
This Picture: Left to Right - Steven Sternthal (Director General for Zoonosis Division), Dr. Howard Njoo (Deputy Chief Public Health Officer), Tamara House (Vice-President of Families and Children, LymeHope), Kim Elmslie (Vice-President Infectious Diseases Prevention and Control), Dr. Siddika Mithani (President, Public Health Agency of Canada), Jennifer Kravis (Co-Founder, LymeHope), Dr. Nick Ogden (Senior Research Scientist, Zoonosis Division PHAC), Jane Bailey (Lyme Advocate), Dr. Robbin Lindsay (Research Scientist PHAC, National Microbiology Laboratory) and Sue Faber (RN, Co-Founder of LymeHope). We were also joined via teleconference with Dr. Charles Ray Jones, (Pediatric Lyme Specialist, New Haven Connecticut), Dr. Ralph Hawkins (Internal Medicine Physician), Dr. Lisa Waddell (Epidemiologist with the National Microbiology Laboratory, PHAC) and Dr. Matthew Gilmour (Scientific Director General of National Microbiology Laboratory, PHAC).
Breaking News: Canada Acknowledges Maternal-Fetal Transmission of Lyme Disease!
“What is the value of one child’s life?”
As Canadians, we soon will be coming together to celebrate a cherished national holiday Thanksgiving. At LymeHope we are genuinely thankful for the incredible news which we will now share with you.
This news pertains to all Canadians suffering from or concerned about Lyme disease, but specifically those who are concerned about the issue of maternal-fetal (in-utero) infection also described as transplacental transmission. Lyme disease is not only transmitted through a tick-bite, it can be passed from human-to-human, mother to child in pregnancy as reported in the scientific and medical literature. https://www.lymehope.ca/advocacy-updates/march-03rd-2018
This morning we met with senior scientists and executive officials at our Federal Public Health Agency of Canada as part of our ongoing discussions about transplacental transmission of Lyme disease. We had started these discussions over 18 months ago with the Agency anchored in a respectful, transparent and collaborative approach – doors opened, we walked through them.
We were incredibly honoured to have U. S. Dr. Charles Ray Jones, MD, the world’s foremost expert in pediatric and adolescent tick-borne diseases join in this meeting. Dr. Jones shared his experience of treating over 30,000 children, from every continent in the world and every Province of Canada, over 60 years of practicing medicine and saving lives. He talked about the hundreds of congenitally infected children he has seen, and more importantly, how he has been able to cure them of their tick-borne diseases and allow them to live healthy lives. A short 1 minute video about Dr. Jones pioneering work here: https://www.youtube.com/watch?v=YsH5W3I0GM8
32 years ago, in 1988, our Public Health issued a bulletin stating that transplacental transmission of Lyme disease had been documented, and yet somehow, despite 30 years going by, the majority of Canadians and medical professionals remain unaware of this. Even worse, many experts have stated, to patients and publicly it “doesn't exist”. We have been determined to change this. https://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report
Today, our senior most officials at Public Health acknowledged that transplacental transmission of Lyme disease can occur, AND that they will be updating their website to reflect this.
As mothers with suspected congenitally infected children, tears streamed down our face and hope rose in our hearts, that this truly is the beginning of a new era in Canada, a breath of fresh air. This means mothers who are told “maternal-child transmission of Lyme disease doesn't exist” can now update their medical teams of this acknowledgement by our very government, following on the heels of the recent acknowledgement of the World Health Organization. https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis
We must urgently come together to do our very best thinking – an all hands-on-deck approach to research this alternate mode of transmission and help children and families currently affected, many of whom reach out to us personally on a day-to-day basis.
Each of you, through your signing and sharing this Petition, sharing your stories and comments, encouraging and touching our hearts, shares in this miraculous and well-deserved news. Thank you from the bottom of our hearts.
LymeHope is already taking active steps to engage and assemble a multi-disciplinary working group of interested medical experts, scientists and meaningful patient representation. We must now come together to re-examine this critical issue and help implement the necessary steps to create a new reality in Canada, where pregnant women and their medical professionals are aware of the risks of transplacental transfer and are taking steps to ensure our future generations are protected from these devastating diseases. Dr. Jones today said he would be honoured to be a part of this initiative.
We have promised our own precious children and indeed the children of Canada that we will not stop our work until the day when they all are able to walk into a doctor’s office and receive appropriate care and treatment. We are now a step closer to our dream becoming a reality.
There is much work to be done; however, today we want to share this wonderful news with you. As we gather with our friends and family this weekend, we will be giving thanks for many things, including this first important step in changing the lives of Canadian mothers, babies and children. We wish you a wonderful Thanksgiving weekend, and, as always, thank you for your continued engagement and support as change happens.
In closing, just as the two-hour meeting came to a close, Dr. Jones shared the last word. He asked, “what is the value of one child’s life?” Without hesitation he answered with these words. “It’s Priceless.”
We all agreed and so, we step forward with renewed hope.
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