This excellent Op-Ed published May 11, 2018 in the Globe and Mail written by Mary Beth Pfeiffer reviews many critical issues related to Lyme Disease:
Click on link above to access full article.
'Of paramount concern amid this invasion is that the standard treatment for Lyme disease used in Canada and other countries – a short course of antibiotics – leaves a significant share of patients ill for weeks, months and sometimes years. This treatment is based on care guidelines developed in the United States that new research suggests are flawed. Until the medical establishment stops denying a problem exists, more people will suffer.'
'At this crucial juncture, Canadians would do well to learn from the mistakes of the U.S. model of Lyme disease care, which has cost patients dearly in delayed diagnoses and inadequate treatments. Since 2000, when the first treatment guidelines were issued in the United States, Lyme disease has been framed as an infection that is straightforward to both diagnose and treat. It is not.'
'the U.S. guidelines have set the standard for – have essentially dictated – management of this epidemic. Yet, at least 20 scientific publications since 2012 have reported that the way Lyme disease is treated, with 10 to 28 days of antibiotics, may not be working. The pathogen survived in infected monkeys and mice and in test tubes when exposed to an array of antibiotics used in people.'
More about the Author:
Mary Beth Pfeiffer
Author: Lyme: The First Epidemic of Climate Change, Island Press, April 2018
Lyme: The First Epidemic of Climate Change documents the human contribution to the dangerous spread of Lyme disease to dozens of countries and multitudes of people. In a book based firmly in science, author Mary Beth Pfeiffer shows ticks climbing mountains and crossing borders as temperatures rise and ecosystems altered. As important, Pfeiffer challenges medical dogma that has left many untreated. "Lyme"makes a powerful case for action to combat ticks, address patient pain, and recognize humanity's role in creating an epidemic.
We spent the last few days in Ottawa educating and alerting federal MPs about the devastating situation in Canada regarding Lyme disease & Co-Infections.
It is so important that our politicians hear from as many people as possible that this is a major concern and we need urgent meaningful change. Below are some links you can click on to like, comment and share posts of our Government representatives to show them there is widespread support for this issue, which gives them a reason to learn more and be part of the solution.
MP Round Table - Monday May 7, 2018
All-Party MP Round Table:
On Monday May 7, LymeHope, along with CanLyme and the G. Magnotta Foundation and supported by Provincial Lyme groups, co-hosted an all-party MP Round Table education event on Lyme Disease in Canada. There was a great turnout, with over 40 MPs and/or their staffers in attendance from all parties. Your emails, letters and meetings with your MPs have had an impact!
We would like to acknowledge and thank MP Tracey Ramsey (NDP – Essex ON) and MP Randy Hoback (PC – Prince Albert SK) for co-sponsoring this event.
Dr. Ralph Hawkins, MD and Dr. Adrian Baranchuk, MD spoke to the medical concerns, Dr. Melanie Wills, PhD spoke about the science and Sue Faber, RN briefly shared the recent resolution on Lyme disease that was passed by the Registered Nurses Association of Ontario.
Finally we had two amazing young Lyme warriors – Daniel Stimers and Emma Smashnuk – educate and inspire with their stories about their struggles with Lyme and the work they are both doing to raise awareness so that other children don't have to face the same struggles.
The Conservative Party of Canada is Listening
We were also very honoured to meet with MP Andrew Scheer (Regina Qu’Appelle), the Leader of the Official Opposition and the Leader of the Conservative Party of Canada, along with Hon. MP Lisa Raitt (Milton, ON), the Deputy leader of the Conservative party, MP David Sweet (Flamborough- Glanbrook, ON), the Parliamentary Caucus Chair of the Conservative Party and MP Marilyn Gladu (Sarnia, ON), the Shadow Minister of Health. Earlier in the week we also had the opportunity to meet with MP Len Webber (Calgary Confederation, AB), MP Rosemary Falk (Battlefords – Lloydminster, SK) and MP Kevin Waugh (Saskatoon-Grasswood, SK).
We had the chance to share the numerous concerns being raised by Canadians coast to coast through this Petition.
The Conservative Party of Canada is indicating that they are very concerned and were interested to hear about the necessary solutions. We all agree it’s time to recognize, address & treat these diseases so our kids get back to school and parents get back to work, and we stop the unnecessary waste of health care dollars caused by misdiagnosis and delay in treatment!
It is so important for everyone to thank MPs who are showing support for this issue, and let them know your concerns, so they continue to make this a priority.
Here are a few steps you can do, and consider adding this Petition link (http://bit.ly/2lfBuNL) to your post to encourage more Canadians to be aware and show their concern by signing and sharing.
1. Click on the following Twitter post by MP Andrew Scheer – comment about your experience or concern, retweet to your Twitter followers: https://twitter.com/AndrewScheer/status/994395759138160640
2. Click on the following Facebook post by MP Marilyn Gladu – like, comment and share: https://www.facebook.com/MPMarilynGladu/posts/964613270380171
3. Click on the following Facebook post by MP Tracey Ramsey – thank her for co-sponsoring the MP Round Table, like, comment and share: https://www.facebook.com/tracey.ramsey.587/posts/10156000795590860
4. Click on the following Facebook post by MP Randy Hoback – thank him for his co-sponsorship of the MP Round Table, like, comment and share: https://www.facebook.com/MPRandyHoback/posts/2271803142846487
5. Click on the following Facebook post by MP Len Webber – thank him for his continued support and for making time to meet with LymeHope, along with MP Kevin Waugh (Saskatoon-Grasswood, SK), MP Rosemary Falk (Battlefords-Lloydminster, SK) and MP Marilyn Gladu – and like, comment and share: https://www.facebook.com/lenwebberyyc/photos/a.447959592472.206606.39832652472/10155674269017473/?type=3
6. Click on the following Facebook post by MP Larry Miller – thank him for his continued support and for making time to meet with Tamara House, VP of LymeHope: https://www.facebook.com/LarryMillerMP/photos/a.966512633393328.1073741827.966442970066961/1936179359759979/?type=3
7. Click on MP Carol Hughes (NDP - Sudbury ON) Facebook page – thank her for making time to meet with LymeHope: https://www.facebook.com/Carol-Hughes-38326584416/
Thank you for your continued support, please continue to share this Petition.
Jennifer Kravis & Sue Faber
Patient First Treatment for Ontarians with Lyme Disease - RNAO Resolution
The Registered Nurses Association of Ontario (RNAO) voted through a resolution on Lyme disease 'Patient First Treatment for Ontarians with Lyme Disease' at their annual AGM conference in Toronto on Friday April 20th, 2018.
A live recording of the resolution process and vote below. Please note, the Lyme resolution is the very first one addressed. https://www.facebook.com/RNAOHomeOffice/videos/10151012128169944/
**please note, 2 minor amendments were made to the below resolution adding in prevention programs for Lyme disease and strengthening some of the language used. We will update the resolution to reflect the changes with these amendments as soon as possible.
Patient First Treatment for Ontarians with Lyme Disease
Submitted on behalf of Halton Chapter
Author: Sue Faber and co-authors: Catherine Kinsella, and Louela Manankil-Rankin.
Authors declare no conflict of interest.
WHEREAS people with Lyme disease and/or co-infections in Ontario are not consistently receiving appropriate diagnosis and treatment of these diseases due to inadequate testing protocols and a lack of up to date education of medical professionals on the clinical diagnosis of these diseases;
WHEREAS there is a lack of education and awareness regarding persistence of infection, transplacental transmission, co-infections, other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors), symptoms (acute vs. chronic), surveillance of chronic cases, modes of testing, treatment, and the existence of up to date, evidence-based guidelines published by ILADS;
WHEREAS these challenges along with the politicization of this disease has created fear and uncertainty amongst healthcare professionals thereby forcing patients with Lyme disease and/or co-infections to pay for out of Country testing and seek health care outside of Canada at their own expense;
THEREFORE be it resolved that the Registered Nurses’ Association of Ontario (RNAO) advocate, at all levels of government, for the rights of all patients with symptoms consistent with Lyme and/or co-Infections to receive fair and proper treatment for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing healthcare provider education that acknowledges alternate modes of transmission, persistence of infection, and integration of a collaborative clinical model inclusive of ILADS guidelines in the treatment of this illness.
Lyme Disease is a serious and rapidly growing public health crisis in North America, caused by the bacterium Borrelia burgdorferi. It is spread by ticks that are carried by migratory birds and animals such as deer and mice. In 2016, there were an estimated 178,000 cases in US States bordering Ontario (Centers for Disease Control and Prevention, 2017). Canadian scientists predict that by the year 2020, 80% of the population of Eastern Canada will be living in a tick-populated area (Leighton, 2012).
Limitations of current testing (Health Canada, 2012) and treatment protocols have left thousands of Canadians improperly diagnosed and inadequately treated for the disease. Many have been forced to seek treatment outside of Canada at their own expense resulting in financial hardship, significant stress and strain on families (Boudreau, Lloyd, Gould, 2017). Bill C442 was passed in 2014 with a mandate of creating a national strategy for Lyme Disease, embracing a collaborative process of all stakeholders including patients (Bill C442, 2014). In May 2017, the Federal Framework for Lyme Disease was released (Public Health Agency of Canada, 2017). In June 2017, the House of Commons Standing Committee on Health called for a study of the Federal Lyme Framework (HESA, 2017).
Canadian patients, advocates, nurses, treating physicians, scientists, and researchers agree that the Lyme Framework failed its mandate and is insufficient to drive meaningful patient-centered change in Canada (HESA, 2017). It neglects to acknowledge the vast body of peer reviewed literature which documents persistence of infection resulting in chronic Lyme disease (International Lyme and Associated Diseases Society [ILADS], 2015) as well as clear evidence of vertical transmission from mother to child in utero (LymeHope, 2017). It is silent to voiced concerns over other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors). Alternate testing options are not addressed, it does not adequately address co-infections that may accompany Lyme disease and does not address treatment guidelines for chronic Lyme disease.
In a collective response to the failed framework, in August 2017, a petition with over 52000 names (Canadians Concerned About Lyme Disease, 2017), 14000 comments and 2700 personal letters from Lyme patients (Lyme Letters Canada, 2017) and their families were handed to the Federal Minister of Health and Chief Public Health Officer of Canada (Kingston, 2017). Patients have an important role to play through personal and public advocacy by presenting their lived experience to health professionals and decision makers including politicians at all levels of government (Federal Lyme Conference Patient Testimonies, 2017).
Patients have the right to timely and appropriate clinical diagnosis and treatment of Lyme disease and all co-infections utilizing evidence-based and up to date guidelines developed by specialist bodies that include ILADS. The ILADS guidelines are currently the only guidelines endorsed and listed on the National Guidelines Clearinghouse that must meet the U.S. Institute of Medicine (IOM) standard for the development of clinical practice guidelines (NGC, 2014).
Evidence based practice obliges practitioners to respect patients’ values and preferences alongside clinical judgment and relevant scientific evidence (DiCenso, Gordon, Ciliska, 2005). Nurses have a critical role to play in education, facilitating awareness, early detection and patient advocacy in areas such as Public Health, Emergency Rooms, Physician and Nurse Practitioner offices, summer camps and through policy change. Education has the ability to lift the veil of uncertainty surrounding Lyme disease for both patients and healthcare professionals and to bridge the gaps that currently exist, enabling early diagnosis and appropriate patient-centered treatment.
**Please note, 2 minor amendments were made but have not yet been updated to this resolution adding in education/prevention programs for Lyme disease and strengthening some of the language used.