RNAO resolution and article 'Ticking Lyme Bomb'
"Originally published in the May/June 2018 issue of Registered Nurse Journal, the official publication of the Registered Nurses' Association of Ontario (RNAO)."
'In the spring of 2017, Faber and Kravis went back and forth to Ottawa three times with binders full of these personal stories. They shared them in meetings with MPs and were invited to speak as witnesses at the Parliamentary Standing Committee on Health. Around that time, Faber and Kinsella also met two RNAO colleagues who suggested the association could help get the message out: CEO Doris Grinspun and Halton chapter executive member Opal Robinson. Grinspun encouraged them to write a resolution about Lyme disease for the next annual general meeting (AGM) and Robinson invited Faber to share her story at the chapter’s November meeting.
Nurses at that meeting were alarmed by the challenges Faber faced accessing health services for her family, and decided to take action. They voted to support a resolution on Lyme disease, seeking to raise awareness and amplify the voice of patients.
“We wanted to bear witness to the suffering of these patients...and bring their story to the rest of RNAO,” says chapter president Louela Manankil-Rankin. In the weeks that followed, Faber, Kinsella and Manankil-Rankin co-authored a resolution that urges RNAO to
“…advocate, at all levels of government, for Lyme disease prevention programs and the rights of all patients with symptoms consistent with Lyme and/or co-infections to receive evidence based, patient-centred care for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing health-care 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.”
The resolution was carried on April 20. “I’m so proud to be part of a profession that supported me and lifted me up,” Faber says, noting that several colleagues at the AGM approached her with hugs and thanks for bringing the resolution forward. Both Faber and Kinsella will continue to work on Lyme disease research. Faber also meets regularly with government and public health officials, and attended a roundtable discussion on Lyme disease with federal MPs in May. Both nurses say they are hopeful a shift in policy is on the horizon.
If things are going to get better for Canadians with Lyme disease, Faber says nurses will be a critical part of the solution. “We listen to our patients, we advocate for our patients, and we care for our patients. I believe we, collectively, can be a beacon of hope for Lyme sufferers, and we can also be a voice for change.”
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 Lyme disease prevention programs and the rights of all patients with symptoms consistent with Lyme and/or co-Infections to receive evidence-based, patient-centred care 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.