Last Thursday, July 11th, 2019 in Toronto, MDs including Dr. Ralph Hawkins (General Internist, Clinical Associate Professor of Medicine University of Calgary and Fellow of the Royal Society for Public Health) and advocate Jennifer Wheeler as well as Sue Faber (RN) and Tamara House from LymeHope and Jim Wilson President of CanLyme met in person/teleconferenced with Ontario Minister of Health Honorable Christine Elliott.
This meeting was graciously offered by the Health Minister in response to an April 10th/19 question by MPP Randy Hillier (Lanark-Frontenac-Kingston) on behalf of his constituent Jennifer Wheeler and her son Nicholas. Further details on the Wheeler family Lyme story and journey of devastation, heartache, bravery resilience and determination to facilitate change for Lyme sufferers can be found here.
Canadian Lyme sufferers from across Ontario and every province in Canada continue to face systemic barriers to appropriate diagnosis, treatment and care and these numbers grow on a daily basis. The Ticking Lyme Bomb petition has now collected over 85,000 signatures and over 14,000 personal comments from every province and territory across Canada – a brave, united, powerful collective Voice calling for urgent change that is anchored in patient priorities and evidence-based medicine. We continue to encourage all Canadians to sign, comment and share the petition.
The Wheeler family is joined by Lyme sufferers throughout Ontario and indeed across Canada who are often tragically caught in the middle of a devastatingly political disease, a tug of war which is wrought in senseless controversy which continues to diminish, ignore and even deny their collective suffering - truly a 'Ticking Lyme Bomb.' As a result, Canadian men, women, children and mothers have been brave enough to speak out about how they have been denied appropriate diagnosis and treatment, forced to seek medical treatment outside of Canada, experienced abandonment by our healthcare system which currently only addresses acute manifestations of Lyme disease and is silent to Canadians who don’t fit into the narrow case-definition of Lyme.
Those with late stage disease, those who never remembered a tick-bite in an endemic area, those who don’t have positive Canadian two-tier testing, those with persistent symptoms and chronic illness despite early antibiotic intervention after a tick bite, those who may have been infected from birth, those who are concerned of possible infection through sexual contact or blood supply contamination– this enormous and growing cohort of untold thousands of Canadians – have been left without access to the compassionate care and medical treatment that they need and deserve. This MUST change. This WILL change.
At this meeting, Minister Elliot shared that she wanted to not only listen but also take meaningful action as soon as possible to work in collaboration and partnership with advocates and leading Lyme experts. Some of the topics which we discussed were issues around misdiagnosis, inadequacies of Canadian testing, in-utero transmission, concerns of blood supply safety, supporting scientific research which is anchored in patient priorities, establishing and supporting centres of excellence for adult and pediatric populations and the urgent necessity for frontline clinician/nursing education on the complexities of Lyme disease beyond an acute infection.
We also discussed steps to setting up a new Lyme Disease and Tick Borne Illnesses Task Force to implement recommendations already identified by the former Lyme Disease and Tick-borne Illnesses Task Force. We also requested setting up a sub-committee within the Task-Force to specifically examine and address in-utero transmission of Lyme disease as many families are concerned by this alternate mode of transmission which was first identified by Canadian Federal Public Health Authorities back in 1988.
Here in Ontario, we are so thankful for the tireless work of advocacy and patient support organizations such as Lyme Ontario and Ontario Lyme Alliance and the strong voice and action of MPP Michael Mantha and his recent motion on June 6, 2019 which passed in the provincial legislature calling on the government to take the necessary next steps to address Lyme disease and adopt and implement the 10 recommendations of the Lyme Task Force report. We are encouraged and excited by the work and dedication of Rossana Magnotta and the G. Magnotta Foundation and the G. Magnotta Lyme Disease Research Lab at the University of Guelph which is run by Dr. Melanie Wills - a highly respected leader in Lyme research and member of the Canadian Lyme Consortium.
The Registered Nurses Association of Ontario (RNAO) has already taken action and voted through a resolution in April 2018 on Lyme disease titled ‘Patient First Treatment for Ontarians with Lyme Disease’ which states: ‘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.’
We will continue to work together to embark on a socio-medico shift in how frontline healthcare providers, patients and the public view tick borne diseases and to collectively implement changes which ensure that Ontarian's receive the medical diagnosis, treatment and care they deserve within the Province and ultimately return to health and productivity. We are so thankful for Hon. Christine Elliot, for her strong and decisive leadership, standing in the gap, listening and empathy and ultimately her willingness to act on behalf of Ontarian's with Lyme Disease. We believe that Ontario can and will lead the way!