Living with Climate-Driven
Vector-Borne Disease

The views expressed in the external content linked below do not necessarily represent the views of the Canadian Association of Schools of Nursing (CASN) or the Public Health Agency of Canada (PHAC).

The “Living with Vector-borne Disease” webpage was created to highlight the lived-experience of individuals, families and communities affected by climate driven vector borne infectious disease. It reflects a key learning developed during the course of this project: the need for health care providers to develop a deeper understanding of the meaning that VBDs have for the people experiencing them, as well as the importance of recognizing their strengths and the unique challenges they are facing.

This section underscores the critical importance of patient advocacy in shaping policy, programs and practices addressing vector-borne infectious disease. Over the last few decades, patients have been calling for a greater role in the development and delivery of programs, interventions, and services designed to meet their needs. “Nothing about us, without us”, an expression popularized by the Canadian HIV/AIDS Legal Network (2005), has punctuated this movement, and highlighted the need for a fundamental shift in patients’ relationships with the health care system.

Recognizing this movement, CASN acknowledges the tremendous value of respecting and learning from patient experiences. We extend a special thanks to the multiple stakeholders with lived experience of climate driven VBD across Canada who contributed to the development of this resource and to CASN’s Guidelines for Undergraduate Nursing Education on Climate-Driven Vector-Borne Disease . We are particularly grateful for the time, expertise, and insights they provided us with throughout the project. CASN honours and acknowledges the voices, experiences and contributions of patients and their advocates.

Lyme Disease patient testimonies

Canadian examples:

• CBC nature of things episodes on Lyme Disease: expert testimonials
• CBC nature of things episodes on Lyme Disease: patient testimonials
• Sarah Pinto: what it’s like living with Lyme Disease
• Amanda Kenny
• Story of Pediatric Lyme Disease ‘Learning to Ride the Waves’ – Alberta Health Services
• 2016 Federal Lyme Conference
  • Scroll down for “Ottawa Conference # 5a Public Forum Room 4” video:

• • • Short testimonial excerpts from patients may be found from:
      • Minute 3:50 to 5:25
      • Minute 12:45 to 13:38
      • Minute 13:10 to 13:38
      • Minute 15:39 – 15:57
      • Minute 34:43 – 36:45
      • Minute 37:42 – 38:35
      • Minute 39:33 – 39:59
    • Additional testimonial excerpts are below:
    • Pediatric Intensive Care Nurse: minute 6:45 – 8:05 and 8:30 – 9:10
    • Masters in public health student: 40:27 – 42:57
    • Canada Health Act: From 43:56 – 44:25
      

• • Scroll down for “Ottawa Conference # 4 Public Forum Room 2” video:

• • • Short testimonial excerpts from patients may be found below:

1. 1. 1. An outdoor worker at high risk:

• • • • Lyme disease experience: minute 11:28 – 14:37
      • Treatment in USA: minute 14:38 – 14:55
      • Denial of Disability benefits due to “lack of diagnosis”: 14:55 – 15:14

1. 1. 2. Michelle Gagnon:

• • • • Indescribable pain: minute 28:50 – 28:54
      • List of symptoms: minute 29:51 – 30:30
      • Healthcare system and costs: minute 32:24 – 33:01

1. 1. 3. Marguerite Glazer:

• • • • Her personal experiences: minute 33:43 – 35:00
      • Common patient experiences: minute 35:43 – 37:15

1. 1. 4. Carolyn Morris: minute 45:40 – 47:58
      5. Emily Jamison: minute 55:58 – 57:58

American examples:

• https://www.cdc.gov/lyme/signs_symptoms/stories/index.html (text)
• https://www.bayarealyme.org/about-lyme/lyme-disease-stories/ (text with photos)

Podcasts & Documentaries

• CanLyme Disease Foundation’s Looking at Lyme podcast

Documentaries on Lyme

• Faces of Lyme
• Under our skin
• CTV’s Out of the Wild Part 1 of 2
• CTV’s Out of the Wild Part 2 of 2
• Endgame

Canadian Lyme Disease Organizations/ Patient Advocacy Groups

• Alberta Lyme
• Association Quebecoise de la maladie de Lyme
• CanLyme
• Enfance Lyme Quebec
• LymeHope
• New Brunswick Lyme Disease Association
• LymeOntario
• Manitoba Lyme
• Ontario Lyme Alliance
• Saskatchewan Lyme

Lyme Disease in Canadian Media

• Patient Voices at 2016 National Conference on Lyme disease (MacLean’s magazine)
• Lyme Disease patients push for better treatment, diagnosis, prevention
• Lyme Disease growing in Canada
• Federal government to pour $4 million into first ever Lyme Disease Framework
• Mothers on a mission to prove Lyme Disease can be passed to unborn child
• The Truth about Lyme Disease
• Patients caught in the battle over treating chronic Lyme Disease
• CTV W5 (aired November 2020) ‘Bitten’ Part 1
• CTV W5 ‘Bitten’ Part 2

Lyme Disease Advocacy Efforts

• RNAO resolution ‘Patient First Treatment of Ontarians with Lyme Disease
• 2016 National Conference on Lyme Disease
• ‘Ticking Lyme Bomb Petition’ National Petition
• 2017 Parliamentary HESA hearing on the Federal Framework
• 2020 Patient Advocacy Leadership response to Public Health Agency of Canada 2020 Website update Optimization on Lyme Disease