Press release—Recommendations from the public inquiry into the death of Amélie Champagne

AQML Welcomes Recommendations from the Public Inquiry into the Death of Amélie Champagne

The Association québécoise de la maladie de Lyme (AQML) wishes to express its gratitude to Coroner Me Julie-Kim Godin for addressing the concerning situation of individuals struggling with Lyme disease and its co-infections in Quebec during the public inquiry into the tragic death of Amélie Champagne. We are also grateful that our recommendations were carefully considered in the formulation of the inquiry’s conclusions.

Coroner’s Recommendations: Toward Better Management of Lyme Disease and Co-infections

Although the inquiry did not aim to determine if Ms. Champagne suffered from Lyme disease or a co-infection, the coroner recognized the considerable emotional and mental impact that this conviction had on her health. Her difficult medical journey, marked by uncertainty and a lack of clear direction (“medical wandering”), unfortunately reflects the experiences of many others in Quebec who exhibit symptoms similar to Lyme disease.

The coroner identified several critical factors in this alarming situation, notably:

• The complexity of the Lyme disease diagnostic pathway.

• Disparities in the knowledge and experience of healthcare professionals.

• The medical wandering caused by the numerous non-specific symptoms of Lyme disease.

These findings reinforce the necessity of adopting clear recommendations to improve patient care.

Persistent Concerns for the AQML

Coroner Godin strongly highlighted the exceptional work of INESSS, which published guides, tools, and recommendations in 2019 to assist healthcare professionals. However, we believe that too few of these recommendations are understood or followed today. Furthermore, we know that certain American treatments and protocols yield successful results, which explains why so many Quebecers choose to be treated in the United States. The AQML remains concerned about the potential repercussions for Quebec healthcare professionals who attempt to provide care following these protocols.

AQML Recommendations: Concrete Actions are Necessary

At the AQML, we work to ensure that no other case like Amélie Champagne’s ever happens again. No person should suffer to the point of considering irreversible actions due to Lyme disease and its persistent symptoms. Given the rapid growth of this disease, urgent action is required.

Our recommendations, presented to Me Julie-Kim Godin, are as follows:

• Dissemination of Scientific Knowledge: Distribute the latest INESSS publications and recommendations to healthcare professionals to harmonize practices and reduce uncertainty.

• Training for Healthcare Professionals: Ensure in-depth training for doctors and researchers on Lyme disease and other vector-borne diseases to guarantee rapid and adequate patient management.

• Support for Medical Research: Fund research into Lyme disease and its co-infections to develop more precise diagnostic tools and evidence-based treatments.

• Remuneration Reform: Reform the physician remuneration system in referral centers and specialized clinics for Long COVID and persistent Lyme disease to ensure access to care.

• Legislative Approach Inspired by the USA: Establish legislation similar to that in several American states, allowing doctors to treat Lyme disease without fear of sanctions and offering medical alternatives to patients.

We firmly believe that implementing these recommendations would significantly improve the management of people with Lyme disease in Quebec while preventing further cases of avoidable suffering.

Link to the inquiry report: http://Rapport d’enquête