Pangaea Express: Quebec Releases Rare Disease Policy
The Quebec government has released its provincial Rare Disease Policy. This is the first jurisdiction in Canada to develop a policy for rare diseases that aims to help patients suffering from a rare disease gain better access to diagnosis, health care and treatment. This policy focuses on three main areas (1) awareness and training; (2) Facilitated and equitable access to diagnosis, care and services; and (3) promotion of research, innovation and data collection.
Some key highlights of these three areas include:
- Awareness and Training
- Improve training for health professionals to better understand the normal development of a child and to be able to detect delays and anomalies
- Provide a public list of institutions designated for rare diseases and centralize information to help facilitate access to existing resources and those to be developed
- Facilitated and equitable access to diagnosis, care and services
- Facilitate access to screening tests, diagnoses, specialist and care and treatments
- Promotion of Research, Innovation and Data Collection
- Create a Quebec registry of patients with rare diseases
- Promote clinical research into rare diseases, facilitate the sharing of clinical information for patients and integrate the treatment component into the priorities
- Accelerate therapeutic innovation
The Ministry of Health and Social Services (MSSS) will publish an action plan in the coming months that will identify financial measures to ensure the plan’s sustainability.
Life Sciences Ontario released its blueprint for a made-in-Ontario rare disease strategy last September 2021 in the hopes Ontario government would take a leadership role among provinces on new programs and strategies for rare diseases. However, it seems Quebec has taken the first step among provinces and territories for drafting such a plan to improve access to health care services for rare diseases. Quebec has also defined rare diseases as one that affects no more than 1 in 2,000 individuals and where there is no current treatment available.