A Quebec Policy for Rare Diseases

A first in Quebec and Canada

On June 6, 2022, the Minister of Health and Social Services, Christian Dubé, accompanied by his parliamentary assistant, Marilyne Picard, announced the establishment of thefirst Quebec policy for rare diseases. This aims to optimize accessibility to quality health care and services that are safe, equitable, inclusive and adapted to the specific needs of patients with rare diseases and their families.

The policy, which was the subject of a consultation process involving 24 rare disease organizations, including the Sjögren Syndrome Association as well as others organizations specialized in this sector, is divided into three main axes:

  • this involves awareness and training, particularly for health professionals< b>,
  • facilitated and equitable access to diagnosis, care and services,
  • as well as the promotion of research, innovation and data collection.

Word from the Minister of Health and Social Services

Mr. Christian Dubé, Minister of Health and Social Services.

Photo of Minister of Health Christian DubéRare diseases constitute serious and disabling health problems which can include chronic pain, various forms of deficiency or damage to several organs or systems. There are between 5,000 and 8,000 worldwide, which together affect up to 8% of the population. In Quebec, this represents approximately 700,000 people, affected at different stages of life, sometimes even before birth and into adulthood.

The lack of understanding we have about these diseases in the medical community leads to many challenges for those affected and their families. Among these challenges, note the difficulty of obtaining a diagnosis, treatments, reliable information on the disease or support. Note also that access to services in the region is an additional difficulty for patients living outside major centers. To these issues, it must be added that the very limited number of people suffering from one of these diseases slows down the development of appropriate treatments, or leads to the creation of drugs that remain very expensive and rather inaccessible.

Faced with all these accessibility challenges, we must show solidarity and offer an adequate response to people’s needs. This is why the implementation of this policy is very important to us. These people have the right to have better access to diagnosis, health care and treatment, regardless of their place of residence, their condition or their cultural reality.

Such a policy is a first in Quebec and Canada. Our government recognizes the specific needs of those affected and their families and we ensure that we respond to them in the best possible way. It’s a question of fairness for all, and in this way we are committed to making a lasting difference, with the support of our teams across the network.

Source: Office of the Minister of Health and Social Services (June 6, 2022)