A Quebec policy for rare diseases and the action plan 2023-2027

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 the first 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,
  • 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 : Politique québécoise pour les maladies rares  (June 6, 2022)

Quebec action plan for rare diseases 2023-2027

To follow up on the June 2022 publication of the Politique québécoise pour les maladies rares, the MSSS is reiterating its commitment to people with rare diseases by unveiling its first action plan. The proposed actions are spread over a 4-year period (2023-2027) and are in line with the 3 axes of intervention unveiled in the policy: awareness and training, facilitated access to care and services, and the promotion of research, innovation and data collection.

As with the policy, the action plan is the fruit of collaboration between patients, rare disease organizations, clinicians, researchers and various MSSS bodies.

Word from the minister

It is with pride that we present to you the action plan For better recognition and care of people suffering from rare diseases. This action plan concretizes the policy on rare diseases presented last year, which was a first both in Quebec and in the country as a whole. With the actions it proposes, it will profoundly change the quality of care for people suffering from rare diseases, from a perspective of prevention unmatched until now.

We are very sensitive to the situation experienced by people suffering from rare diseases, as well as their loved ones. The action plan aims to ensure that the health care and social services that patients receive are of the best possible quality, as well as safe, equitable, inclusive, adapted to their specific needs, accessible and aware to cultural imperatives.

As part of the 2023-2024 budget, our government is allocating total funding of $17.2 million to carry out the various measures. Just like the policy, the action plan is structured around three main axes, namely awareness and training, easier and equitable access to diagnosis and, finally, the promotion of research, innovation and data gathering.

We know that this action plan was long awaited. We thus give ourselves the means to overcome certain current challenges such as the difficulty of having a rapid diagnosis or the lack of information due to the rarity of these diseases.

Together, by strengthening interdisciplinary links between professionals, we will be able to meet these challenges and offer a better service pathway to affected people and their loved ones.

Christian Dubé Minister of Health

Source : plan d’action sur les maladies rares (May 1, 2023)