Global Pricing News Alert: Quebec Unveils First Rare Disease Policy

NAVLIN Brief:

Quebecois Minister of Health and Social Services (MSSS) Christian Dubé and parliamentary assistant Marilyne Picard have unveiled Quebec’s first Policy for Rare Diseases, which aims to boost access to quality health care and services that meet the specific needs of patients suffering from rare diseases

Based on three axes, each of which are divided into concrete objectives, the plan seeks to raise awareness and training, particularly for health professionals; make it easier to access diagnosis, care, and services; and promote research, innovation, and data collection (full summary of policy provided in article)Quebec has set up an advisory committee to implement the plan over the next few months, with several sub-committees focused on specific rare diseases

 The Details

 QUEBEC CITY, Quebec – Quebecois Minister of Health and Social Services (MSSS) Christian Dubé and parliamentary assistant Marilyne Picard have unveiled Quebec’s first Policy for Rare Diseases.

(The policy is in French, but the key pillars have been translated by NAVLIN Daily and are listed below.)

Dubé said, “The lack of knowledge we have of rare diseases in the medical community leads to many challenges in terms of accessibility for those affected and their families. Through this policy, which is a first in Quebec and Canada, our government is committed to providing better access to diagnosis and treatment, as well as to providing patients with reliable information on the disease or support.”

An estimated 700,000 people in Quebec have a rare disease, and as it stands, Quebec has several programs in place that offer services for those with rare diseases: the Quebec National Blood and Urine Screening Program and the Quebec Molecular Diagnostic Network.

However, the policy aims to boost access to quality health care and services that meet the specific needs of patients suffering from rare diseases. Based on three axes, each of which are divided into concrete objectives, the plan seeks to raise awareness and training, particularly for health professionals; make it easier to access diagnosis, care, and services; and promote research, innovation, and data collection.

Quebec has set up an advisory committee to implement the plan over the next few months, with several sub-committees focused on specific rare diseases.

Axis 1: Raise awareness and training, particularly for health professionals

  • Encourage partnership between the network and patient partner associations
  • Improve training among clinicians and health professionals
  • Support the development of clinical tools guaranteeing quality care
  • Facilitate access to information

Axis 2: Make it easier to access diagnosis, care, and services

  • Improve and develop screening and diagnosis of rare disease and optimize the time to return the diagnosis
    • Increase access to preconception screening and prenatal diagnosis
    • Make preimplantation genetic testing accessible
    • Support the development of the Quebec Prenatal Screening Program
    • Support the continuous improvement of the Quebec National Blood and Urine Screening Program
    • Support the development of genomic medicine in Quebec
    • Support the development of any other screening and diagnostic tool pertinent
  • Prioritize care and services and ensure better access and reconciliation of services
    • Update the hierarchy of care and services
    • Designate reference centers and competent regional centers
    • Bring care and services closer together
    • Increase service offerings
  • Improve access to dental care for people with rare diseases that impact oral health
  • Improve access to care and pharmaceuticals
    • Optimize knowledge transfer and care among pharmacies
    • Improve offerings under the Quebec Food Program for the treatment of hereditary metabolic diseases
    • Optimize the process for accessing non-stable blood products from Hema-Quebec

Axis 3: Promote research, innovation, and data collection

  • Create a Quebec registry of rare disease patients
  • Promote basic, translational, and clinical research
  • Facilitate knowledge transfer between researchers, clinicians, and patients
  • Accelerate therapeutic innovation

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