Government of Canada establishes Advisory Group to help Canadians living with rare diseases

From: Health Canada

News release

October 30, 2023  |  Ottawa, Ontario  |  Health Canada 

In Canada, one out of twelve people—many of whom are children—has a rare disease. There are thousands of different rare diseases that affect patients, their families and caregivers across the country. Unfortunately, treatments are available for only a small percentage of these conditions.

As part of the first-ever National Strategy for Drugs for Rare Diseases announced in March 2023, the Government of Canada committed to establishing a national governance structure to support the implementation of the National Strategy and to help improve consistent access and affordability of effective drugs for rare diseases across the country.

Today, as a next step in advancing this strategy, the Honourable Mark Holland, Minister of Health, announced the creation of the Implementation Advisory Group (IAG) for drugs for rare diseases. Over the next three years, the IAG will provide a forum for patients and stakeholders to provide patient-centred advice and exchange rare diseases-related information as well as best practices that will inform the implementation of the National Strategy.

The IAG includes approximately 20 members from across the rare disease community, including those with lived experience, and those who provide or who work to improve care for patients, such as clinicians, the pharmaceutical industry and researchers. Their first meeting took place on October 26, 2023. More information on the IAG members can be found here.

This announcement marks the continuation of critical dialogue between patients, their families and caregivers, and stakeholders in the development and implementation of the National Strategy so people living with rare diseases can have better health outcomes and access to treatment options.

Quotes

“Access and affordability should never be barriers to care. Since consultations on a drugs for rare disease strategy began in 2021, we’ve heard from patients and families with lived experience as well as from stakeholders that a stronger patient-centred approach is needed to ensure Canadians living with rare diseases could access the drugs they need, regardless of where they live. The Advisory Group is an important part of our efforts to make sure patients have their say in improving access to effective treatments and services for patients living with rare diseases.”

The Honourable Mark Holland
Minister of Health

Quick facts

  • The first of the annually rotating co-Chairs of the IAG will be Dr. Avram Denburg, Chair of the Drugs & Therapeutics Committee, and Staff Physician with the Solid Tumor Program, Division of Haematology/Oncology, with The Hospital for Sick Children, and Dr. Gail Ouellette, former founding President, Regroupement québécois des maladies orphelines. 

  • In March 2023, the Government of Canada announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. Through this, the Government will help increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada, including children.

  • As part of this overall investment, the Government of Canada will make available up to $1.4 billion to provinces and territories (PTs) through bilateral agreements. This funding will help provinces and territories improve access to new and emerging drugs, as well as support enhanced access to existing drugs, early diagnosis, and screening for rare diseases.

  • In July 2021, Health Canada released a What We Heard Report from national engagement on the National Strategy. The engagement garnered diverse perspectives from over 650 individuals and organizations, including patients with lived experience, family members, and caregivers.

  • The Government of Canada remains committed to introducing a Pharmacare Bill, establishing a Canadian Drug Agency and working with willing PTs and stakeholders to help Canadians have better access to the drugs they need, focusing on improvements related to accessibility, affordability and appropriate use of drugs.

Associated links

Contacts

Christoper Aoun
Press Secretary
Office of the Honourable Mark Holland
Minister of Health
613-291-4176

Media Relations
Health Canada and Public Health Agency of Canada
613-957-2983
media@hc-sc.gc.ca

Public Inquiries:
613-957-2991

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