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Opportunity is Now!

Why Now? Canadians have the Opportunity of a Lifetime to design the world’s best Rare Drug Program directed to assure patients have access to today’s and tomorrow’s therapies. The Canadian government has committed $1 billion to set up Canada’s Rare Disease Drug Strategy, with on-going invest of $500 million each year. The Rare Drug Program will be grounded in Canada’s Rare Disease Strategy.

What’s the Vision? The Pan-Canadian Rare Drug Program will assure innovative and essential rare therapies are delivered to patients as soon as possible and consistent with Canadian principles of accessibility, comprehensiveness, universality, portability, and publicly accountable administration.

Your voice matters!

The Canadian Organization for Rare Disorders is cooperating with the federal government to provide input from the patient community and other stakeholders. In particular, we want to ensure that a new Pan-Canadian Rare Drug Program is focused on meeting patient needs and addresses the challenges in the current process. Consultations are planned for the first quarter of 2021. CORD invites you to share your experience of accessing care and treatment and your recommendations for a rare drug program.

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* 1. To help us better interpret the responses, please indicate your personal relationship to rare diseases. Please check all categories that apply. 

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* 2. Following are some of the challenges experienced by rare disease patients in getting access to medicines. To the best of your knowledge, which of these have been experienced by you and your family or other rare disease patients in Canada? For each item, please check all the categories of patients that you feel are affected. There are no right or wrong answers. If you are not sure, please give your best guess.

  Personal Rare disease patients Non-RD patients No impact
Access to prescribed RD drug was denied or delayed by private drug plan
Access to prescribed drug was denied or delayed by public drug plan
Clinical trial for potentially beneficial RD drugs not accessible (in Canada)
Potentially beneficial "off-label" drugs not covered for rare condition
Could not access RD drug because cost or co-pay not affordable
Diagnosis or testing to access RD drug was delayed or denied
No access to specialist to prescribe or manage RD drug therapy
Lack healthcare services for appropriate RD drug support

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* 3. Please provide examples or comments about drug access challenges.

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* 4. Following are issues related to access to rare disease medicines in Canada. To what degree do you (agree or disagree with each statement as it applies to rare disease drug access in Canada to date?

  Agree strongly Agree Neutral Disagree Disagree Strongly
Clinical trials for RD medicines are available in Canada.
RD drugs are launched in Canada at same time as elsewhere.
Health Canada conducts timely expedited approval of RD drugs.
CADTH/INESSS make appropriate recommendations on value of RD drugs.
Manufacturers and public drug plans complete timely negotiations for RD drugs.
Patients who might reasonably benefit can access RD drugs.
Clinicians can make RD drugs available without onerous barriers.
Private drug plans make RD drugs available as soon as approved by Health Canada
Patient co-pays for RD drugs are not a barrier to access.
Patients participate in informed decisions about RD treatment options.
Patients are willing to share real-world data on RD treatment outcomes.

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