You can help create a national Pharmacare program that works for rare disease communities

— If you had a chance to speak, what would you say? —

Author_Pic.pngJoan Paulin (Mississauga, Ontario) is a dedicated PH community advocate and loving mother to a 24-year-old PAH patient. As an appointed Ambassador for PHA Canada, Joan has committed herself to acting as a lifeline for newly diagnosed patients, and hopes to remain a strong advocate for making necessary treatments available for those who need them. And so we sent Joan on a mission to the 2017 CORD Conference in Toronto last month to represent the PH community: here is her personal report.

Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of PHA Canada.


Did you know that the federal government is currently looking to develop a national drug plan? And did you know that you now have the opportunity to join the conversation and help make a difference?

Access to prescription drugs in Canada is currently provided through a mix of privately purchased and publicly funded drug programs that vary from province to province. This means drug access and pricing depend on the type of insurance you have, and the province you live in. 

In June of this year, a plan to provide a National Pharmacare Program reached the consultation stages with the formation of an Advisory Council on the Implementation of National Pharmacare. Unfortunately, there is very little in the news about the consultation process, which means that Canadians may be missing out on the opportunity to add their voice to this very important discussion. Affordable and equal access to drugs should be on the top of everyone’s radar—especially for us in rare disease communities, where a National Pharmacare Program could make a difference in patients’ access to therapies.

I have to admit that, like most people prior to a major health crisis, I paid little to no attention to our healthcare system. I thought it worked pretty well; we had universal healthcare after all… right? When I needed a prescription, I had it filled at the pharmacy and had most of the cost paid through my employer-provided healthcare plan. Well, for many patients and caregivers in rare disease communities, that is not how the system works at all.

Many rare disease patients experience the shortcomings in our existing provincial/federal system every day; unequal access to existing medications, long delays between clinical trial success and drug approval (and then even longer delays for patient access), and inflexible, bureaucratic processes (a one-medicine-fits-all process) that may override a doctor’s ability to prescribe the medication they think is best for the patient’s current situation. 

What I have learned on my journey as a caregiver and PHA Canada Ambassador is that healthcare is an extremely complex issue and change will not come easily. I have also learned that there is a tsunami of new therapies/treatments/technologies that are poised to significantly alter the way healthcare—including drugs—is provided going forward. We are at an important crossroads in healthcare delivery. 

This is a unique opportunity for rare disease communities to lead the shift towards more individualized care. This consultative process is an excellent opportunity to move in the right direction and help shape a national drug plan that ensures timely, affordable, and equal access to therapies/drugs for everyone—including rare disease patients. In order to get a better understanding of the process that is currently underway, you can go online and join the National Pharmacare discussion at

29473251_1910951255589947_8940649423684239360_o.jpgYou can also add your voice as a patient/advocate to the discussion by completing a survey at this link. This survey aims to understand your experience as a Canadian in getting access to prescription drugs: what is working and what needs to be improved. This survey is being conducted by the Canadian Organization for Rare Disorders (CORD) and The Consumer Advocare Network.

This is a once-in-a-lifetime opportunity to let our government know what needs to be included in a National Pharmacare Program so that we, like all Canadians, can get fair, affordable, and equitable access to the medications we need.

Let’s do it; let’s take the lead and help shape the direction of how healthcare will be provided in the future. Will you join me?



This is an initiative led by Health Canada and the Public Health Agency of Canada, specifically designed to help you learn about and navigate through current issues within national healthcare. According to the home page, the “input obtained during public engagement guides our discussions and informs our decision-making on policy and program development, and statutory and regulatory initiatives. Please join the conversation!”

2) The “Patients Talk Pharmacare” survey

This is for you to share your experience in accessing drugs. “There are changes coming that may affect which

 prescription drugs will be available, how they will be provided, and who will get access.” This survey is not just about rare disorders but is directed at all Canadians who in the past have used, currently are using, or might in the future use prescription drugs. In other words, just about everybody!

3) SHARE this article with friends and family

This issue affects all Canadians: affordable and equal access to drugs is something we all need to be talking about.


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