15 years. Wow! Has it been that long since the small group of us got together with a vision of starting a national organization in Canada?
What motivated me to join that group of 6 to start PHA Canada?
There was only one obvious motivation for me, and that was the PH friends I had met after being diagnosed. See, most of those friends were very, very sick, and there was only one treatment available to them - Flolan, or what is now Caripul. I knew my friends were too sick to advocate for new treatments, and I was comparatively much healthier and in a stronger position to do something. I also felt how lonely the disease was and the lack of patient education or voice. In 2007 I witnessed the power of patient connection coupled with medical education at the PHA US Conference in Minneapolis, and attending that conference solidified, in my mind, the need for a national organization in Canada. And what helped me think I could be part of such a large undertaking - the personal stories and motivation of the other five founders!
As I look back on 15 years, there are many things to be proud of, but three particular milestones stand out as achievements that will serve the organization well for years to come:
Hiring a full-time Executive Director in 2016 set the organization on a path of growth and advancement. Organizational growth provides the opportunity to reach more patients in innovative ways and gain a more prominent voice for advocacy.
The organization has embraced technology and facilitated patient Meet-Ups and large online meetings during Covid. Access to solid medical information through the website and medical presentations at our conferences is essential to gain confidence that you can handle this disease.
The role that PHA Canada has played to help facilitate both The Medical Think Tank and CPHPN (aka the PH Docs & Nurses meetings). Getting these Canadian professionals together to share learnings and information serves to improve patient care.
In the next couple of years, a new medication will be coming to the market that holds the potential to be the most exciting treatment for PH that I have seen in my 23-year involvement with the disease. It is essential that we have a healthy and robust national organization that can advocate for the availability of this medication for every patient in Canada.