Caregiver, Mississauga, ON
My daughter Brooke was diagnosed with severe PAH in March 2014 at the age of 24. I have always considered myself to be Brooke’s main caregiver. Because Brooke remains very independent, my support has probably been more emotional than physical (one is no less important than the other!), so I think a better descriptor of my role in her journey would be Advocate. My advocacy started very early - Day One with her medical team! But, I also wanted to understand what medications were available to treat PAH (and was shocked to learn that drug access depends on where you live in Canada) and I wanted to learn when new treatments might be available to PAH patients in the future.
I have learned a lot about the drug development and approval processes since those early days. I will continue to try to use what I am learning to advocate, not only for earlier and equal access to treatments for patients wherever they live in Canada, but for changes to the current Rare Disease drug approval process so that even more patients can get access to potential new and exciting treatments on the horizon. And I will continue to be there to provide both emotional and physical support for Brooke when she needs them.