From Diagnosis to Advocacy: Heather’s PAH Journey

I was diagnosed with pulmonary arterial hypertension (PAH) in June 2024. In hindsight, knowing the symptoms as I do now, I might have had it for up to two years before my diagnosis. 

I am no stranger to life-threatening illness. I battled stage 3 breast cancer from 2013 to 2023: chemo, radiation, a double mastectomy, reconstruction and 10 years of hormone and aromatase inhibitor therapies. Then in 2024 with PAH -- here I go again.  

I had the absolute privilege of being a first-time advocate at the lobby day in St. John’s on May 5, 2025, for World PH Day.  

I was so happy to be an advocate as, really, the only people who can give decision makers, physicians, etc. a picture of what PAH is truly like is someone going through it. Physical and mental side effects are truly different for each patient. Doctors can look at your echo, BNP, bloodwork, and 6MW, but I find I am always reiterating my horrible side effects and the mental and physical fatigue as they cannot measure that.  My amazing improvements on my triple therapy (Opsumit, Adcirca and Uptravi) attest to the wonderful therapies out there—but for me, the side effects are as bad or physically debilitating as the condition. I’m still extremely grateful and will go through these side effects daily again and again to extend my life.

The best part of this was meeting and spending the day with another PAH PHighter, a PAH caregiver whose beautiful daughter passed from this illness, and Kimberly from PHA Canada. I learned quite a lot. 

I learned more about what PHA Canada does to support PH patients.  It’s an amazing national charitable organization committed to empowering the Canadian pulmonary hypertension community through support, education, advocacy, awareness, and research. I experienced it firsthand right after my diagnosis when I received an email from Kimberly with the Navigating PH Guide attached. I was just diagnosed the month before and was impressed she reached out to me! 

Of course, our main purpose for our advocacy on that day was discussing the need for publicly funded access to sotatercept, an amazing new therapy that has outstanding results from trials. Sotatercept is much needed for all PAH patients, even people like me who are amazingly considered low risk after only 8 months of triple therapy. I’m sure every PAH patient wants to have it added to their current therapies. Sotatercept is our lifeline, hopefully alleviating that lingering fear of progression, hospitalizations, lung transplant or death!  

I had no idea about the intricacies of drug approvals to get to the provincial approval and reimbursement level, and about the brave people behind the advocacy. The kindness and generosity of our MHAs and government officials was an eye opener, educational, scary, and hopeful all at once. 

I am so hopeful that our efforts on May 5th and continued follow up efforts will play a small part in expediting the approval for funding in our individual provinces.  

I thank PHA Canada again for their charitable work and positive effects on pulmonary hypertension patients’ lives.

Contributed by Heather Marrie, age 57, from St. John’s, NL