Speaking for Candice: A Mother’s Plea for PAH Patients

Hello. My name is Denise Rumbolt and I’d like to tell you about my daughter, Candice. 

Like any mother, I’ll tell you she’s beautiful, intelligent, funny and kind. She’s also messy, sarcastic, stubborn – and never on time. 

I’d like to introduce you to Candice today. But I can’t. She died on October 15, 2015, from heart failure caused by Idiopathic Pulmonary Arterial Hypertension. 

In April of 2014 Candice was just finishing her second year at Memorial University. Like many 20-year-olds, she was focused on her exams and finding a summer job. Then, in May, she fainted at work. 

By fate, the ER doctor that day had knowledge of PH. She heard a “split” in Candice’s heartbeat and ordered more tests. A month later, we were 1500 km away from home at the Health Science Centre in St. John’s where Candice spent 16 days undergoing testing that led to her diagnosis. 

Her life – and ours – was turned upside down. There is no cure for PH. Treatment might help with the symptoms, but we were told a lung transplant would likely be her only chance of survival. 

She was prescribed a newly approved drug called Opsumit. At $5000.00 a month we feared we’d need to sell everything we owned. Thankfully, a patient support program covered the cost. 

As I mentioned, Candice was stubborn – sometimes to her benefit, sometimes to her detriment. She never let PH define her. She didn’t fall apart or ask, “why me?” She joked about printing a T-shirt that said, “I’m fine, leave me alone!” 

But she also downplayed her symptoms, hiding her struggles. She kept pushing forward. 

On October 14th, 2015, she went to work as usual. That night she admitted to feeling unwell. The next morning she called in sick and asked me to take her to the hospital. We called an ambulance. Less than an hour later, 486 days after her diagnosis, I watched my beautiful girl take her last breath in the emergency room. 

There was no slow progression for Candice. No multiple pathways. No transplant list. Just a vibrant 21-year-old girl gone in an instant. 

Since then, we’ve advocated for PH awareness, research and access to treatment. We do the 6-minute walk, we light our town hall purple, we speak out. 

When I read about the drug Sotatercept – showing potential to reduce hospitalization, transplant and death by 76% - I was both overjoyed and heartbroken. My husband said, “If only this had been available 10 years ago”. 

Before all patients can access it, Sotatercept must be approved by the pan-Canadian Pharmaceutical Alliance. 

I implore our elected officials: please finalize these negotiations. It won’t bring my daughter back, but I still feel her with me. And I speak on her behalf.