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Dr. Jillianne Code: Heart failure patients need equitable access to high-quality care and we need it now

Opinion: It’s critical to know what heart failure is and debunk the misconceptions, like heart failure only affecting older demographics.

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I wasn’t diagnosed with heart failure until I collapsed at 27 years old. It took numerous ER visits and doctor’s appointments, days in the hospital and three rounds of antibiotics for misdiagnosed pneumonia before doctors knew what was wrong — why I couldn’t breathe, why I couldn’t lay flat, and why I could barely walk without frequent breaks.

My heart was damaged and failing — literally. That diagnosis was the moment life changed forever.

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Now more than ever, we need to ensure Canadians don’t have to go through what I experienced. It’s critical to know what heart failure is and debunk the misconceptions, like heart failure only affecting older demographics. Only then can we truly understand why Canada must demand a national standard of care for heart failure patients and their caregivers. At minimum, it should include timely and accurate diagnoses, proper access to specialized care, treatment, and medication for patients no matter where they live.

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Currently, there are 669,600 Canadians living with heart failure, and each year another 92,900 Canadian adults are newly diagnosed. Here in B.C., the prevalence of heart failure has been increasing, from 1.8 per cent in 2000-01 to two per cent in 2015-16.

Although heart failure is on the rise here and across Canada, patients commonly struggle to get a timely and accurate diagnosis. As a Vancouver resident, I’m lucky to live near specialized cardiac doctors, but access to care, medical therapies, and support services varies widely from one region to the next. These inequities to health care access do not include the inequities and systemic traumas experienced by women, minorities and Indigenous persons.

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We know vulnerable populations have been and continue to be hit hard by the pandemic. Heart failure patients are a highly vulnerable group, at higher risk of contracting COVID-19 and experiencing serious complications. At any given time, we live in fear of contracting an infection, but COVID-19 has made us fear going to the hospital, even though delayed heart treatment causes further, irreparable damage to the heart.

HeartLife Foundation, Canada’s first and only national patient-led heart failure organization, just released the Canadian Heart Failure Patient and Caregiver Charter. We are proud to launch the charter with the heart failure community. It outlines how we must establish a core set of patient/caregiver rights to create and advocate for a national standard of care to improve quality of life and reduce heart-failure-related mortality and hospitalizations. Heart failure alone costs Canada $2.8 billion per year.

We must empower individuals with heart failure in managing their health and living a better quality of life. And finally, we must call upon policymakers, health-care providers and private payers to recognize heart failure as a lethal, chronic disease, and unite in the campaign for greater awareness.

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This tool along with the HeartLife Foundation Patient Journey Map captures the voice of patients and family caregivers from across Canada and provides insight into the challenges facing Canadians directly affected by the disease.

As a heart failure survivor and two-time heart transplant recipient, I am sharing my journey to help show heart failure can happen to anyone, and to reassure others they are not alone and that support exists. At this time of crisis, people living with heart failure need our support for equal and meaningful access to health care and treatment. While there is no cure, there is hope. It’s about life, not failure.

Dr. Jillianne Code is the co-founder and president of HeartLife Foundation, assistant professor in the Faculty of Education at the University of British Columbia, and a two-time heart transplant recipient and heart failure survivor.

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