Bringing patient voices to the conversation on heart health care

HeartLife Foundation co-founder Marc Bains leverages journey living with heart failure to help more patients enjoy better quality of life

Marc Bains’ life changed forever more than a decade ago, with what he thought at first was just a common cold.

As he became more worn down and his cough grew worse, he consulted his family doctor. He was prescribed medicine for what was believed to be the flu and advised to get rest.

But the Vancouver native’s condition continued going downhill. Walking up the stairs left him struggling for breath. He had so little energy that it was easier to fall asleep at the kitchen table than to get up and go somewhere more comfortable. Then came the persistent chest pains.

Bains went to a hospital emergency department, where a battery of tests revealed the true cause of his medical problems – heart failure. Bains was just 23 at the time of his diagnosis in 2008 and received a heart transplant in 2018.

“It’s something that no one is really expecting,” he said. “Like a lot of heart failure patients, especially being young, I had no idea what heart failure was or what it meant for me. That’s when my journey began.”

Bains, now 35, could have just quietly focused on his own battle against the life-threatening illness. But instead he has become a passionate advocate, determined to use his journey and his experiences living with heart failure as tools to help other patients enjoy better well-being.

Five years ago, Bains co-founded HeartLife Foundation – Canada's only national patient-led heart failure organization. The foundation aims to drive healthcare innovation and transformation by adding patient voices to the heart failure conversation.

“Cardiovascular disease is one of the leading causes of death and hospitalization in the country, but heart failure is not generally well known or spoken about,” he said. “There hasn’t been a lot of knowledge around the challenges faced by patients with heart failure, both as individuals and the impact it has on society. That’s what we’re hoping to change through our advocacy.”

Heart failure is a chronic condition with no known cure that develops after the heart becomes damaged or weakened. As a result, the heart’s pumping action weakens and doesn’t effectively move blood around the body, especially during increased activity, or under stress. 

Approximately 600,000 Canadians are living with heart failure[i]. While many patients can effectively manage the condition with lifestyle changes and medications, others with more advanced disease rely on implanted medical devices, such as pacemakers and defibrillators, as well as heart transplants.

Bains and HeartLife Foundation are trying to help more Canadians understand some of the most common signs of heart failure – shortness of breath, chest pain, fatigue, and swelling of the ankles and feet – so they can seek treatment earlier and minimize the impact of the condition on their daily lives.

“Because there is such a lack of awareness, you often miss some of those key signs and symptoms,” he said. “There are some symptoms that people can attribute to other illnesses that can sometimes be signs of heart failure.”

Access to care, medical therapies and support services varies widely across Canada depending on where heart failure patients live. HeartLife Foundation has been calling for the creation of a national standard of care for Canadians living with heart disease, and for their caregivers. Earlier this year, the foundation released the Canadian Heart Failure Patient and Caregiver Charter, outlining national standards it would like to see adopted.

The foundation also recently launched the Heart Failure Patient Journey Map, capturing patient experiences to help others visualize the impact of the disease and show how with the right support, patients can live well with heart failure.

“We’re hoping the patient journey map and the charter reach as many patients and caregivers as possible so they have an understanding what this journey looks like and they understand there is hope and that they can live a good quality life,” Bains said.