It’s 2018 and we’re stepping out for heart failure patients in Canada because the need for advocacy is greater than ever.
One million Canadians are living with heart failure and 50,000 are diagnosed with the illness each year, according to the Ted Rogers Centre for Heart Research. Meanwhile, heart failure is costing the Canadian healthcare system up to $2.3 billion annually, with the majority being spent on acute care.
However, there is a strong desire within the healthcare community to improve the overall quality of the patient experience. In fact, physicians who effectively communicate can make a profound difference in their patients’ quality of life, even in chronic care.
This is conveyed in the 2017 feature titled ‘How the Patient’s Voice Advances Safe Care’ which was published by the Risk Management Magazine of the Canadian Medical Protective Association (CMPA). It indicates how powerful patient voices can be in leading to better healthcare outcomes.
As Canada’s first and only national patient-led heart failure charitable organization, we’re working to engage patients, families, and caregivers, to provide education and support. We’re facilitating access to the latest research, innovations, and treatments, with one common goal – to advocate better care for all.
HeartLife Foundation beginnings
Our founder and president, Dr. Jillianne Code first met our co-founder and vice president, Marc Bains, at the Heart and Stroke Roundtable in 2016. They were both invited to provide their perspective on heart failure care in Canada, and they were the only two patients at the table.
“We got to chatting and determined that there needed to be a dedicated advocacy group for those effected by heart failure. There was no other advocacy organization focused on heart failure that was run by patients for patients,” says Marc.
In their discussions with healthcare leaders in Canada, the lack of organized patient advocacy efforts, led by patients, was identified as a gap. They were challenged by Dr. Sean Virani to do something about that and the concept of the HeartLife Foundation was born.
Progress and results
Now, two years later, the HeartLife Foundation is working to raise awareness of heart failure and taking action for patient care while building a local, regional, and national, network of heart failure advocates.
As a member of the Better PharmacCare Coalition, we’re collaborating with stakeholders to ensure patient access to the latest innovative therapies; we sit on panels, committees, and boards to provide patient perspective and contribute from a foundational level. At present, we’re participating in research being undertaken at UofA, UHN, UNBC, UBC, UofT, and UOIT.
The HeartLife Foundation mentors, supports, and guides, patients, families and caregivers, in times of need and operates a closed Facebook support group. Additionally, we educate and empower patients online to effectively self-manage their illness and share information detailing the latest research, trends, and tips on our social media channels.
Marc has been instrumental in obtaining grants to support opportunities to expand our reach, bring patients in to national conferences, and get plans in motion for a nationwide patient registry. Meanwhile, Jillianne has been a strong driver building relationships and in roads in the scientific community.
Advocating for access to medications
A 2016 report on ‘The Price of Public Health Care Insurance’ by the Fraser Institute noted how the average payment for public health care insurance ranged from $3,620 to $11,795 for six common Canadian family types.
Between 2006 and 2016, the cost of public health care insurance for the average Canadian family “increased 1.4 times faster than the average income, 1.3 times as fast at the cost of food, and at about the same pace as the cost of shelter,” according to the report. And this is before the cost of what could be life-saving prescription medications.
To help heart failure patients get access to the medications they need, The HeartLife Foundation advocates at government level, in meetings with MLAs, as well as writing letters to the Canadian Agency for Drugs and Technologies in Health (CADTH) and PDCI Market Access to support specific medications.
Representing at the Heart Failure Update
The Heart Failure Update is Canada’s largest meeting devoted to heart failure which features both clinical and scientific segments. This year, the HeartLife Foundation will once again be attending the meeting as faculty.
Including patients in major cardiology conferences in Canada is relatively new, but Jillianne and Marc were the first two patients to break through this barrier in 2016. Since then, they have participated as faculty at both the 2017 Heart Failure Update as well as the 2017 Canadian Cardiovascular Congress.
“In 2017, we had our largest presence at the Heart Failure Update with 26 patients and caregivers in attendance. It [the meeting] gives us the opportunity to interact with healthcare professionals and patients/caregivers from across the country,” says Marc.
HeartLife’s Jillianne, Marc, and Dr. Virani, wrote an article in collaboration with Canadian doctors and scientists which was published in the Canadian Journal of Cardiology in November, 2017. Titled ‘The Need for Heart Failure Advocacy in Canada’, the article delves into the key challenges facing the advancement of patient-centred heart failure care in Canada.
It provides a detailed look at targets for health care system redesign and policy initiatives that need to be addressed in order to bring about meaningful change for the state of heart failure. You can read the article here.