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PHA Canada is developing a short 15-minute survey to collect updated information on how pulmonary hypertension (PH) impacts the lives of patients and caregivers across Canada. From questions about the time it took to get a correct diagnosis to understanding how current treatments and their side effects impact patients' lives, the information gathered in this survey will not only influence PHA Canada's future strategies, it will also help guide the direction of PH research and drug approvals in Canada. 
For more information about Joan, click here.

Bringing the impact of PH into focus

For those diagnosed before 2013, you might remember a similar survey in Canada called the Burden of Illness Survey. PHA Canada conducted a survey of 179 patients and caregivers between September 12 and October 25, 2013.

The information gleaned from that first survey was groundbreaking for bringing into focus the physical, emotional, psychological, and financial impacts of a PH diagnosis in Canada. For example, in many surveyed patients, the time from first symptoms to diagnosis was two years or longer.

PHA Canada used the survey results to determine how to best help the PH community moving forward, including what gaps needed to be filled in terms of disease awareness, time to diagnosis, and the impact of PH on quality of life. It confirmed for many PH patients and their families that they were not alone in experiencing significant life changes since their diagnosis.
The information from the Burden of Illness Survey was essential to PHA Canada. Patient advocates used it to raise awareness of PH among decision-makers and also when providing patient evidence during the drug approval and funding process for new medications like macitentan (OpsumitTM), selexipag (UptraviTM), and riociguat (AdempasTM).  

An opportunity to help guide the rare disease strategy in Canada

The speed of technological advances in genetics and artificial intelligence means that potentially life-changing therapies could be just around the corner for many rare diseases. Because of this expected wave of innovative therapies and years of tireless advocacy by patients from many rare disease communities and patient organizations (like PHA Canada), the federal government has finally recognized the need to develop a strategy to better to manage the rare disease drug approval and funding process.

In their 2019 budget, the Canadian federal government committed to spending up to $1 billion over two years starting in 2022–2023, with up to $500 million per year on an ongoing basis to help rare disease patients access the drugs they need. If the rare disease strategies in some other industrialized countries are any indication, decisions about the direction of rare disease drug research and access to innovative therapies are expected to be driven, in part, by patients' lived experiences.

While the information in the 2013 survey was invaluable at the time, current changes in the rare disease landscape mean it is more important than ever for PHA Canada to have up-to-date information on the impact of PH on patients, their families, and their community.  

PHA Canada needs to hear from PH patients, caregivers, and health care providers across Canada

Where have things improved? How do patients feel about their medications, the side effects, their quality of life? Where is treatment falling short? This new survey will dive deeper into patient experiences, along with the experiences of caregivers and health care providers.

Rare disease communities are, by their very definition, small communities. As members of a small community, we often know more about our disease than people who live with more common illnesses. And because we are keenly aware that PH manifests differently from patient to patient, it should come as no surprise that PHA Canada needs to hear from patients and caregivers across the disease spectrum and across this country.
This new survey is an opportunity to gather as much patient lived experience as possible in one place at one time. No matter where you are on your PH journey, your voice matters. Your lived experience matters. PHA Canada needs to hear from you. Share your experiences and spark some change!

Your answers will not only become the basis for PHA Canada’s future strategies, they will also guide the future direction of PH research and drug approvals in Canada. 

So, when PHA Canada launches the Canadian PH Community Survey this World PH Day (May 5th), please take the time to complete it. Though it shouldn’t take more than 15 minutes to complete, the impact of its results could last a lifetime.

Joan Paulin

Joan Paulin, Research, Caregiver & PHA Canada Advocate

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