Many of Canada's 30,000 PF patients who struggle to breathe, can't get the oxygen they need.
Markham, Ontario--(Newsfile Corp. - September 18, 2023) - These last few months have produced unprecedented damages and devastation for millions of Canadians due to wildfires across the country. Along with this disruption, wildfires have brought choking wildfire smoke, affecting millions in both rural and urban settings and preventing people from being able to exercise outdoors safely, or to even just catch their breath.
While the wildfires will eventually all be extinguished, for the more than 30,000 Canadians suffering from pulmonary fibrosis (PF) – a lung disease that damages and scars lung tissue irreversibly and reduces oxygen flow to the body – every day will continue to be like breathing in wildfire smoke.
Survival rates lower than some cancers
Pulmonary fibrosis looms large over the lives of patients and their families, killing more than 3,000 Canadians annually, with more than 14,000 new patients expected to be diagnosed in 2023. Raising awareness of their ongoing battle is why September is Global PF Month, when the Canadian Pulmonary Fibrosis Foundation (CPFF) does its best to help raise awareness of PF, encourage early diagnosis, and support our medical professionals in understanding and diagnosing this life-threatening disease.
Calgary resident Stan Hendriksen explains how excruciating it is for PF patients to breathe every day.
See video at https://cpff.ca/on-demand-videos/patient-stories/stan-hendriksens-journey-with-pf/
"It's like trying to breathe while someone is standing on your chest," explains Calgary resident Stan Hendriksen, "it basically suffocates you slowly over a long period of time." For some patients, medication and physiotherapy can slow the progress of the disease, however Hendriksen was able to get a lung transplant in June 2023, the only long-term treatment for PF.
Breathing has to be a fundamental human right and equal for all Canadians
For people living with PF and their families, receiving oxygen therapy is often critical in functioning day to day. Without supplemental oxygen, their lungs aren't able to supply the body with sufficient oxygen, leaving them in a constant state of breathlessness.
Based on CPFF's newly released Access to Oxygen Therapy in Canada Report, which surveyed PF patients, health care professionals and oxygen providers, it's clear there are huge inequities in access to home oxygen therapy across the country including:
- Oxygen delivery to Canadians living with pulmonary fibrosis is a national issue, especially in rural and remote areas.
- Two thirds of healthcare professionals say their provincial guidelines do NOT allow them to prescribe oxygen therapy to all who need it, resulting in 20 percent of patients not getting oxygen therapy when needed.
- In cases where patients are able to get access to oxygen therapy, their costs and reimbursement criteria varies widely from province to province, creating inequities based on where Canadians live.
Advocating for a patient charter of rights for oxygen
"Breathing with PF won't get any easier unless all Canadians can get equal access to home oxygen therapy," says CPFF Executive Director Sharon Lee. "Which is why CPFF is helping PF patients speak up for their own basic rights around breathing, advocating for provincial governments to provide patients with the oxygen they need, when they need it."
Opening the door to a day in the life of a PF patient, caregiver, family member or researcher
Pulmonary fibrosis is a relatively unknown killer, even in the medical community. It's this lack of awareness that can delay diagnosis and treatment which can drastically reduce the quality of life for PF patients.
More than 30,000 Canadians with pulmonary fibrosis understand and relate to the first-hand accounts of these PF patients.
See video at https://cpff.ca/patients-and-caregivers/pf-resource-library/video-library/#patient
Through the power of video, CPFF is helping PF patients and their families tell their stories: from challenges around diagnosis to the daily struggles they cope with. Media are able to interview a PF patient, caregiver, or medical professional by contacting [email protected] or can learn more about these powerful short stories here on the CPFF web site.
Another quick way to experience the breathing challenges of PF patients is by taking the Pucker Up Challenge, a 10-second activity that is raising the eyebrows of people around the world to the everyday struggles that PF patients face.
Walk a mile in the shoes of a pulmonary fibrosis patient by taking 10 seconds to do the Pucker Up Challenge, an eyebrow-raising look at the difficulty of something so simple....breathing.
See video at https://cpff.ca/on-demand-videos/pucker-up-challenge/pucker-up-around-the-world-for-pf/
Global pulmonary fibrosis month: Building community awareness and support
To help increase awareness and early diagnosis, CPFF is also hosting a number of different activities this month including:
- Free online education – in-depth webinars for both health care professionals, PF patients and family members on PF-related issues.
- Community fundraising events – including fundraising walks held in honour of family members in locations across the country.
- "My PF started with…" – a campaign recognizing the costs of not diagnosing PF early on and identifying that for some, PF can start with:
- A cough that wouldn't go away
- Shortness of breath when climbing up stairs
- Fatigue they just couldn't escape
Explore the impacts of an incurable disease directly
Interested in interviewing a patient, caregiver, or physician about the challenges of pulmonary fibrosis? Want to know more about Pulmonary Fibrosis Month here in Canada? Check out the Canadian Pulmonary Fibrosis Foundation web site or contact [email protected].
To view the source version of this press release, please visit https://www.newsfilecorp.com/release/179620