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.
“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.”
An extensively researched, new CPFF report Access to Oxygen Therapy in Canada, as well as a one-page highlights document, are now available online. The full report is the result of data collected through surveys of PF patients, caregivers, healthcare professionals and oxygen providers. (All of these supporting survey results are also online, along with supporting research papers.) Based on these findings, it’s clear there are huge inequities in access to home oxygen therapy across the country including:
- Thousands of Canadian PF patients do NOT have access to timely oxygen deliveries, while others have NO access at all.
- 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 can get access to oxygen therapy, their costs and reimbursement criteria varies widely from province to province, creating significant inequities based on where Canadians live.
CPFF will be using this latest report to advocate with the provinces and territories to improve access to oxygen therapy for people living with PF.
Patients and medical professionals say pulmonary fibrosis patients have the right to:
- Disease-specific qualifying criteria. Create standardized medical criteria based on the unique needs of pulmonary fibrosis patients.
- Reimbursement for all. Costs must be fully reimbursed for ALL people receiving home oxygen therapy.
- Oxygen therapy in all communities. The health systems must provide the oxygen therapy patients need, regardless of where they live.
CPFF fellow investigates unclassifiable ILD
A native of Winnipeg, Dr. Leigh Minuk made her way to Toronto to complete her residency in internal medicine and then respirology. While at Toronto General Hospital, she became familiar with ILD patients and their struggles and was determined to help make a difference in their lives.
As a CPFF Robert Davidson fellow from September 2022 to September 2023, she honed her clinical and teaching skills and undertook a research project looking at the clinical and radiological characteristics of patients with unclassifiable interstitial lung disease (ILD), which is how about 10 per cent of ILD patients are categorized.
“When we cannot determine a specific ILD diagnosis, it poses various challenges for patients and their health care providers in creating a treatment plan and estimating a prognosis,” says Dr. Minuk. “It can be unsettling and stressful for patients, when we cannot make a more precise diagnosis, and tell them exactly type of ILD they have.”
CPFF provides feedback to federal government on appropriate use of medicines
Thank you to everyone who took the time to complete the short survey on the appropriate use of medicines.
Appropriate use of medicines refers to taking the right medicines at the right time and with the right information provided by prescribers and drug manufacturers. For people with pulmonary fibrosis (PF), this is an important element of treating and managing this rare disease.
The responses to the survey questions are extremely valuable and were shared with the Appropriate Use Advisory Committee on the development of a Canadian appropriate use strategy.
The survey responses received clearly indicate the need for:
- Improved local access to prescription drugs for PF
- Responses indicated challenges related to having to travel to pick up prescription drugs
- Provincial coverage of prescription drugs for PF
- The cost of particular PF drugs is prohibitive for many unless covered by provincial formularies or private coverage
- Information to help people living with PF manage the side effects of their prescription drugs
- Respondents want to receive this information from their primary care provider to help manage the side effects of their prescription drugs, including nausea, loss of appetite, etc.
You can read the 2023 Interim Report from The Appropriate Use Advisory Committee, and the CPFF responses to the survey on the report on the CPFF website.
Thank you again for your participation in this survey. Your insights are critical to ensuring that the voice of the PF community across Canada is heard by all policymakers.
We’ve almost reached our Awareness Month goals
Watch our short video with Sharon Lee, CPFF Executive Director, for a Pulmonary Fibrosis Awareness Month recap.
Well folks, we’re very close now to our $100,000 fundraising goal for Pulmonary Fibrosis Awareness Month. As of Monday, October 2, more than 750 people donated a total of $94,818 to support people living with the disease and to invest in awareness, advocacy, education and research. Thank you!
If you participated in a walk or other event, you may want to check in with your supporters and make sure they’ve sent in their pledges. Or if you haven’t done so, make your own donation today. The Awareness Month campaign will stay open until Friday, October 6.
We’re also getting close to our Virtual Walk goal to collectively walk across Canada during the month of September. That’s 6,818 kilometers! So far, we’ve walked 5060 kilometers. Remember to log the kilometers you walked in September on the CPFF app.
Don’t forget to check out our photo gallery. You may see your face, or those of your friends and family if they took part in Awareness Month events. And, if you’ve got photos, please add them to the gallery, for others to enjoy. Here’s a quick run down of the community walks so far:
Run the Farm for PF, Avonmore, ON
- 110 people registered
- 8 teams registered
- $27, 340 raised
Clarke Walk for PF, Calgary, AB
- 131 people registered
- 9 teams registered
- $15, 840 raised
Robert Davidson Walk for PF, Markham, ON
- 56 people registered
- 6 teams registered
- $10,515 raised
Khan Family Walk for PF – Montreal, QC
- 80 people registered
- 3 teams registered
- $19, 430.85 raised
Watch September’s webinars online
Pulmonary Fibrosis Awareness Month is not just about fundraising. It’s also about education. Last month, CPFF hosted five informative and inspiring webinars. If you missed the live broadcasts, you can watch the video recordings at any time here. Four of the them are available now, with the fifth coming shortly.
- If you’re looking for some inspiration watch Paralympic Voices of Hope.
- Want to know more about using oxygen? Then Oxygen 101 with VitalAire is for you.
- Do you, or someone you know, have connective tissue ILD, then you need to watch ILD in Rheumatoid Arthritis, Scleroderma and other Connective Tissue Disorders.
- For information about treatments to help you manage the symptoms of ILD, including cannabis, watch Palliative Care for Interstitial Lung Disease: Exploring Cannabis.
- Interested in another auto-immune disease, myositis, and how it is treated when it affects the lungs? See Advances in Myositis-Associated Lung Disease Treatment.
You’ll also find a vast array of previous videos on other educational topics as well as patient stories in our video library. Check it out anytime.
A young woman reaches out and increases awareness of PF
Two years ago, Kultaj Kaur was encouraged by her high school teacher to develop an open-ended inquiry project as part of her self-directed learning. Just 15, she created a podcast called “Hey Alexa…Am I Dying?,” covering a range of health-related topics aimed at young adults, including a recent episode on pulmonary fibrosis.
Now 17, Kultaj has continued to produce her podcast, researching the topics online and interviewing various experts. Topics range from the history of the Spanish flu to indigenous inequalities in healthcare and from depression to pulmonary fibrosis. It is this last topic which caught our attention.
Kultaj reached out to the Canadian Pulmonary Fibrosis Foundation and interviewed our Executive Director Sharon Lee for this recent episode and gave a brief summary of the disease, with information from our website, along with the interview.
While many of her topics relate more directly to her young adult target audience, some do not. Asked why she chose pulmonary fibrosis, Kultaj says, “I was curious about diseases that affect people’s lungs and how young people are still doing things that impact their lung health, now and for the future, like smoking and vaping. When you go into the washroom at school, there are students smoking. Pulmonary fibrosis also caught my attention, because it’s not very well known.”
Why did she choose to do a podcast series about health? “I love podcasts,” she says, “hearing people’s stories and opinions and learning new things.” She is also interested in a career in the medical field. “I just knew this was something I could be passionate about, and I’m still doing it two years later.” She’s completed 17 episodes so far, along with school, a job and family commitments.
As for the name of her podcast, Kultaj admits that young people ask “Alexa” everything these days: the weather, entertainment, schoolwork, and questions from the dinner table. (Alexa is the name of Apple’s version of a smart home speaker.) “When I asked Alexa, ‘Am I dying?’ it responded that she was not ‘qualified to give medical advice.’”
A final benefit of creating podcasts for Kultaj is that it has increased her confidence. “I want to show my peers that you don’t have to be afraid to put yourself out there and try something new,” she says. “It can be scary, but don’t worry about what other people might say. Give it a try and you may find something better than you expected.” Advice that is fitting for people living with pulmonary fibrosis too.
Patient survey on sexual activity in ILD now in French
Earlier this year, we told you about a research study on sexual activity in ILD being conducted by the University of Calgary. In order to increase engagement, the questionnaire has been translated into a few languages, including French.
If you are interested in participating in this anonymous survey, please check out the survey in English or French.
Hope deals with wildfire smoke and explains how COPD and PF differ
In this month’s comic strips, Hope and Ollie deal with wildfire smoke, which can be especially dangerous for people with pulmonary fibrosis (PF), and discuss the difference between chronic obstructive pulmonary disease (COPD) and PF.
Visit the Hope and Ollie webpage to see all of the comic strips published to date. Let us know what you think by sending your feedback to [email protected].