Latest / Amplify: A Podcast Powered by Patient Voice Partners / From Wheezing to Leadership: Living with Asthma and Leading Change

Transcript

From Wheezing to Leadership: Living with Asthma and Leading Change · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  Speaker 1: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:10
  Speaker 1: I'm Ursula Mann.
• 0:12
  Speaker: And I'm Brent Cordy.
• 0:14
  Speaker: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  Speaker 1: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:33
  Speaker 2: This episode is sponsored by Medlior Health Outcomes Research.
• 0:37
  Speaker 2: Sponsorship helps support the Amplify Podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and our guests.
• 0:46
  Speaker 2: A little bit about Medlior.
• 0:47
  Speaker 2: Medlior delivers rigorous health outcomes research, generating high-quality evidence to support informed and impactful decision making.
• 0:56
  Speaker 2: On today's show, we're going to be talking to Jeff Beach, who's the CEO of Asthma Canada.
• 1:01
  Speaker 2: Jeff also has lived experience with asthma that we're going to talk about a little bit more.
• 1:06
  Speaker 2: And he had a very interesting path to leadership to be leading the not-for-profit and is also a significant leader within healthcare policy and systems across Canada.
• 1:16
  Speaker 2: Emory, I'm really excited to chat today with Jeff and more about asthma.
• 1:20
  Speaker 2: What are your thoughts about this disease state and what people manage and what they have to deal with?
• 1:25
  Speaker 3: Thank you.
• 1:26
  Speaker 3: I'm also very excited to have this conversation with Jeff as I've dedicated my most of my adult life to lung health.
• 1:34
  Speaker 3: And asthma has been a significant part of that.
• 1:37
  Speaker 3: I have been out of clinical care for some time.
• 1:39
  Speaker 3: So I'm really curious about what has changed, what is different, and then maybe some of the things that the persistent misperceptions out there are.
• 1:50
  Speaker 3: So I'm really looking forward to this discussion and seeing how we can help our listeners think about asthma differently.
• 1:56
  Speaker 2: I appreciate that, Anne-Marie, and I am as well.
• 1:59
  Speaker 2: It's one of those diseases that I feel sometimes can creep up on you and all of a sudden become an emergency.
• 2:04
  Speaker 2: I personally, as a caregiver, have been an eMERGE several times with asthma and low oxygenation saturation, what led to subsequently more treatment.
• 2:14
  Speaker 2: I think it's something that people, there are a lot of misperceptions out there.
• 2:17
  Speaker 2: There is opportunities for some better control, but still something that's really important.
• 2:22
  Speaker 2: And I'd love to dive deeper and learn a little bit more about this.
• 2:24
  Speaker 2: So just before we start some stats to level set us on asthma, this affects 4.8 million Canadians and about 10% of the population.
• 2:33
  Speaker 2: As we were talking about, Amory, very serious.
• 2:36
  Speaker 2: About 300 people lose their lives to asthma every year.
• 2:39
  Speaker 2: And certainly there is healthcare resources and emergency usage.
• 2:43
  Speaker 2: And I always feel the more we can keep people out of emergency, the better.
• 2:47
  Speaker 3: Of course.
• 2:48
  Speaker 2: Symptoms, shortness of breath, regular coughing, wheezing, chest tightness are some.
• 2:53
  Speaker 2: And really it's chronic.
• 2:54
  Speaker 2: I think that's something that people also aren't really necessarily thinking.
• 2:58
  Speaker 2: So chronic inflammatory disease of the airways, and hence the symptoms that people are feeling.
• 3:03
  Speaker 2: Is there anything else that comes to mind, Anne-Mary, that you think of when you think of asthma before we welcome Jeff?
• 3:09
  Speaker 3: Yeah, I think sometimes it gets mixed in with some other respiratory conditions.
• 3:14
  Speaker 3: And that tends to create some of the misperceptions, I think, that are out there.
• 3:20
  Speaker 3: And it can be difficult to diagnose, particularly in young people.
• 3:23
  Speaker 3: So I think there's some confusion around that piece.
• 3:26
  Speaker 3: So looking forward to maybe a little more clarity in some of those areas.
• 3:30
  Speaker 2: I appreciate that.
• 3:31
  Speaker 2: And it is interesting.
• 3:32
  Speaker 2: You had worked in this area for quite some time.
• 3:34
  Speaker 2: I'm curious, what was your most rewarding work situation that you experienced back as a respiratory therapist and working with people with asthma?
• 3:42
  Speaker 3: One of the things that I really tried to focus on with parents of asthmatic children was there's this in a thing we have as parents to want to protect our children.
• 3:52
  Speaker 3: It was really rewarding to help parents teach their children to manage their own asthma so that when they're not with their parents, they feel confident and comfortable.
• 4:03
  Speaker 3: And really it creates a safer environment when a child knows how to manage for themselves.
• 4:08
  Speaker 3: And even getting some school policies changed to allow children with asthma to be able to carry their medications.
• 4:15
  Speaker 3: I think they're things like that were very rewarding for me.
• 4:18
  Speaker 2: That's incredible.
• 4:19
  Speaker 2: Thanks for sharing.
• 4:20
  Speaker 2: And also even just the confidence that kids have to be able to take care of themselves and the lack or reduction in fear, perhaps, for parents saying, if I'm not there, my kid'll know what to do.
• 4:31
  Speaker 2: That's beautiful.
• 4:32
  Speaker 2: Thank you.
• 4:33
  Speaker 2: With that, I'd like to welcome Jeff to the show.
• 4:35
  Speaker 2: We're delighted to have you here today.
• 4:37
  Speaker: Thanks very much, Ursula.
• 4:38
  Speaker: It's great to be with you and Anne-Marie.
• 4:40
  Speaker: And I'm really excited for this conversation.
• 4:42
  Speaker 2: So let's dive right in.
• 4:44
  Speaker 2: Can you tell us a little bit about your lived experience and what happened?
• 4:48
  Speaker 2: What was your first memory when you think back to your childhood or ages that this started to emerge in your own life?
• 4:56
  Speaker: So I was the classic kid with the runny nose all the time.
• 4:59
  Speaker: Allergy, a year-round thing.
• 5:01
  Speaker: They were heightened during certain seasons with high pollen, ragweep, that sort of thing.
• 5:06
  Speaker: We laugh looking back now, but the earliest pictures of me, like when I was at Disney World for the first time, I'm holding tissues or a handkerchief.
• 5:14
  Speaker: I was always blowing my nose.
• 5:15
  Speaker: And that progressed to the point where I was on antihistamines a lot as a child.
• 5:21
  Speaker: I did some allergy shots, immunization as well.
• 5:24
  Speaker: And it really was a journey for me as a child just to try to manage those allergies.
• 5:28
  Speaker: Now that got better over time.
• 5:30
  Speaker: And I think part of it was me understanding what I was actually allergic to and how to manage that.
• 5:35
  Speaker: But as often is the case as I grew older, my allergies subsided a lot to the point where I actually had a cat and then I had another one.
• 5:43
  Speaker: And those were things that I, as a kid, I could have never been around an animal.
• 5:47
  Speaker: But eventually it got to the point where I started noticing some chest tightness, wheezing.
• 5:52
  Speaker: And it was one evening when I was at a friend's place and I started coughing and it just was uncontrollable.
• 6:00
  Speaker: And to the point where I was gasping for air.
• 6:02
  Speaker: And I didn't realize it, but I was having an asthma attack, an exacerbation.
• 6:06
  Speaker: And went to the doctor right after that, was immediately referred to an allergist, did further testing, spirometry testing, and so forth.
• 6:15
  Speaker: And at that point, I was diagnosed with asthma.
• 6:18
  Speaker: And I've been on that journey since that point as well.
• 6:21
  Speaker: But in looking back, it you can see how it all heads up.
• 6:24
  Speaker: And I didn't realize at the time where this was going, but it was really the allergies that were the first respiratory issue that I had.
• 6:32
  Speaker 2: And what happened after that in terms of treatment?
• 6:35
  Speaker 2: What did your doctor say?
• 6:36
  Speaker 2: Were you diagnosed right away?
• 6:37
  Speaker 2: Did you go through a bunch of tests?
• 6:39
  Speaker 2: And maybe talk to us a little bit about the testing for it too, because that testing is quite labor-intensive with the tubing and the amount of breathing that you have to be doing in.
• 6:50
  Speaker: Yes.
• 6:50
  Speaker: So as I mentioned, I was referred to an allergist who did some allergy testing, but also did spirometry because he suspected right away, based on my symptoms that I had, that I was asthmatic.
• 7:01
  Speaker: And so he had me do the spirometry test, which does involve forceful breathing.
• 7:06
  Speaker: It's difficult to do, especially if you're having respiratory symptoms to begin with.
• 7:11
  Speaker: And I think one of the things that we're concerned about is as a child, when I was going through that testing, I was in my late 20s.
• 7:19
  Speaker: For a child who's six, seven, eight, nine years old, it's very difficult for them to do the testing.
• 7:25
  Speaker: Now, there are different types of testing that can be done, but by and large, spirometry, it's the most common and the standard in terms of diagnosis.
• 7:33
  Speaker: So once that diagnosis was confirmed, then I was immediately prescribed a couple of different medications, a rescue inhaler and uh controller medication as well.
• 7:43
  Speaker: And I'm fortunate because the allergist who diagnosed me actually showed me how to use those medications properly.
• 7:52
  Speaker 2: Credible.
• 7:52
  Speaker 2: And I feel like not very typical.
• 7:54
  Speaker 2: Because when you said the allergist did the we'll call it a breathing test for latitudes, but the spirometry, I don't know that's super common.
• 8:02
  Speaker 2: We had a referral situation where we had to go to a different.
• 8:05
  Speaker 2: So isn't that interesting about the specialty that it was one stop shop to show you how to use it as well?
• 8:11
  Speaker: Yeah, it really was.
• 8:12
  Speaker: And this gentleman has long since retired, the doctors I performed.
• 8:16
  Speaker: I don't know if that maybe had something to do with it, that he had been in this practice for so long at that time.
• 8:20
  Speaker: But it's definitely looking back, I didn't realize how wonderful that experience was for me compared to what a lot of other patients and families faced.
• 8:28
  Speaker: I was diagnosed very quickly.
• 8:31
  Speaker 2: What were your parents saying with you in this?
• 8:33
  Speaker 2: Do you recall their reactions and thoughts?
• 8:35
  Speaker: When I was actually diagnosed, I was on my own in my late 20s working.
• 8:40
  Speaker: But when I had conversations with my family, with my parents, my sister, and so on, it was like, oh yeah, that makes sense.
• 8:46
  Speaker: Because, like I said, I was always that kid who was coughing.
• 8:50
  Speaker 2: They could connect the dots thinking that after you made the call to say, here's what I experienced.
• 8:55
  Speaker: So as I said, I was fortunate that this particular doctor actually took time to explain what this meant and what asthma actually is and how it affects people and how to use the medications properly.
• 9:08
  Speaker: Because oftentimes people are just prescribed medications.
• 9:12
  Speaker: Sometimes they're over-prescribed, things they don't need, and then they're sent home and it's that's just a simple thing.
• 9:18
  Speaker: Everybody knows how to do this.
• 9:20
  Speaker: And it's very little monitoring going forward from there.
• 9:23
  Speaker 2: And Jeff, what's a good day versus a challenging day for someone to manage an asthma?
• 9:28
  Speaker 2: How would you describe that?
• 9:30
  Speaker: The most challenging days are those where you're just not feeling well enough to do anything.
• 9:35
  Speaker: For me, the prevailing symptom that I have is a chest tightness, almost like a dull ache in my chest, which I'm now to the point, fortunately, where I know I recognize the early signs of it and I am able to deal with it.
• 9:50
  Speaker: So it doesn't necessarily affect me.
• 9:52
  Speaker: But there are people, you mentioned 4.8 million Canadians who are diagnosed living with asthma.
• 9:57
  Speaker: About 5 to 10% of those have severe asthma, which is not like the type of my asthma is fairly mild, that spectrum of disease.
• 10:07
  Speaker: But there are people who have severe asthma, where the typical inhalers that we use, the rescue medications, don't work well.
• 10:15
  Speaker: And those people are often prescribed multiple courses of oral corticosteroids, which are diseases that will help to control the inflammation and really calm things down.
• 10:25
  Speaker: Medication, rather, that will control the disease for a short time.
• 10:30
  Speaker: But it's not something you should be prescribed over and over and over again.
• 10:33
  Speaker: So people with severe asthma are on a much more difficult path in terms of really finding what it is that can actually help them manage their disease.
• 10:42
  Speaker: And so the good days are you don't have any symptoms, right?
• 10:45
  Speaker: You're able to do the things that you want to do.
• 10:48
  Speaker: You're physically active, you're able to work, go to school, do whatever it is that you're doing in your life without even having to necessarily think about the fact that you have asthma.
• 10:57
  Speaker: Bad days are the ones where you're just not feeling well and you're not able to do things.
• 11:02
  Speaker: And sometimes people do end up in emergency and other situations or hospitalized as well.
• 11:08
  Speaker 3: Jeff, I'd like to pick up on you mentioned that you were prescribed rescue and controller medication.
• 11:15
  Speaker 3: Can you tell a little bit about what does control mean?
• 11:18
  Speaker 3: And does everyone need a controller?
• 11:20
  Speaker: The difference is a rescue inhaler is what people think of as a puffer.
• 11:24
  Speaker: Usually they're blue.
• 11:26
  Speaker: That's to help open up the airways immediately.
• 11:28
  Speaker: So when you're in active symptoms and you're feeling the chest tightness or wheezing, not able to catch your breath, breathlessness, that will help to open up your airways and basically get you through that moment.
• 11:41
  Speaker: What a lot of times people don't realize is that is not intended to be something that you're using all the time.
• 11:47
  Speaker: And so asthma control is that's there's a bit of a misinformation, I would say, or just misinterpretation amongst a lot of patients about what that actually means.
• 11:57
  Speaker: So controller medication is designed to be used for most people every day.
• 12:02
  Speaker: So it's a medication, it's usually a powder form you take, depending on your prescription.
• 12:07
  Speaker: In my case, it's one puff per day in the morning.
• 12:11
  Speaker: And that is basically a medication that's designed to help keep the symptoms under control and manage your disease all the time.
• 12:19
  Speaker: So then when you get to the point where you have symptoms, you may have to use a rescue inhaler.
• 12:24
  Speaker: But a lot of times people who are using their controller medication properly don't need a rescue inhaler at all, or very rarely would.
• 12:30
  Speaker: So that's the difference between the different types of medications.
• 12:33
  Speaker: But in terms of control, what good asthma control looks like is can vary in people's perception from person to person.
• 12:42
  Speaker: From a clinical standpoint, if your asthma's not well controlled, you're having symptoms on a regular basis, you're being woken in the night with wheezing, chest tightness, breathlessness.
• 12:55
  Speaker 2: How uncomfortable, Jeff.
• 12:56
  Speaker 2: I appreciate you mentioning that.
• 12:57
  Speaker 2: People think this happens when you're active.
• 13:00
  Speaker: Certainly for many people who are not well controlled, it'll be flare-ups during activity and physical exertion, but nighttime often tends to be an issue for people.
• 13:10
  Speaker: So they're waking up in the night, they're using the rescue inhaler, which is more like they're relying on it all the time.
• 13:17
  Speaker: You should not be using it more than twice a week.
• 13:19
  Speaker: If you are, the chances are your asthma is not well controlled.
• 13:24
  Speaker: So those are some of the signs or people sometimes having to limit what they're doing.
• 13:28
  Speaker: I've heard people say, Oh, I can't.
• 13:29
  Speaker: I used to participate in a certain sport or certain activity, I can't now because I have asthma.
• 13:34
  Speaker: And so those are all signs pointing to the fact that asthma is not controlled.
• 13:39
  Speaker: Sometimes people think control as being how they get through the day, which we all have to do that.
• 13:45
  Speaker: But the if you're seeing those symptoms, like I'm talking about persistent and happening regularly, then chances are your asthma is not controlled and you should be seeking medical help.
• 13:56
  Speaker 3: I really appreciate you mentioning sport.
• 13:58
  Speaker 3: I think there are some professional and even Olympian athletes out there who live with asthma, who are able to compete at a very high level because they have that kind of control.
• 14:10
  Speaker 3: So I think that's a good message to send out to folks, is you still can do things you love to do if it's under control.
• 14:17
  Speaker: Yeah, for sure.
• 14:18
  Speaker: And as you said, there are professional athletes, there are Olympians who are very open about the fact that they were diagnosed with asthma, but they are achieving great things and they have physical stamina.
• 14:29
  Speaker: So it is possible.
• 14:30
  Speaker: Not all of us are going to be Olympic athletes, obviously, but we can do the things that we want to do within our own physical limitations, things like being able to run or be able to play tennis or whatever it is that you like to do, you should be able to do it.
• 14:43
  Speaker: Even for people with severe asthma, there are a lot of different options available now in terms of medication.
• 14:49
  Speaker: There are biologic treatments that have been a real game changer for people who have struggled with asthma their whole lives and have never been able to control it despite being prescribed multiple different types of medications.
• 15:00
  Speaker: Sometimes these people now are using the more advanced forms of therapy that can really help them.
• 15:07
  Speaker: And also, I think what a lot of people don't think about is the beyond, it's not just about medications, about understanding disease and about understanding what the triggers are.
• 15:17
  Speaker: Most people have triggers for their asthma.
• 15:21
  Speaker: So for me, the biggest triggers I have are dust mites, which those are everywhere.
• 15:25
  Speaker: So it's hard to avoid.
• 15:26
  Speaker: But also things like some scents, like candles, perfumes, not all, but there's certain ones.
• 15:33
  Speaker: I used to shop at the bay a lot, and I would you'd walk through the entrance with all the perfumes, and it was like it's overwhelming that way to pull my glass.
• 15:41
  Speaker: You're holding your breath as you're walking through.
• 15:43
  Speaker: Go really quickly through there, and they try to stop me.
• 15:46
  Speaker: Oh, sir, try this, try that, just keep running through.
• 15:48
  Speaker: It's things like that for me.
• 15:50
  Speaker: Wood fire smoke is another one sometimes.
• 15:52
  Speaker: It's lucky to have a fireplace.
• 15:54
  Speaker 2: Which limits your social, right?
• 15:55
  Speaker 2: Like you're invited to the bonfire party at certain ages.
• 15:59
  Speaker 2: You mentioned 20 university, but you're like, God, do I want to go to that?
• 16:02
  Speaker 2: I do for the social.
• 16:03
  Speaker 2: So that's changes things.
• 16:05
  Speaker: You're right.
• 16:06
  Speaker: And understanding how you manage that.
• 16:07
  Speaker: Most people, if you're going to a bonfire or something, a campfire, you can do that, but don't be sitting right next to it.
• 16:14
  Speaker: Or you know, the smoke blowing into your face.
• 16:16
  Speaker: Put a trigger of something within you.
• 16:18
  Speaker: So I think it's just be realistic and really take the time to understand what those triggers are because they're not the same for all people.
• 16:28
  Speaker 2: I appreciate the map out on triggers.
• 16:29
  Speaker 2: And you mentioned Olympic athletes.
• 16:31
  Speaker 2: And although, you know, far from it, I sometimes there's that misperception.
• 16:35
  Speaker 2: Oh, you can't exercise now.
• 16:37
  Speaker 2: But in fact, exercise makes things better, thins the mucus out, makes daily management better.
• 16:43
  Speaker 2: So I think sometimes that's not necessarily understood either.
• 16:47
  Speaker 2: And certainly a lot of conversations I've been part of that that's still regular, hit the treadmill, go for a walk.
• 16:52
  Speaker 2: It's really good for you.
• 16:54
  Speaker: Absolutely.
• 16:54
  Speaker: Yeah.
• 16:54
  Speaker: We work at Asthma Canada.
• 16:56
  Speaker: We have several patient ambassadors, if you will, people who share their stories of living with this disease.
• 17:02
  Speaker: And one of them that I just when you mentioned that I'm thinking of is our young man who was really struggling with asthma, just even to walk up a flight of stairs.
• 17:11
  Speaker: Some years ago, he decided that he was going to get in shape and decided to start running.
• 17:16
  Speaker: And he talks about how the first day he ran 50 meters or something and he was out of breath.
• 17:22
  Speaker: But he just kept going and he kept layering on that and learning how to run with his disease and how to control it better.
• 17:30
  Speaker: And he now runs marathons.
• 17:32
  Speaker: It's incredible to think about people that have gone from That's incredible.
• 17:36
  Speaker 2: How long did that take him to build up to that?
• 17:39
  Speaker 2: Do you recall?
• 17:40
  Speaker: Something like three, four, or five years, something along those incrementally.
• 17:44
  Speaker 2: Wow.
• 17:44
  Speaker 2: That's incredible.
• 17:46
  Speaker: Think about it, like 15 meters, not very far.
• 17:48
  Speaker: And he was completely breathless at that point to the point now where he actually we had a team in the Toronto Waterfront Marathon.
• 17:56
  Speaker: Oh wow.
• 17:56
  Speaker: We have now for several years.
• 17:58
  Speaker: But so he actually came from where he lives up in northern Ontario down to Toronto and ran in that marathon and compete.
• 18:05
  Speaker 2: That's incredible.
• 18:06
  Speaker: Which is absolutely incredible and inspiring.
• 18:08
  Speaker: And I think for anyone who's living with asthma who thinks, oh, I can't do this, I can't do that.
• 18:13
  Speaker: That's the kind of story that we want to get out there.
• 18:15
  Speaker 2: It really is.
• 18:16
  Speaker 2: And it's motivational to hear people doing better.
• 18:20
  Speaker 2: And speaking of motivational, you pivoted and this became your work career.
• 18:25
  Speaker 2: So tell us a little bit about how your path to patient leadership happened and working in the community and leading a not-for-profit, bringing your personal experience over to that.
• 18:37
  Speaker: So for me, it's actually started really early in my life.
• 18:40
  Speaker: And sometimes you don't realize things that have an impression on you.
• 18:44
  Speaker: I try to teach kids that now they roll their eyes at this point as teenagers.
• 18:48
  Speaker: But when I was a teenager, my dad was heavily involved in the community and was the chairperson for the door-to-door fundraising campaign for the Arthritis Society back in.
• 18:59
  Speaker 2: Oh wow.
• 19:00
  Speaker: And so when I reached, I don't know, 16 or something like that, he gave me a clipboard and the identification.
• 19:07
  Speaker: He said, okay, you're going to do our street, you're going to canvas the neighborhood for a donor.
• 19:10
  Speaker: I was mortified.
• 19:11
  Speaker: I did not the door-to-door ask him.
• 19:13
  Speaker 2: I can understand the daunting task.
• 19:16
  Speaker: I did it because my dad forced me to do it.
• 19:18
  Speaker: But that was my first experience.
• 19:19
  Speaker: The exposure to the nonprofit sector and fundraising and philanthropy.
• 19:23
  Speaker: And when I was in school, and I actually, my initial career aspiration was to become a psychologist.
• 19:31
  Speaker: I wanted to be either a clinical or an experimental psychologist.
• 19:34
  Speaker: And about halfway through my undergraduate degree, I decided I needed to get some experience working in a human service type environment.
• 19:42
  Speaker: So I ended up getting a job with a program that was affiliated with the CNIB, the Canadian National Institute for the Blind and Visually Impaired Young People on a summer work experience program.
• 19:53
  Speaker: And that was a watershed moment for me because that was my first exposure to a health charity, to the work that health charities and patient organizations actually do.
• 20:03
  Speaker: And so that, I didn't realize it at the time, but that sort of opened one door, which led to another.
• 20:08
  Speaker: And fast forward a number of years, that is what I ended up focusing my career on.
• 20:14
  Speaker: And eventually got involved more away from doing direct service work, program work into more administration, fundraising, management.
• 20:22
  Speaker: But I'm fortunate that working in this sector, I'm able to still interact with patients on a daily basis.
• 20:29
  Speaker: And that is really what is most rewarding to me is to know that we're having that kind of impact.
• 20:34
  Speaker: And that's why I gravitated towards this work, and that's why I think I've stayed in this throughout the decades that I've been working in the sector.
• 20:41
  Speaker 2: I think that's beautiful.
• 20:43
  Speaker 2: And thank you for sharing.
• 20:45
  Speaker 2: I can understand why it's motivating every day.
• 20:48
  Speaker 2: Would you mind sharing what are some challenges that CEOs of patient organizations face that you think are perhaps a little bit less understood within the ecosystem among other change makers?
• 21:01
  Speaker: For us, the first thing that comes to mind not surprisingly is funding, right?
• 21:05
  Speaker: We're constantly trying to balance very tight budgets and really trying to navigate the changing landscape.
• 21:14
  Speaker: There are so many external factors that are out of our control around the economy and the environment.
• 21:20
  Speaker: And it can be overwhelming sometimes.
• 21:23
  Speaker: But I think for us, what I've learned to do is really focus on the having a balance between the strategic outlook and really being able to try to move an organization towards a certain goal or certain set of goals in a strategy, but also just navigating that day-to-day environment and knowing that there are going to glitches.
• 21:43
  Speaker: We started 2025.
• 21:45
  Speaker: I don't think any of us would have imagined the shift in the economy and the way that we're now concerned about Canada's energy sector being independent, things like that, that weren't necessarily on a radar.
• 21:58
  Speaker: So you really have to.
• 21:59
  Speaker: Navigate a lot of those external factors, which I don't think people think of.
• 22:03
  Speaker: And I for being in leadership roles in the nonprofit sector, it really is a test, I think, of your resilience and your ability to shift and adapt quickly because things can happen.
• 22:15
  Speaker: You have a situation where certain funding that you're expecting doesn't materialize, or there is a new treatment option that is introduced for a patient population.
• 22:27
  Speaker: I spent many years of my career with cystic fibrosis Canada.
• 22:31
  Speaker: It was during the time I was there that disease-modifying drugs actually became available.
• 22:36
  Speaker: And so our focus as an organization shifted a lot, didn't shift entirely, but a lot of it shifted from research, really focusing on the long-term goals of eradicating the disease to an immediate need.
• 22:51
  Speaker: We have to make sure that Canadians have access to them.
• 22:55
  Speaker: Really shifted the organization to focus not exclusively, but more wet much more so on advocacy and getting those drugs into the hands of patients who otherwise probably wouldn't be with us today if they didn't have those.
• 23:09
  Speaker: Wow.
• 23:10
  Speaker: Yeah.
• 23:11
  Speaker 3: I'd like to pick up on that conversation just a little bit.
• 23:14
  Speaker 3: Because I think sometimes there are myths around how organizations like yours receive funding.
• 23:20
  Speaker 3: And when you receive funding, there are folks who think that then influences the work you do and whatnot.
• 23:27
  Speaker 3: My experience has been different, that there's really an attention to independence and how you balance those things.
• 23:32
  Speaker 3: Would you like to just talk a little bit about when you're working with various types of funders, how you go about maintaining independence and ensuring that you're doing the right thing by the people you serve?
• 23:44
  Speaker: Sure.
• 23:44
  Speaker: Yeah, that's a great question.
• 23:46
  Speaker: And so one of the myths, I think, is a lot of people think that we're part of the government, a health organization like Asthma Canada, that must be funded through the provincial health care budgets.
• 23:56
  Speaker: I can assure you it is not.
• 23:57
  Speaker: We do get government funding occasionally.
• 24:00
  Speaker: Right now, for example, we have a Public Health Agency of Canada grant that we're just wrapping up around immunization awareness and dispelling some of the myths and why it's important for people with asthma and other COPD and other lung health conditions to be immunized.
• 24:14
  Speaker: But by and large, we're not part of the government.
• 24:17
  Speaker: We're not funded.
• 24:18
  Speaker: Our operations are not funded by government dollars.
• 24:21
  Speaker: We are a registered charity, and most health-related nonprofits are.
• 24:25
  Speaker: So we raise from the public.
• 24:27
  Speaker: So we rely on donors to give us donations to participate in fundraising activities that we run.
• 24:33
  Speaker: I mentioned earlier with the young man I was talking about running in the marathon.
• 24:37
  Speaker: That's one of our fundraisers, is we all go do a peer-to-peer campaign around that.
• 24:42
  Speaker: And it's we're constantly looking for ways to engage with the public who are able to support us as donors.
• 24:49
  Speaker: We also have corporate funding that comes to us through non-related corporate entities.
• 24:56
  Speaker: For example, sometimes some of the banks will fund organizations like ours or other corporations who maybe have an interest in health or health research.
• 25:04
  Speaker: We do occasionally get funding from other foundations as well that are focused on some of the areas.
• 25:12
  Speaker: A lot of it has to do with research and research goals that we might provide as a health charity, which is a big part of what we do.
• 25:18
  Speaker: And we also receive funding from industry partners within the pharmaceutical industry.
• 25:23
  Speaker: I think that's where you're talking about sometimes there are eths in terms of what does that mean and how does that influence the work that we're doing.
• 25:31
  Speaker: And I can assure you, though, there are very tight compliance regulations on our side as well as on the pharmaceutical industry partner side.
• 25:39
  Speaker: So they are bound by a set of ethics and regulations that are very clear about what they can fund and what they can't.
• 25:46
  Speaker: And it's usually limited to things around patient education and awareness campaigns, that sort of thing.
• 25:53
  Speaker: So we are an independent organization.
• 25:56
  Speaker: As the CEO of Asthma Canada, I report to a board of directors, our board of directors, these are all volunteers who bring different skills and experiences with the disease, but also their professional backgrounds that they contribute.
• 26:09
  Speaker: And we run as a completely independent business.
• 26:11
  Speaker: So if we're getting money from a pharmaceutical partner, it's not to push their agenda.
• 26:17
  Speaker: It's because they support the work that we do.
• 26:20
  Speaker: And at the end of the day, one of our values is that we're patient-centered.
• 26:26
  Speaker: And so for us, we don't do anything unless it's good for the patient.
• 26:29
  Speaker: That is like that basic lens through which nothing gets through that filter.
• 26:34
  Speaker: So if something is happening and at the end of the day, it's not good for our patients.
• 26:39
  Speaker: And if we're not sure about that, we'll consult with advisors to make sure that it is.
• 26:42
  Speaker: We also, in addition to our board, we have an independent medical and scientific advisory committee that we work with.
• 26:49
  Speaker: These are healthcare professionals, researchers, RTs, psychologists, respirologists, ENTs, people who work with patients directly, and are also, in some cases, researchers or clinician researchers.
• 27:03
  Speaker: So everything that we do gets put through that filter as well.
• 27:07
  Speaker: So anything on our website, any of the patient education materials that we produce, they've all been vetted not just by our staff, but also through our professional advisors on that Medical Scientific Advisory Committee.
• 27:19
  Speaker: So we're very optimant to say that what we produce is evidence-based, credible, and we are an independent organization that is not driven by any funders at all.
• 27:30
  Speaker 2: Yeah.
• 27:31
  Speaker 2: Thank you for that.
• 27:32
  Speaker 2: Thank you for sharing all of that.
• 27:34
  Speaker 2: That's a very robust and comprehensive overview of the group and how things are working together.
• 27:39
  Speaker 2: And speaking of the work you do, I'm interested if you had perhaps a crystal ball or a magic wand, what would you like to change?
• 27:47
  Speaker 2: What one thing would you like to change about how patient voices are integrated for asthma care into healthcare decision making?
• 27:55
  Speaker 2: What would that look like?
• 27:56
  Speaker: Specific to asthma care, I think for us, it's there's a couple of things that I would want to change.
• 28:02
  Speaker: One is that patients need to understand that asthma is a serious disease and it is something that they need to manage.
• 28:08
  Speaker: Even yes, there are times where people may progress through different levels of the disease where symptoms may not be active, maybe their disease is well controlled, but they're still it doesn't go away.
• 28:21
  Speaker: It doesn't completely go away.
• 28:23
  Speaker: So understanding and accepting that, but not letting that limit you, I think is one thing.
• 28:28
  Speaker: But more specific to your point, Ursula, is that people have to advocate for themselves.
• 28:33
  Speaker: They have to be their own best advocates.
• 28:36
  Speaker: So organizations like mine provide lots of tools to allow people to be able to do that.
• 28:41
  Speaker: So we have asthma control tests.
• 28:43
  Speaker: We have we last year for World Asthma Day, we launched the simple, just a few questions, symptom checker, just things to get you thinking.
• 28:50
  Speaker: Well, what are your symptoms?
• 28:52
  Speaker: You can then download that or print it off and take it to your doctor and have a conversation and say, look, I'm concerned.
• 28:58
  Speaker: According to this information, my asthma might not be well controlled.
• 29:02
  Speaker: Can we talk about that?
• 29:03
  Speaker: So taking charge of that.
• 29:05
  Speaker: And then I think also looking in that crystal ball from a patient voice perspective, I think it's really important.
• 29:12
  Speaker: And I'm hopeful that patient voices will continue to evolve in terms of how the health system responds to the needs of patients, listening to the voices of patients and actually reacting and making changes based on those voices.
• 29:28
  Speaker: So when we engage patients in advocacy, we're getting them to share their stories, but also helping people who are decision makers, whether that be about drug access or whether it be healthcare resources or environmental concerns that we might advocate for.
• 29:43
  Speaker: We want patient voices to be front and center because at the end of the day, when we've met with elected officials, they may not remember me, and that's fine.
• 29:54
  Speaker: They will remember the patients, the people who are really struggling, who are really pushing forward with this.
• 30:00
  Speaker: And that's something that I hope we can continue to see evolve.
• 30:04
  Speaker: And also patient involvement in research right from the beginning, in terms of clinical trial design.
• 30:10
  Speaker: And I think the pharmaceutical industry is really taking great strides forward in terms of involving patients earlier in the process and being more transparent about that.
• 30:20
  Speaker: Which is really encouraging to me because that's why we're here, right?
• 30:24
  Speaker: It's because of the patients.
• 30:25
  Speaker: That's why pharmaceutical companies exist, is because of the patients.
• 30:29
  Speaker: So we all serve as health charities or within industry.
• 30:33
  Speaker: So putting the patient voice front and center is extremely important for all of us.
• 30:38
  Speaker 2: I really appreciate this conversation.
• 30:40
  Speaker 2: And we always like to end on fun note as well, Jeff.
• 30:44
  Speaker 2: So interested if you think about the next six months and upcoming, what are you most excited about professionally and personally?
• 30:52
  Speaker 2: We're going to make sure we want to hear about something that's exciting in your world too.
• 30:55
  Speaker 2: But maybe just give us a highlight of asthma Canada and a highlight of you.
• 31:00
  Speaker: Sure.
• 31:00
  Speaker: Okay, we'll start with asthma Canada.
• 31:02
  Speaker: So say what I'm looking forward to this year is we are working on some awareness campaigns to help drive not necessarily asthma awareness because asthma is a disease.
• 31:13
  Speaker: Unless you're living off the grid and don't have asthma yourself, chances are you're near someone right now that's living with asthma.
• 31:20
  Speaker: We're talking 10% of the population.
• 31:22
  Speaker: So within your family, your circle of friends, it's not necessarily about awareness for us as a metric.
• 31:27
  Speaker: It's more about the concern and taking it seriously.
• 31:30
  Speaker: So we're trying to help people understand that asthma is a disease that needs to be taken seriously.
• 31:36
  Speaker: So we're going to be launching some different initiatives around World Asthma Day, which is the first Tuesday of May.
• 31:42
  Speaker: I believe it's May the 5th this year.
• 31:45
  Speaker: I should know that date.
• 31:46
  Speaker: It should be burned.
• 31:47
  Speaker 2: There'll be lots coming that day.
• 31:49
  Speaker: And then throughout the month of May, it's there's a lot of disease groups and patient groups have these awareness floods.
• 31:55
  Speaker: We do that throughout May.
• 31:56
  Speaker: During that time, we'll really be ramping up some of these campaigns.
• 32:00
  Speaker: And so I would encourage people to keep an eye out for that because we are excited about the response.
• 32:05
  Speaker: And when we see people signing up for our programs, we see people signing up to receive our newsletters and so forth.
• 32:12
  Speaker: It's just an indication that people are actually reaching.
• 32:14
  Speaker: Those messages are reaching people and that they're taking their asthma more seriously, which is at the end of the day, a big part of what we want.
• 32:20
  Speaker: And then on the personal side, as we're having this conversation, it's been a very cold winter.
• 32:27
  Speaker: And so we're forward to that being done and some warmer weather.
• 32:31
  Speaker: My family and I are planning a vacation this summer that we're very much looking forward to.
• 32:36
  Speaker: The details aren't exactly nailed down yet, but we're looking forward to just getting away, getting out of the country, spending a little bit of time together and enjoying some downtime and enjoying some better weather as well.
• 32:49
  Speaker 3: How lovely.
• 32:50
  Speaker 3: Maybe I'd just like to say thank you for spending time with us today.
• 32:55
  Speaker 3: But also thank you for the leadership that you bring to Asthma Canada.
• 33:00
  Speaker 3: Your organization does great work.
• 33:03
  Speaker 3: I know this through my own personal experience working with your organization.
• 33:07
  Speaker 3: And I think your personal journey that you lend to your leadership style really brings a lot to the organization.
• 33:14
  Speaker 3: So thank you for your dedication to this work.
• 33:17
  Speaker: Oh, you're most welcome.
• 33:18
  Speaker: It's my pleasure.
• 33:19
  Speaker: And I thank you for the opportunity to be part of this conversation today.
• 33:23
  Speaker 2: It's been our pleasure, Jeff.
• 33:24
  Speaker 2: And what really resonated with me on the personal front is a good day feels like you don't have asthma.
• 33:30
  Speaker 2: And that's certainly how I feel in our household as well.
• 33:34
  Speaker 2: So thank you for sharing that and all the work that you're doing, as Anne Marie said at the group.
• 33:39
  Speaker 2: We look forward to more time with you in several different capacities.
• 33:43
  Speaker 2: And thank you for spending time with us today and sharing all this information.
• 33:47
  Speaker: Wonderful.
• 33:47
  Speaker: Thank you both.
• 33:52
  Speaker 2: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 33:57
  Speaker 2: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 34:04
  Speaker: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 34:10
  Speaker: Visit patientvoicepartners.com to sign up or learn more.
• 34:15
  Speaker 2: If you're a clinician, advocate, innovator, or system leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 34:26
  Speaker 2: You're also welcome to join Anonymously if preferred.
• 34:29
  Speaker: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 34:36
  Speaker 2: Until next time, stay connected.
• 34:38
  Speaker 2: Your voice matters.