When Lived Experience Becomes a Calling: Building Advocacy Around IBD and Better Care

What does it take to turn lived experience into lasting change for patients? Gail Attara joins Ursula Mann and Anne-Marie Hayes to share how growing up with a mother living with Crohn’s disease shaped her commitment to advocacy. Together, they explore the impact of inflammatory bowel disease beyond the gut, the importance of medication coverage, and the work behind patient organizations. Gail also offers candid insights into funding, accountability, and what meaningful collaboration requires to build better, more individualized care.

Episode Highlights

• 02:25 — Why healthcare cannot be one size fits all: Gail’s red-stiletto analogy illustrates why policies must reflect different patient needs.
• 03:22 — Three decades of advocacy: Gail introduces the two organizations she leads and explains the origins of the Gastrointestinal Society.
• 04:19 — When lived experience becomes a calling: Her mother’s experience with Crohn’s disease—and the blame she faced—helped shape Gail’s advocacy.
• 08:01 — New hope in IBD treatment: Moving beyond symptom management toward therapies that can change the course of disease.
• 09:00 — Trusted education and medical collaboration: How gastroenterologists help review patient resources and support advocacy.
• 10:20 — IBD beyond the gut: Exploring mental health, the gut–brain connection, and the broader burden of chronic illness.
• 11:48 — Medication approval versus coverage: Why an available treatment may still be out of reach for the person who needs it.
• 12:18 — Why patient organizations matter: Helping people navigate healthcare, access reliable information, and evaluate an organization’s credibility.
• 19:11 — Ethics and independence: Gail discusses fundraising boundaries and her organizations’ approach to product endorsements.
• 22:53 — Making patient voices part of drug reviews: Gail reflects on advocating for patient-group submissions to the Common Drug Review.
• 25:41 — Care that recognizes individual needs: Why treatment coverage must account for differences between patients.
• 28:05 — Behind the scenes of collaboration: Funding pressures, unequal workloads, and fair compensation.
• 31:09 — Supporting patients in everyday life: Employer education and free resources bring digestive-health information into workplaces and communities.
• 36:57 — Advocacy in action: Helping connect a patient needing an intestinal transplant with political support.
• 39:47 — What authentic collaboration requires: Respect, addressing harmful behaviour, and returning to a shared mission.

Links and Resources

• Connect with Gail Attara on LinkedIn
• Gastrointestinal Society and Canadian Society of Intestinal Research
• GI Society Programs and Services
• Patient Voice Partners — Learn More or Join Patient Voice Connect

About Gail Attara

Gail Attara is Chief Executive Officer and Co-Founder of the Gastrointestinal Society and President of the Canadian Society of Intestinal Research. With three decades of leadership in patient advocacy, she champions trusted digestive-health education, patient involvement in healthcare decisions, and better access to appropriate treatment. Her family’s experience with chronic illness helped shape her commitment to keeping patients at the centre of care.

Disclaimer:

The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates.

Medical Disclaimer:

The content shared on Amplify is for informational and educational purposes only.

Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.

Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Transcript

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SPEAKER_02 0:01

Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations. I'm Ursula Mann.

SPEAKER_05 0:12

And I'm Brent Court. Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.

SPEAKER_02 0:21

From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.

SPEAKER_03 0:59

In that disease state, and many others. We're also going to do something a little different today, and that's go behind the curtains. There's a lot of things that people don't know. I worked in industry for a long time. I had a lot of learnings about patient organizations, how they're set up, the different structures, and even sometimes how things work between organizations. So I'm pretty excited about today's show. And Anne Marie, I've so enjoyed the conversations that we had. Your reflections on thinking about what we're about to talk about, I always find so exciting. So over to you for a sec. What are your thoughts on today's conversation?

SPEAKER_04 1:38

Well, one of the reasons I really wanted to join you on the show today was because I've been observing Gail in action for many years. She's a veteran in her field. I have a few years behind help myself. I've watched her command rooms, I've watched her shift policies, I've watched her just get large groups of people to think a little bit differently, to do a little bit differently. So I was just very excited about having a chat with her tonight and seeing what is on her mind. No.

SPEAKER_03 2:10

I love that, Anne-Marie. And when I think of Gail, two words come to mind: one is collaboration and the other is stilettos. But that, of course, comes with a story. I have to explain why I'm saying stilettos. So this is a story I use sometimes, and it's just one I can't get out of my head. But I've learned so much from Gail over the years. I have always appreciated how she views things and how she thinks about bringing people together and how she thinks about making changes. So here's the stiletto story, and it has to do with healthcare policy. What if the government said to us, Congratulations, everybody is getting shoes? We're going to give everybody a pair of shoes. It's fantastic. You're so lucky you all get a pair of shoes. But then dot sub note the pair of shoes that you're all getting is size six red stilettos. Would that be helpful to you? Or would that be problematic? And the bridge to policy is it's health is not one size fits all. How can we make things bigger and better and more inclusive for different people? So had to share that before we start. Gail, so delighted to have you join today. And I'm going to welcome you to the show and would love for you to introduce yourself and tell us a bit about you and your background.

SPEAKER_00 3:22

Okay, thank you. It's great to be here. I have been the lead of two organizations for a long time. In March, I celebrated 30 years as the lead of the Canadian Society of Intestinal Research, which is going to turn 50 this year. And then in about 2008, I co-created with two gastroenterologists the Gastrointestinal Society. And there are two differences. The Canadian Society of Intestinal Research is provincial, and I'll get into a little bit later why that matters. And then the Gastrointestinal Society is a national organization, both registered charities, but different in two in very distinct ways. And so combining those organizations, I've been in the leadership for 30 years. So it's pretty cool. Wonderful.

SPEAKER_03 4:12

That is really cool. I'm going to take you back to when things started. Tell us a little bit about what made you decide to start. I'll call it GI Society for short, but Gastrointestinal Society, starting that group. How did things come to be?

SPEAKER_00 4:27

I'd like to take it back to the Canadian Society of Intestinal Research and why I applied for the job and why it mattered is that I grew up with a mother who had Crohn's disease, which is an inflammatory bowel disease. And the CSIR covered that area. And I thought, oh, I know about this because I lived with someone who had this disease. And I thought, oh, I know about this and I'd like to help. And so that's how I ended up starting that job. But the barrier in that CSIR was that it was provincial only. And we extra-provincially registered every year so that we could do business other places, but having a national charity status is a different thing. So the Gastrointestinal Society arose from that. And we still work together. CSIR and GI Society co-own the badgut.org website that we have, and we share a lot of assets and resources. But the reason we didn't let go of CSIR is because it's got some legacy funding. We've got endowments and structures in place that you just don't want to let go of. But the Gastrointestinal Society has new things to forge. So there's still a lot of cool things that we do, but that are different from each other.

SPEAKER_04 5:32

I imagine that being the child of somebody living with Crohn's would have had a very big impact on you. Are there just sort of a few things that just stick out? I'm just thinking about some of our listeners who maybe have somebody in their own family.

SPEAKER_00 5:48

So I think the biggest thing that bothered me when I was a child is that everyone in the family blamed my mother for her condition because they didn't have it. So she must be doing something wrong to have this condition. Of course, I didn't really think that back then, but I know for a fact now that it isn't something she did. She has an organic disease, and it's a chronic disease, and there is no cure. And yet she was blamed. And that part brought out the advocate in me because I don't think that we should be blamed for the conditions we live with. We have some responsibility for things in our lives, but we also are living with conditions that are probably have a genetic base or an environmental cause or something else that makes them rise up in us uniquely in every individual. So that kind of what I would say spurred my advocacy. Also, I have a younger brother who had type 1 diabetes, and he survived because Dr. Best took an interest in his care when he was 15 months old. And I actually was mentored in a school project by Dr. Best, the co-discoverer of insulin, which was pretty cool back then. As you can tell from my history there, I'm a bit of an old chick. And so there is that history of having done this for a long time, but to be mentored at 12 years old by the co-discoverer of insulin just lives with me. In fact, they did a newspaper story once about that. But it's all about what created the advocate. And I think it was hearing these things, seeing how someone's life could be restored. My brother at 15 months old, his life was restored. And seeing these things happen because people tried and succeeded, these are the things that move me and motivate me the most.

SPEAKER_03 7:28

That's wonderful. A very early calling. That really is. And not that Canada wants to be known for this, but Gail, we've had many conversations over the years about inflammatory bowel disease and that the prevalence is highest in Canada, in the entire world. And then even within that, Alberta and St. John's, highest among Canada. So I'm delighted to see a lot of research going on within the area. But tell us a little bit about what we're seeing in terms of trends in inflammatory bowel disease.

SPEAKER_00 8:01

What I'm really excited about is all the advanced therapies that are available right now for patients. The initial products that would came out, in fact, again, a little bit of history here is CSIR started because someone died from Crohn's disease. She was a young woman named Gail, and just our past had been the same. She wasn't that much different in age from me. And yet she died because I didn't have Crohn's disease. I'm alive. But she died back because back in the day all they had was medications that treated symptoms. But now advanced therapies are actually looking at altering the course of the disease and healing the mucosa so that someone can function and live really well. And we're really excited about all those advances that are happening. That's wonderful. That's exciting.

SPEAKER_03 8:47

And how much has you and your organization worked with all of the physicians that work in this space over the years? Tell us a little bit about the interaction with physicians and the GI Society and you personally, the types of things that you have worked with physicians on and that you continue to work with physicians on.

SPEAKER_00 9:05

The gastroenterologists have been amazing to work with. We have a whole slew of them on our medical advisory council because we don't have anything on our website that they don't vet. It's constantly everything we do, we say, is this okay? They modify it, they'll say, okay, what about this, do that. They're an amazing group of individuals who really care. And unfortunately, there aren't enough of them in Canada to meet the needs right now. But I think that just being with them and hearing from them, and they're so open. We did a report last year, for example, on optimal care for inflammatory bowel disease. We had gastroenterology from coast to coast, and they offered all their advice. And even now we're working with them to do more things to try to get more of these medications covered on the different formularies across the country and trying to work with Canada's drug agency to modify recommendations for what medications someone can have and what the different provinces can cover. So I think that I would say we're really fortunate to have great medical experts working with us. It's such a gift, really.

SPEAKER_03 10:09

Gail, that's really fantastic. And it was years ago, I remember there was some real world evidence and some surveys that you did with patients and working with physicians. And I think that was leading edge. I hadn't seen that kind of work from patient organizations before. So I really appreciate the work that continues.

SPEAKER_00 10:27

In that work that we did was really remarkable because what we found was uncovered almost, we knew about it, but not to the degree is that there was such a connection between the gut and the brain. And so many of those individuals were living with some kind of anxiety or depression and things like that. And as a result, we started to do more public events talking about the link between inflammatory bowel disease and mental health. And we've got a lot of resources on our website now where we've really focused on mental health and the connection. And we also learned, of course, that from really great psychiatrists working in this space is that inflammation in the brain causes depression and anxiety. And if your body's inflamed, if you don't mitigate the disease and get it under control, then you will have the side effects that are in other parts of the side effects, but they actually become the dominant thing because suddenly you're living with depression and anxiety, and you can't go to the bathroom or you're going to the bathroom 500 times. I'm exaggerating, obviously, but you're going to the bathroom so often that sometimes you can't make it and you have an accident. It's so challenging to live with inflammatory bowel disease when it's not treated. But like I said, again, the great news is that there are solutions if an individual can get access to them. And I always correct myself because it's not about access to medications, in my opinion. It's about coverage of medication because someone will say, well, it's here. Health Canada's approved it. You can access it. But I'm not talking about that. I'm talking about the person having a medication covered in Canada so that they can heal.

SPEAKER_04 12:10

Gail, there's a couple of things I've heard you touch on that I think are really important. I like to maybe just take a step back and ask a question, like for our listeners, some that haven't worked maybe with an organization like one of the two that you lead, why are they necessary and what do they do? Just maybe share a little bit about the why.

SPEAKER_00 12:29

Okay, that's a really good question. And the reason it's good is that it's really deep. I will try to not take seven hours to answer you. But we're here because we're helping that individuals who are living in with these diseases need help. And sometimes they might work selling widgets and they have no understanding of healthcare. So it's our job to understand how the healthcare system works so that we can then help them navigate that. And the other key thing that we do as a patient group is provide this medically sound educational material. So our website is full of, as I mentioned, everything is vetted by physicians, but not everybody does the same thing. So ours is based in being a registered charities and making sure we have it set up at the Medical Advisory Council and all of those features. The challenge comes when other groups come about and they just do their thing as an individual and they might call themselves a group, or they might kind of sort of be a group, an informal group, or they might be a not-for-profit where they don't have to reveal their financial statements so they can do whatever they want with the money, as opposed to a registered charity that is audited, accountable, public documents, everything that we do is out there. And so there's such a range of these groups that my strongest advice to anyone who's going to one of these groups is to vet them. Make sure that they are actually have information online.

SPEAKER_03 14:06

Tell us more about VETGAL. What's the criteria that people should look at?

SPEAKER_00 14:12

Yeah, so I think you should look to see, first of all, if is it a registered charity? Because that's the highest standard. And if a federally incorporated registered charity is probably the best gold standard that you could have, and you can find their financial statements on the Canada Revenue Agency website and it's all vetted there. Then there are the provincial ones that are registered as a charity in a province, but they don't have the same reporting. And like I said, I had those two. And the one that I do provincially, you don't have to post financial statements, but you still have to have them vetted through like a review engagement, an accounting process that is recognized. But if you're not for profit, you pretty much can do whatever you want to do behind the scenes, and people don't know, and you don't have to disclose that. That's I think a really big deal because I knew of a group once a long time ago who had a leader. In fact, uh you knew this group too, Ursula. Anyhow, they had a leader who just basically took the money and paid herself. And that was how she ran her not-for-profit and did out there said she did this and said she did that, but she just took a huge amount for her own pay. And that can happen, right? But people back in the day never ever check to see who they are and what they're doing. So I think if you can make a donation to a group, like if they have a process for a donation where you get a registered tax receipt, then you know that they have due diligence in place to govern them. And it's really important, I think.

SPEAKER_04 15:38

Yeah. So again, I heard a few things. I just want to maybe check what I heard. These organizations like yours exist to address gaps. It could be addressing gaps for people for self-management, for learning how to manage their conditions. So educational gaps, there's maybe research gaps. I heard you talking about research, maybe insight gaps, getting insights that can help to inform policy, getting insights that can help to inform clinical practice. Are there other things that you're working on that you feel are really important to highlight for folks?

SPEAKER_00 16:14

I think that it's important to know that anybody can create a group and they can create a group mimicking what you do. There's no law against somebody copying what you do. So there are a lot of subgroups. You might meet somebody and think, oh, they're part of the big national group and find out that they're one of over here, just doing their own thing in that community. But it's misleading because you think, oh, they must be part of this other group. And I understand in the rare disease situation it that it's very difficult. You know, if there's a rare condition or rare disease, sometimes it's really difficult to be established and to get everything going as a group ourselves that cover everything from gum to bum. We also cover rare disease and oncology in that digestive tract, right? And so we do cover off on rare, but it's easier for us to cover rare because we already have a structure in place and we're able to do these things off the side of our desk because we already have the structure in place. So I imagine putting a whole structure in place of a registered charity because you have to have a board and you have to report and everything. Like we're in the middle of our audit right now, and oh my goodness, like the documents the auditor needs, it's a lot of work to go through all that. And some of the smaller groups might not have the capacity to do that. So I always encourage them to work with other groups that maybe they could be a subset of that group or something like that, and also to join coalitions. My whole thing is I've been right at the beginning, the origins of three coalitions in Canada and I've been part of them, one in BC, one in Alberta, and one that's a national organization and from way, way back and have had roles at these various coalitions because coalitions bring you together and help you share information. And that's a really helpful thing too.

SPEAKER_03 17:53

I was going to say it's tricky because sometimes groups start with a couple of volunteers that are managing their health, their patients themselves in that disease. And I can completely imagine they see a need that they feel isn't met. But it's really hard for groups. I know in my many conversations, there's a constant fundraising type of aspect, which is so important because over the years, I've also seen groups, let's say, go out of business. There was just a posting I saw the other day after four decades of helping and supporting patients. It's closing the doors. And so I don't know that is something that is recognized as well as the challenges of continuing and supporting a not-for-profit or a patient organization, whether it be provincial or national, it's a tough go. It's not necessarily as simple as seamless as it might seem in front of the curtains to make everything magically happen in the midst of education materials and policy for some groups and sharing research initiatives and all the work, as there is a different focus across different groups. And I can think of sometimes the larger charities, it's also good to ask them what is their focus? Because some focus on research, some don't. And so it's nice to know what are their pillars so that I think people can better know what to go to them for. Any thoughts on that?

SPEAKER_00 19:11

Yeah, and some of the groups have big, large groups over the years have endorsed products. And I think that's a slippery slope where they put a check mark on a product because they probably got some money to do that. And again, we talk about ethics. What are your fundraising guidelines? How do you fundraise? Are you willing to return money if they ask you to do something that's beyond your limits of ethical ideology? We have a fundraising document on our website where we talk about how we do that. But to put your check mark on some food product or something is a dangerous thing to do, I think, because as a registered charity, what if something happens to a product and then to endorse things? So we do not do that. We do not endorse products. We freely talk about and report on products that might be helpful for your digestive tract, but we never take money ever to do a product review, and we never endorse one, and nor do we endorse medications, and nor do we take money to do that kind of thing. I think that's a very slippery slope when a group goes out there and says, we endorse a product. Because as a charity, you really don't have the capacity to know what goes on behind the scenes in a company. Behind the scenes, there was a big lawsuit with a yogurt company in the United States. I'm not going to mention them, where they were sued because they made false claims and people thought, oh, let's endorse this yogurt. And it's awkward because some people are out there doing it. And if we don't do it, then we don't get the recognition. But I don't want the recognition for endorsing a product ever. Any kind.

SPEAKER_03 20:47

What are you most proud of, Gail, that you see across patient organizations? And what are you most proud of in your organization?

SPEAKER_00 20:54

I'm really proud of the way that we can work together, the way that we can share ideas. There's some groups that are really good on, and there are a certain number of individuals that do the heavy lifting, but then they share that. And so one time I might do all the heavy lifting on a project and then let others add their names and logos to it. And then someone else might do the heavy lifting on another project, and we can add our names to that. And there are certain anchor individuals within the community who you can go to and you know that what they're going to produce, it might have a typo in it, but the concept is right and all of the facts are right. And so being able to trust your colleagues in this is one of the best things that I love and that colleagues trust me, that we can actually do stuff. I do a lot of work in health policy, all the way from Health Canada through all the steps of drug approvals in Canada from the PMPRB. These are just acronyms I'm saying, but nevertheless, the PMPRB, Canada's Drug Agency, the PCPA, and as it gets into all the jurisdictions, these are all processes. By the way, I teach courses in this. I can get Down and delve into that another time. But I think that we have a small group of individuals who really know what's going on and who have experienced these, who've participated in the interactions with the government agencies along the way and can help the next generation of people who are here to do these things. And that's what I love the most is being able to network with my colleagues, being able to share ideas, being able to develop ideas, publish papers, or get out there and make a difference and actually see something change, move the dial. That's what I like to see.

SPEAKER_04 22:35

Okay, I'm gonna throw something out at you. What is one change that you've been able to make over the years that you think is really important for improving lives? And what's one thing you're working on that hasn't happened yet, but you really want it to happen?

SPEAKER_00 22:53

I think the most important thing that I was part of is getting access for patient groups to do submissions to what is known now as the common drug review. There were a couple of us back in the day who just stood up at a meeting and wouldn't sit down until they listened to us and said, we want patient input into this. And they said to us, it's an academic process. Why would patients have anything to say in this academic process? And now patient groups are doing this all the time. And to be part of the group that got the vote, I think that was one of the best things ever to be able to get the vote, along with some others, and working with a very passionate person at what was back in the day another group, but the Canada's drug agency's history. And she internally said, Yeah, I hear what you're saying, and I'm gonna help you guys. And she worked with us to do that. And so we designed the very first form that patients fill in to do their submissions. It's since been updated, and we were part of that update as well. But just that was just amazing. It's like getting the vote, and now we got a vote. Well done.

SPEAKER_03 23:55

That's awesome.

SPEAKER_00 23:56

And of course, there was a study published recently, and our group has actually done Ursula brought this up at a conference. Maybe you could tell them, Ursula, if you want, about what we accomplished in that result that you presented.

SPEAKER_03 24:07

It was around the number of submissions and representations and bringing forward patient voice and considerations from patients. There's a lot of work that goes into this. It's one of the things that many patient groups set aside time to work on, which is fantastic and help bring forward that patient voice. But of course, it's putting in the time and having the resources at the organization as well, and making sure you have the capacity to figure out how you're going to capture that and report on that. Scale got a shout out for the number of submissions that was done to Canada Drug Agency and a report that was done by our friends. So by report that was done by ZBRICS. So that article had come out and I read it, and it was a nice overview as to which groups had done submissions and some quantification of it as well. And ZBRICS did a nice write-up and I said, Gail, guess who is number one? So it was a number one area of work, that area of work that you had to put in there to put all those forward, which I think was really very interesting.

SPEAKER_00 25:08

So we had done the most single like submissions and also the most collaborative submissions where we worked with other groups too. So that's the answer to your question, because that speaks to how we work. So we will work solidly, focus, and do our own thing, but we are very happy to work collaboratively with others and raise the water for everyone so that we can all have whatever the rest of that analogy brings. But higher water, I guess, is a good thing.

SPEAKER_04 25:35

What is something that you're working on that hasn't happened yet, but is really important to you?

SPEAKER_00 25:40

So I think the biggest gap in our Canadian healthcare system is that there seems to be a refusal to recognize that we are all different from each other. And each disease manifests differently in the individual person. And there is this tendency by government to cookie-cut every policy. So, okay, it's just gonna work for everyone. But as I've said before, and Ursula knows I've done this too, we don't all eat the same thing for breakfast. And sometimes if you dish up your breakfast at a buffet and you pass your plate to the person on the right, it isn't gonna work for them. And that's just food. So when we look at all the different medications that are available, and then the government will say, okay, there's 10 here, we're only going to cover three because this looks like this is the best, but they have suddenly eliminated the medication that is actually going to work for the person sitting in front of the physician. And the physician knows that and wants to prescribe the medication, but guess what? It's not going to be covered, and so therefore they can't do it. So that frustrates the heck out of me. I really need us to have recognition by the officials that we are unique. Every one of us is different. We have different our DNA is so widely different. I had my DNA analyzed in 2002, and there are some really cool and fun things about that, but I think everyone has some really cool and fun things in their DNA. And if we would just get a system in place that would recognize the uniqueness of the person that we have to adapt, then I would be happy. Maybe I could even retire.

SPEAKER_03 27:14

No, I don't think that's on the radar, Gail. I'm just checking. So, Gail, I really appreciate the conversation on the collaboration. And you even referred to other patient groups as colleagues, which is very thoughtful. And I appreciate the thinking towards that. I know sometimes it's not well understood in the ecosystem that perhaps different groups have different areas of focus. And there's a little bit of a misperception or misunderstanding, perhaps, that I'll make up numbers. There's five groups that work in the same area. They're automatically going to work together on an education piece or something like that. Can you tell us a little bit about when that possibly would happen, or maybe some reasons as to why it doesn't happen and it's not a fit, that for certain things, there's reasons that groups are separate and it's not as simple as working together on everything?

SPEAKER_00 28:09

Good question. And here's what I think is that we all struggle to survive, and we're going maybe to the same places to get our funding. And maybe one of us might have gotten more from say from a company than another group. And yet, so okay, let me give you an example. Say you've got five groups working together, okay? And then one group got money to do the project, brought in all the other people to work on it, but then none of those people got compensation. And yet one group who led it got the compensation, and all the other people work really hard on it. I don't think that's equitable and it's very hard, but that happens more often than you realize, where one group does the heavy lifting. I've done that myself, where I've done the heavy lifting, and then I said, if anybody would like to come on, and they come on. But I've done the heavy lifting, but I don't ask much from them. But I've also been on committees where they ask so much from us and we still don't get compensation. So it's a struggle for two reasons. One is that it's so hard to raise money. And secondly, how do you quantify the compensation that is appropriate? Because there are no rules in this world. We have to figure it out as we go, and we have to figure out a way to be fair to each other and make sure that the person doing the heavy lifting gets the compensation, and that doesn't happen often. And that makes it for the dynamic of I'm not going to work with you again. Or you see a group come along doing something that's already been done, but they're cute and they're young and they're out there and they get the attention, seriously, and they're all out on social media and they get the attention. Meanwhile, the people who have paved the road and all we needed was the lines to be painted on the road. The people who dug it up and paved the road don't get any compensation. But the person who comes along and paints the lines seems to say, Oh, look what they did. They got all the credit. And it is really a challenge. I have a lot of car related analogies because I used to work in auto insurance years ago. And one of the ways I'd like to describe the way that it happens in a patient group is someone sees an ID, they say, Oh, I'd like to drive. Let me drive. Oh, but I gotta learn how to drive. And I gotta know what the signs of the road are, and I have to get a license. What? And then, oh, let me buy a car, but oh my goodness, I have to insure it. And for that kind of insurance, oh, I only want a little bit of insurance. I don't want the whole package of insurance. And then you have to renew the insurance. So you have to keep going and keep going. You can't just ride on the one year's insurance that you buy. So I think that's a really good sort of analogy of people who come into it, and then there's the ones who just come in for a short-term permit for three months, but they get a ton of money to do that short-term permit. And then the other ones who really are in there for the long haul, like I said, and they work on paving the roads so you can drive down them too. But I think there are a lot of them who maybe just take an Uber and that they get the attention.

SPEAKER_04 31:02

I I want to pick up on something Ursula said. She alluded to sometimes these groups have different purposes. And I'm curious. So I've heard a little bit tonight about a lot of the work you do actually within the medical community and within the policy community. I'm curious with a disease like Crohn's or IBD, it strikes me that this affects a lot of young people as well, people who are working age, people who go to school. Do organizations like yours get involved in helping to educate corporations and affecting HR policies that make it easier for people who are living with these things to actually contribute and come to work and feel comfortable at work?

SPEAKER_00 31:45

I have done in the past a number of presentations to different employers and to plan sponsors and various organizations. Part of my challenge is resource because it takes a lot of my time and energy to go do that, but I don't have funding to do that kind of thing. If I could just get a grant and be able to go out there and do that, if anybody listening wants to grant us to do that, I'd be happy to do that. But it takes so much time to first get the opportunity to go and then go and speak. But yes, I have done to some major corporations and spoken to them about changing health policy. We also have pamphlets that we provide on 35 different topics, again, gum to bum. And we provide those pamphlets free of charge from coast to coast for physicians, healthcare settings, hospitals, and employers. We provide them to the prisons as well. We have to take the staples out before we provide them to the prisons because they don't want staples.

SPEAKER_03 32:41

They told you that that's good communication, by the way.

SPEAKER_00 32:44

Send them, but but no staples. And so we figured out that way to provide for them that way. And so we do have these resources, hundreds of thousands of them that we send out all the time. And printing costs are high, postage costs are going up. So all of these things, even though we provide them for free, they're challenging. We do get sponsors for some of the pamphlets, but there are some of our pamphlets that have no medication for them, and it affects so many people, like our pamphlet on diverticular disease, for example. We have a video about it as well. We do a lot of videos, but everyone learns differently. So if your doctor hands you a pamphlet, you will trust that pamphlet because your doctors handed it to you and said, read this. And usually your significant other reads it too, and then they tell you what it says because you might be so stressed when you get a diagnosis that you might not be able to really take it all in. And so your significant other or family or a friend might just read it to you and help you with it. And this is why I think these printed resources are so valuable, and physicians use them all the time. So again, it's about credible information and what we do. So those pamphlets also are in, this is where I was going back to, is they're also in human resources offices. So we ship those pamphlets to human resources offices so that they can provide them for their employees as they might need them.

SPEAKER_03 34:06

So, Gil, speaking behind the scenes, we talked earlier about how many submissions your organization has done on behalf of Patient Voice to Canada Drug Agency. And thinking about all the amazing work that I've seen over the years from patient organizations, I'm curious what your thoughts are. What do you wish the general public knew a little bit more about the value and the great work that patient organizations bring forward?

SPEAKER_00 34:33

I think that most people don't know what we do. I don't think that they really understand the fullness. I had somebody once call our office to say they wanted a referral to a doctor, and we said, we don't do that. That's not in our mandate. And they said they were going to report us to the Canada Revenue Agency because we didn't give them a doctor. So clearly they didn't know, but they threatened us, right? And this is just recently, and then someone was harassing the office because we didn't find a doctor for them. And I'm like, read our mandate. We're a registered charity. They didn't read the mission and vision. That's right. And so I think that there's a lot of confusion exampled by that thing that just really happened this year. And I don't know whether Canada Revenue Agency is going to take away our registered charity status because we didn't provide a doctor for them. But you just never know what people think and how mad they get and how much they put it out there. We work a lot too in the obesity space, and there's so much stigma in that space that we get people just violating our social media by saying things we have to block, we have to cut them off. They just call individuals with obesity such strong, horrible names instead of understanding it's a chronic disease. So the public don't even sometimes understand. Again, I go back to my story at the beginning is that maybe they sell widgets for a living and they don't have a clue how the healthcare system works or anything about health. And with so much misinformation and disinformation out there, people just want to sell or believe that someone out there is selling a product that's going to cure them, or they do some crazy thing because they heard that on social media that it's going to help them. And all we do is keep bringing people back to the center and saying, let's look at what the evidence says. Let's be cautious, let's be calm, let's be careful what you put into your body and what you do to your body because what you think might cure it, unless there's evidence, really, please be careful.

SPEAKER_03 36:26

So I appreciate the comment. My takeaway is how important it is that patient groups communicate, and I guess re-communicate based on your recent experience, what it is that you can offer and what you work on and hoping that it's a match for when the person is in need. I can imagine that at times people are in crisis when they're reaching out as well, when they're first seeking the information and then re-seeking it, perhaps at a later date. But that communication piece is so important.

SPEAKER_00 36:54

I was just going to say that we do connect people beyond what they also think that we could. We had a gastroenterologist contact us to help him with a patient he had who needed an intestine transplant. And it was because, again, she didn't get the medication that she needed. If he got the medication sooner, she probably wouldn't need an intestine transplant. Very rare. And it's not done in BC. So it needed to be done in the United States. We connected her with her MLA, who made it happen. And she had an intestinal transplant just, I think it was last month. But that cost the province so much money that we could have stopped that from happening if she'd gotten the right medication at the right time and didn't have to lose her gut. That's a drastic thing. And it's, like I said, it's not done anywhere in Canada.

SPEAKER_03 37:39

That's incredible that you were able to help with that and help coordinate that. And final thoughts on the theme around that authentic collaboration. Because in addition to communicating, it can be difficult with different time commitments on projects, different competing priorities or situations different groups are focusing on to bring that to be. And I've seen you do that over the years. What advice would you like to share with people on what does authentic collaboration really require? And how can and should people show up to make it happen more often?

SPEAKER_00 38:13

I think it requires that we have no personality at all because personalities are what shut down a lot of stuff. Someone doesn't like you, they cut you off. Someone thinks you're too smart, they undermine you. That happens. I'm sorry, that happens. People are not nice to each other. And when you're trying to collaborate, someone says, Oh, you're doing better than me. Oh, how come you raise so much more money? Oh, how did you do that? And then the next thing, the collaboration does fall apart because someone says, you can't be at the table for no reason. And you have someone do that who's just like it's outrageous when they just say you can't be here because of a personal thing. But what really bothers me and is that the whole dynamic of the bully, the bullied, and the bystander plays out, unfortunately, in these groups. And so you have someone who tries to direct this and says, okay, you can't be a part of it. And then everybody else just goes, Oh, okay. Or they don't know sometimes. Someone gets kicked out of a group and they don't know why or how, or someone pretends to have done something and they haven't. It happens a lot. And I love the way that we work, but by the same token, you have to be ready. You never know when someone's going to come and throw a wrench in the gears and say, This collaboration isn't going to work because I'm taking my tools from the sandbox or I'm going away.

SPEAKER_03 39:30

So I've seen you turn it around, Gail, because everybody does show up with a personality. That's right. But what was it? How have you made turned those corners at the times you have turned it around to say, you know what? Put some stuff at the door, but here's how and what we're going to focus on. What do you think is the magic? I've seen you wave a magic wand as well at your event, which was a lot of fun. What is the magic that has to happen so that there can be authentic calibration? What are the ingredients that breed success?

SPEAKER_00 39:59

Okay. So I think the magic comes from respecting each other and to call out the bully and to stop that from happening. Just say, we're not going to do that. We're not going to talk about that. We're going to go and dwell on this. And sometimes you have to fire the bully and literally get them off the organization and get them out of the room so that everyone else can work together respectfully. And that has happened. I've done that more than once, where I've been in a situation where someone is causing a problem and you say you have to leave. But it happens in groups that I'm not part of, too. And you can kind of see it in the distance where someone has come to me and said, I don't know what to do because so-and-so has done this, and now I have to do that. And what do you do? And it's been happening for decades. It does. It happens. And it's frustrating because the world is full of individuals and we're all competing. And I think the one of the most important things I've learned is that the mess is geared, is all rooted in fear. They're afraid for their jobs, or they're afraid for their ego, or afraid for the recognition, or afraid that they're not getting their solution done. But I think we have to all come back to what are our missions? What are we supposed to do? What are our missions? What are our goals? How can we do them? How can we do it collaboratively? And just try to come back and say, yeah, that happened. I think it's to acknowledge when there is a problem, to bring it out in the open. And those who can deal with the truth can stay, but those who have to have it their way can go. And then those who are left can collaborate fairly.

SPEAKER_04 41:33

So I think the first thing that stuck out for me was living with these diseases. There's a very high burden, and it goes beyond the gut. It really does impact the whole body and lives, not just the individual life families, that organizations like yours are so important because there are a lot of gaps, and not one person can't fill all the gaps. So we do need organizations like yours to start to think about filling some of those gaps. I heard collaboration is magic when it works well, but it can be really challenging sometimes to have collaborations that work. People show up with good intentions sometimes, but it doesn't always work. And that there's a lot of hope that there's a lot of new options coming, things that actually heal, don't just treat symptoms, but there's a lot of options. And again, organizations like yours, it's so critical for you to be involved in the development of these new options and understanding making sure that when these options become available, that they actually fit into the lives of the people that are intended to help. Gail, how did I do? Did I hear things correctly?

SPEAKER_00 42:48

Yeah, I think that we exposed a lot of things. I hope people don't get mad at me at the end because I've talked candidly about what's going on out there. I think we didn't even broach on what happens were those who give us funding and how they look at it and how they look at us, and maybe they need to look at everyone a little more closely so that they can see who they're giving their money to. Because some people will just come up and just be an individual and make a pitch. And the next thing you know, they got money because there wasn't due diligence on the part of the funder.

SPEAKER_03 43:15

I do love the listening. And speaking of listening, we always end on a fun note, Gail. Interested what you're most excited for around the corner, what's something happening in your life? I know you take some fabulous trips. What's on the horizon?

SPEAKER_00 43:29

I'm going to Egypt in September on a nice tour with a very well-known Michelin star chef. Fantastic. Oh, wow. It's a small tour. And yeah, so I'm doing that in September. Wow. It's fully booked now, though, so nobody can do it.

SPEAKER_03 43:47

But we want recipes when you return and pictures and stories. So that sounds quite fantastic.

SPEAKER_00 43:54

And 20 of the meals are actually designed by that chef. And then we're also going around Cairo and down to Luxor and just doing some wonderful things, going on a cruise on the Nile. Someone has to do that. That does sound incredible. That's right. Absolutely. Work hard, play hard, 100%.

SPEAKER_03 44:09

Love that motto. Thank you for the great conversation today, Gail. Really appreciate it. It's been wonderful connecting.

unknown 44:15

Thank you.

SPEAKER_03 44:20

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SPEAKER_05 44:32

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SPEAKER_01 44:43

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