Interview with Kim Steele, Director of Government and Community Relations at Cystic Fibrosis Canada

Updated: Mar 2




Kim Steele is a passionate advocate for Canadians with cystic fibrosis. Due to her hard work, trikafta, a drug that could be life-changing drug for almost 90 percent of people with cystic fibrosis, was brought onto the market in Canada with unprecedented speed. Kim is a tenacious, kind, and empowering leader and mentor to many in the health field and an inspiring role model for women who aim to make a difference in the world.


Read on to gain a better insight into what inspired a great leader to get to where she is today.


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S: What led you to this position? What other jobs have you done in the past that were similar to this one and that led you to this role and kind of encouraged you to be here?


K: I guess I started my career in student leadership while I was living in Alberta and our provincial government made a lot of cuts to post-secondary funding and I didn’t think that was fair, especially as someone who had to rely on student loans and grants to get through post-secondary. So, I got involved and this interest opened my eyes to all sorts of inequities in society and while I stayed in post-secondary education and studied policy, largely, that was more of my work - not so much government relations. I made the transition to health care with Cystic Fibrosis in 2006 and I haven’t looked back. That was a contract position and I learned a lot about the disease and the community. I ultimately took a position with the Multiple Sclerosis Society and that really helped me understand the structural issues that people encounter in terms of access and care across Canada. There’s so many disparities and we need to - just as we do at Cystic Fibrosis Canada - we need to help them tell their stories and lift them up for change.




S: I always find that great that you also worked at MS.


K: Yes, it was very different, you know, and when I was there, we advocated and lobbied the Federal Government with other neurological health charities. We tried to get some money out of the federal government to start the first epidemiological study on Canadians with neurological conditions. We ended up getting 15 million dollars. So it was very vast, which was kind of unheard of. It provided the first united dataset that could be used to inform more coordinated care and access to medicines. So that’s what we’re trying to do with cystic fibrosis and we have a really great backbone because of our registry, our history, and our legacy of being really data-driven and evidence-driven. That’s what really helps us - it’s a health charity and that’s what helps me do my job.




S: Wow, it’s like you’re made for advocacy, you started because you were passionate about it because of your experiences at school and now you’re doing it for other people and their health. So that’s amazing! I didn’t even know that’s how you started off.


K: Yeah, it was really weird and a different climate - there were 3 women and 52 guys around the table. It was a very different climate and one in which we always had to be on guard quite frankly. But it was still a really great experience. And a lot of those people are now politicians. They're sitting in the Legislature and in Parliament and I think that's great for them, but for me, the road I chose was different. I just like working close to the community and that's what I do.

S: Do you still keep in touch with anyone that you advocated with during that time?

K: Oh yeah, absolutely. Like our paths cross all the time, even unintentionally. When you do this kind of work, you're out there - well, we used to be more out there at a fence and doing lobbying days and those kinds of things. And so, yeah, these relationships that you make now, certainly politically and even from a policy perspective, they matter long term. Absolutely.

S: Wow, I did not know that. Sometimes you're so full of surprises. Okay, I'm going to move to the next question. Are there any challenges or barriers you had to overcome to be where you are today? As a woman or just in general? K: I mean, definitely from a geographical kind of perspective. I knew early on that if I wanted to work in non-profit advocacy, it was not going to happen in Alberta, not the level of advocacy that I wanted to do. So I moved to Ottawa for a few years because I wanted to have that perspective in order to inform my future work. And then I got this opportunity in Toronto to go work as an analyst for a little while. It was a different way to look at the work, and it's just kind of after that it became a more concerted government relations effort. I won't say it was a barrier, but I will say that coming from out west, you're looked at a little bit differently in central Canada just because a lot of people from west look very differently at people from central Canada. So that's always interesting, especially because my politics are not the same politics as the west. So, it's sometimes difficult for people to reconcile that but so be it. But yeah, I mean, as a woman, absolutely. I just described like walking into a boardroom where there's three women and like 52 guys. But yeah, of course there is that. But you just have to keep your head up and plow through it, any of it. S: Do you find that even now after years of doing advocacy, that it's a little bit it's still a little intimidating with men around or you've kind of grown into it and you're more confident? K: Yeah, I don't have any problems or challenges anymore. It doesn't matter who you are, what your gender is. I think a lot of this work is really driven by principles. And when you're dealing with any kind of barrier, including men, it's all about your principles. You just stay true to them and that's how you get through anything.


S: That's good, okay. Would you have seen yourself here ten years ago? If not, how has your career taken off for the better? K: It's interesting - I think I would say yes. Ten years ago, I was ready to leave MS Society to go work with the national association for the research based pharmaceutical companies at Innovative Medicines Canada and I was going to do stakeholder relations. When I was at the MS society, I was a Senior Coordinator of government relations for Ontario. I was able to scope my role a little larger to become the manager of communications and government relations for Ontario. The CEO came and said, “Oh, do you want to come in and manage my office and do strategic initiatives?” And so I managed his team and the stuff that went on with the board but with an advocacy lens because he was very strategic and he understood that public policy takes time so it's important to always have an iron in the fire so that was really interesting.


Somebody called me one day and suggested I apply for this position, at Innovative Medicines Canada and I did, and I got it. It was really interesting, I did it for about 2 years and then I got laid off and I’d never been laid off before. I ended up moving to Milton because I fell in love with my partner. During that time I did some consulting, mostly CADTH [Canadian Agency for Drugs and Technology in Health] submissions - I designed surveys and wrote CADTH submissions for rare disease groups. Then this job at Cystic Fibrosis opened up, and I thought, yeah, I should apply for this job! We're seen a lot of really amazing things and now we're kind of at a point where we have to look at everything and figure out how to plan for the future after such an amazing, incredibly unpredictable year.


S: I mean, that's great that you kind of saw where you wanted to go 10 years ago.


K: Yeah, I mean, sometimes you can have little bumps in there. During my whole consulting gig I felt like I should probably have been applying for more jobs but you know it's hard to do both really well. You kind of have to commit, like, "Okay I'm really going to look for a job today" or "I'm going to work on this contract right now" so yeah. For me, it kind of got to a point where I just needed to pick a lane. I chose to apply for jobs at least four 4 weeks but in the end, you do you still have to work to put food on the table so it's tough.



S: Whenever I tell anyone that I'm in global health - and you know global health is very broad and you can kind of go into a lot of streams - they say that this is the perfect time for you to go in the field when there’s a pandemic going on. I find that some people are still very weird about hiring new graduates or people with less experience.


K: Yeah well I mean there's always that hidden market too - most of the work that I have gotten in my life has come through word of mouth. It might have been posted and I just wasn't looking at that point of my career or maybe I was but I wasn't openly right for it, so yeah. Where are you primarily getting your resources from? Are you looking at a list you have any confidence in people who can help you navigate other opportunities that might not require a bit of an insider's touch?



S: Not really, I was going to speak to one of my partner’s friends because I found out that his mom works at the WHO at the maternal and infant section so I meant to ask her like to have a chat with her - hopefully that works out. I was looking at her experiences and she's clearly built herself up. Some people say they did their masters and got connections as an intern or worked their way up through one department.


K: A 5- 10 minute conversation - you never know who will say yes to that. When I decided to go back and look for work that I could be fully invested in I worked with a job coach who taught me that to just plan for a few discussions every week. The connections you already have might be able to introduce you to other people that you don't know yet - you ask them if they can recommend one or two other people for you to speak to. I won't keep them for longer than 10 minutes - I ask for advice and then if there anybody else who might be able to help me. Something like, “okay so thank you for speaking with me today, I'm looking for work in this space specifically a b and c and I wanted to talk to you about your career trajectory and how you got to where you are today and where and might be opportunities for somebody like me you know it in your sector”. Keep it broad before you go like narrow so they don't feel like you want their job. Sometimes people will say "no, I'm not going to refer you to my friends" and some give you 15 names you know and want to get you a job right then and there, so it's a neat process. Just keep asking for people and eventually you're going to know the space better and find out where you might really benefit. I promise you, you'll meet some people who are major players - after you ask your questions, say "thank you for your time but would you mind if I followed up with you at some point you know down the road and just let you know how everything goes?" so you close the loop with them.




S: I tried reaching out to some people on LinkedIn - it's really intimidating! I feel like reaching out to a complete stranger is more intimidating than someone you know but fell out of touch with, but it really sounds like it's worth asking people. I'll definitely try that, thank you.


K: Yeah and again, 5-10 minutes max, just say that I would like to ask you a, b, and c. Send them what you're going to ask them in advance and then if they don't show up, hopefully they've sent you their stuff in writing. I know it is hard on LinkedIn but it's a necessary evil, that's all I'm going to say. I don’t know what your return rates will be there, I was more of a word of mouth type of person and then I would do some sort of email exchange. At the same time, I did have to poke around on LinkedIn. It's like an abyss, people either get back to you or they just don’t. I think if you just reach out gently and are really concise it tells them that you will respect their time.




S: Thank you, I'll definitely try that. It feels better having someone in your position confirm that it is a normal thing to do.


K: It’s just how you ask who you're asking - I've seen some things that are just very direct and it's a little jarring, you know, so include positive things about the person that led you to reach out, even if you don't know them really well. Something that's personal but not personal because it's all through LinkedIn.



S: Thank you. Okay, I'm going to finish a few more questions here! What is the biggest factor that has helped you be successful?


K: I think it's my need to see change through, when it comes to government relations. It's a long game and it's very rare that you're going to see a short-term gain. It's high-resourced work, you put a lot of heart and soul into it and so everybody around you - when it comes to a charity - you know the entire community has worked so hard for everything that they have, and the only way that I can kind of get through that is to know that there's a win to be had long-term. You know we can achieve something based on all of the work that we've just done to increase access, for instance, around changing therapy, trikafta. That took a decade or more of work to get to where we are today. So you have to be able to see that and appreciate that it might take a decade to get somewhere. This work can be very hard but I think my ability to see into the distance and see that there will be a win and know how we need to get there - that's something that's really helped me get by.



S: That's great because I feel like sometimes you lose sight of what you're aiming for but you are someone who I can look to and know that that's going to happen. Okay, 2 more questions! Is there a female figure that you looked up to when you were younger or now?


K: Oh boy, I don't know! I think Pat Benatar because she was totally in a space that was a boy's club and you know, she was loud and proud and in charge. She just stayed focused and kept her head in the game because that's what you need to do and she won pretty big eventually. I think I'm going to go with Pat Benatar.



S: Do you have any advice for any woman entering the health field?


K: Yeah, find the other women. There's a lot of us, it's one of the great things about working in this space. I've done it long enough to see that there are amazing female leaders, people to look up to mentors; they're everywhere. I think we've all experienced challenges due to sexism here but in many instances, we are at home with each other and we try to be as representative as we can and learn from each other. We're always trying to do better in the healthcare space and the charity space, to make sure that everybody in our workforce is represented well and has everything that they need so yeah, it's an exciting place to be.



S: Thank you so much for letting me interview you. I have a lot of good notes here and I feel like I’ve learned so much more about you!


Please note that this piece was transcribed from an interview and some parts may have been edited for clarity and/or length.




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