Latest / Amplify: A Podcast Powered by Patient Voice Partners / 20 Years in the Fight: Kathy Barnard on Melanoma, Advocacy, and Innovation

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20 Years in the Fight: Kathy Barnard on Melanoma, Advocacy, and Innovation · Amplify: A Podcast Powered by Patient Voice Partners

0:01
SPEAKER_03: Welcome to Amplify, Elivating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
0:11
SPEAKER_03: I'm Ursula Mann.
0:12
SPEAKER_00: And I'm Brent Cordy.
0:14
SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
0:21
SPEAKER_03: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
0:33
SPEAKER_02: I'm here today with my co-host Anne-Marie.
0:36
SPEAKER_02: And on today's show of Amplify, we're going to be talking about melanoma, which is skin cancer.
0:41
SPEAKER_02: A little bit of background.
0:42
SPEAKER_02: It's actually one of the most common cancers in Canada.
0:45
SPEAKER_02: What's becoming even more worrisome is the incident rates.
0:48
SPEAKER_02: It's happening more often.
0:50
SPEAKER_02: It's tripled in the last 30 years.
0:51
SPEAKER_02: And it's happening in younger people.
0:53
SPEAKER_02: So skin cancer is the topic today.
0:55
SPEAKER_02: And Anne-Marie, I'm interested.
0:56
SPEAKER_02: What are your thoughts as to what you were thinking about skin cancer for today's show?
1:01
SPEAKER_01: Yeah, thanks.
1:02
SPEAKER_01: So melanoma has hit very close to home for me.
1:05
SPEAKER_01: Three people I love dearly have been impacted by it.
1:08
SPEAKER_01: And what struck me the most as I was preparing for the show today is how little we think about it until we're forced to think about it.
1:15
SPEAKER_01: So I'm curious to hear from Kathy today about how we think about protecting ourselves and our loved ones, but still while enjoying life and enjoying the beautiful outdoors that we have.
1:26
SPEAKER_01: I appreciate that.
1:27
SPEAKER_02: I also have someone very close to me in my life that's now affected by skin cancer.
1:31
SPEAKER_02: And it really is one of those things that you don't really think about until you have to think about it.
1:36
SPEAKER_02: That's what I found as well.
1:38
SPEAKER_02: And I feel like there's perhaps not enough known about it.
1:41
SPEAKER_02: So I'm excited to dive in and hear more about this.
1:45
SPEAKER_02: So on today's show, delighted to welcome Kathy Bernard.
1:48
SPEAKER_02: She's the founder and president of Save Your Skin Foundation, which is a national not-for-profit group that's dedicated to the prevention of non-melanoma skin cancers, melanoma, and ocular melanoma.
2:00
SPEAKER_02: It goes beyond that, beyond the job that she does, which is incredible.
2:04
SPEAKER_02: In 2003, Kathy herself was diagnosed with stage four malignant melanoma.
2:09
SPEAKER_02: And we're going to talk about that today and what that looked like and what that journey meant to her.
2:14
SPEAKER_02: And then she went on to establish Save Your Skin Foundation in 2006.
2:19
SPEAKER_02: So we're going to talk about why she did that, what was happening in her life, and how she goes on to prioritize patient care and support.
2:27
SPEAKER_02: She also did some incredible work in national legislation for Canada's youth.
2:32
SPEAKER_02: And I want to hear more about what she did around raising awareness, skin cancers, and some of the awards she won.
2:37
SPEAKER_02: So, Kathy, welcome to today's show.
2:39
SPEAKER_02: We're delighted to have you here today.
2:41
SPEAKER_02: Thank you for having me.
2:42
SPEAKER_02: Kathy, can you take us back to what happened a while ago?
2:47
SPEAKER_02: What were some symptoms that you were seeing?
2:48
SPEAKER_02: What was happening in your personal health that started this journey?
2:51
SPEAKER_04: Well, firstly, I should set the stage.
2:54
SPEAKER_04: I'm of British descent, which means I have that very fair skin, blonde hair, blue eyes.
3:00
SPEAKER_04: I also was a huge outdoor athlete.
3:02
SPEAKER_04: I played a lot of competitive ball.
3:04
SPEAKER_04: I skied in the winter, I skied in the summer.
3:06
SPEAKER_04: So I spent most of my days outside.
3:08
SPEAKER_04: From that was our generation.
3:09
SPEAKER_04: We're the generation our parents would send us out, say, you know, come back at dinner time, and we know you're good.
3:16
SPEAKER_04: Also, the generation, when you went anywhere near a swimming pool, the sign was up saying, please don't wear suntan, lotion, or oil anywhere near our pool.
3:24
SPEAKER_04: Not that meant I did because I didn't anyway.
3:27
SPEAKER_04: It wasn't something we were told to do as children or even advised to do as children.
3:32
SPEAKER_04: So I was getting ready in 2002 to actually go to the worlds to play fastball in Australia.
3:38
SPEAKER_04: And I had a small lump on my left arm.
3:41
SPEAKER_04: And my niece, whose uncle had also been diagnosed with melanoma, had said, please go get that lump and that little brown mole on your back check.
3:50
SPEAKER_04: She took one look at it, said, Oh, you're 47.
3:53
SPEAKER_04: It's probably fatty tissue.
3:54
SPEAKER_04: Don't worry about it.
3:55
SPEAKER_04: Off you go.
3:56
SPEAKER_04: When I got back from Australia now, there were two little spots on my arm, and they were only the size of a pencil eraser at best.
4:03
SPEAKER_04: And I went back in, I said, Well, they're getting a little purple.
4:05
SPEAKER_04: I think we really need to take a closer look at these.
4:08
SPEAKER_04: And she said, Look, if you're kind of worried about your appearance, I'll send you to a plastic surgeon and we'll let them take a look.
4:15
SPEAKER_04: So over to the plastic surgeon, I go and he takes one look and says, Oh my goodness, we've got a problem.
4:21
SPEAKER_04: They took the first bump out, actually came back and said, Don't worry about it, it's nothing, but we're going to take the second one only to dive a little deeper, dig a little deeper, and just make sure that everything's good.
4:32
SPEAKER_04: My plastic surgeon actually came in to that surgery with the general surgeon because he knew they were going to take a pretty deep cut.
4:40
SPEAKER_04: He knew how important my sports are and they wanted to keep my arm.
4:44
SPEAKER_04: So they took the second one out.
4:46
SPEAKER_04: Mother's Day, 23 years ago, to the day I got a call from my GP saying, come on in, we just want to chat.
4:53
SPEAKER_04: So I went by myself.
4:55
SPEAKER_04: I didn't think it was any big deal.
4:56
SPEAKER_04: And I sat in front of her and she told me, You have, and I couldn't even pronounce those words then.
5:00
SPEAKER_04: Metastatic malignant melanoma.
5:03
SPEAKER_04: I had no clue what that meant.
5:04
SPEAKER_04: I don't even know if she really did.
5:06
SPEAKER_04: She said, Go home.
5:08
SPEAKER_04: If you need more information, tell your family they can call me.
5:11
SPEAKER_04: Do not get on the internet.
5:13
SPEAKER_04: Lionsgate hospital will be contacting you shortly.
5:16
SPEAKER_04: I got in my car and I must have sat in that car for 30 minutes, not wanting to drive.
5:22
SPEAKER_04: I actually, believe it or not, phoned an old boss of mine who I knew had been diagnosed with non-Hodgkins lymphoma 40 years ago and was told the same thing.
5:32
SPEAKER_04: I don't know why I found her number on my phone, but I needed to talk to her in that minute because she was the only person I knew that had been diagnosed with a cancer, with a deadly disease, and that was still alive.
5:44
SPEAKER_04: So it all started there.
5:46
SPEAKER_04: And I went home.
5:48
SPEAKER_04: And as you can imagine, I have two grown children, my husband, my mom, my sister.
5:53
SPEAKER_04: I have a very close family.
5:55
SPEAKER_04: And the first thing we did was we went on to Google.
5:57
SPEAKER_04: Actually, we were given a brochure on how not to get melanoma, which is a little redundant.
6:03
SPEAKER_04: So much to unpack in that story.
6:06
SPEAKER_04: Wow.
6:07
SPEAKER_04: In what seemed like forever, but was really only a couple hours.
6:12
SPEAKER_04: But that was just a start.
6:13
SPEAKER_04: And any of your listeners who have been diagnosed with any type of cancer get what that feels like.
6:18
SPEAKER_04: I always say it's like somebody threw all my family into a dryer and turned it on high because we were all moving in different directions.
6:26
SPEAKER_04: And the more we Googled, the worse it got.
6:28
SPEAKER_04: There were no survivors, there was no information, there was nobody for me to talk to.
6:33
SPEAKER_04: Stats were terrible.
6:35
SPEAKER_04: They were old stats from 10, 15 years ago.
6:39
SPEAKER_04: I don't even think we could find a word to describe what it was like for us.
6:42
SPEAKER_04: That was just us trying to muddle our way through this diagnosis.
6:46
SPEAKER_04: But then it just got crazier.
6:48
SPEAKER_04: Within 12 hours, I'm getting a chest x-ray.
6:52
SPEAKER_04: Within 24 hours, I'm sitting before an oncologist.
6:55
SPEAKER_04: I'm still trying to unravel what all this was.
6:57
SPEAKER_04: And now I'm sitting with a cancer doc.
6:59
SPEAKER_04: So I mean, the whole start of my cancer journey was a little odd, right?
7:04
SPEAKER_04: Files were lost, people didn't return calls.
7:07
SPEAKER_04: It was just that.
7:09
SPEAKER_02: It's almost an accidental diagnosis, if I may use those words.
7:13
SPEAKER_02: This wasn't like you walked into doctor number one and they said, here's the problem, let's go.
7:17
SPEAKER_02: A plastic surgeon is not the typical one that comes to mind to make the diagnosis and help you move forward.
7:24
SPEAKER_02: And I'm sorry to hear about the lost vials and the accidents.
7:27
SPEAKER_02: That's just added missteps to move forward.
7:31
SPEAKER_01: What really struck me as you were telling this story, Kathy, is that the interaction with your GP and dismissing it initially, and then only referring you on, and I'm going to loosely quote, if you're worried about your appearance.
7:45
SPEAKER_01: What if you had said, well, if it's just appearance, I don't need to go?
7:49
SPEAKER_01: I think it was a very non-supportive way of getting to your diagnosis.
7:55
SPEAKER_01: Absolutely.
7:56
SPEAKER_04: And really, as we talk further about why we started Save Your Skin, everything we've done is Save Your Skin really mirrors every problem or issue our family had as that diagnosis into treatment, really and beyond.
8:09
SPEAKER_04: And because honestly, it was 23 years ago, we should say that now, like that's something in itself.
8:15
SPEAKER_04: But even how today, how similar missteps still happen in a system.
8:22
SPEAKER_04: And it will talk to the importance of patient advocacy.
8:24
SPEAKER_04: It's directly our family's experience really talks to the importance of having a strong advocate beside you when you're diagnosed with really any health issue, I think.
8:35
SPEAKER_04: Right.
8:36
SPEAKER_04: I think it's really imperative of us to make sure that we look after us.
8:41
SPEAKER_04: Even if it's in a system we don't quite understand.
8:43
SPEAKER_04: I think it's really important.
8:45
SPEAKER_04: But it didn't get better from there.
8:47
SPEAKER_04: What happened next?
8:48
SPEAKER_04: Oh, then I went right to my oncologist.
8:51
SPEAKER_04: He gave me the we've got good news, bad news.
8:54
SPEAKER_04: I was like, oh, this is nice.
8:56
SPEAKER_04: He said, the bad news is you do have melanoma.
8:59
SPEAKER_04: And the good news is the only treatment we have for it will be paid for, at which I'm kind of thinking to myself, oh, that's funny.
9:06
SPEAKER_04: I live in Canada.
9:07
SPEAKER_04: I didn't even think cost of a drug would be part of any conversation, but that's okay because you said free.
9:13
SPEAKER_04: So carry on.
9:14
SPEAKER_04: He said, it was actually more I've learned since was more of a palliative treatment because there was nothing for melanoma back in 2003.
9:22
SPEAKER_04: So it was a treatment that I would get five weeks of high dose, and then I would have to do the remainder of the year injecting myself, which at first I thought was aye, a little creepy.
9:33
SPEAKER_04: I had to go to a public health nurse and do an injection into an orange, but actually it wasn't so tough.
9:38
SPEAKER_04: And the side effects were pretty intense.
9:40
SPEAKER_04: There's no more sports for me.
9:42
SPEAKER_04: I barely, by the last week of treatment, barely could get out of bed.
9:46
SPEAKER_04: I'll tell you though, the one thing that saved me is I love my sports.
9:49
SPEAKER_04: And I had started coaching a little girls' team.
9:52
SPEAKER_04: They were all nine.
9:53
SPEAKER_04: And this was before I was diagnosed, and we were picking our team name, and they picked survivors because they loved that movie.
10:00
SPEAKER_04: And little did I know that they would help me be a survivor.
10:03
SPEAKER_04: Oh.
10:04
SPEAKER_04: All I could do during that 365 days was barely get up on a Tuesday and Thursday to get myself to the ballpark to kind of suck in all that young energy from those amazing little girls teams.
10:17
SPEAKER_04: So we finished that treatment and went right back to work.
10:20
SPEAKER_04: I was working full-time.
10:21
SPEAKER_04: I loved my job.
10:22
SPEAKER_04: Only to go in for my chest x-ray in 2005, and they found a 14-centimeter mass in before four quadrants of my lung.
10:30
SPEAKER_04: That's where paperwork started to play a role.
10:33
SPEAKER_04: I had a message on a Friday.
10:35
SPEAKER_04: I had to get to a lung specialist at nine o'clock Monday morning and had to take my files.
10:40
SPEAKER_04: I had never collected any of my medical files.
10:43
SPEAKER_04: I thought it was sitting somewhere for me to access when I need it.
10:46
SPEAKER_04: My husband ran down at seven to get them and they couldn't find them.
10:50
SPEAKER_04: The nurse was away that had to pull them.
10:53
SPEAKER_04: My husband got a little frantic at the hospital.
10:55
SPEAKER_04: We finally did get them just in time.
10:57
SPEAKER_04: By the time I got to the lung guy, he said, we would have to take the entire lung out.
11:02
SPEAKER_04: Now you're still only 48.
11:03
SPEAKER_04: You haven't got much older, and I don't know how that would be for you.
11:07
SPEAKER_04: So he said, I'll send you back to your oncologist and see what he says.
11:11
SPEAKER_04: So I got back.
11:12
SPEAKER_04: He said, I don't want to do that to you.
11:13
SPEAKER_04: You're too young.
11:14
SPEAKER_04: You're too active.
11:15
SPEAKER_04: Let's try one more palliative drug, chemotherapy.
11:18
SPEAKER_04: We'll know after two treatments if it works or not.
11:21
SPEAKER_04: I said, okay, let's do what we got to do.
11:23
SPEAKER_04: It was not working.
11:24
SPEAKER_04: It had spread to my liver, my bone, my adrenal gland, my kidney.
11:28
SPEAKER_04: I was pretty full.
11:29
SPEAKER_04: He said, You've probably got three to six months at best.
11:32
SPEAKER_04: I said, Well, let's start the chemo anyway, because that's sort of all I've got.
11:36
SPEAKER_04: There were some side effects of the chemo.
11:38
SPEAKER_04: I needed an infusion.
11:39
SPEAKER_04: I would might need five infusions to get my blood work back.
11:43
SPEAKER_04: Each infusion was$2,500.
11:46
SPEAKER_04: And the thought of having to pay for five of those kind of made me now really understand how our system works.
11:54
SPEAKER_04: So in my first visit with my doctor, I'm told I'm lucky they're paying for something.
11:59
SPEAKER_04: And now I'm told I'm going to possibly have to pay$2,500 per injection to get my blood work to where I need to finish that treatment.
12:09
SPEAKER_04: Anyways, that didn't work.
12:10
SPEAKER_04: In the meantime, my son, who was going to university, who would have been 25 at the time, phoned a doctor in the U.S.
12:16
SPEAKER_04: He just picked a doctor who dealt with melanoma.
12:19
SPEAKER_04: He called him.
12:20
SPEAKER_04: The doctor picked up the phone.
12:22
SPEAKER_04: My son said, please, said, could you please save my mom?
12:25
SPEAKER_04: And he said, We have a clinical trial here in the U.S.
12:28
SPEAKER_04: You would probably have to pay for it.
12:30
SPEAKER_04: Find somebody in Canada who give it to your mom because she needs to be in the hospital and relatively healthy to be even to get on this trial.
12:38
SPEAKER_04: And so in that third visit to my oncologist for that third palliative drug, we went in and said, What about this?
12:45
SPEAKER_04: And he said, Oh, off you go.
12:47
SPEAKER_04: I'll no drug for you today.
12:49
SPEAKER_04: I'll talk to you tomorrow.
12:50
SPEAKER_04: And we went back in and he said, Yes, I need you on the plane tomorrow to the cross cancer in Edmonton, Alberta.
12:57
SPEAKER_04: They're going to discuss that drug with you there.
12:59
SPEAKER_04: So the next morning, flew to Edmonton, met the amazing Dr.
13:03
SPEAKER_04: Smiley out of the cross cancer.
13:05
SPEAKER_04: He said, Here's the deal.
13:07
SPEAKER_04: It's$40,000.
13:08
SPEAKER_04: You actually have to be hospitalized week on, week off, week on, week off.
13:13
SPEAKER_04: Or you can go to Maryland in the US and it'll all be free.
13:16
SPEAKER_04: You get it free, your family, your caretakers.
13:19
SPEAKER_04: Side effects that drug were harsh.
13:21
SPEAKER_04: It didn't have a long-term survivor rate for me.
13:24
SPEAKER_04: And I thought, okay, if anything's going to go bad, I want it to go bad in Canada.
13:29
SPEAKER_04: And my mom was in her 80s.
13:31
SPEAKER_04: I need to be close to her for her.
13:34
SPEAKER_04: And so we opted to take Edmonton.
13:37
SPEAKER_04: So came back to Vancouver, got all my files, and off I went to Edmonton.
13:43
SPEAKER_04: I was the fifth Canadian to get it.
13:45
SPEAKER_04: I was the only one to survive it and the side effects of it.
13:49
SPEAKER_04: It was like really quite harsh.
13:51
SPEAKER_04: And you let your body decide how many doses you would want.
13:55
SPEAKER_04: But the first week I was there, I got 14, which was incredible.
13:59
SPEAKER_04: Wow.
13:59
SPEAKER_04: Then I got a week kind of washout, went back.
14:02
SPEAKER_04: The second week I got 12.
14:04
SPEAKER_04: I got two months off to let my body try to come back to any type of normalcy I could have.
14:10
SPEAKER_04: And then I got another week on, week off, week on.
14:13
SPEAKER_04: I was again the only Canadian to complete it.
14:16
SPEAKER_04: But in that first week, after that first week, they ran scans and the tumor in my lung had shrunk in half.
14:23
SPEAKER_04: So my doc was pretty excited about that.
14:26
SPEAKER_01: Yeah.
14:26
SPEAKER_01: Can I ask you a question?
14:27
SPEAKER_01: You said that it was going to be$40,000 if you chose Edmonton, but no cost if you'd gone to Maryland.
14:35
SPEAKER_01: Is that correct?
14:36
SPEAKER_03: Yes.
14:36
SPEAKER_01: Can you explain what the difference was there?
14:38
SPEAKER_01: Why there was a cost in Canada, but not in the US?
14:42
SPEAKER_04: I didn't know then.
14:43
SPEAKER_04: Now I'm assuming it would be because it was a clinical trial in the US, which is generally the cost of that is covered.
14:50
SPEAKER_04: It was not a clinical trial in Canada.
14:53
SPEAKER_04: I got it on compassionate access.
14:55
SPEAKER_04: But that being said, though, I should make clear that after every week, I was handed the hospital invoice and I would tuck it away.
15:05
SPEAKER_04: But I actually never received the bill.
15:09
SPEAKER_04: To this day, I have no clue who picked it up, how that cost was covered.
15:15
SPEAKER_04: I don't.
15:15
SPEAKER_04: And in the beginning, I never questioned it because I was scared if I questioned it, they were going to hand me a$40,000 bill.
15:21
SPEAKER_04: In fact, even thinking that was going to happen affected my follow-up care.
15:26
SPEAKER_04: How terrifying.
15:27
SPEAKER_04: It was terrifying.
15:28
SPEAKER_04: Even after finishing that, the cost for us to go back and forth to Edmonton and all my family are self-employed.
15:36
SPEAKER_04: So they weren't being paid.
15:37
SPEAKER_04: They had to stay with me for that week.
15:39
SPEAKER_04: I already knew we have had at least$60,000 worth of travel costs that we had already incurred.
15:47
SPEAKER_04: So I didn't want to add$40,000 on that.
15:49
SPEAKER_04: So even after my treatment, I was supposed to go back to the cross for follow-up.
15:54
SPEAKER_04: And I didn't go.
15:56
SPEAKER_04: I made my appointment with my local oncologist in BC, hoping that that bill would disappear like my lung cancer tumor did, I guess.
16:06
SPEAKER_04: And to this day, honestly, I don't know where it went.
16:09
SPEAKER_04: But that is where the foundation all started.
16:12
SPEAKER_04: I knew in that moment how lucky I had been for all of that to fall into play.
16:17
SPEAKER_04: Right.
16:18
SPEAKER_04: I felt like I had gotten three stepping stones.
16:21
SPEAKER_04: If I hadn't to get me to that third treatment, and if I hadn't have gotten there.
16:27
SPEAKER_04: And I would ask about the other tumors because there were so many.
16:30
SPEAKER_04: And the doctor would say, let's just work on that big one.
16:32
SPEAKER_04: If we can get the big one, we can get them all.
16:35
SPEAKER_04: And they, in fact, got them all.
16:38
SPEAKER_04: By the end of all the treatment, all the tumors had gone.
16:41
SPEAKER_02: So, Kathy, thank you for sharing.
16:44
SPEAKER_02: I can hear in this how there was a lot of uncertainty and processing of the information as it was coming with some sense of this being overwhelming.
16:54
SPEAKER_02: This certainly did lead you to make some significant changes.
16:58
SPEAKER_02: And we're going to talk about Save Your Skin Foundation in a moment.
17:02
SPEAKER_02: If you think back to that time when everything was happening as you were navigating treatment, do you have some advice for other people that are going through this?
17:11
SPEAKER_02: What would you tell your earlier self at the time you were managing the diagnosis, thinking about treatments?
17:17
SPEAKER_02: How did you keep going?
17:19
SPEAKER_02: Because that's a scary amount for you and the family.
17:22
SPEAKER_02: You learned so much about the system, mistakes that happened, mishaps, financial things.
17:28
SPEAKER_02: There was a lot happening at one time, which is also tricky.
17:31
SPEAKER_02: But what is something that kept you going?
17:33
SPEAKER_02: And how do you now encourage other people?
17:35
SPEAKER_02: What do you say to them in these different stages?
17:37
SPEAKER_04: I would like to have said, I wish there had been a patient advocacy group around at that time.
17:42
SPEAKER_04: I really do, but there wasn't.
17:44
SPEAKER_04: That was a fact.
17:45
SPEAKER_04: There was nobody with any lived experience.
17:47
SPEAKER_04: So it wasn't like I had anybody like other patient patients now have safer skin or any other patient advocacy group, right?
17:54
SPEAKER_04: To talk to.
17:55
SPEAKER_04: To talk to, or just, I don't know how we got through it.
17:58
SPEAKER_04: I think we're a very close family, very close.
18:01
SPEAKER_04: My sister lives literally next door.
18:03
SPEAKER_04: My mom lives two blocks away.
18:05
SPEAKER_04: I had one son still at home and my husband.
18:08
SPEAKER_04: So I think we all had a different path as soon as I was diagnosed.
18:13
SPEAKER_04: For me as a patient, it was like, well, I can't do anything now.
18:18
SPEAKER_04: This is what it is.
18:19
SPEAKER_04: And again, I'm out kind of a competitive athlete.
18:23
SPEAKER_04: So it was like, okay, here's my task.
18:25
SPEAKER_04: I need to win this.
18:27
SPEAKER_04: I'm in it.
18:28
SPEAKER_04: I'm in it now to win it.
18:29
SPEAKER_04: And my head went down.
18:31
SPEAKER_04: And it was like, just do what you need to do.
18:33
SPEAKER_04: And I remember my sister on one of the treatment courses got me the Nike Just Do It t-shirt.
18:39
SPEAKER_04: And I bet you I wore that.
18:41
SPEAKER_04: Oh, yes.
18:42
SPEAKER_04: From the day I was diagnosed in 03 till I was finished treatment in 2007.
18:47
SPEAKER_04: Because all along the way, there's surgeries, there's tests, there's information thrown at everybody that you just don't understand.
18:54
SPEAKER_04: And fairness, when I look back, it was probably even harder for my family and my loved ones because they were trying to save me.
19:02
SPEAKER_04: Honestly, it was just like, just do what you've got to do.
19:05
SPEAKER_04: I had the utmost faith, this is me, in science and in my oncologist.
19:11
SPEAKER_04: Like I believed that everything they did for me was going to be what I needed.
19:15
SPEAKER_04: So it was just like, let's go.
19:17
SPEAKER_04: Here we go.
19:18
SPEAKER_04: I think that, and my survivor ball team and my community.
19:24
SPEAKER_04: Like everybody in my community were instrumental.
19:28
SPEAKER_04: And even after I got through all this, I walked around the community thanking people for helping my mom.
19:34
SPEAKER_04: My mom didn't want to show her fear and grief in front of me, but she would certainly talk to the girl at the bank or her pharmacist at shoppers when she was just feeling, and they were all part of the whole experience, right?
19:49
SPEAKER_04: That whole community.
19:50
SPEAKER_02: That's so important.
19:52
SPEAKER_02: And thank you for describing all of that support that you built around you.
19:55
SPEAKER_02: And you moved all this support forward.
19:57
SPEAKER_02: So you mentioned you wanted to start Save Your Skin Foundation to address all of the problems and challenges that you personally faced.
20:06
SPEAKER_02: So tell us a little bit about the education and awareness and the work that you've since started and how that came to be that then you formed Save Your Skin Foundation.
20:15
SPEAKER_04: Well, when we were finished treatment and everything was looking good for me in Edmonton, my doctor said, I need your help.
20:21
SPEAKER_04: He said, The drug you got, the newer models, the innovative medicines are about to come to Canada in cancer.
20:28
SPEAKER_04: And who better to advocate than somebody who had one?
20:32
SPEAKER_04: And I said, Okay, I can do this.
20:34
SPEAKER_04: It's what I did for a living or do for a living.
20:36
SPEAKER_04: I was still working.
20:37
SPEAKER_04: I said, What do we need to do?
20:39
SPEAKER_04: And we started what we called the Mike and Kathy Dog and Pony Show.
20:44
SPEAKER_04: He traveled across the country talking to other doctors about these new I.O.
20:49
SPEAKER_04: drugs and targeted drugs that we were about to see, getting them up to speed.
20:54
SPEAKER_04: I would follow along.
20:55
SPEAKER_02: And Kathy, just to back up I.O.
20:57
SPEAKER_02: and tell us a little bit about what you mean for the acronym, the immunosogy.
21:02
SPEAKER_02: Immuno oncology.
21:03
SPEAKER_04: It's very much unlike chemotherapy.
21:06
SPEAKER_04: It kills those bad cells, but leaves your good cells alone.
21:10
SPEAKER_04: So it was really, really new to treaters in this country, and they were a little bit worried about it because it can have, for some patients, intense side effects.
21:18
SPEAKER_04: So everybody was a little bit nervous about going to something new.
21:21
SPEAKER_04: So that was Dr.
21:22
SPEAKER_04: Smiley's job was to go out and kind of mentor and kind of coach everybody in these new drugs.
21:29
SPEAKER_04: They are also unbelievably expensive.
21:32
SPEAKER_04: So it was my job to meet with health ministers, assistant deputy health ministers, anybody in the provinces that were responsible for healthcare budgets.
21:41
SPEAKER_04: And it was my job to go out and say, hey, we need to get your budgets ready because we're going to see some drugs coming into the Canadian system that in the US, they're talking about curative.
21:53
SPEAKER_04: We're not even anywhere close to talking about that yet, but we need to make sure our budgets are ready.
22:00
SPEAKER_04: Want to have those treatments available because that's all we had in melanoma.
22:04
SPEAKER_04: That was it.
22:05
SPEAKER_04: So I needed to make sure firstly the melanoma patients were going to get access to those.
22:11
SPEAKER_04: So off we went and we built a melanoma task force of physicians that early back then were maybe 10 deep.
22:19
SPEAKER_04: We also, Dr.
22:20
SPEAKER_04: Smiley started the Canadian Melanoma Conference, just had its 20th anniversary.
22:25
SPEAKER_04: And really, that's how we started this all moving.
22:28
SPEAKER_04: And that's how we really started to understand the process.
22:31
SPEAKER_04: And I really got to work in the process.
22:34
SPEAKER_04: I will say my melanoma came back.
22:37
SPEAKER_04: NO7, as we were a year in, it was in my small bowel.
22:42
SPEAKER_04: They removed it.
22:43
SPEAKER_04: Now by this time, we have one of those golden amino oncologies.
22:48
SPEAKER_04: Dr.
22:48
SPEAKER_04: Smiley called me and said, This is for you.
22:53
SPEAKER_04: I need to get you back out here.
22:55
SPEAKER_04: I said, I don't want any more because the side effects from the last one were super hard.
23:00
SPEAKER_04: He said, get that t-shirt back on.
23:03
SPEAKER_04: Let's do it.
23:04
SPEAKER_04: And I went back to Edmonton.
23:06
SPEAKER_04: I was first Canadian on the first single, Immuno Oncology.
23:10
SPEAKER_04: And I finished that in 2007.
23:12
SPEAKER_04: I've had nothing since.
23:13
SPEAKER_01: Wow.
23:14
SPEAKER_04: So at just gave myself even more energy to really start advocating.
23:23
SPEAKER_04: I learned so much about the system, how our Canadian healthcare system works.
23:29
SPEAKER_04: I didn't know any of that.
23:31
SPEAKER_01: I was just going to ask you that.
23:33
SPEAKER_01: Because it it's so obvious how much you understand now.
23:36
SPEAKER_01: But that's really interesting that you didn't have that.
23:39
SPEAKER_01: Maybe speak to folks who are out there who feel like maybe they can't advocate because they don't really know how it works.
23:45
SPEAKER_01: Where should they start?
23:47
SPEAKER_04: Oh, you can advocate for yourself.
23:48
SPEAKER_04: I think that's the one I'm part of a lot of things about our country.
23:52
SPEAKER_04: But in the healthcare space, we have that opportunity.
23:55
SPEAKER_04: And honestly, I didn't know that till 2011 when we first got that immuncology, went through the health approval process.
24:04
SPEAKER_04: We get to go out and be part of that process.
24:07
SPEAKER_04: And it talks to melanoma because the first submission we got to do to the Canadian Drug Agency, we did a survey out to the patients that we had helped, because we'd already started helping patients, but we had lost every single patient that we had tried to help.
24:24
SPEAKER_04: We, in those first years of Save Your Skin, we only really had Edmonton, Alberta treating.
24:29
SPEAKER_04: So every patient that came to us, we were sending over to the cross to try to get them on either one or two of those treatments.
24:38
SPEAKER_04: We lost them.
24:40
SPEAKER_04: They were all under the age of 35.
24:42
SPEAKER_04: So that's when I even learned, hey, wait a minute, melanoma was the cancer of old people.
24:48
SPEAKER_04: Now we're talking about young people under the age of 35.
24:52
SPEAKER_04: Like, there's even more to this now than I even had learned in the research I had done when I was diagnosed, right?
25:00
SPEAKER_04: Because again, I was told older demographic, and now we were seeing younger and younger people.
25:06
SPEAKER_04: So we started navigating those patients outside of Canada.
25:10
SPEAKER_04: Once they got that the treatment that I had in Edmonton, and then there was nothing else in Canada for them, we started working with yes doctors to see if we could get the patients down there until we could really advocate for more access to treatment here.
25:25
SPEAKER_04: So in that first submission we did to the common drug review, we had 250 respondents, but there was only two of them were patients, me and one other girl.
25:35
SPEAKER_04: Everybody else was a loved one of somebody who had lost.
25:39
SPEAKER_04: So knowing that we were part of that process then really gave us the advocacy voice.
25:45
SPEAKER_04: We were like, okay, if we can do that, then there must be a way for us to advocate to get more clinical trials, more drug access, more research into this country, right?
25:57
SPEAKER_04: Who better to lead change than patients and the caregivers and loved ones of those patients in this country?
26:05
SPEAKER_04: And I would have never believed we would be able to do what we can do as patients.
26:10
SPEAKER_04: I mean, I just got back from Ottawa, where we had eight meetings set up back to back to back to talk about the gaps in the system, right?
26:17
SPEAKER_04: The need for more Canadian research, the need for more clinical trials, the need for more treatment options, the need for more equitable treatment options.
26:28
SPEAKER_04: I was lucky that I had a support system, the finances I needed to travel.
26:34
SPEAKER_04: But what about the hundreds and thousands of people in this country who didn't have that?
26:40
SPEAKER_04: We need somebody who needs to help them and advocate for them.
26:44
SPEAKER_02: So, Kathy, I have to say really a huge shout out and congratulations.
26:49
SPEAKER_02: I know that you won the British Columbia Community Achievement Award for your leadership in addressing and raising awareness around skin cancer issues.
26:58
SPEAKER_02: But you also went a step further and did work on prevention.
27:02
SPEAKER_02: You worked on federal legislation to ban tanning beds for Canada's youth.
27:07
SPEAKER_02: I wish we had met earlier.
27:08
SPEAKER_02: I did too much tanning in my younger years, but that was instrumental.
27:13
SPEAKER_02: And then there's work that you do.
27:14
SPEAKER_02: Can you tell us a little bit about the all can initiative?
27:18
SPEAKER_04: Well, there's more than just all can under Save Your Skin now, because when those two new innovative treatments came to us, I was like, well, wait a minute, they're going to come to everybody.
27:27
SPEAKER_04: And cancer is cancer, right?
27:29
SPEAKER_04: I want all cancer patients to have the opportunities that I had.
27:33
SPEAKER_04: So I did my little Google search to see who the movers and shakers were in cancer in Canada.
27:39
SPEAKER_04: Most of them, they were all centered out of Toronto or Montreal.
27:43
SPEAKER_04: And so I emailed them all and said, look, I'm from beautiful British Columbia.
27:47
SPEAKER_04: I'm new into advocacy.
27:48
SPEAKER_04: All of you have been working here longer than I have.
27:52
SPEAKER_04: Could we meet as a collaborative and talk about these new innovative drugs and how we can all help each other because we're better together?
28:00
SPEAKER_04: And so we did.
28:01
SPEAKER_04: We had our first meeting in Toronto and we could we started a group called Action.
28:06
SPEAKER_04: And the whole premise is that was really one for all and all for one.
28:10
SPEAKER_04: We told them our best practices, what worked for us going to get those two drugs through submission, where the hurdles were, because one of them was a targeted drug, which meant you had to have a pathology on your tumor to see if you had a BRAF.
28:25
SPEAKER_04: It's called the BRAF mutation.
28:27
SPEAKER_04: And if you had that B RAF mutation, then you were lucky enough to have two treatment options, an immunooncology and a PRAF drug.
28:35
SPEAKER_04: But getting that testing done was taking months at best.
28:39
SPEAKER_04: We only had one place in Calgary that was able to run those pathologies.
28:44
SPEAKER_04: So we were like, okay, there's an issue we need to work on because eventually we're going to be talking about personalized medicine.
28:51
SPEAKER_04: And it can only be personalized medicine if we've all had testing biomarkers done.
28:56
SPEAKER_04: So that was a real opportunity for a collective group of patient organizations to really start talking about that.
29:03
SPEAKER_04: So the collaborations through that action were huge.
29:07
SPEAKER_04: And then I was invited to be part of an international group called All Can International, and they were really working on equal timely access to care in Europe.
29:19
SPEAKER_04: And I wasn't sure why I was there, but I think really it was to introduce the way we work in Canada, because we're as patient advocacy groups.
29:27
SPEAKER_04: We really do have great opportunities here, right?
29:30
SPEAKER_04: To be the voice of change in our system.
29:33
SPEAKER_04: So after sitting on that for about three years, I was asked if I would like to bring that to Canada.
29:39
SPEAKER_04: I went and circled back with three of our previous health ministers across the country that had since retired and said to them, You've been following all can international.
29:50
SPEAKER_04: What are your thoughts on this?
29:51
SPEAKER_04: Our system is really different.
29:54
SPEAKER_04: Every province is different, every cancer center can be different.
29:57
SPEAKER_04: Would you think that this would work?
29:59
SPEAKER_04: And they were absolutely.
30:00
SPEAKER_04: And the whole premise of that was to bring together, to work together on issues in the cancer space, on all cancers, and to bring everybody to the table, right?
30:12
SPEAKER_04: I love to use my coaching analogy, right?
30:16
SPEAKER_04: I can't win a ball game unless I have all the right people in the right positions.
30:20
SPEAKER_04: So we wanted to make sure at all can everybody sat at that table, whether they were a funder, a sponsor, a doctor, a researcher, patient organization, patients.
30:32
SPEAKER_04: We wanted to get the holistic approach to cancer care.
30:35
SPEAKER_04: Because I think if we don't have that holistic approach, we can't fix anything.
30:41
SPEAKER_04: So that's where All Canada came up.
30:45
SPEAKER_04: We knew once we got deep into the system, there's a lot of moving parts.
30:51
SPEAKER_04: There's a lot of things that need to be fixed.
30:54
SPEAKER_02: Kathy, it's a very complicated system.
30:56
SPEAKER_02: And I really appreciate everything you think about on the prevention side and how important that is to keep people healthier and what to look for, and try to get that earlier diagnosis as well.
31:08
SPEAKER_04: So we decided that would really be at diagnoses.
31:12
SPEAKER_04: And we did this amazing survey with the international group across the world.
31:17
SPEAKER_04: And we heard the same thing back from all patients.
31:19
SPEAKER_04: We asked them questions like, where was it the hardest at diagnosis during treatment or beyond?
31:26
SPEAKER_04: We did an amazing infographic from there.
31:29
SPEAKER_04: I have to tell you, as soon as that was completed, I looked at it and said, wow, that was exactly my trajectory.
31:36
SPEAKER_04: And I think I've talked a little bit about that today.
31:38
SPEAKER_04: That diagnosis stage, firstly, getting diagnosed early is very hard, right?
31:44
SPEAKER_04: And we're always talking about, especially in melanoma, prevention, early detection are so important.
31:53
SPEAKER_04: But how does that happen when there's a lack of primary caregivers, there's a lack of dermatologists, we have a system that we need to learn to navigate ourselves.
32:03
SPEAKER_04: We have a huge population that is costing them their homes, their lines of credits to even get them.
32:10
SPEAKER_04: So it really tied in all the pieces of the system that we knew all Canada was best to work on.
32:18
SPEAKER_04: I'm proud to say it's been very, very successful, as has the action, right?
32:23
SPEAKER_04: When one of the patient organizations hears that we're having a problem within a file, going through the common drug review or any part of the process, we get that together, we discuss it, we figure out a plan, we have a strategic plan on how we're gonna deal with that to get equal timely access.
32:43
SPEAKER_04: I'm talking timely, because we know most patients, like myself, were given three to six months.
32:49
SPEAKER_04: So we can't wait for 18 months for a drug or some clinical trials to come.
32:53
SPEAKER_04: We got to move it, move it.
32:55
SPEAKER_04: All these collaborations to me are really part of the success, I think, of everything that's powered by Save Your Skin Foundation.
33:03
SPEAKER_02: With regards to all the work that's being done, congratulations on everything on All Can.
33:09
SPEAKER_02: It is not easy to bring together all the right people in the room at the same time.
33:14
SPEAKER_02: And you do a masterful job of bringing groups together.
33:18
SPEAKER_02: And I know you told me you're good at that, and you really are.
33:20
SPEAKER_02: And I want to say thank you for all of the collaboration you do within Cancer and beyond to help change policy and think about what does health look like?
33:29
SPEAKER_02: You also help individuals so many times.
33:32
SPEAKER_02: The stories that you've shared with me over the years about helping individuals get to treatment is just incredible and really changes families' lives as well.
33:40
SPEAKER_04: Thank you, Ursula.
33:41
SPEAKER_01: You were just in Ottawa, advocating, still advocating, still going strong.
33:46
SPEAKER_01: What are the top two to three things that you were discussing in your meetings in Ottawa?
33:53
SPEAKER_04: We were talking about Canada strong.
33:56
SPEAKER_04: We know right now how important it is.
33:58
SPEAKER_04: And I think when I heard that the tariffs on our BC wine were being taken off so we can have BC wine in the rest of Canada, I thought, well, wait a minute.
34:10
SPEAKER_04: Why do we still have a system of health care in which all Canadians are not getting the same type of care?
34:18
SPEAKER_04: So we know that our BC patients might have access to treatment that they don't in Manitoba, Saskatchewan.
34:26
SPEAKER_04: We know that they can do in big cancer centers like Alberta and in Toronto, they get lots of research, lots of clinical trial access.
34:35
SPEAKER_04: Why am I, why over the last 20 years have I put out over$600,000 to get other Canadians access to that research and clinical trial?
34:46
SPEAKER_04: So the whole premise of that meeting was research is care.
34:51
SPEAKER_04: We need to be Canada strong.
34:53
SPEAKER_04: We need to invest more in research in this country.
34:56
SPEAKER_04: We need to have more clinical trials earlier in this country, and we need to have more equitable care in this country.
35:05
SPEAKER_04: We should never lose a Canadian on their postal code.
35:09
SPEAKER_04: And that's just a fact that that happens in this country.
35:13
SPEAKER_04: And it can't, and it shouldn't.
35:16
SPEAKER_04: This was just a start.
35:17
SPEAKER_04: It's Save Your Skin's 20th anniversary.
35:20
SPEAKER_04: We are celebrating this year, and we are going to be everywhere.
35:25
SPEAKER_04: We have helped thousands of patients that were told they had six months, and now they are part of the Kathy Dog and Pony show.
35:34
SPEAKER_04: We will meet with everybody who has their hand in cancer, right from Vancouver Island to Newfoundland in July.
35:44
SPEAKER_04: We will not leave a stone unturned, and we will try to make the biggest difference we can.
35:51
SPEAKER_04: And I will say we're doing that in collaboration again with other patient organizations.
35:56
SPEAKER_04: We're invited to our Hill Day, right?
35:58
SPEAKER_04: Because we are.
35:59
SPEAKER_04: We can't do this alone.
36:00
SPEAKER_04: It takes a village.
36:02
SPEAKER_04: And you're part of the village.
36:03
SPEAKER_04: We've been in this space working, and these opportunities are part of that, right?
36:09
SPEAKER_04: So I thank you for today.
36:10
SPEAKER_01: Thank you for fighting for all of us.
36:13
SPEAKER_02: Yes, absolutely.
36:14
SPEAKER_02: And thank you for sharing the vision of working together and what this means.
36:19
SPEAKER_02: And I'm excited for things around the corner.
36:22
SPEAKER_02: And this has been an incredible conversation.
36:24
SPEAKER_02: Thank you for sharing your journey.
36:25
SPEAKER_02: I am personally delighted to see how well you're doing.
36:29
SPEAKER_02: And I'm always applauding and cheering on the work that you're doing too professionally.
36:34
SPEAKER_02: We end on a fun note.
36:35
SPEAKER_02: And I know you have a fabulous upcoming trip to Newfoundland, but I have to be honest, I want to chat about pickleball first because I've come to learn that if I don't know of something, I should almost ask Kathy because chances are she'll tell me.
36:48
SPEAKER_02: So Kathy was talking to me about pickleball long before it was popular.
36:51
SPEAKER_02: I didn't know what it was.
36:52
SPEAKER_02: She was telling me she's off to play.
36:54
SPEAKER_02: So Kathy, tell me a little about pickleball.
36:56
SPEAKER_02: And I'm interested what's around for you upcoming if pickleball is going to be part of your next fabulous trip to Newfoundland.
37:02
SPEAKER_04: Well, I don't know.
37:03
SPEAKER_04: It'll be part of my fabulous trip, but I'm not sure how it even entered my life.
37:08
SPEAKER_04: Well, I guess I do.
37:09
SPEAKER_04: I had a ball team that even when we were in our 50s and 60s would travel to what we call the Hudson Games.
37:15
SPEAKER_04: They were in Utah.
37:16
SPEAKER_04: We had been there going for about four or five years.
37:18
SPEAKER_04: And on year six, we couldn't even field a team.
37:21
SPEAKER_04: I said, What's wrong with you guys?
37:22
SPEAKER_04: Are you injured?
37:23
SPEAKER_04: They're like, No, we're playing pickleball.
37:25
SPEAKER_04: I said, What kind of sport would be called a pickleball?
37:29
SPEAKER_04: Like, what is that?
37:31
SPEAKER_04: Anyways, I begrudgingly two years later said to my husband, Oh, let's go see what this is all about.
37:38
SPEAKER_04: Oh, well, oh my God, it's the fastest growing sport in Canada.
37:43
SPEAKER_04: There's another change.
37:44
SPEAKER_04: It used to be the sport of old people.
37:46
SPEAKER_04: Now it's the sport of all people.
37:47
SPEAKER_04: Trying to find a space and a place to play is getting harder and harder.
37:52
SPEAKER_04: But yeah, it's kind of fun.
37:54
SPEAKER_04: I have to admit it.
37:54
SPEAKER_04: So I call it my mini tennis game.
37:56
SPEAKER_04: And now that I've gotten older and I'm still alive, the least distance I have to run, the happier I am.
38:03
SPEAKER_04: There you go.
38:04
SPEAKER_04: I don't think we'll be playing in Newfoundland.
38:06
SPEAKER_04: I've never been to Newfoundland.
38:07
SPEAKER_04: I'm thrilled to be there.
38:09
SPEAKER_04: Every travel trip I do this year, we're doing meet and greets with some of the patients that we've helped.
38:14
SPEAKER_04: So I get to go to my lovely niece's wedding and I get to meet some of the patients from Newfoundland.
38:20
SPEAKER_02: That's fantastic.
38:22
SPEAKER_02: That's beautiful.
38:23
SPEAKER_02: Kathy, wish you a beautiful bon voyage and a fabulous trip.
38:26
SPEAKER_02: And thank you for this fantastic conversation today.
38:29
SPEAKER_02: Thank you to both of you.
38:30
SPEAKER_02: Have a great day.
38:31
SPEAKER_02: Thanks so much.
38:37
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38:42
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38:49
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39:00
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39:11
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39:21
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39:23
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