Building The Noise with Abigail Johnston, JD: EPISODE 008

SPEAKER_02 0:00

There was a moment of clarity when I was told that I probably had about 12 to 36 months to live. Obviously, they were wrong because that was nine nine years ago.

SPEAKER_01 0:09

Wow.

SPEAKER_02 0:09

But they were patients.

SPEAKER_01 0:11

Thank you.

SPEAKER_02 0:12

Yeah. Yeah. A doctor recently told me that it was my self-advocacy that was probably the reason I was still alive.

SPEAKER_01 0:18

Welcome to the Building the Noise podcast.

SPEAKER_00 0:22

Ladies and gentlemen, welcome to Building the Noise. I'm Matt Teresco, and with me today is an unbelievable legal advocate, patient advocate, an all-around driven patient that is here to help you understand everything that you deserve when it comes to healthcare and how you can ensure that you know what exists and what is valuable for you in the moment. Abigail Johnson, Abigail, it's a privilege to have you with us today. I'm excited for our discussion. And to kick things off, if you could tell us a little bit about your role as the director of mentorship and legal clinics at Project Life and what Project Life is really all about.

SPEAKER_02 1:04

Well, Matt, thank you so much for having me today. I really appreciate the opportunity to talk about my experiences and also the advocacy that I have somewhat fallen into since my diagnosis with stage form metastatic breast cancer back in 2017. So Project Life is a virtual wellness house for the metastatic breast cancer community by the metastatic breast cancer community. We are somewhat unique in that we are entirely patient-led. So all of us on the leadership team are living with the same diagnosis as the people that we serve. And our founder, Leslie Glenn, founded the organization because of two things. Number one, those of us who are always in active treatments for cancer are oftentimes left out of survivorship programs. Survivorship programs, which are designed to help you, it's really designed to help people kind of get back to real life, so to speak. But the supportive services are also necessary for those of us who will never be done with cancer treatment. And so this idea of active treatment then excludes a lot of us who oftentimes need more services, quite frankly, than people who are done. So that was the first gap that she identified and a lot of us experienced. The other thing that a lot of us experienced is that people who start nonprofits, very well-meaning people, when they start a nonprofit that is a nonprofit that is focused on the early stage experience, not the terminal cancer, but the cancer that's, you know, you get diagnosed, you have treatment, you're done, you move into survivorship. People who do that don't fully grasp a lot of times the metastatic experience and that we will be in treatment until we die, that we are constantly losing people in our community. It's just a different weight. And so we got together and founded, or she founded and then pulled all of us, pull all of us along to serve our community in the best way that we possibly can. So I run two different pieces of our programming. The mentorship program is where we connect people one-on-one for that uh guidance, that connection with somebody who's going through the same thing that you are. We have mentors that are living with metastatic breast cancer. We have spouses who are supporting someone living with metastatic breast cancer. We have adult children who then support other adult children of someone living with metastatic breast cancer. And we've got moms and dads of people who are living with metastatic breast cancer. So we really look at the whole family as much as we can to provide that support. Again, one-on-one. So then the other thing is they run legal clinics. So once a month, I get people together who have questions where cancer and legal stuff intersect, which is a lot. And I we talk about those things, I give people guidance. I do a lot of one-on-ones walking people through various legal processes, uh, mostly about insurance and disability type things and fighting with your insurance company or figuring out how to, you know, all the billing that comes in. You know, it's all very practical things.

SPEAKER_00 4:24

But I find all the healthcare fuckery, for lack of better terminology.

SPEAKER_02 4:29

I totally agree. Yes, it becomes a full-time job, and it shouldn't be. Uh, so I find that my experience of more than 20 years of being a trial attorney, I'm able to cut through some of the things, give people tricks that I've learned, and that uh helps them feel like they can address some of these things on their own.

SPEAKER_00 4:50

Yeah. So tell me, because you had said you referenced the fact that you fell into your role, right? It came to you. I think a lot of people get in situations like yours and don't think there's any value that they can provide. How did you identify this opportunity and and what was it that made you say, you know what, I'm gonna give back to my community?

SPEAKER_02 5:16

So I would describe myself as a workaholic. I certainly worked far too many hours when I was questioning law. But there was a moment of clarity when I was told that I probably had about 12 to 36 months to live. Obviously, they were wrong because that was nine nine years ago.

SPEAKER_01 5:36

Wow. But there was thank you.

SPEAKER_02 5:39

Yeah. Yeah, a doctor recently told me that it was my self-advocacy that was probably the reason I was still alive. So I'm holding on to that. Yeah. Um but anyway, when I was diagnosed, there was that moment of clarity that I wanted to spend time with my kids. I didn't want to necessarily be in an office all day long. And at the time of diagnosis, my kids were turning two and four. So they were really little. And at that point, legitimately, if I had died within the timeline I was given, my kids probably wouldn't have remembered very much about me because they were so little. And so there was that moment of clarity of I'm not gonna spend all day long at the office. And so I closed my firm. I, you know, got all my employees to get other jobs. We've shifted all the clients to friends of mine. I mean, it would took, it took about a year, quite frankly, to unravel all of that. But then my kids started school and I started looking around, going, oh, wait a second, I'm I'm alone all day long, like you know, when they're at school, and what am I gonna do with myself? Because I was born in the Midwest, and there's this concept of usefulness that is kind of baked into my my DNA. Sure. Uh plus I went to law school to help people, and so that was always a piece um in the back of my mind that that I had a purpose, that my purpose was to use my talents to experience training, etc., to to help people.

SPEAKER_00 7:04

Yeah.

SPEAKER_02 7:04

And so I started looking around to find the things that would feel useful to me or feel like something that was an outpouring of some of my own experiences and training and all of that. So I started doing a lot of legislative advocacy at the beginning. And for anybody who's done legislative advocacy, it's like banging your head against the wall. You know, you work really hard to push the boulder like just another inch. And so while I still do a fair amount of legislative advocacy, I knew that was maybe not exactly where I was going to be the most useful. And so I went to several trainings, right? Different advocacy trainings. I attended a very dense scientific training called Project LEED, which is uh something that the National Breast Cancer Coalition puts on every year and is amazing, um, but focused on the science of breast cancer. And while I was able to attend and participate in that program, I also really understood not going to be my forte because I don't have a scientific background and it was very helpful, but I knew that that wasn't going to be my sweet spot. Um, and then I got trained as a mentor and realized that this was something that was more up my alley, this one-on-one piece, this coaching, this sharing from my own experiences. And when Leslie started Project Life and then started looking for who she thought would be a good fit, she called me. And I can vividly remember we were driving home from Miami after a visit with some of my family. And she was like, Do you want to join me in this thing? And I jumped at it because it just felt right. I had already been doing some legal clinics with some other organizations, but not regularly, kind of here and there doing different webinars, doing different educational opportunities. And I loved the fact that Leslie lets me make it up as I go and figure out what works. And she doesn't micromanage me, she lets me do my thing. And that has been a real value for a lot of people.

SPEAKER_00 9:14

Sure. And I noticed that you have your master's in education as well, as well as your your jurisdictorate, correct? So as you said, value, wanting to be useful. Uh, I think you've gone over and above. But did this all take place after you had that master's already? This desire to educate?

SPEAKER_02 9:34

Yes. I actually went back to school and got my master's degree after I was practicing law already because I was an educational advocate for children in foster care. And so I would sit at these meetings and felt like they were all speaking a foreign language because I was homeschooled. I didn't go to public school myself. And so I went back to school uh to get my master's degree so that I could better advocate for the foster kids that I was working with.

SPEAKER_00 10:02

Homeschool to UCF. Yes. That's quite a jump.

SPEAKER_02 10:07

I did go to high school. I went to a public high school. Um, and then yes, I got my undergraduate degree at UCF. So I went from a class in high school of less than 100 people to quite literally the largest university in the country.

SPEAKER_00 10:20

Yes, yes, right. I mean, I I know that I know that that feeling, not from that small. Uh but going to Ohio State and being in a you know a lecture of 400 or 500 kids is kind of nuts. And I think one of the things that that taught me at least is that you gotta fight for yourself if you have questions.

SPEAKER_02 10:39

Oh, a hundred percent. The other thing for me too is that I was in an area where there were no people other than white people. We had a few families, I think you know, some African Americans, some Chinese people in our school district, but it was very small. And then I went to UCF, which is very international. So anyway, it was a it was a very big change, but it was what I needed to open my eyes to the experiences of other people that had not grown up like I had.

SPEAKER_00 11:09

Yeah. And I the reason I bring that up is is I find myself going back to when I was younger and I didn't speak much. I had a twin brother who was, you know, the charismatic one, and I didn't have to, right? I was kind of in my shell as a twin. And going to a big school like that, uh, I was actually told by one of my parents I was gonna drown uh because it was gonna swallow me up to go somewhere so big. Yeah, very encouraging. But I I find that that gave me such a great foundation of advocacy in and having to advocate for myself. Do you feel that that time of your life and that transition to such a large institution did the same for you? Or what would you have said you you learned from that experience?

SPEAKER_02 11:56

I I sometimes say I feel like advocacy is just kind of in my DNA. Um I was the oldest of six, and I I did not have any trouble opening my mouth. But the transition from kind of a you know a small pond to such a gigantic pond was something that taught me a lot about effectiveness. That there are certain ways of speaking up that are more effective than others. College is such a good time to try things out, right?

SPEAKER_00 12:25

You know, you can make mistakes at that point in your life. Exactly. Exactly. And I think it's a it's a it's a big learning opportunity too for patients to recognize that you can make mistakes as a patient, too.

SPEAKER_03 12:37

Yes, right?

SPEAKER_00 12:38

I mean, I can't tell you the number of appointments I was kicked out of the office because I was asking too many questions or I was too pushy. Um what are your thoughts on on patients needing to understand where that line is and sometimes cross it?

SPEAKER_02 12:54

So I'm a big believer in we're all gonna do illness, whatever illness we have, in our way. So that you have somebody who has the background of somebody like me, who's a lawyer, who's very much um comfortable speaking up and challenging people. I'm gonna do things differently than say somebody who's a project manager or somebody who has a healthcare background, right? And so when I talk to people about advocacy, what I focus on always first is getting to know yourself, understanding you. So there are people who that idea of walking into an appointment is so incredibly daunting that they just yeah, there's a wall. They're just like, okay, I can't do advocacy then. For me, that is not a problem. That has never been a problem. I honestly think every at some point, someone in every practice I've been at labels me as difficult because that's in all the notes. And and I I used to worry about that. And my husband, honestly, um, he's from Jamaica. And so there's a lot of that worry that by speaking up and being difficult, that I might be told to go elsewhere. And and certainly there have been some doctors who have just been like, you just don't fit with our practice. Here's you know, where you should go, that sort of thing. And that's oftentimes exactly what's happening. Sometimes I've left practices too, because it just didn't fit what I needed. And that idea of voting with your feet to me is something that I don't think anybody should be afraid of. Now, let me take two steps back and say those people who are in rural areas where there's maybe fewer doctors might not have as many options or may not be able to vote with their feet. And so I do think that again, taking two steps back, knowing who you are, knowing what options are available to you in terms of insurance or traveling or access and things like that, it's always a good place to start. Sure. But what we can't do, what nobody can do, is be a passive recipient, because our system is not designed for a passive recipient to get the right care.

SPEAKER_00 15:06

Amen. That is so dead on. Um, I think so many people get dropped, as you referenced, dropped into a diagnosis and don't know where to begin. Right. And if they have that mindset of being passive in healthcare or even I would say paternalistic, right? Looking at medicine and physicians as uh holier than thou and they know everything, where do you feel they should begin?

SPEAKER_02 15:36

Connecting with other patients. I think that has been the number one significant positive thing about my experience with living with terminal cancer is to connect with other people. But the biggest piece is that everybody approaches it very differently. And so those people who are coming from a healthcare background, they have a certain amount of insight. I come from, you know, looking at risk and risk management and reading all the fine print. I look at things very differently, and and so on and so forth to all the different people. And so having that backup, having that background, and I have learned more about what I need to do as a patient from other patients than I've ever learned from anybody in healthcare. Because our system is designed for compliance, our system is designed for people to be quiet and just follow along. Yes, we do.

SPEAKER_00 16:31

Right.

SPEAKER_02 16:31

Sometimes in the notes they talk about compliance.

SPEAKER_00 16:35

You're non-compliant. You mean I didn't do exactly what you wanted me to do because I didn't feel good enough to do it? Right. Yes.

SPEAKER_02 16:44

And I am very compliant when it's something that needs to happen. But if I do not, if it does not work for me or if it does not fit, then I am probably the most non-compliant person. But only but only in the way that it's in my best interest that this is something that needs to happen in this way. But but connecting with other people who are farther along, who have had the experience of advocating for themselves in a particular disease diagnosis, that that is the number one thing that I suggest to people who are newly diagnosed.

SPEAKER_00 17:14

Yeah. Yep. I could not agree more that I learned so much from engaging with other patients from what's worked for them, what I should look out for, who to stay away from, especially as you said, moving with your or voting with your feet. It may be moving states, which I did. And and okay, so I went from New Jersey to South Carolina. I didn't know who to see, but other patients in that area do, and they've had that experience. And going to an organization like uh Project Life that is able to put you in touch with peers, true peers, right? Not not the way insurance companies see peer-to-peer type programs, right? Where I'm a doctor, but I'm nowhere close to your specialty, but uh we'll call it a peer. No, people who are living the same experiences as you are able to help you walk that walk because they're already in it with you.

SPEAKER_02 18:07

A hundred percent. And I don't think there's anything more powerful in the English language than someone saying, Oh, me too. Because we feel so isolated and we feel so alone and we feel like we're the only people who are encountering a challenge. But when someone else has navigated the same thing and maybe are farther along, I can't even find the words to say how valuable from a psychological perspective that is.

SPEAKER_00 18:34

Yeah. If you don't mind, if I could go back nine years on to your diagnosis, and you know, that hits everyone differently. But what were your initial steps?

SPEAKER_02 18:48

So I was misdiagnosed for a bit. So it initially um I was I was 38 and I had my own law firm. I had my boys, they were one and three, and I was still tandem breastfeeding, so I was breastfeeding both of my boys and I felt alum. Now I had never had a mammogram because I was under 40 and it was not indicated.

SPEAKER_00 19:13

So I there's a whole nother rabbit hole we could go down.

SPEAKER_02 19:16

Oh, yes. Now I am fortunate in that the primary care physician that I had did not say I was too young for a mammogram, did not blow me off. She said, let's just let's just do a mammogram just to be sure. She's like, I don't really think it's anything. She actually said she was 95% sure it was nothing. And looking back, I don't know if she said that to make sure that I wasn't anxious.

SPEAKER_01 19:40

Yeah.

SPEAKER_02 19:41

But all the statistics were against me having breast cancer at all. So I went for that mammogram, was diagnosed with breast cancer. Uh, my mother had gone through breast cancer, but we didn't know if we had any kind of genetic predisposition yet at that time. And so when I said, hey, I think we should do a scan and just make sure it's nowhere else, the medical oncologist I was seeing said, you know, you've had surgery, the lymph nodes are negative. All the statistics are against you having anything else elsewhere. And he said, if you really want me to, we'll try, but I think it's going to be hard to get insurance to cover it. You know, there was kind of a ongoing, like, this is gonna be difficult kind of conversation.

SPEAKER_00 20:29

Already in the physician's mindset.

SPEAKER_02 20:32

Yes. And so I said, okay, because I didn't know yet that feeling in my gut, I wasn't trusting it enough yet. And I will tell you, that is the last time I ignored that feeling in my gut.

SPEAKER_01 20:45

Yes.

SPEAKER_02 20:46

So I started chemotherapy, which was the traditional treatment they thought I was stage two. And so that was the next step in the treatment for stage two breast cancer. And it was one of a series of medical mistakes that the nurse checked a box to check my tumor markers, which is protein that runs around in your blood and can be elevated if there's cancer. And so my doctor called me on a Saturday, the day after my very first chemotherapy treatment, when I was still completely out of it because of all the pre-meds, and started talking about how there was something wrong and I needed to get the scan that I had asked for. And so, you know, at that point I wasn't completely freaked out. It was kind of more like, okay, just one more thing.

SPEAKER_00 21:32

Part of the protocol, yeah.

SPEAKER_02 21:33

Exactly. And so I had the scan, and then I got the call that I just needed to come in and see him. It didn't matter when I arrived, I just needed to come. And I was I was back at work by that point. And so I was, you know, juggling a myriad of things at my office. And so when I called my husband and I said, they just called and said, come, it doesn't matter when, but you know, I'll just go, no big deal, whatever.

unknown 21:59

Uh

SPEAKER_02 22:00

I am so thankful that my husband, he had been a caregiver for his father through three strokes, and so a little more familiar with the medical system than I was. Sure. And so when I was like, this is no big deal, he's like, um, yeah, I think this is a big deal, and I'm coming. So I went to my last hearing that day, and my husband went with me, and then we, you know, so we only had one car, and then we drove to the oncologist's office. And initially, when we had met with this oncologist, he said very confidently, this is gonna be a chapter in your life. You are going to get through this, you're gonna get to the other side, and then you will put cancer in your review mirror and you're gonna die of something else. That's what he said in our initial appointment.

SPEAKER_01 22:41

Wow.

SPEAKER_02 22:41

But this day in June of 2017, he sat us down and he said, It's stage four, it's everywhere. It's in what was in my bone, and all of my bones. So it wasn't any organs at that point, but it was literally in every bone in my body. I had fractures all over. I had been dealing with some pain, but I had not said anything because to me, pain in my back or my leg had nothing to do with my breast.

SPEAKER_00 23:08

Sure, yeah, yeah.

SPEAKER_02 23:10

Those were not connected to me. And then he said, now cancer is going to kill you. It is no longer going to be a chapter, but it will be the end of your life. And at that point, he said statistically, 12 to 36 months was what I was looking at as the likelihood of a of a um life expectancy. And of course, jumped into talking about all the different medication and how you know there's all these innovations. So he I feel like he did a great job of blending the worst news you're ever going to hear with there's some hope and and getting me to focus on the right things. The other thing he did was immediately because I was seeing a community oncologist at the very beginning, meaning somebody who um is not at an academic center, it doesn't do a lot of research, is just more involved in the clinic treating.

SPEAKER_01 24:06

Yep.

SPEAKER_02 24:07

Yeah. And he immediately sent me, referred me to one of their um NCI designated, the National Cancer Institute designated cancer centers. It was a few hours away, but he showed me how his ego was not going to interfere with me getting the best care. And then he retired. So anyway, that the first experience was certainly what I would call baptism by fire, because in a matter of a week I was in surgery to put titanium rods in both of my femurs because my both of my femurs were, I was told, one bad step away from shattering. I had more cancer in my femurs than I ever did in my breast. And then I had multiple other surgeries. Anyway, it was it was a big deal. I finished out the chemotherapy that I was on and then went on uh what I would what they call a first line of treatment in the metastatic setting, which thankfully was oral medication. And I was a I've been able to be on oral medication for a fair amount of time in the last nine years, but um I am back in IV chemo at the moment.

SPEAKER_00 25:16

Well, thank you for sharing that story. I think that it's a testament to your strength and willingness to fight for yourself, but also at the same time, you continue to fight for others during that as well. I mean, you went to your last point, your your last, you know, uh um trial hearing that afternoon. You put yourself on the back burner. Thanks for your husband for his intuitiveness and him you know listening through the words. Um I just find so many similarities um between our spouses and the fact that my first surgeon for when I broke my neck retired right after as well, and that was the downfall of me. Um but you know, I wanted to go back there because I want people to understand that everyone's gonna face that differently. Everyone, you know, especially in the United States, right? Where you were in a, as you said, a community oncology practice, and sometimes the doc might have let ego get in the way, right? Most people don't even know what an NCI designated center is.

SPEAKER_02 26:28

And I didn't at that point, right? This was all I was I mean, learning so many things. And I certainly did not jump into advocacy. It probably was about a year before I felt because honestly, I wasn't walking very well. After my surgery, there was I have a lot of physical therapy to be able to move uh easily again. And so it it took me a bit before I felt like I could take my eyes off of the immediate challenges of the day and and think about other people's experiences as well. So everybody kind of does that a little differently.

SPEAKER_00 27:03

Not to mention your boys.

SPEAKER_02 27:04

Yes, yeah, they had turned two and four by the time I was told that it was metastatic, and I vividly remember their birthday parties that year because it was one of these, you know, I was going through early stage cancer treatment. We didn't yet know that I was metastatic, but the milestones and celebrations just take on a whole different weight and a whole different meaning when you're facing something like cancer.

SPEAKER_00 27:35

Yeah. How did you do your own initial research?

SPEAKER_02 27:40

So I looked for support groups. I looked online, I checked out some local options as well. But because of the fact that, you know, the kind of research that I did as a lawyer was very much focused on, you know, what evidence can I present in court? Which if you take two steps back, the the ways that that you that I look at the reliability of evidence that I would submit is really the same way that you evaluate the reliability of an article or of data or things like that. So I was already predisposed to look for, okay, you know, New England Journal of Medicine, looking at clinical trial data, looking at papers that were written by thought leaders. Um on social media, I started following all kinds of oncologists who are immersed in research. And I'm so thankful to so many of these brilliant people who generously share of their own expertise papers and presentations and all of that. So I think I started following like 2,000 different doctors because I was just looking for everything that I could find. And my introduction to the medication was that the prescription that I was given by that community oncologist was exactly what all of my second, third, fourth, fifth opinions would have prescribed as well. So it was a good, for me, it was a even after being misdiagnosed, it was a good entry into what I would call the metastatic experience, in that it wasn't like I had to make a bunch of changes right away after that initial recommendation or that initial prescription. And I got about two years of really good stability on that first line of treatment. Again, not everybody gets that. And so it did get, it gave me the opportunity to be able to start going to conferences, start getting second opinions even out of state, immersing myself. And legitimately, I looked at it as my job. Like I closed my law practice, my kids were at school, my job was to educate myself and my husband, because you know, he is doing the same stuff. We're sharing with each other, learning with each other. Um, he's the king of spreadsheets, thank God, because you know, I'm not as organized as he is when it comes to that. So I it, you know, it was definitely the two of us looking at options. And I have always wanted to be as prepared as possible for each change so that things are not a surprise. Because that bombshell that was dropped on us in June of 2017, I have never wanted to feel like that again, where it's this huge thing, and you have no frame of reference, no ability to know what in the world you're going to do. And to a certain extent, I was not asking the right questions at the beginning because I had no idea what to ask.

SPEAKER_00 30:39

Yeah. That's natural. Completely trying to avoid that. Yeah. But I think, you know, as we've discussed previously, you're you're now doing that work to try to ensure that people don't get into that situation. And how do we help to educate the public so that before they get sick or before they get a diagnosis, they're more aware of of the options and what's out there. And I think that that's one of the biggest struggles and part of that politics and policy, right? To to go into one of your lanes. Um I think, if I'm not mistaken, this will probably be this upcoming midterms, one of the biggest elections around healthcare. I agree. And what are your what are your thoughts for the patient community? And really, when I say patient community, I mean everybody, because at some point we will all be a patient. Um what should people be thinking about and looking at when it comes to legislation and to be knowledgeable at this phase and in their life, even if they are healthy?

SPEAKER_02 31:44

Such such important things to to research and understand about candidates. And one of the things that I, yes, federal elections are so very important because those are the people who are very influential on kind of the macro level, right? But one of the things that I tell people all the time is that our judges, our school board um people, the city commissioners, the any the local elections are just as important as the the larger elections. But um, when it comes to the larger elections, the federal elections, the people who are going to be representing us on these higher levels, yeah, understanding where the person who's running their stance on healthcare is very important. And that to that stance piece has become very different for me over the years because tell me more, I did not fully understand the role of Medicare when it comes to actually influencing private policies. And so even if you're not 65, even if you're not able to access Medicare through disability, a politician's or uh you know, somebody who's running a candidate's position on Medicare and Medicaid, that to me is actually more important than people fully understand because Medicare really leads the way in a lot of ways when they approve various medications on their formularies. They always private insurance, private insurance follows that, right? Yeah. And there's certainly exceptions because you know, if you are, if you have Medicare, you can't get genetic testing to see if you have a predisposition for cancer until you actually have cancer, which still boggles my mind. And there is a bill pending where we're trying to fix that. But it's easier to get genetic testing to see if you have a predisposition for cancer through private insurance than it is through Medicare. That is an exception to so many things. So to me, looking at those government programs and looking at the candidates' stances on those, that to me is is a good place to start because they usually talk about that. Uh, looking at someone's voting record, if they've been an elected official in any other context, because they can say a lot of things on the campaign trail, but looking at what they've actually done, that to me is is really uh that can be really telling. That can show what's I certainly people can change their minds and do things differently and all of that. That often. So looking at what they've done versus what they've said, that could be something that's really important. And the third thing that I look for, which is maybe something that doesn't sound very uh scientific, is I look for people who have had someone with a serious diagnosis in their family.

unknown 34:30

Yeah.

SPEAKER_02 34:31

Because the people who have sat by somebody's bedside, the people who have walked a serious, walked with a family member through a serious illness, they have an understanding of our programs and what's important in a different level, in a different way. So those would be my top three.

SPEAKER_00 34:52

That's and amazing feedback for everyone because I could not agree more. I watch our state politicians here in South Carolina, as well as our federal ones, and I'm shocked with some of the language that they use. Um, even someone like Josh Alley, who you know, him and Elizabeth Warren are leading the fight to uh change prior authorization, but also PBM reform and all of these entities that play middleman in your healthcare. He uses the word pharma to describe PBMs. And you're laughing, and our audience should know that those are not the same thing. They're nowhere close to the same thing. Um yes, the PBM is the one that negotiates the price with the pharma company, uh, but they tend to like the higher price at the PBM, higher price and higher rebate. So we're when and even historically, when pharma has tried to reduce the price of drugs, it's the PBM that then blocks those drugs from being able to be used. So, you know, the fact that your politicians don't understand some of the basics in healthcare is a worry. Um and something that you should look out for.

SPEAKER_02 36:07

Yes, absolutely. Now I've I've experienced so much in legislative advocacy that you're talking to health staffers far often more often than you actually get to talk to an elected official. And then it's those people who are tasked with educating the elected official on a particular topic. And it always cracks me up when it's you know a 22-year-old right out of college who we're trying to help understand the depth and the gravity of what we're talking about. But that has more often than not been the thing that has helped because it is those people who are educating our elected officials who are making suggestions in terms of co-sponsoring and things like that. So if anybody has the opportunity to go, we sometimes call them Hill Days, sometimes we call them advocacy days, where it's an organization that organizes meetings with various health staffers. Sometimes it's the person who is working with your elected official where you are a constituent, and sometimes it's not. But but doing that with an organization, that has been the most valuable to me, not because on our own, we're not as effective as when we come with five or six or ten other people, even if it's on a Zoom screen and we're not actually physically sitting in front of them.

SPEAKER_00 37:23

Yeah. I mean, uh, what are your thoughts on you know, patients who don't think they have anything to add to this discussion? Right. And and that their their story is their story. It doesn't matter, you know, they're just a small fish in this big pond.

SPEAKER_02 37:38

We are all small fish in this big pond, but our experiences are how they understand the impact on a real person. And so I think about back when I was practicing law, we, you know, there would be legislation that would pass. And I specifically remember years ago one passed that uh reformed alimony. And there were mistakes in the bill that passed. Some things were absolute typos, some things were just they were, it wasn't intended that way. And so what we called a glitch bill uh was then needed in order to correct the glitches, right? But the problem was is that in that initial bill, in my opinion, they didn't consider enough how it would impact different groups of people that simply weren't advocating. Uh, there wasn't a representative for particular groups of people who then became significantly disenfranchised. Sure. And it was because a lack of it was a lack of understanding of the application. So we as people can come talk about if this passes, this is the application on my life. And let me tell you in real time as a real person how it will apply to me. True. That's what they don't have. They don't have the application piece. So each of you who are experiencing healthcare, you are experiencing the application of these bills, the application of these laws or regulations or whatever they are. There's they can't understand that without our input.

SPEAKER_00 39:11

Yeah. I think it's so vital as you talk about the glitch, glitch bill. Um I mean, we're we're now in a fight for 340B where we're trying to define what a patient is. Right. Um, and when when the minutiae of a bill and getting back into the Clinton days of the definition of the word is is, um, it seems like we're there again. But that's that's where it does take as many folks as possible to share their stories and share what they've experienced. But more importantly, as you've referenced, these disenfranchised groups who uh, for good reason, don't feel like they matter uh because of historical issues and the way that these communities have been treated. But I think that their voice is more important than ever. Um, how do we rally that voice?

SPEAKER_02 40:07

I think that is a question that everybody is just somewhat desperately trying to figure out because in in our community, the metastatic breast cancer community, people who are not lily white like me tend to die twice as fast. And so for us, it is literally a matter of life and death. And so I do find that for somebody who is living already with terminal cancer, number one, uh, we don't care so much anymore. Um number two, I think there's a crystallizing of things when you are faced with your own mortality. And so making sure that the people who are the most negatively affected by whatever we're talking about are in the room. That to me is one of the things that we can use our white privilege to accomplish.

SPEAKER_01 41:00

Yeah.

SPEAKER_02 41:01

Um, also making sure that we're partnering, you know, whatever organization we're part of, making sure that we're partnering with the organizations that are actually serving those communities.

SPEAKER_03 41:13

Yeah.

SPEAKER_02 41:14

Because one thing I've learned as a white person married to a black person, my husband is very dark-skinned, is that I can't speak for him. I can speak up about things, absolutely. And it's my responsibility, especially it's my black husband and my brown children to speak up, but I can't speak for their experiences. And so I see a little bit too often that organizations are not pulling in the organizations specifically serving those disenfranchised communities because they're out there. Yep. Um, and and we're not supposed to speak for them. And that's not the right thing. We need to bring them alongside us. And that to me is something that's very important.

SPEAKER_00 41:53

And to do so, uh, I would say also thinking about the ways that we reimburse the community for their time, right? I think this is a big a big sticking point that we have discussed and something that uh we're working on with the with industry, but I think the entire healthcare community needs to focus on is how we a value the and the experience of the patient and and the patient's voice and lived experience that they've had in total. Um but also pay for it. Because if if we are expecting patients to show up, if we're industry and we want to do uh an advisory board and we want to gather the experience of those patients, to pay a hundred dollars per hour is ridiculous. It's exactly insulting. The fair market value, so to speak, is the words that always get thrown around, right? What's the fair market value? Well, uh it speaks volumes to see that the fair market value for a clinician. Mind you, yes, they treat, they see patients, but they are not the patient. There are very few clinicians that are also the patients. To pay, let's say, uh, six to seven fifty an hour, maybe even upwards of near a thousand dollars an hour for their time is one thing. But then to turn around and then say to a patient, well, your time's only worth a hundred bucks an hour and no, you know, no extra stipend for travel, no extra stipend for stay, any of those elements, completely ridiculous.

SPEAKER_02 43:31

Insulting. Yes. It is incredibly insulting to be the person sitting there with the most valuable part of the discussion and yet to be compensated in as compensated the least. Yes.

SPEAKER_00 43:46

Yeah, yeah. Yeah. And I think that um this also speaks to uh the fair market value calculators that are out there. I think the National Health Council has the most widely discussed and pointed to. Fair market value calculator. And that's one of the areas that I plan on starting my conversations. I actually have a call with them coming up. Yeah. And it's about something different, but I'm going to definitely bring it up. Um where do those numbers come from? You know, and is this the standard because it's what everyone has done? Or is it the standard because we actually did an analysis and we identified what the value is of that time? I think that's a big question to be seen.

SPEAKER_02 44:30

100%. And I have been told, so sort of like with these pharmacy benefit managers being in between insurance and industry, there are often these marketing companies that are in between pharma and patients organizing ad boards or organizing um discussions.

SPEAKER_00 44:48

Pensions of thousands of dollars to organize the discussion. Yep. Yes.

SPEAKER_02 44:53

And so it is often these marketing companies in between pharma and the patient, and in my experience, are the ones who are communicating this is what the fair market value is. And I have been told wildly different things by different. So clearly there's no consistency. And because of my background and experience, and I often have just as much education as the other people sitting in the room. Yeah. My pushback, my pushback is different than than other people because I'm sitting there saying, wait a second, when I retired, when I closed my law firm, my hourly rate was far more than what we're talking about. And so wait a second, what are you paying that person? Many times they won't tell you, but I've had many colleagues who have privately shared these things with me. And so the numbers you're talking about are the numbers that I've experienced personally. And so then I'm like, well, I need to be paid the same as everybody else.

SPEAKER_01 45:55

Yep.

SPEAKER_02 45:56

But that amount of value that I place on myself, some people might call it arrogance, but that is different from a lot of patients. Some patients are so honored that they get to share their experience that that that's enough for them. And I support that 100% because however anybody wants to do this patient advocacy thing is up to them. What I try to help people see is that these contracts, these budgets, these the paperwork that's coming from pharma through these pharmaceutical, through the marketing companies to the patient, a lot of times that's the template that they use for the next one. And so if we're thinking about maybe not just myself, but maybe the next patient who's dealing with this pharma company, I try to think in terms of even if I'm not going to accept an amount of money as an honorarium or whatever, because many people living on disability have a limitation on what they can make before that disrupts their benefits. I try to think about how I can influence the budget for the next time. And so if I don't want to accept or, you know, aren't in the position to accept what they might be paying me, what I do is say then I want that donated to X so that it's always in the budget for the next time. And so, you know, if you're the type of person who says, I'm getting out of it this honor to be able to share, to be able to influence, to be able to do the thing that feeds my soul. And that's not money, great. That's fine. Just think to the next person and think about how you can advocate for the equality, the fairness of compensation, even if that's not going to impact you, it'll impact the next person that pharma company is dealing with.

SPEAKER_00 47:51

And I would say that you bring up a really good point about all of us that you know, if we have a voice to ensure that other voices are included, number one, um, which brings me to my point. And I apologize, I just I'm really clumsy. And I spilt I spilt a drink. So that's important to clean up. It's part, it's part of still some neurological stuff that I deal with, is that my hands, and I'm Italian, so I talk with my hands a lot, and uh sometimes I'm good that I always have paper towels around me because these things just go, and Poppy just kind of got on electronics.

SPEAKER_02 48:28

Well, and it's amazing when you know they start digging around in your body and you want them to fix the bones or fix the structural pieces. There's so much soft tissue and neurological stuff that just gets affected. And you know, I've loved my surgeons that have done an amazing job on the surgeries that I have had, but the ortho guys just don't think about the soft tissue as much.

SPEAKER_00 48:50

They really don't. It's so funny you bring that up because I remember this the last surgeon I had on my spine who fixed the pain issues. He let me go without a any collar, right? So he had just fused 11 levels of my spine uh and was so confident you don't need a collar, you're good. You don't need to do any any physical therapy, nothing's moving, it's fine.

SPEAKER_03 49:13

Oh my!

SPEAKER_00 49:14

But yes, the software issues are real, right? I mean, I still have uh vestibular nervous system issues, and uh right next to my vagus nerve is right where I'm fused, so I'll have panic attacks some days, and for no reason, right? It's just that's the day, and today's one of those, so I'm a little shaky, but I know that it's just the residuals of my spine, right? And I'm I'm lucky at least to be on this side of it. That yes, that is now what I complain about, rather than the intense 12 out of 10 paying days.

SPEAKER_02 49:45

Right, but um you can be great, you can be grateful for the thing that you recovered from or you're no longer dealing with, and also at the same time want things to be better.

SPEAKER_00 49:57

Yes. Oh, thank you for that. You know what? That also brings up a really good point, and we'll get back to to what we've been speaking about with regards to the fair market value, about drugs failing patients, not patients failing a drug.

SPEAKER_02 50:14

Such an important distinction that I I mean I still have to correct doctors who automatically say that.

SPEAKER_00 50:21

Yeah. Yeah. So and for for anyone who's not familiar, you know, if you've taken a medication and and it stops working for you, which happens all the time, it doesn't matter what the diagnosis is, you take it long enough, your body is like, ah, good, that's good, thank you. I mean, I you get there in my case with 30 milligrams a day of oxycotin, where it's like, yeah, check the box, what's next? Right. Um and it's not that I failed the medication, it's that the medication failed me, correct?

SPEAKER_02 50:52

Yes, 100%. In the cancer space, metastatic cancer space specifically, we're only alive as long as there's a medication available to treat our cancer. And so as we begin to run out of treatment options, you start to hear some of that verbiage come through with some patients where they're taking on the responsibility that that, and and it legitimately, I have seen this kind of work out in other ways in people's psyche as they talk about even other things, where they they feel as though they've done something wrong. And that is a burden that no patient should ever bear. There are many statistics. Yeah. Yes, there are so many reasons why drugs stop working, and cancer is insidious and it is very good at mutating. Sneaky. Yes, it is sneaky. That's not our responsibility. The medication failing is not our responsibility. It is not our responsibility when the toxicity of a treatment is too much and we say, I'm done. I cannot live this way. So I think a lot of it is putting the right responsibility in the right place. Not to say that we should be angry at Pharma or angry at our doctors. It's more that that is not our burden to carry.

SPEAKER_00 52:07

Words, words matter, right? It does. Oh, yes. And and this that one hit me so hard when we last talked that I went back to the app that I'm building for patients and changed the list of medications that I had tried and failed to the list of medications that failed me. Oh, I love that. Because it's it is so true. You you do take on that burden of oh, I did. And even if you know you did nothing wrong, there's just that connotation in the back of your head that maybe I should have done something different, or this med should be working for me, it's working for everyone else. What's wrong with me? Yes. It's just that medication's not not the right one for you. And you are special. Because you are, everyone's special. Um, I think that's just such a big piece for people to take away is that these medications fail them, they don't fail the meds.

SPEAKER_02 52:58

Yes, absolutely. 100%. Don't don't pick up a burden that's not yours.

SPEAKER_00 53:03

Oh, I love it. I love it. But uh going back to the the fair market value, and you're talking about uh it's our right, our responsibility to have these discussions if we're having them. For organizations like mine alone, right? I am driving up the bar for what I pay for people to to engage in the market research above the fair market value by about uh uh usually it's about $150 over what the current fair market value is. But at the same time, you bring up a really good point about these contracts that take place between organizations like mine and industry, in which we are often asked to use industry's fair market value rate. Yep. We can challenge that. Yes, we can have that discussion, and if I have clear evidence that I have been paying patients higher than that, then I can bring that as evidence to the table because all it is is a legal team saying, Well, I don't know if everyone else is doing it that way. Yep, here's here's the data. Here I can show it to you. Yes. And it in turn serves everyone else when we do that.

SPEAKER_02 54:12

100%. I've talked to a lot of the nonprofits. So Pharma will approach various nonprofits to get to patients that they need to connect with. And the one that always comes to mind is force, which is the hereditary cancer uh nonprofit. It stands for facing our risk of cancer empowered. And a lot of the nonprofits, force included, will ensure that patients get paid at all, because that is you know something that historically often doesn't happen is people, you know, it's it's a free type of thing. But one thing that a lot of nonprofits don't always do is challenge the amounts. And so I've challenged some of these nonprofits to say, don't, I'm not gonna pass on an opportunity unless you're paying adequate compensation, not just something at all. Um but you know, it it's hard to have to be the organization that takes that stance because then pharma doesn't come calling as often. And so it's this ecosystem that is a little delicate. And um, you know, I've long either I've long thought that we should have a union that the patients should unionize so that we're doing some collective bargaining together.

SPEAKER_00 55:22

Yeah, a coalition, at least.

SPEAKER_02 55:24

Yes, yes, absolutely. Because we deserve to be compensated at the value of what we are bringing. And I think it reveals the actual value that is being placed on patient involvement. People say all the right things, but if they don't put their money where their mouth is, that to me is revealing.

SPEAKER_00 55:46

Yeah. And and I I could say we could sit here and do as many economic evaluations as as our heart desires, but that rate is probably somewhere near $350 to $400 an hour at minimum.

SPEAKER_02 55:59

I totally agree with you. Yes.

SPEAKER_00 56:01

Because you're bringing into account the years of lived experience, both pre-treatment and during and post, right? Depending on what that patient's faced and their specific backgrounds and where they grew up and their socioeconomic status. All these metrics that matter so much for clinical trials, for example, well, they should matter just as much when you're thinking about a marketing message or uh how you bring things to patients or the language that you're gonna use. That same value of what you had to dig through to find those patients for that trial is the same exact process now that you have to apply and pay for for patients to provide their input and to make sure it's more than adequate in payment. Now, you had talked about you had talked about force and just hereditary cancers overall, but I think you know, we had kind of skimmed over you didn't have genomics done early in in your diagnosis. And I know that currently, I think the last numbers were still over 60% of patients are not provided tumor profiling or genetics on to understand the genetic issues around why they have that cancer or what changed in the cell. Where did that come up for you? And what should patients be looking for or asking for in those cases?

SPEAKER_02 57:25

Yeah, so the way it happened for me was you remember those statistics that they were sharing with me when I asked for the scan, when we discovered that there had, in fact, I had a very high disease burden. That made my doctor go back to the drawing board and say, wait a minute, this just doesn't, it doesn't compute. It doesn't make sense. And because I was diagnosed premenopause, that is typically a uh factor for the likelihood of having hereditary cancer. And so at that point, they did the genetic testing to see if my DNA that I inherited from my parents was mutated, and we found a germline mutation at ATM, just like you get money out of the ATM. Um, and then then they went back and looked at the genomics uh or the mutations specifically acquired by the cancer and found even more mutations, which some of them have become actionable. And so legitimately, I believe that if anybody is diagnosed with cancer, that they should immediately be offered not just BRCA, but all of the mutations associated with, and I'm talking specifically in breast cancer, but um, I I was they did BRCA testing initially for me, and I did not have BRCA mutated. And so they the the surgeon did not do the full panel. Yeah, exactly. And so everyone being offered the full panel of testing. Um, and then for people who have cancer, anytime the cancer changes, you need to have a new genomic test done. Not the germline piece, because our genetics don't change, but the cancer does. Sure. And so the pushback that I've heard, number one, is cost, unfortunately, because a lot of companies aren't doing as well as they should in terms of what they reimburse to some of these genetic labs, right? So the great thing is that companies or organizations like Force exist. There is always copay assistance programs, patient financial assistance if you have Medicare. So don't, I you know, I tell people all the time, don't let cost be a barrier because there are ways around it. There are ways of dealing with it. There are organizations that specifically provide copay assistance for patients. And so you might need to get creative to get it covered, right? That's one of the things that can be a little challenging, but you need it every time the cancer changes. Another thing I hear from doctors will be that, well, if the information we get isn't actionable, then what are we, you know, why would we do it?

SPEAKER_00 1:00:10

Why would yeah.

SPEAKER_02 1:00:12

The thing is, is we don't know what's going to be actionable in six months, in a year. And so having the baseline information, having the information each time the cancer mutates so you can see the patterns, that is going to be important, maybe not to the doctor sitting in front of you who doesn't necessarily know how to apply that information. Yep. Somebody else will need to use that information. And so patients consistently asking for more information each step along the way, even if you don't quite know what to do with it yet.

SPEAKER_03 1:00:43

Yeah.

SPEAKER_02 1:00:44

That builds the foundation, that builds the database so that when we know more, we can go back to the database and pull out the things that become relevant.

SPEAKER_00 1:00:55

Yes, the acronym is variant of uncertain significance, right? Yes. And it's only uncertain until there's enough proof points to say it's now certain. And if we just continue to put our head in the sand and say we're we're not going to look because we're afraid of those buses, variants of uncertain significance, then we don't gather enough data to be able to point us in the right direction.

unknown 1:01:19

Yes.

SPEAKER_02 1:01:20

So that's the same thing. And the more people the more people who get genetic testing, the more data they have to look at all of the results. And so even if your result, like if ATM had been mutated both in my body and in my husband's, yes, that could have meant a very significant developmental issue for my children. And so we got him tested. He has no mutations, which is awesome. And we I love that he has no genetic mutations. And so, but I didn't look at that as a negative. I looked at that as, okay, that is a category we don't need to worry about at this moment. Sure. But I would not have known that without the testing. And so, you know, I realize that some people, it's hard to live with the specter of the potential of cancer hanging over their heads, right? And so even if you don't want to know, you can get the testing done so that your doctor knows you don't have to open that envelope if you don't want to specifically know that information, but give your doctor the tools that your doctor needs to make good recommendations for you.

SPEAKER_00 1:02:23

And I would even say for people who may have utilized, for example, Ancestry or any of those services that did DNA screening to identify your heritage, know that the entire genome was sequenced. That you can ask for that data file. And I have my own on my computer here. And believe me, it's it's a massive data file of all types of sequences of A, T's, Gs, and C's. And you might not know what that means, and and there may say, you know, that there's things out of order. But to be able to have that data to know what you got from your parents, right? Talking about, as you referenced before, just the hereditary component and to have that on you, that can maybe not have uh have you may not have to have the sequencing done on yourself uh to understand from your parents. You can just go to the somatic.

SPEAKER_02 1:03:18

Yeah, let me put my lawyer hat on and say, yeah, don't do any of that until you have life and disability insurance in place. Because they uh health insurance companies under the ACA are not allowed to discriminate against us based on pre-existing conditions or a genetic predisposition for something. But life insurance right now and disability insurance companies are allowed to discriminate based on that information. Now, there's a bill pending to change some of that, but what I tell everyone based on our current climate, the best thing to do is to have your life and disability insurance squared away, and it's a lot cheaper when you're younger, uh, before you go looking for the potential for any genetic predispositions for anything, because that that information could be used in a way that you don't want it to be used.

SPEAKER_00 1:04:08

That is such valuable information. Uh, you mean I got my life insurance back at 25, which which what 25-year-old does that? But I am actually healthier now than I was at 25. Amazing. At that point, I was on tons of opiates and they had those those results. So because of that, I had a higher rate. And I just went back a couple of years ago and redid it. Uh, now being off of those meds for three years. But again, I did not have the genomic information that I have now, and it's not in my medical record. I keep that for myself, just for the future. To ensure that folks are aware, do you happen to know what that bill is for life and disability insurance that is somewhere?

SPEAKER_02 1:04:53

Not off the top of my head, but I I can send you the bill number. It was just part of the um advocacy day we just did with Force. And uh yes, I will send that to you.

SPEAKER_00 1:05:04

Vital component for people to know and to be aware of and to vote and to let their representatives know that they feel it's important.

SPEAKER_02 1:05:12

100%. I I tell people all the time, my experience. When I was going through fertility uh treatments in order to get pregnant, I they did not um authorize a genetic screening for me at that point. And so for want of paying two, three hundred dollars, my insurance company has now spent five million keeping me alive. And you know, would I have been able to avoid my diagnosis? I don't know. But if I had the information, I might have been able to take prophylactic measures, which is what my other family members are able to do now because of my diagnosis.

SPEAKER_00 1:05:49

And so these And because you have spoken up for your family members.

SPEAKER_02 1:05:54

Yes, yes, they all know about my diagnosis, and we figured out you know where it. Came from and you know, uh, which side of the family, and that side of the family has been able to take whatever measures they have wanted to take in terms of prophylactic or screening or whatever. But that type of information, oh nothing. Yes, absolutely. Whatever they want to do. But that kind of information is really, really valuable. And I think that we should bend over backwards more to allow people to have that information. But again, I keep running into this somewhat paternalistic perspective that, well, that that'll be too difficult for people.

SPEAKER_00 1:06:30

Or people can't do it for everyone, right?

SPEAKER_02 1:06:32

Or they won't know what to do with that, or it'll be psychologically injurious, is one of the phrases that I have I have heard from from medical professionals. And I get it. I I understand having been a professional that then filtered the information that I knew to my clients. And I get that that's important and everything else, but I also absolutely 100% believe in self-determination that we as people, we as individuals, we are the ones who are making the decisions for ourselves. That is our legal rights and our legal responsibility. Nobody should be doing that for us unless we have delegated that in some way. And we also have that ability to delegate decision making to somebody that we trust. But walking into a hospital or walking into a doctor's office doesn't mean that we automatically delegate decision making to the professionals sitting across the table from us or across the exam room or whatever.

SPEAKER_00 1:07:28

Yes. Because at the same time, there are so many providers that I've worked with and continue to work with that don't yet understand that there is a wealth of information inside of that patient on the other side of the table. Yes.

SPEAKER_02 1:07:40

I always said to my clients, I bring the law, you bring the facts together. We have to do it together. We have to put those two pieces together. And so I try to use that concept too when I'm talking to some of my team. You bring the medical knowledge and training and experience and everything else. I bring 40 plus years of living inside my body. That is more valuable sometimes in decision making than the recommendations that I've gotten in in various contexts. And so that's the piece I don't know that patients value enough.

SPEAKER_01 1:08:15

Yeah.

SPEAKER_02 1:08:16

And, you know, 15-minute, 10-minute appointments, it's hard to convey all of that to the person sitting across the table.

SPEAKER_00 1:08:23

Yeah. You're dead on. And so many times, because of life, we don't slow down to think about what we want to say to the doctor or questions that we have. That's one of my missions is to empower patients to have that time. May it be right before the appointment or the day before, but just to have a goal going into that appointment, to have at least one question that will slow the doctor down and let them see that, oh, you're different. You're not like every other patient because they will begin to treat you differently.

SPEAKER_02 1:08:53

Yes. The other thing that, you know, as a professional, when people would come to me and ask me a question cold, where I hadn't had the time to think through or research and all of that, it changed a little bit of my perspective too, as I'm asking questions. I've somewhat blindsided perhaps this professional. And not everybody thinks very quickly on their feet, right? Some people need time to kind of to really mull. And so one thing that I've done with some doctors as I've gotten to know them is I'll send those questions in my portal a day or so ahead of time so that they're ready to answer my questions. And I've had appointments where my doctor literally walked in with the portal message printed out in their hand and was like, okay, question number one, yes. Question number two, no. No, yeah, and that was incredibly valuable because we honed in on the things that were important to me. Yeah. And then, you know, they understood a little bit more about where I was coming from, but they had the time to prepare. So just remembering that your doctors are patients too, right? They're not patients, people, they're people.

SPEAKER_00 1:09:58

People. We're we're all people, right? And if we could, if we could get rid of the word patient and just see them as people who need to utilize healthcare, I I wish that was a there was an easier way of saying that. Um that's all we are. And and physicians, as they say, well, as they say, what do you call the guy who graduated last in med school, guy or gal, doctor, right? We're all all just people living off our working off our lived experience. And it is so vital that you as a patient recognize that you bring a lot to the table as well. And I just appreciate the work that you have done, Abigail, in fighting not just for yourself and and fighting that fight now for nine years, but also fighting for your loved ones, for your kids, for your family members to understand that information as well. You didn't put your head down and mull through it and just just grin and bear it. You got active and you educated. And that is such a vital testimony for everyone to hear that it doesn't have to be this solo fight as a patient. There's help out there.

SPEAKER_02 1:11:03

100%. And legitimately, as a patient, just filling out a survey after your appointment, that's advocacy. That's engaging more in your care, reflecting back to the organization, what happened in that appointment. Anytime you ask a doctor a question, that's advocacy. So you don't have to be arguing with your doctor, you don't have to be an expert. You just have to use your voice to speak up in the way that is the most comfortable for you. And it's not this big, it doesn't have to be the big thing. You don't have to found an organization, you don't have to be on the big stage to be an advocate. You just need to be true to yourself and do it your way.

SPEAKER_00 1:11:42

I absolutely love that. Again, before we break here, I want to bring some attention to live at stage four. Live from stage four. Yes, live from stage four. Tell our audience about your show and what that what your show is all about.

SPEAKER_02 1:11:58

So I have been honored to be asked by Victoria Goldberg, who is our executive producer at Live from Stage Four, to participate in this podcast, which is patterned in some ways after what I was talking about earlier with Project Life. It is the news that MBC patients want by the MBC patients. So all of us on the uh team are also living with metastatic breast cancer. We interview doctors. We certainly focus on the science. We, you know, the ASCO annual meeting, the American Association of Clinical Oncology just finished up. And so we're we have been interviewing doctors about all the data that has been presented, but we also interview patients. We have a lovely, what I think is lovely weekly uh symptom spotlight where we talk about a symptom that people experience on particular medication and how people have dealt with it. Um I found more hacks and more like just, you know, uh what is it when a medicate you're taking a medication off-label, off-label application of things like over the counter and all of that that people use to uh to manage your quality of life. And so we really try to focus on what are the things that are going to improve people's quality of life, certainly the scientific information in and we find those doctors who are able to translate the science into digestible, understandable information, but then also hearing from patients with that that lived experience, which I arguably I think is probably the most valuable piece.

SPEAKER_00 1:13:33

It's an unbelievable opportunity to be educated about the metastatic breast cancer community, about the treatments that are available, about life and and living in the with this condition. I cannot thank you enough for all of the work that you do for patients, being one myself and just knowing what it can be like to think that it's you're all alone. To know that there's an organization like Project Life out there that's providing not just resources for patients, but resources for their caregivers, their kids, their their parents. You've thought about the whole ecosystem of what that patient lives through and have come alongside of each of those people that help in that fight. I think if I'm not mistaken, the last stat I had seen was somewhere around, I think it's three and a half. Don't tell me how you get three and a half people. But for every one person that's been diagnosed with cancer, there's usually about three or four that go through it with them. So we're all gonna be touched at some point by it. Yes. Why not get engaged now? Get yourself educated when you're healthy.

SPEAKER_02 1:14:42

Yes.

SPEAKER_00 1:14:42

And that's the most important thing.

SPEAKER_02 1:14:46

Absolutely. Yes. And you know, going back to force and the work that I helped with some of the support groups there, I while it's only about 12% that uh breast cancer is about linked, about 12% is linked to a genetic predisposition for cancer, I actually believe it's much, much higher than that. We just haven't discovered the genes yet. And so that has become something very important to me, is just that people are getting their screenings done, getting genetic testing done, because as we know more, people are gonna be able to live longer, people are going to be able to live better. And it's really not a question of if for most of us, it is a question of when.

SPEAKER_00 1:15:28

I've heard that for both breast cancer for women and prostate cancer for men, that if you live long enough as a male, you're gonna get prostate cancer. Yeah. It's just one of those androgen-driven cancers, right? The cells have broken down and don't know how to turn off their need for testosterone. And in breast cancer for with estrogen, it can very much be the same. But obviously there are different types of breast cancers and what they're fed by. Uh but as you said, they're sneaky little bastards and they find a food supply in some way. Uh, but the more we know about it by via genetics and by the tumor profiling, the more we know how to mount the fight.

SPEAKER_02 1:16:08

Absolutely. And knowing that there are options and there's treatments available and that it is something that can be lived with, not you're not you're living with it, you're not dying from it, right? Is is a tagline that we we use a lot in our community. So, but the community that you talked about, being able to come alongside people, there are certainly downsides of that because people living with terminal cancer die. We just had somebody in our community die very recently, and that was just a devastating blow.

SPEAKER_00 1:16:35

Yeah.

SPEAKER_02 1:16:36

And so I always think with that downside of this work, with the struggle, the burden, et cetera, is it worth it? And the very next day after I went to her funeral, somebody who was newly diagnosed contacted me, and I knew it was worth it because that person now is set up to begin this experience in a very different way than they were before we had that conversation. I'm not gonna say I I fixed anything, but it was more that she knew that she wasn't alone in the experience. And while it's sad to lose people, it's still worth it to connect with the next person who's diagnosed.

SPEAKER_00 1:17:10

Like you said, you've your your organization has redefined it as living with this condition. We're all we're all gonna die someday. True, right? We're all we're all dying every day, ultimately. It's getting into ensuring that we're all educated about what we're living with. Uh yes, whatever that condition may be, and being as educated and empowered as possible for that self-determination as you talked about, to ensure that you are prepared to engage in the fight, not be a passive participant, be an actively engaged individual in your own care.

SPEAKER_02 1:17:47

That is to me the the only thing we can do when we're faced with something serious, when it's a especially when we're having to interface with the US healthcare system as it as it is right now, uh, that is just so so very important.

SPEAKER_00 1:18:02

And we will be continuing to mount the fight, as I know you will, um, every day to ensure that that our legislators hear from our communities and ensure that our voice doesn't go by the wayside. There is so much that we can all do. May it be voting with our feet, uh, as Abigail has said, or may it be at the voters' box at the ballot box itself. We can all impact this system and make it into what it should be for all of us as individuals that participate in it.

SPEAKER_02 1:18:32

Absolutely. The the bottom line is showing up for it, right? That's right. And you know, we always talk every time we have an election about voter turnout. And my husband, who is a naturalized citizen, he and I, we have voted in every election we have been uh you know permitted to based on where we lived and and criteria and things like that, because that is how we show up in in this country. And so I hope, I hope there's a big voter turnout as we enter this season of elections.

SPEAKER_00 1:19:02

I I know that we will both be doing all that we can to ensure that there is so yes, Abigail. I have it's been a privilege to hear your story for you to share with our community the valuable knowledge that you have and that you continue to provide every day. We'll ensure to link both to Project Life and to Live from Stage 4 in the notes when this uh episode goes live so that patients can have it easily uh have the opportunity to access that. But any final words.

SPEAKER_02 1:19:32

I knew you were gonna ask me that. I think the biggest thing that I have taken away from my experience is you need to value yourself the way that you would value a loved one. And so if you are sitting in a doctor's appointment, if you are having an experience within healthcare or otherwise, and you would not want your loved one to experience what you're experiencing, then you know you need to speak up.

SPEAKER_00 1:19:59

I love that. I love it. My final question for you was going to be what would you tell your 20-year-old self? But I think that that nails it on the head as that that is probably what I would tell my 20-year-old self. Yes, absolutely.

SPEAKER_02 1:20:14

That didn't get genetic testing.

SPEAKER_00 1:20:16

There you there you go. There you go. Well, what we'll also do is link to force as well. So if anyone's interested in learning more about that and understanding what is available, um, it's also something that we're doing through the Advocate Bridge website for anyone who's looking for a patient advocacy organization. They can go to advocatebridge.org, put in, you know, it could be breast cancer, it could be whatever indication that they've been they're facing, and we'll curate all of the disease state nonprofits that are out there to support patients, but also all of the financial support options that you said that are out there are also going to be listed. Um we'll ensure that I want to double check that force is also listed on that financial side as well for the uh can't hereditary cancer screenings.

SPEAKER_02 1:21:00

It's a wonderful resource. And you know, when you're at the beginning of a diagnosis, you just don't know what you don't know. And being able to go one place where all of that is listed is is very valuable. It's really hard to find stuff on your own.

SPEAKER_00 1:21:12

I'll go back, I'll go back to when we both entered big colleges. Everything got a lot easier when you knew where things were and you knew your way around, and you kind of knew some of the lay of the land and what the different building names were, right? You're just giving yourself that little bit of education to feel secure. And that's what I would advise anyone to do.

SPEAKER_02 1:21:35

100%. Absolutely.

SPEAKER_00 1:21:36

Thank you for the opportunity.

SPEAKER_02 1:21:38

Yes, it's been wonderful having this conversation.

SPEAKER_00 1:21:41

Thank you so much.