Alejandra Campoverdi on Women’s Health and Empowerment
This month, we talk to Alejandra Campoverdi, Women’s Health Advocate and First CA 5 Commissioner. Alejandra shares her perspective on being BRCA positive, her family’s battle with breast cancer, and the importance of access to quality healthcare.
Alejandra is a public figure and a media executive who worked as a former White House aide under President Obama and ran for US Congress in early 2017.
Dr. Kiki: Welcome to Sequenced, where we talk to healthcare influencers, investors, and advocates about the changing world of healthcare. This podcast is brought to you by “Color,” a health service company. And I’m your host, Dr. Kiki.
In this episode, we talk to Alejandra Campoverdi, a public figure and media executive, who worked as a former White House aide under President Obama and ran for US Congress in early 2017. Alejandra shares her perspective on being BRCA positive and the importance of advocating for women’s health and empowerment. Alejandra, welcome to the show.
Alejandra: Thank you so much for having me.
Dr. Kiki: It’s wonderful to get you in here. What are you doing these days?
Alejandra: After the campaign, I was appointed to be a commissioner for a First 5 California and I’m really excited about that work. It’s all about early childhood literacy and healthcare for California’s littlest ones. My advocacy around BRCA is something that’s really important to me and has continued to be, front and center.
Dr. Kiki: What is it that has led you, personally, to be so passionate about the BRCA advocacy?
Alejandra: Well some issues choose you more than you choose them and breast cancer has been a part of my whole life, even before I knew that myself or anyone in my family was positive for the gene mutation. When I was just born, my great-grandmother passed away from breast cancer. When I was a teenager, my grandmother passed away from breast cancer. Right after I graduated from college, my mom developed breast cancer and, thankfully, beat it.
And just a couple months before I announced my campaign for Congress, my aunt was diagnosed. And so, a few years ago, there was more information about the BRCA mutation out there and I became aware of it. I encouraged my mother to test, and when she came back positive, I knew that it was something that I wanted to do as well. So, a few years ago, I tested and found out that I was positive. And didn’t tell anybody, not even my mother, for several months because it’s a very personal decision. What you want to do about it and one that there isn’t a right or wrong answer — it’s very individual.
I wanted to make that decision for myself, and really think it through, and not be influenced by other people’s opinions. Once I decided that I want to do a preventive double mastectomy in the future, I decided that I would share that information with folks in my life. At the time, it was still just a handful of people, less than I could count on one hand. A lot of my friends were surprised when, during my campaign for Congress, I went public with it. They had no idea.
To be honest with you, I felt very obligated to step forward and speak out on it because at the time, we had just had our presidential election and Obamacare repeal was going through the hauls. As somebody who worked for President Obama in the White House, during the time that Obamacare passed and for all these other personal reasons I just shared, I couldn’t just sit on the sidelines forward and not try to talk about the human cost of folks losing access to health care or being discriminated against for having a pre-existing condition.
That became really front and center for me, is something that I decided in the moment, I wanted to be very public about and since then connecting with all the women, and connecting with all the organizations, and men, and folks that are previvors and people that are survivors. It’s been such an amazing experience of seeing the collective strength of this community and realizing that when I went through it, I didn’t see a genetic counselor and I didn’t know what to do. And the kind of support that this community collectively brings is so beautiful and so courageous. That’s been an interesting byproduct of this whole experience as well.
Dr. Kiki: It sounds like its been a really positive experience for you to have gone public and become such an advocate.
Alejandra: Absolutely. I grew up in an experience that was laced with a lot of struggle. I grew up and raised by a single mom, who emigrated from Mexico a few years before I was born, and my grandmother. A bunch of us, with my extended family, we’re all eight of us — we were in a three-bedroom most of my childhood and access to health care, and being able to pay the bills, and a number of different struggles were a part of our daily life.
One of the things that I learned, myself, was through these struggles, how it is that you can empower each other and being honest about it. How it is you can make people feel less alone. I like to say I keep it very real, especially when I talk to young people, very real about know what it is that it takes to, whether you want to work in policy, or politics, or what you face as a woman and all of these different factors because being vulnerable with each other is actually something that helps us all. So, while it’s hard to be so vulnerable about something like this, especially about your body.
Dr. Kiki: Oh, that like you said is so personal, yeah.
Alejandra: It is. It’s so personal. But pain can be fuel in a lot of ways and struggle can be fueling, can be a unifying force When we talk about it honestly and when we reach out to each other and validate each other’s experiences. That’s very much been something that’s important to me but also something that has helped me on the other side of it.
When I was a kid, I was in all these non-profits for at-risk youth. I benefited from a lot of the programs that I wanted to support when I was running for Congress, that we worked on at the White House, and that I’m working on now as a commissioner, like, I was one of these kids.
I get how this feels on the other side and the more we talk about it, the easier it is for everyone. Ironically, talking about it really is very empowering for everybody involved. I don’t encourage people to talk about things prematurely or if they don’t feel comfortable doing it, but your own personal story can be a vehicle for public advocacy.
Dr. Kiki: How do you think your personal experiences and your situation growing up led to shaping your worldview? You ended up becoming an advocate and someone who speaks out but so many others might not. How do you think your particular situation was unique?
Alejandra: Well my experience wasn’t unique, in the sense that a lot of young people, and kids, and family struggle with the same things that I did. For me, getting out from under it was a process. You know, I just figured it all out, and it was all perfect because it was a process. But, I learned one thing when I was 12, and I was in this non-profit that was all about teaching folks how to use their voice to empower themselves in like, creative writing, and playwriting, and acting. At the time, I thought it was an acting class, but my mom had me in a non-profit for at-risk youth trying to develop her self-esteem.
Dr. Kiki: Good job, mom.
Alejandra: Thanks to my mom, because this is a really pivotal moment for me. There’s two things in my childhood that were pivotal, teaching me things, and maybe until many years later, I couldn’t really articulate. But in this program, when we wrote these plays, and my play was about watching someone go through a depression. At the time, I had a very close family member who had just left an abusive relationship and was very depressed.
And as a kid, I couldn’t really articulate that or process it, and so I ended up unknowingly writing a whole play about it where there was a character called “Nothingness” that personified that emptiness and darkness. Long story short, when we were performing the play at UCLA, they would sit us as kids on the stage to look out at the whole audience and see their reactions. And when people came up afterwards and said, “You know, I really identify with what it is that you wrote about and this kind of pain, and struggle of watching this, and how heartbreaking it is.”
This kind of light bulb went off because I felt like it was a very personal story that no one would identify with. This was like my little piece of the world. But by sharing that, you realize how many other people have their permutations and variations of the same story constantly. What that taught me about storytelling and about expression, that was invaluable to me. And that was one piece of it and so kind of that was what drove me to go and study journalism in undergrad, but also just understand what the power is behind your shared human struggle and how beautiful it is to be able to help each other in that sense.
Another piece of it was in the 90s, I was in high school and Proposition 187 which is on the grant day to a lot of these anti-immigrant laws that was going on and as well as the LA riots around Rodney King and OJ, and all this was going on when I was on my early teens. And that really shocked me and shocked my system watching the really ugly rhetoric that was around my community and many communities of color, at the time, in Los Angeles. And it really drove me to look at who gets to tell our stories, and how they get to tell our stories, and who doesn’t even get included, period, and how important it is to be able to express where we come from ourselves, and to kind of own all of who we are, you know, and so that was a big moment for me as well.
Dr. Kiki: You ended up being part of the launch of “Fusion” which is a great channel for telling those stories.
Alejandra: Yes, working at the White House when I was doing “Hispanic Media,” when I worked at “Fusion,” also at the “LA Times” launching this race immigration identity platform, something all these things had in common was trying to create a lane for people to have agency and tell their own stories. And whatever that is, it can be tied to their health. It can be tied to their cultural experience. It could be tied to their religion or their sex.
It could be tied to so many different things but that folks should have access to be able to own this publicly and to not feel like they’re being misrepresented in media, like, very much still happens. So all of these efforts are really exciting to me, you know, and the intersection of politics and media has been really interesting. And for that reason, it’s very dynamic and it’s a space where, you know, unfortunately, a lot of times in media and in politics, the folks that we’re talking about aren’t the ones doing the talking.
Dr. Kiki: Do you think these new channels are helping to create olive branches in connections to other people between different races and to really get understanding? Do you think we’re getting there?
Alejandra: I think it’s a process but the important piece of it is empathy. It’s having a sense of empathy for other people’s experience is where you start seeing the kind of standoff start loosening and it’s hard to have empathy for folks’ experience if you don’t live next door to the person. If you don’t interact with them often. So, for folks, it can sometimes be segmented in whether it’s different parts of the countries or different communities. I think media has a really unique way of being able to show windows into each other’s lives and invite us into each other’s bedrooms, and houses, and neighborhoods.
It’s interesting because I’ve heard a lot about virtual reality being very powerful in the sense because you can actually put yourself into an environment and kind of it tricks your brain to kind of deal these emotions as you’re walking through the space, whether it’s an international space or, you know, going into an urban community. I think these are powerful tools that we can and should continue to use.
Dr. Kiki: How has your experience in commercial media different from working within the Obama administration and working in kind of communications from the political perspective?
Alejandra: It’s obviously different industries but for me, the through line has always been the same. It has been trying to find a way to make sure that everyone has a seat at the table. When I worked at the Obama White House, it was the first time that administrations ever had a focus dedicated to “Hispanic Media” operation, and it was amazing privilege to be able to be a part of that initial team, and to make sure that there was a dedicated strategy and communications around the U.S. Latino community. It was something that, on a personal level, obviously, meant a lot but thought, I also think, says a lot about Obama administration’s dedication to that space.
In media, you’re seeing the same thing. I think you really benefit from folks opening those channels to each other. And around the health space, I think that it’s really wonderful to be able to see people, be able to own and discuss the personal implications of their health in media because that’s been one of the key things to be able to hold people accountable to what it is that they’re discussing in Washington. When you see folks stepping forward, whether it’s online or on Twitter, and holding folks accountable to their lives being at stake in these conversations, using media to do that, I think, is really powerful and is a way that we have been able to see the needle shift.
Dr. Kiki: After the Obama administration, you ran for Congress. What inspired you to do that?
Alejandra: It was a realm in a moment and a seat opened up in my district in Los Angeles. And I really felt that this is a time for young people, women, people of color, and everyone who…even people who don’t have traditional backgrounds and politics to really step forward and make sure that we can be represented. My folks would understand on the ground what a lot of these issues are, and there’s different ways to do this. It doesn’t have to mean running for office.
There’s ways to do this in the private sector, obviously, in non-profits but running for office is a unique experience and I had the opportunity to do that. And decided that by putting some skin in the game, at this moment in time, was important to me. And even though I didn’t win, I’m so glad that I did it. Knowing what I know now, I would have done it again because we, each, are able to inspire each other to see that it’s possible.
I have a lot of friends who are running right now, and a young woman I was just supporting who didn’t win. She’s a sophomore at Harvard College, 19 years old, and just ran for city council there. And she told me, “I saw that you did it and if you can do it, I can do it.” That’s one of the most important parts because when you start seeing people like your peers that you know, that you feel are connected to you do it, it feels more attainable.
For folks like me, and her, and a lot of us, other people run for office. You never would dream that you’d be the one who does that but the more people in your periphery that start running, the more you feel like, “Okay, well, I could do that. That person did it. It’s attainable and it’s possible.” So that was my experience and I’m happy that I did it. And I really do encourage folks, especially now, to do the same.
Dr. Kiki: Going public about your breast cancer mutations during the election, as you were going through that experience and becoming a part of this community, how did that shift your outlook on life?
Alejandra: It didn’t shift my perspective so much as owning all of oneself. It has been a big part of my kind of journey to self. Owning that piece of myself publicly and several other things, I spoke out a lot about sexism and politics while I was running as well, it was being unapologetic about the realities that a lot of us face, not feeling ashamed of it, and if anything, hanging a lantern on it and being proud.
That perspective was important for me as a human being, as a woman, but also it’s very important to do for each other because every time each of a steps forward, and you’re seeing this in a lot of different ways right now publicly, every time each of us steps forward, and unapologetically owns our nuances and our multidimensionality, that empowers the next person to do the same, and not feel ashamed, and not feel like there’s something that they have to be embarrassed about, or it makes them different, or it makes them broken. So that was an important piece of it. I can’t speak for anyone else’s experience of doing that but for me, it was very positive.
Dr. Kiki: There is a tendency for that public persona to become very one-dimensional as opposed to representing a whole person.
Alejandra: I think there’s a piece of femininity and sexuality that’s also, when we’re talking about our bodies. We’re talking about potentially removing our breasts and BRCA and what that all means. There’s a piece of it that’s very tight with femininity. That’s always something that’s hard to talk about publicly, especially as a professional woman, but that doesn’t need to be the case. You don’t have to have these pieces of yourself that you pull on and off depending on the situation.
People talk about women’s bodies all the time but why should we feel ashamed to talk about the realities of women’s bodies? I did my first ad about that and at the end of my first ad, which was about the BRCA mutation and my mom and I shot it together.
Even shooting that ad was something that I will always remember because my mom and I were sitting there, and I had my grandmother’s rosary in my hand because when she was actually in her last weeks fighting breast cancer, she got herself out of her bed at home and she went to the church. She had the priest blessed this rosary to leave to me and it means so much to me. I’ve had it in my hand when I graduated high school. When I graduated college. My first day at the White House. Every life event that means something to me, I’ve had it in my hand.
I had it in my hand when we’re shooting this ad, and my mom and I were crying in between takes because it was so emotional and it really did feel like we were doing this for the three of us, and it had nothing to do with the campaign in a lot of ways. It was this full circle moment about BRCA, about breast cancer, about the grit and the resilience of the women and our family, and the women, and all these families and communities that face this difficult decision and just difficult health battle.
It was bigger than me. It was bigger than us. It was bigger than a lot of things and that’s something that I carry with me. In a lot of ways, the campaign experience is tied to this kind of coming out of not only myself but my family but, hopefully, an experience for other people coming out too.
Dr. Kiki: This story is powerful. When you became aware of your mutation, it was through genetic testing. Can you talk about that experience and what it was like going through it for you?
Alejandra: It was hard. I didn’t do it through a wonderful organization such as Color that has genetic counselors and is able to help somebody navigate that process right. I would have loved to do it that way. I did it kind of on my own, at a doctor’s office, and I was the one who brought it up, and I was very alone. I didn’t tell anybody about my results. When I was given the news, I was just sitting there and a nurse, not even the doctor, came in and just said, “Well, it’s positive,” and the first thing out of my mouth was, “I know,” because I felt it.
I feel so connected with them and I know that it’s not something about an emotional connection as far as, like, the passing down of the gene, but I just felt it. There are a lot of things that are passed down through family and I feel like an extra special connection with my mom and my grandmother, and so I just could feel it. I said, “Okay, I know.” And then she gave me a packet and walked out. And I drove home and didn’t cry for a little bit, which is kind of shock.
Dr. Kiki: Yeah, absolutely.
Alejandra: And then I started crying and to my earlier point, it was kind of this swirl of emotions where I felt even more connected with my mother and my grandmother. My grandmother was like my second mom. So, it was like my two moms. It was strangely like a swirl of emotions of connection but also, obviously, I was sad in what I was gonna be facing down and the implication of what that meant.
Then I just kept it to myself. Which is one of the reasons why I’m being so public about going on now, whether it’s in my decision-making process or just speaking out about it and not being ashamed of it because I literally just never talked about it to anybody for years. And did my own individual Google searches and thought about what I wanted to do but it was a very isolated process. I didn’t know there were support groups out there. I wasn’t on any of the Facebook groups. I wonder how many people are out there who kind of face this…kind of suffer in silence as well.
Dr. Kiki: It’s not an easy process to do alone. It’s emotional. It’s physical. Its spiritual, and moving through something like that alone can be very difficult. Looking back, do you think that having a counselor would have made the process a little easier for you?
Alejandra: It would have definitely helped. Having a genetic counselor would have not only helped me process it but help me understand what it is that I needed to do now as far such as preventive screening, as far as timeline, all of that. I cobbled together the answers eventually, like, I have with pretty much everything else in my life. I’m always just cobbling together information to try to figure out the next step. But, in that case, I kind of figured it out on my own and I would have loved to be able to be given a piece of paper even with potential next steps.
I remember, believe it was same nurse kind of hurried and kind of listed out all the things I need to do. I remember writing it down a piece of paper, “One mammogram a year, one MRI year, two ultrasounds,” like, all the different things that we need to do to continue screening and it was like on a scrap of paper. I had to go back and just call back and say, “Wait, can you repeat everything? I want to make sure I get all this right.”
To be honest with you, I have great doctors now but I found that a lot of this experience is very self-directed and so that’s an important piece that I would encourage folks to be however, pushy that means because a lot of experience is remembering yourself that you’re due, and pushing yourself to make those appointments, and take all that time out of work because no one’s gonna be pushing you to do it as much as your doctors do care.
Dr. Kiki: That’s absolutely true. You have to be your own advocate. Why is it really important to have quality health care coverage especially for underserved communities?
Alejandra: Well, I don’t see health care as a privilege. I see it as a right, and I know that’s not the case for everyone, but I strongly believe that that is true. And right now, the level of your suffering is dictated by how much money you have in a lot of ways and I’ve watched this play out in my family for many years my whole life. I’ve watched this play out with friends and people in the community. When I was running for Congress, in the community that I was running to represent, this is absolutely one of the biggest issues.
I think seeing folks needlessly suffer and lose their lives over something that’s an access issue is completely horrific and immoral. I will continue fighting in this space, for the rest of my life regardless of capacity or occupation. My first real job at a college was in a healthcare foundation. I recognized and that was working at the California Endowment on this initiative, it was focused on migrant farm workers and their access to health.
Especially for communities of color, this is an especially resident issue. But honestly, health doesn’t discriminate, these kinds of battles don’t discriminate. It affects us all and it’s a great equalizer. You talk about healthcare access to someone in theoretical way, but then someone in their family gets sick and everything else falls away. Nothing else matters when you’re sick. I think we need to remind people about that.
Dr. Kiki: How can access to testing services, to treatment centers, how can this really affect different communities
Alejandra: Well, you have the option, and having the option is empowering and shouldn’t be dictated by someone’s financial circumstances. But if you roll it all the way even been back to just having the preventive screening or the genetic testing to know this is even an issue. Women of color pass away more frequently from breast cancer, even though their incidence is less likely, and that’s an access issue. That’s a health care issue. That is something that’s an inequality, that we need to start looking at immediately.
And having women in the community, in these different communities, be able to have this information even, like, it’s not even at the point of, like, whether or not to have a surgery but have the information that this test is even out there, that they can afford to get tested through different kinds of programs, and seeing folks in their community being advocates for their own health care, and not feel like they are at the discretion of a doctor. A lot of it can be cultural, my grandmother didn’t have health care a few years before, like, in the time leading up to when she was diagnosed with breast cancer and she didn’t go and get mammograms because she felt bad that my aunt would have to go out of pocket for it.
My aunt just told me the story a couple months ago. I didn’t even know this until very recently, and my grandma said, “No. No. No. No. It’s okay. Just pay for my physical once a year,” and her mother had passed away from breast cancer, but not only was it that my grandmother felt it, she didn’t want to inconvenience my aunt to pay for it out of pocket. But also, there’s sometimes a little bit of kind of candidness around doctors when you’re coming from certain cultural experiences. And so, these cultural factors that affect whether people can afford health care or even when they have it, feel comfortable utilizing it, those are important pieces of the puzzle.
Some organizations are really making a point to have a cultural approach to this. And, one of the most amazing things we’re seeing right now is this cycle right now for Obamacare, the enrollments are at least 47% higher than they were last year, and I think that’s because folks are really making a point to reach into these communities and even though, maybe the public the public ads about enrollment may have dissipated a lot this year, you’re seeing a lot of advocacy groups of going and saying, “Hey, talk to your mom. Talk to your grandma. Talk to your neighbor, and make sure that you’ve flagged this for them,” and they’re seeing their fruit. It’s important.
Dr. Kiki: What women of color especially can do to be become advocates for themselves, to go and make sure they get tested, to make sure they can get health insurance so that they can cover these tests. Can you name some organizations that people can reach out to, to maybe find community?
Alejandra: Well I don’t know what areas people are listening to this from, so I don’t want to focus on Southern California. But I’ll say that, within your communities, there are different organizations that are focused on immigrants’ rights, that are focused on different spaces that you can go to and that will be able to direct you in the right ways. Luckily, also, if you go to healthcare.gov, you can find some of that information. But the most important thing is to empower yourself with finding that information and sharing it with everyone in your community because that’s where the disconnect is, you know, continuing to talk about these things.
When you see each other in the street, everyone seems perfectly healthy. Everyone seems like they have nothing to care in the world but, you know, recently I was in an event and it was about BRCA awareness. And, I spoke out about this and afterwards, folks started coming up and talking about, “Well, I’m BRCA positive too.” “I’m a survivor of breast cancer.” “When I had my double mastectomy,” and I had a friend of mine with me and she said, “You know, if I walked into the room, I would have never thought that all these women all have this in common.”
Seeking out those opportunities, and supporting those organizations, and continuing the drumbeat of talking about access to health care
Dr. Kiki: Do you think it is a cultural standard, maybe for older generations, not to talk about these personal health care issues and that the younger generations, like your own and the ones coming up, maybe have a role in starting to talk about these things and forcing the conversations within their communities?
Alejandra: I don’t know about forcing the conversation but making folks feel that it’s okay. I think that we have a unique capacity to breach these conversations with our families and show them that it’s okay to talk about it. They don’t have to be embarrassed by it. Recently I had a conversation with two family members and encouraging them to test for the gene mutation. They’re very close family members and could carry it as well and obviously have so many people and their families that have already struggled with this. And one of them felt very strongly that she did not want to test and one of them agreed that she would do it.
But these were conversations I had to initiate, and that I had to keep up on, and call them back, and following up, and then they were hard to have especially with a family member who doesn’t want to know, and doesn’t want to talk about it. But I’m glad that I approach these conversations and had them, and their decision is their decision, but not talking about it, I think, it’s the biggest disservice to ourselves and our families.
Keeping that drumbeat going and when you know you’re in a family that may be susceptible to this or who has struggled with breast cancer, opening the conversation, even if it is a little uncomfortable and even if sometimes they’ll tell you things that are a little hurtful. I was told by the family member who doesn’t want to be tested, “Well, I’m not obsessed with my health like you are,” which I found very hurtful. But I understand that this person feeling defensive and scared.
Dr. Kiki: Yes, coming from a place of fear.
Alejandra: Yeah, didn’t know how to handle it. I don’t want to be Pollyanna about it and say, “Oh, everyone go talk to your family. You can all seem kumbaya and get tested together.” It might not be that situation. It wasn’t for me but I’m still glad that I had that conversation with her.
Dr. Kiki: Absolutely. You go into that place with compassion, try and open the conversation and see where the discussion leads. Maybe if more and more women start talking about these things, as you have done, that drumbeat will get louder and maybe we can change the numbers. Maybe we will find fewer women of color succumbing with this terrible disease.
Alejandra: Yes, and we’re all in it together at the end of the day. We can each do our part to affect our little corner of the world, but we’re all in it together. We’re all self-selected into this group. But one thing that I think is important is, not only do we all have this in common, but we have a lot of other things in common. We have the grit, and the resilience, and the strength, and the courage. I mean, the women that I’ve connected with through this process, very incredible inspirational women. The gene, I think, carries a lot of other things with it that it must include those characteristics because what phenomenal women that I’m so proud to stand next to in this fight.
Dr. Kiki: What’s next for you?
Alejandra: Continue trying to do good work and that can look a lot at different ways. I’ve always been agnostic, as far as the sector or the job perse, but I feel strongly that if you continue to work and live your life aligned with the ideals, and community, and issues that are important to you, that that’s the most important piece of it. So that’s my goal and to continue to hold myself accountable, to be brave, and to make the kinds of decisions that will make my family proud.
Dr. Kiki: Do you have anything else that you’d like to add to people that you’d like to tell, women especially, either about breast cancer or health healthcare access? Is there any message that you’d like to get out?
Alejandra: What I want to say to women is that a lot of times we are made to feel like we should live in these boxes. Whether it is the pretty one, or the girl next door, or the sick one, or the smart one, or maybe even the imperfect one once we’ve had these procedures or decide to make these changes in our bodies. My advice to women is that you don’t have to adhere to these boxes, to shrug them off, to embrace all of who you are, your multi-dimensionality, your past, your struggles, and your joys. So that you can live to be the most whole version of yourself as possible. That’s our right as women and as human beings.
Dr. Kiki: I’m glad that you are doing what you’re doing. And thank you so much for joining us today.
Alejandra: Thank you so much for all the work that you’re doing on behalf of women and men everywhere.