Helping Women of Color Have Agency Over Their Own Health

From the White House to raising awareness in her community, Alejandra Campoverdi is helping to empower women of color to have agency over their own health and to help start the conversation surrounding hereditary risk.

With a list of family members diagnosed with breast cancer and recent reports of how the BRCA gene impacts the disease, Campoverdi — who is a former White House aide, an advocate for women’s health issues and a Commissioner for First 5 California – underwent genetic testing in 2013 and tested positive for the BRCA2 gene mutation.

In a recent interview, CURE sat down with Campoverdi to talk about hereditary risk and how her new initiative, the Well Women Coalition, is helping to start the conversation among women of color across the country.

Can you just briefly explain your family history of cancer?

Campoverdi: In my family, five women have now been diagnosed with breast cancer: my great grandmother, my grandmother — who both lost their lives – my mother who survived it, my aunt who battled breast cancer last year and is remission, and my other aunt who was just diagnosed a couple of weeks ago. Breast cancer is very prevalent on my mother’s side of the family.

How did you come to discover your BRCA2 mutation?

Looking at my family history, it’s easy to see why we thought that something might “run in the family.” But I didn’t think I would ever have the chance to know definitively until 2013. I started hearing reports in the news about “the breast cancer gene” and I thought maybe this was the answer. So, I started inquiring about how to take a test but back then, it was very different — testing was much more expensive, less accessible, and involved a blood test. That’s what I did at the time.

Given your family’s history, how did you and your family start the conversation about hereditary risk?

One of the reasons why I started the Well Women Coalition, which is an initiative empowering women of color to have agency over their health and healing, is because of the experience I can speak to as a Latina. Many times in our communities, we are the ones who initiate these conversations within our families. I was the one who told my mom about BRCA and asked if she would get tested. Once her test came back positive, I was the first in my family to test proactively. My role has really been to encourage other members of my family to test. I even provided them all with the opportunity to take a genetic test for free. Some members of my family took advantage of it, and some still don’t want to know. It’s been a conversation that I have driven and this is a responsibility we have in our families a lot of the time. Making sure to initiate these conversations that are difficult and to encourage people to be proactive about their health.

You recently launched the Well Women Coalition, can you tell us more about this initiative and its mission?

The Well Women Coalition’s mission is to empower women of color to have agency over their own health and healing through awareness, education and advocacy. I really wanted to center the experience of women of color within my own surgical journey. I was raised by a single mom who had immigrated to the U.S. from Mexico just a few years before I was born and at times, our health care came from Medicaid. Watching my family members struggle with different levels of health care access has really opened my eyes. It’s bigger than my experience and that of my family. Seventy-two percent of the women in Los Angeles are women of color. And women of color are more likely to be diagnosed with breast cancer in advanced stages. I felt obligated to take this difficult moment in my life and transform this struggle into something that can hopefully help other people.

How can the Well Women Coalition help to educate women of color about family history of cancer and hereditary risk?

Number one is having these conversations very openly. These are hard conversations to have but when it comes to our health, we can’t afford not to have them. When it comes to women of color and women's health in particular, we must have culturally competent conversations. As a Latina, I understand that there is a need for cultural considerations when addressing the health care needs of diverse and multicultural communities. Someone’s culture can shape how they experience and interact with health care providers. Increasing this awareness with providers can enhance their sensitivity to develop the most effective forms of communication and delivery of their services. Women’s health screening exams can feel invasive depending on someone’s health and religious belief systems, and we can also sometimes see an inherent fear and distrust of doctors. My abuelita (grandmother) discovered a lump in her breast and did not go to the doctor for almost a year to have it checked out. She was scared of the doctor and she didn’t have health insurance. If she’d had health insurance and a better experience with doctors, her death from metastatic breast cancer might have been avoided.

With your own experiences, through familial cancer history, your professional career, and now with the Well Women Coalition, how can we help to raise awareness and start the conversation about hereditary risk?

It starts with being vulnerable with one another and sharing our experiences because this is our connective tissue. It makes us all feel less alone. I first went public with my story while I was running for Congress last year. I was completely floored by how many women (and men) reached out to me to share their story. Over the past year as my own surgery date has gotten closer, I’ve followed the surgical journey of several women on Instagram and that really helped me. That’s why I’ve chosen to pull the curtain back on my experience. To continue the conversation and to hopefully pay that forward for other women. It’s about being bold and unapologetic about this issue and championing increased awareness in our communities.

What is your biggest piece of advice for others who may think they have a hereditary risk or recently discovered they may have one?

When I found out that I was BRCA positive, I didn’t tell anyone initially — not even my mother. I wanted to make sure that I made the decision that was right for me without being swayed by the opinions, fears, or experiences of others. These are life-changing decisions, and while they are ones that can be very empowering, they are still difficult and emotional. Here I am, sandwiched between my two surgeries and it is already a very emotional experience. The most important thing is to arm yourself with is information so you can make an empowered decision. If you think you may be at risk, take a genetic test. If you test positive, the choice to undergo increased surveillance versus have preventive surgery is yours. There is no right or wrong answer. But make sure that you make this decision for yourself and no one else.