This Breast Cancer Awareness Month, Alejandra Campoverdi Wants to Make Sure Women of Color Are Included in the Conversation
Ladies First highlights women and girls who are making the world better for the rest of us.
Alejandra Campoverdi is a political force to be reckoned with. As President Obama’s former Director of Hispanic Media, Campoverdi served as a public champion of the Affordable Care Act in the Hispanic community, the first woman to ever have the job. Now, the 39-year-old health care advocate has launched a campaign to draw attention to an issue that has affected both her and her family: breast cancer.
Campoverdi’s Well Woman Coalition is an advocacy and education project that aims to ensure that women of color stay informed about their health and health-related options, especially when it comes to breast cancer. After several women in her family received breast cancer diagnoses, Campoverdi decided to be tested for cancer-correlated BRCA gene mutations. Finding out she was a carrier left her with a hard decision and a huge opportunity. This October — which happens to be Breast Cancer Awareness Month — she’ll undergo a preventative double mastectomy and document her experience online as part of the Coalition’s work.
We chatted with Alejandra ahead of her her surgery to find out why she believes that it’s important to share her journey with other women.
Brit+Co: Can you start by telling us a bit about your own and your family’s history with breast cancer? What led you to make the decisions you’ve made for your health?
Alejandra Campoverdi: Breast cancer has had a presence in my life for as long as I can remember. My great-grandmother died of breast cancer shortly after I was born, my grandmother died of breast cancer when I was 16, my mother successfully fought breast cancer when I was in my early 20s, and my aunt battled breast cancer just last year. Because of my family history, when I became aware that there was a test available to detect the BRCA gene mutations, I made sure that my mother and I were tested.
After learning I carried the gene mutation, it wasn’t long before I decided I’d undergo a preventive double mastectomy in the future. It was a no-brainer for me once I realized that in one surgery, I could lower my risk of developing breast cancer from 85 percent to under three percent. But it is a very personal decision that every woman should make for herself. What’s right for me may not be right for someone else. What’s most important is to gather as much information as possible in order to make a decision that feels empowered and informed.
B+C: What’s missing from the conversation around women’s health as it relates to women of color and breast cancer?
Campoverdi: First of all, good question, because we just aren’t having this conversation enough. These are hard conversations 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 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.
B+C: What are the specific issues that women of color are confronted with when it comes to breast cancer and genetic testing? Can you talk about some of the barriers faced by the community and what we need to do to remove them?
Campoverdi: The importance of early detection when it comes to breast cancer can not be overstated. Yet there are many health disparities that women of color face which present barriers to early detection. Many women of color lack access to preventive screening and treatment options which contribute to the fact that they’re more likely to be diagnosed with cancer in advanced stages. And there is still a lack of information about genetic testing in communities of color, tests which are critical to flagging potential hereditary cancers. Genetic tests used to be very expensive and inaccessible but now, thanks to companies like Color, there are affordable options that many times include free genetic counseling as a part of their services.
It is an inexcusable violation of our fundamental human rights for your level of physical suffering to be correlated with the color of your skin or the size of your pocketbook. Everyone should have access to quality and affordable health care coverage. Period.
B+C: You’re going into your surgery this October, which also happens to be Breast Cancer Awareness Month. How are you feeling about it? What’s getting you through the lead up to that and where will you look to for support during and after?
Campoverdi: I’m still actively processing my feelings every day as the dates gets closer and closer. I’ve known for over five years that this was the path I’d choose but it feels very real now that I’m in the final weeks leading up to the surgery. I know that this is a big surgery and that the recovery will not be easy. But I have not doubted my decision for a moment. During this time, my focus is to make sure my body, mind, and spirit are in a good place going into the surgery. My twin focus is to center the experiences of women of color when it comes to their health. For this reason, I recently founded the Well Woman Coalition and I will also be documenting my entire journey on Instagram so others in the same positions can follow along @acampoverdi. I want to pull back the curtain on the intimate realities of this experience and help spread awareness about preventive measures and testing throughout this time.
B+C: You’ve founded the #WellWoman campaign. Can you tell us about how you hope to change the experience and outcomes for women of color who have breast cancer?
Campoverdi: The Well Woman Coalition is an initiative whose mission is to empower women of color to have agency over their own health and healing through awareness, education and advocacy. That includes breast cancer but the scope of the Coalition is much wider to include overall health and healing for women of color – physical, mental and spiritual. There are three key steps we can take:
1. Arm yourself with information. Set a monthly reminder to perform a self-breast exam. Be religious about your mammograms and pap smears. If you have reason to believe you may be at a higher risk for developing breast cancer, take a genetic test. Learn about the many diet and lifestyle changes that can help lower your risk, regardless of your genetic disposition. I’ve become certified as a Holistic Cancer Specialist and can attest to the many health benefits of matcha tea, increased superfood consumption, limited alcohol intake, healthy sleep habits, and regular exercise.
2. Empower yourself. Once you have gathered this valuable information, make the choices that are best for you. There is no right or wrong decision – for some its diligent surveillance, for others its preventive therapies, and for some its preventive surgery. The most important thing is to choose a course of action that is well-informed and therefore intentional. Education is empowerment.
3. Save Your Own Life. I am not naïve about this one. Life happens. We and our loved ones get sick. Health is the great equalizer and we only have so much control over our bodies. But whether dealing with a predisposition, a diagnosis, or a chronic health condition, we are our own best health champions. I’ve spent enough hours sitting in free clinics, chasing HMO doctors, and having my legitimate concerns minimized to know that no one is going to save your life but you. Enroll in healthcare. Be relentless about protecting and maintaining your health, keeping up with yearly women’s health screenings in particular. And this includes mental health, where the incorporation of psychology, spirituality and mindfulness practices can help mitigate the adverse health effects of past emotional traumas and give us the peace we deserve – body, mind, and spirit.
What are you doing to be proactive about your health? Tell us about it on Brit+Co.
(Images courtesy of Alejandra Campoverdi)