Standing in a Different Gap: Advocating for Our Daughters and Breaking Barriers in Black Healthcare
- maryrburrell
- 3 days ago
- 5 min read
Most people know me for heart valve advocacy. That is the space I’ve lived in for years; I know the systems, I know the language, and I know exactly how to fight within them. But I’ve learned that nothing truly prepares you for the moment the fight shifts to your child.
Recently, I stepped into a new kind of caregiving role with my daughter, Azure. In June of 2025, Azure learned she carries the BRCA genetic mutation, which increases her risk for certain cancers by limiting the body’s natural ability to repair DNA and prevent tumor growth. As a young Black woman, her journey through the medical system carries layers that others may not see. We unpacked those realities in the podcast episode Systemic Silence: Why Black Women Are Still Dying of Heart Disease Season 2 Episode 8. While this is a genetic condition she inherited from myself and her prophylactic treatment plan has greatly varied from mine for many reasons, I want to share what it felt like to be her mother in that season; to go from the role of patient to caregiver.
I am no stranger to the medical world. I understand hospitals and specialists; I know how to keep the notes, ask the hard questions, and push back when something doesn't feel right. But caregiving for your child is a different weight entirely. To be honest, I’ve realized I make a much better patient than I do a caregiver. It is one thing to manage your own health crisis; it is another to watch your child navigate hers. You want to fix it. You want to carry it. You want to trade places and you can’t.
I found myself doing what we caregivers do: making the lists, researching late into the night, and double-checking every appointment. I practiced staying calm in rooms that felt heavy, being the steady anchor while the storm swirled. Then, I’d feel the full weight of it only later, when the house was finally quiet.
There is a strange, exhausting duality in this role. On the outside, you are organized and composed; on the inside, your heart is racing.
As I watched Azure make hard decisions with courage, choosing action over fear, I saw her advocate for herself in ways that made me beam with pride and break my heart all at once. Through her, I was reminded of a truth I’ve always known: systems are confusing, and for Black women, the disparities and statistics we face in healthcare are a heavy, real-world burden. The emotional toll is undeniable.
But so is our resilience.
This season has stretched me in new ways. It has reminded me that advocacy isn't just about one diagnosis or one organ; it is about standing firmly in whatever gap opens up in front of you. Right now, I am standing in this one.
To every caregiver reading this, especially the mothers walking beside their daughters. I see you. The strength you show during the day and the quiet tears you shed at night both count. Caregiving is love in action, and sometimes, it is the hardest work we will ever do.
As we navigate these systems together, having the right support can change everything.
Resources for Our Community
This space started as a blog. Today it lives inside HeartBridge Collective and in this post, I’m sharing resources for BRCA+ patients and caregivers to help bridge the gap in care.
2026 Update: Your Rights to Free Screening
Too many people in our community avoid the doctor because they’re afraid of the bill. That fear is real! But in 2026, the law is on our side.
Under updated Affordable Care Act (ACA) rules, many high-risk individuals now have access to screening and support at no out-of-pocket cost.
Mammograms + MRIs
Covered for those at high-risk.This includes follow-up imaging — like MRIs or ultrasounds — needed to complete your screening.
Genetic Counseling & Testing
Usually 100% covered if you have a family history or prior diagnosis. Contact your insurance carrier for further details.
Patient Navigation
New in 2026, insurance must cover patient navigators to help coordinate your care — at no extra cost to you.
Bottom Line
Do not let the price tag stop you from asking about screening. Many preventive screenings are covered at no cost under the Affordable Care Act when they are coded correctly and done in-network. Some states also offer additional programs for people with genetic or high-risk conditions.
If you receive a bill, don’t panic and don’t automatically pay it. Call the billing office and ask how the visit was coded. Was it processed under preventive care? If not, ask why. You have the right to understand your bill and question it.
Resources and Support
Support for Black Women Facing Breast Cancer
🤝 Sisters Network Inc. (National Support for Black Women with Breast Cancer)
A national survivorship network dedicated to increasing awareness of breast cancer’s impact in the African-American community and connecting women with support, education, and financial assistance programs.
🤝 African American Breast Cancer Alliance (AABCA)
One of the longest-standing nonprofit support organizations focused on education, emotional support, community outreach, and survivor networks for African American/Black breast cancer patients and families.
🤝 TOUCH, The Black Breast Cancer Alliance
A coalition working to eradicate Black breast cancer by connecting patients, survivors, advocates, researchers, and healthcare professionals — with advocacy, awareness, and educational programming.
🤝 Coalition of Blacks Against Cancer (CBAC)
A nonprofit that provides reliable info and support for Black cancer patients, including breast cancer resources, prevention education, and community outreach.
🤝 Virtual Support Group: SHARE — Breast & Ovarian Cancer Support for Women of African Descent
A virtual group that provides peer connection, safe space, and information for women of African descent navigating a diagnosis (Zoom-based).
These organizations aren’t Black-specific but provide excellent resources that many Black women find helpful:
Living Beyond Breast Cancer (LBBC) national support and education (includes Black breast cancer info). https://www.lbbc.org/
Uncovering TNBC resource site with TNBC education and tools for patients. https://www.uncovertnbc.com/
A Note to My Community
Please share this post. Someone in your circle needs these links.
To the caregivers:Check in on yourself. You cannot pour from an empty cup.
To the families:If you know a Black woman who hasn’t looked into her family history, start the conversation today.
To the friends:Don’t just say, “Let me know if you need anything.”Be specific. Drop off a meal. Run an errand. Just show up.
This month has stretched me to my limits.
But it has reminded me of one thing: Awareness saves lives and action finishes the job.
#BlackWomensHealth #HealthEquity #TripleNegativeBreastCancer #BRCA2 #BreastCancerAwareness #SupportBlackWomen #PatientVoice #CaregiverLife #GeneticTesting #PreventiveCare
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