Black Myeloma Caregivers Share How They Advocate for Health Equity

Care partners play a critical role in the health outcomes of Black multiple myeloma patients, particularly in navigating the unique challenges they face. Myeloma disproportionately impacts African Americans, who are more likely to experience delays in diagnosis and limited access to advanced treatments. 

Here are actionable strategies care partners can adopt, inspired by the experiences of advocates like Kimberly Alexander, Michelle Ware-Ivy, and Marsha Calloway-Campbell, to support their loved ones and address systemic inequities. 

5 Pieces of Advice from Black Myeloma Care Partners to Advocate for Their Loved Ones

1. Empower Through Education

Understanding multiple myeloma and its effects is crucial. Care partners should familiarize themselves with the cancer, its symptoms, and treatment options, including new therapies like bispecific antibodies and CAR T-cell therapy. Advocate for early diagnosis by encouraging loved ones to address unexplained symptoms and ask healthcare providers specific questions. 

You can use resources like HealthTree's Black Myeloma Health Initiative to access educational materials and support networks tailored to Black myeloma patients. 

2. Advocate for Comprehensive Care

Black patients often face implicit biases in healthcare. Care partners should actively advocate for thorough and fair treatment by:

• Attending appointments and documenting symptoms, treatments, and questions in a binder
• Requesting second opinions if diagnoses or treatments seem unclear or delayed
• Researching clinical trials, as increased Black participation is essential to improve treatment outcomes and address disparities

Michelle Ware-Ivy’s advocacy underscores the importance of leveraging medical insights and ensuring transparency in the treatment journey. 

3. Foster a Support Network

Caring for a loved one with myeloma can be overwhelming. As Kimberly Alexander emphasizes, accepting help is vital. Build a support system that includes family, friends, faith communities, and healthcare professionals. These networks can assist with daily caregiving tasks, emotional support, and navigating complex medical systems.

Self-care is equally important. Find small escapes—like exercising, reading, or connecting with friends—to recharge and maintain resilience.

4. Engage in Health Equity Advocacy

Systemic inequities in healthcare require systemic change. Care partners can contribute by:

• Raising awareness about myeloma in Black communities, particularly through churches, community centers, and national Black events
• Advocating for policy changes, such as routine screening protocols for high-risk populations
• Encouraging participation in clinical trials to ensure treatments are effective for diverse populations

Marsha Calloway-Campbell’s work with HealthTree exemplifies how community outreach and education can empower others to ask critical questions and seek appropriate care.

5. Leverage Faith and Resilience

Many care partners find strength in their faith and use it to guide their advocacy and caregiving efforts. Michelle Ware-Ivy’s foundation, which bridges science and faith, highlights the importance of spiritual wellness in navigating the highs and lows of cancer treatment. 

Final Thoughts

Black myeloma care partners are critical advocates for equity and excellence in healthcare. By staying informed, building strong support systems, and driving systemic change, they not only support their loved ones but also contribute to a future where all patients receive timely, effective, and equitable treatment.

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Source: 

• After their husbands were diagnosed with multiple myeloma, these 3 care partners became health equity activists