African American Caregivers Face a Greater Burden and Need Accessible Information and Support

As April marks National Minority Health Month, there is no better time to highlight the racial disparities that exist in treating African American patients with multiple myeloma and the need for better resources to support their caregivers.

I learned this first hand when my husband Eli was diagnosed with multiple myeloma, a blood cancer, at 34 years old. When I recited my wedding vows to Eli in 1995, I never expected to be his caregiver. At the time, Eli was seemingly at the peak of good health and in the middle of his nine-year career as an professional linebacker. But just 10 years later, I was thrust into the caregiver role, vigilantly seeking out information, treatment and answers for my husband.

Learning about multiple myeloma treatment options is of particular importance for African Americans; they are less likely to receive the latest treatments and more likely to experience delays in getting treatment, all while being twice as likely to be diagnosed with the disease as white Americans. ^1,2

Despite that statistic, I was the only African American at this year’s Annual Myeloma Survival School, which attracted dozens of people who wanted to learn how they could help their loved ones with this blood cancer live longer and better lives. I feel a disconnect remains between the multiple myeloma community and African American caregivers who need support.

Being a caregiver for a loved one with multiple myeloma is tough for anyone, but it’s particularly hard for African Americans. Data shows, that we are more likely to work more, make less money and have greater childcare responsibilities than white Americans. At the same time, African Americans find it harder to take time off to manage their new caregiver responsibilities. ³ As a result, caregivers often do not have the time or money to do things like attend support groups that might provide valuable information on the latest treatment options.

I feel fortunate that when Eli was first diagnosed, I had the time to learn all I could about myeloma. I went to the website of organizations such as The Leukemia and Lymphoma Society (LLS), the International Myeloma Foundation and the Multiple Myeloma Research Foundation. I posted questions on Facebook and Twitter. That’s where I learned how important it was to ask our doctors about the latest treatments and potential side effects.

Not everyone in my community has the time or the resources to do the same. So, it is heartening to see the multiple myeloma community recognizing the challenges that African Americans caregivers face today and taking steps to find new avenues for providing support. I’m proud to be a supporter of the Standing in the Gaap program, which was created by the Celgene Corporation specifically for African Americans with multiple myeloma and the unique challenges they face. This initiative aims to bridge the gaps in care for our community and offers care information and Facebook resources to bring African American patients and caregivers closer to treatment and research.

At the Annual Myeloma Survival School, I learned that the LLS is working with the National Black Church Initiative to provide tools and resources to help African Americans better understand multiple myeloma treatment options and how to manage the disease. This is an excellent way to reach out to the community considering that religion is important to the lives of most African Americans.⁴ The Myeloma Link: Connecting African American Communities to Information, Expert Care, and Support initiative launched this year as a pilot program in churches in the Washington and Atlanta areas with the plan to expand to other African American communities across the country.

In the end, if we hope to overcome the racial disparities in multiple myeloma, the community must provide easily accessible information and support to African American caregivers and patients alike. That’s why I’ll continue sharing my personal story of caring for my husband and supporting initiatives like Standing in the Gaap so that everyone the community can someday have the care and support that they need.

1. Abouzaid S, Parikh K, Zhouet Z, al. Disparities in treatment patterns and outcomes between Caucasian and African American patients with multiple myeloma (MM). J Clin Oncol. 2016; 34:abstr 8022. http://meetinglibrary.asco.org/content/164623-176. Accessed October 2017.

2. National Cancer Institute. Cancer Stat Facts: Myeloma. 2017. https://seer.cancer.gov/statfacts/html/mulmy.html. Accessed October 2017.

3. Martin MY, Sanders S, Griffin JM, et al. Racial Variation in the Cancer Caregiving Experience: A Multi-Site Study of Colorectal and Lung Cancer Caregivers. Cancer Nursing. 2012;35(4):249-256. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326192/. Accessed October 2017. 4. Pew Research Center. Religion landscape study: racial and ethic composition. 2015. http://www.pewforum.org/religious-landscape-study/racial-and-ethnic-composition/. Accessed October 2017.