“Our lives begin to end the day we become silent about things that matter.”
- Martin Luther King Jr.
In honor of Black History Month, More Than Lupus is initiating a purpose driven symposium focusing on how lupus affects the African American Community. The Symposium, happening on Saturday, February 29th 2020, will shine a light on the underrepresented African American community, the history of health disparities, African American heterogeneity, clinical trial challenges, social bias, stigmas, and more. It will include two educational speakers, as well as an open discussion with community representatives, highlighting crucial information for the health community and beyond.
Lupus and African Americans
Unfortunately, a staggering two-thirds of Americans know little or nothing about lupus. A disease that disproportionately affects women, and in particular, women of color. Recent research indicates that 1 in 250 African American women will develop lupus. Lupus is more common, occurs at a younger age, and is more severe in African Americans.
African Americans with SLE are also:
2 to 4 times more likely to have renal disease.
2 to 4 times more likely to have cardiovascular disease and infections.
3.5 times more likely to have pneumonia.
2 times more likely to develop bacteria and sepsis.
More likely to suffer multiple orgran involvement resulting in earlier mortality rates
More likely to develop discoid lupus (DLE).
Why? No one knows. It is not known why lupus is more common and often more severe in African Americans. This needs to change. This blog is intended to provide you with insights into this extremely important topic, so that hopefully, we can be a part of the change.
In a recent study involving African Americans with lupus, there were several recurring themes expressed during the training groups regarding challenges within the community. These themes included poor patient-provider communication, and ongoing racial and gender discrimination.
Candace Feldman, MD, ScD, one of the doctors involved with the study and a part of the LFA’s Medical-Scientific Advisory Committee said this, “It remains essential for us to better understand why racial/ethnic disparities continue to exist and to develop interventions to address them. Strategies must span beyond hospitals and doctor’s offices and include patients and their neighborhoods, and they must address the structural, social and political barriers that still prevent many individuals from achieving good health.”
Community Based Resolution
Additionally, the study above highlighted how a community-based approach to lupus education and awareness helps improve academic-community dialogues and amplify the patient voice in the African American community.
The Office of Minority Health spearheaded this study, which took community members with large social networks in mostly African American neighborhoods, trained them, then had them lead lupus educational sessions. As a result of this training, the community was strengthened, and important information about lupus was disseminated among the groups.
Besides it being a successful outreach study, it also shed light on the continuing challenges of African Americans living with lupus. Those involved provided feedback to their community members, sharing their feelings on not just the physical misunderstandings of the disease, but the psycho-social effects as well. The socioeconomic barriers with African American men with lupus was also a pressing challenge.
Moving Forward By Acknowledging the Issue
As a lupus community as a whole, we are not going to make much progress or even potentially find a cure if we don't attempt to understand the majority of those who are affected by the disease. In order for us to move forward, we need to acknowledge the past, and promote open conversations about why there are still medical and social discrepancies in the African American community today.
It is an injustice that needs to be addressed, and as Dr. King stated, "An injustice anywhere, is a threat to justice everywhere."
We, at More Than Lupus, encourage everyone in the Portland area to attend the symposium on the 29th. Our Keynote speaker is Dr. Brian Gibbs, former Vice President of Equity and Inclusion at Oregon Health & Science University (OHSU). He will be addressing the history of health disparities in the African American community and present barriers.
Dojo Aguilar from GSK will be addressing how lupus presents uniquely in African Americans and improving doctor patient communication. Community panel Q&A session will close out the day.
Please join us for this free event. Lunch included. Saturday, February 29th 2020 10:00 AM to 1:00 PM The Atrium at Legacy Emanuel Medical Center 2801 N Gantenbein Ave, Portland, OR 97227
*This is the first of three symposiums in the Lupus in Minorities Health Series focusing on the African American, Hispanic, and Asian communities living with lupus. More Than Lupus is proud to collaborate with Looms For Lupus and Christine Von Raesfeld, some of the top West Coast Patient Advocates, each of whom represent different minorities living with lupus.
Take a moment to watch MORE THAN LUPUS on Afternoon Live discussing how lupus affects the American American Community here.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.