Elevating the Impacts of Autoimmune Disease and Black Women’s Health



By Syreen Goulmamine, MPH, SWHR Science Programs Manager

Autoimmune Diseases Landscape   

The human body has a built-in defense system – the immune system – that works like a surveillance system, protecting it from harmful invaders, such as germs and other foreign bodies. Sometimes the immune system can become confused and mistakenly attack the body’s own healthy cells instead. This persistent inflammation and damage can result in the development of an autoimmune disease, which can impact multiple parts of the body. 

Interestingly, these conditions tend to be more common in women than men. Approximately 50 million Americans have one or more autoimmune disease, with four out of five patients being women. Certain autoimmune diseases disproportionately impact women compared to men, such as systematic lupus erythematosus (also known as lupus), a condition that causes widespread inflammation that can impact the skin, joints, heart, lungs, kidneys, circulating blood cells, and brain, as well as other organs. Women between the ages of 15 and 44 years make up approximately 90% of lupus patients. Myasthenia gravis (MG) is a rare autoimmune condition in which the communication between nerves and muscles is destroyed, creating weakness of the skeletal muscles. While its prevalence is considered rare, with 14 to 20 cases per 100,000 people, more than 60% of MG patients are women, with the highest incidence occurring in women between the ages of 20 and 39. Rheumatoid arthritis, psoriasis, and Sjogren’s syndrome are examples of other autoimmune conditions that are also more prevalent in women.  

While it is unclear what makes someone more at risk for an autoimmune disease, especially considering the differences that exist among the more than 80 known autoimmune diseases, constructs, such as race and ethnicity, and social determinants of health, including education level, income, and other socioeconomic measures, are known to have an impact on health outcomes 

Recently, research has moved towards better understanding the intersectionality of race and sex and how it plays a role in shaping health outcomes. For example, in a 2018 study, race and ethnicity were identified as independent risk factors for a population with autoimmune hepatitis in San Francisco, California. In addition, research shows that African American patients make up approximately 38.5% of lupus patient cases, with Hispanic patients following at 13.9% of cases. Another study at University of Alabama Birmingham found that MG occurred earlier and more frequently in African American female patients, compared to white patients. 

Intersectional Patient Experiences and Health Disparities 

To address the critical issue of health disparities in autoimmune disease prevalence and care, it is crucial to set the stage by recognizing the multifaceted challenges that different communities face when accessing health care and other resources. For example, the intersectionality of race, gender identity, and socioeconomic status contributes to health care disparities among Black women living with autoimmune diseases. How an individual’s experiences are shaped by their identities and circumstances – from race and sex influenced interactions to education, geography, and access to quality health services – must be acknowledged and further studied to understand how these factors intersect and compound inequities in society and the health care system.  

Literature has revealed that constructs of race and ethnicity and socioeconomic factors are associated with delays in diagnosis, disease severity, and mortality from certain autoimmune conditions. For example, African American women are three times more likely to develop lupus than white women and often experience more severe symptoms and complications. One study showed that an increased frequency in racial discrimination was associated with greater lupus activity and organ damage. MG presents its own set of challenges. Beyond MG’s impact on daily life, some studies have shown women experience higher rates of admission to acute care centers and non-Hispanic Black patients have a 37% greater risk of experiencing an emergency department visit for MG compared to non-Hispanic Caucasian patients. A lack of access to quality care, including limited or no insurance coverage and the exorbitant cost of care, also showcases how Black women may experience certain socioeconomic factors at high rates. Delays to diagnosis for patients from underrepresented groups may also be due to mistrust of the medical field, which has been highlighted as a significant barrier to quality health care for Black women. The overarching theme of these findings is a health care system struggling to meet the diverse and complex needs of individuals with autoimmune disorders.  

A Call for Health Equity 

Acknowledging the disparities in health outcomes, many advocates and health care professionals have been working towards dismantling the prevalent misinformation and stigma surrounding autoimmune conditions in this demographic. By tailoring health care to the unique needs and perspectives of Black women and the intersectional experiences that they live through, initiatives should strive to bridge existing gaps in health care access and provide better quality care.  

Advocating for a health care system that is more equitable and inclusive entails fighting against institutionalized bias, eliminating discriminatory practices, and advocating for legislation that places a high value on cultural sensitivity and diversity. Such a system acknowledges and responds to the special, intersectional health needs of Black women and other women of color. This advocacy requires going beyond the level of the individual; it aims to bring about structural reforms that will improve Black women’s experiences and health outcomes in the larger context of health care. 

Shedding light on the disparities and inequitable access to resources and treatments for autoimmune diseases for Black women is another step of many that must be taken to promote comprehensive health care solutions that resonate with the diverse needs of women across communities of color.

Black History Month each February should serve as a reminder to actively engage in raising awareness and understanding of both the rich contributions and struggles of Black women in science and medicine and provoke a collective effort to promote health equality and justice throughout the year.  

Involvement in closing autoimmune health disparities gaps for Black women can range from posting educational content on social media to participating in local events and initiatives. The Society for Women’s Health Research encourage everyone to explore resources that delve into health equity for autoimmune diseases in women. Consider supporting or joining an organization committed to addressing disparities in health care, access, or research for autoimmune conditions that disproportionately affect Black women or other women of color. SWHR is proud to work with several of such organizations, including but not limited to Arthritis Foundation, Autoimmune Association, Bald Girls Do Lunch, Inc., Looms for Lupus and Lupus Research Alliance. 

Let us seize this opportunity to make an impact that starts this month and lasts for months and years to come! 

By Syreen Goulmamine, MPH, SWHR Science Programs Manager

Autoimmune Diseases Landscape   

The human body has a built-in defense system – the immune system – that works like a surveillance system, protecting it from harmful invaders, such as germs and other foreign bodies. Sometimes the immune system can become confused and mistakenly attack the body’s own healthy cells instead. This persistent inflammation and damage can result in the development of an autoimmune disease, which can impact multiple parts of the body. 

Interestingly, these conditions tend to be more common in women than men. Approximately 50 million Americans have one or more autoimmune disease, with four out of five patients being women. Certain autoimmune diseases disproportionately impact women compared to men, such as systematic lupus erythematosus (also known as lupus), a condition that causes widespread inflammation that can impact the skin, joints, heart, lungs, kidneys, circulating blood cells, and brain, as well as other organs. Women between the ages of 15 and 44 years make up approximately 90% of lupus patients. Myasthenia gravis (MG) is a rare autoimmune condition in which the communication between nerves and muscles is destroyed, creating weakness of the skeletal muscles. While its prevalence is considered rare, with 14 to 20 cases per 100,000 people, more than 60% of MG patients are women, with the highest incidence occurring in women between the ages of 20 and 39. Rheumatoid arthritis, psoriasis, and Sjogren’s syndrome are examples of other autoimmune conditions that are also more prevalent in women.  

While it is unclear what makes someone more at risk for an autoimmune disease, especially considering the differences that exist among the more than 80 known autoimmune diseases, constructs, such as race and ethnicity, and social determinants of health, including education level, income, and other socioeconomic measures, are known to have an impact on health outcomes 

Recently, research has moved towards better understanding the intersectionality of race and sex and how it plays a role in shaping health outcomes. For example, in a 2018 study, race and ethnicity were identified as independent risk factors for a population with autoimmune hepatitis in San Francisco, California. In addition, research shows that African American patients make up approximately 38.5% of lupus patient cases, with Hispanic patients following at 13.9% of cases. Another study at University of Alabama Birmingham found that MG occurred earlier and more frequently in African American female patients, compared to white patients. 

Intersectional Patient Experiences and Health Disparities 

To address the critical issue of health disparities in autoimmune disease prevalence and care, it is crucial to set the stage by recognizing the multifaceted challenges that different communities face when accessing health care and other resources. For example, the intersectionality of race, gender identity, and socioeconomic status contributes to health care disparities among Black women living with autoimmune diseases. How an individual’s experiences are shaped by their identities and circumstances – from race and sex influenced interactions to education, geography, and access to quality health services – must be acknowledged and further studied to understand how these factors intersect and compound inequities in society and the health care system.  

Literature has revealed that constructs of race and ethnicity and socioeconomic factors are associated with delays in diagnosis, disease severity, and mortality from certain autoimmune conditions. For example, African American women are three times more likely to develop lupus than white women and often experience more severe symptoms and complications. One study showed that an increased frequency in racial discrimination was associated with greater lupus activity and organ damage. MG presents its own set of challenges. Beyond MG’s impact on daily life, some studies have shown women experience higher rates of admission to acute care centers and non-Hispanic Black patients have a 37% greater risk of experiencing an emergency department visit for MG compared to non-Hispanic Caucasian patients. A lack of access to quality care, including limited or no insurance coverage and the exorbitant cost of care, also showcases how Black women may experience certain socioeconomic factors at high rates. Delays to diagnosis for patients from underrepresented groups may also be due to mistrust of the medical field, which has been highlighted as a significant barrier to quality health care for Black women. The overarching theme of these findings is a health care system struggling to meet the diverse and complex needs of individuals with autoimmune disorders.  

A Call for Health Equity 

Acknowledging the disparities in health outcomes, many advocates and health care professionals have been working towards dismantling the prevalent misinformation and stigma surrounding autoimmune conditions in this demographic. By tailoring health care to the unique needs and perspectives of Black women and the intersectional experiences that they live through, initiatives should strive to bridge existing gaps in health care access and provide better quality care.  

Advocating for a health care system that is more equitable and inclusive entails fighting against institutionalized bias, eliminating discriminatory practices, and advocating for legislation that places a high value on cultural sensitivity and diversity. Such a system acknowledges and responds to the special, intersectional health needs of Black women and other women of color. This advocacy requires going beyond the level of the individual; it aims to bring about structural reforms that will improve Black women’s experiences and health outcomes in the larger context of health care. 

Shedding light on the disparities and inequitable access to resources and treatments for autoimmune diseases for Black women is another step of many that must be taken to promote comprehensive health care solutions that resonate with the diverse needs of women across communities of color.

Black History Month each February should serve as a reminder to actively engage in raising awareness and understanding of both the rich contributions and struggles of Black women in science and medicine and provoke a collective effort to promote health equality and justice throughout the year.  

Involvement in closing autoimmune health disparities gaps for Black women can range from posting educational content on social media to participating in local events and initiatives. The Society for Women’s Health Research encourage everyone to explore resources that delve into health equity for autoimmune diseases in women. Consider supporting or joining an organization committed to addressing disparities in health care, access, or research for autoimmune conditions that disproportionately affect Black women or other women of color. SWHR is proud to work with several of such organizations, including but not limited to Arthritis Foundation, Autoimmune Association, Bald Girls Do Lunch, Inc., Looms for Lupus and Lupus Research Alliance. 

Let us seize this opportunity to make an impact that starts this month and lasts for months and years to come!