Examining Lupus Health Disparities for Lupus Awareness Month
This Lupus Awareness Month, the Society for Women’s Health Research (SWHR) is reflecting on the need for urgent action to close the gender, race, and ethnic disparities in lupus outcomes. A review published in Rheumatology in April 2023 explores whether differences in lupus prevalence, severity, and treatment efficacy can be explained by genetics. Its conclusions sharply underscore the health disparities we already know to be true:
- The strongest risk factor for developing systemic lupus erythematosus (SLE) is being female. Data show 90% of lupus patients are women aged 15-44.
- Lupus is most common among people of African ancestry, followed by those of Hispanic or Asian ancestry, and is least common among Caucasians. Previous studies concluded 1 in 250 young African American women have lupus, which is nearly double its prevalence in white women.
- People of non-European ancestry experience more severe lupus symptoms and related health outcomes. Patient outcomes show that women of color tend to develop lupus at a younger age, experience more serious complications, and have higher mortality rates
Clearly, there is work to be done. While addressing health disparities is always easier said than done, by working with individuals at all corners of the health care ecosystem, meaningful change is possible. Central to these efforts are the following:
Funding Research
Closing gaps in disparities starts with knowledge and research – and research requires funding. Following a recommendation from the National Academies of Sciences, Engineering, and Medicine (NASEM), the Biden Administration recently allotted funding for a new Office of Autoimmune Disease Research (OADR) within the National Institutes of Health’s Office of Research on Women’s Health (ORWH). OADR has the potential to bring unprecedented funding and focus to research on autoimmune and immune-mediated diseases, such as lupus. Further, this research can build on current research that looks at the unique mechanisms and other factors, including the “why and how,” behind these conditions. SWHR supported the establishment of OADR as part of its 2022 Autoimmune Policy Agenda, and we are eager to collaborate with ORWH as OADR becomes a reality.
Advancing Treatments and Coverage
There is no cure for lupus, but everyday wellness is within reach with the proper care plan. SWHR called for the development of improved treatment options in its Lupus Call to Action last summer. Better lupus treatments – and access to treatments – are crucial to address barriers and health disparities among women living lupus. SWHR is excited by the ongoing diagnostic and treatment therapeutic advances in the field, from more informed maternal care for lupus patients to wider lupus clinical trials, and we are encouraged to see how greater funding will help foster ongoing innovation.
Building Awareness
SWHR is dedicated to greater lupus awareness and education and recently added lupus as a focus area of the Women’s Health Equity Initiative, which highlights lupus data and disparities for women in the United States, across race and ethnicity, geography, age, and their role as caregivers. Last year, SWHR worked with researchers, clinicians, patient advocates, and caregivers to publish the Living Well With Lupus Toolkit. “We need to normalize physicians recognizing and discussing lupus symptoms with their patients,” said SWHR Working Group member Dr. Irene Blanco. SWHR also hosted a three-part webinar series titled, “Closing the Loop for Lupus,” which shared personal reflections from women living with lupus. “As patients, we have to learn how to speak up for ourselves and ask for help when living with lupus; it’s your sole responsibility to take care of yourself,” said SWHR Working Group member and lupus advocate Ayanna Dookie during one such event. All of these materials are available at swhr.org and on social media at #SWHRtalksLupus.
SWHR is also proud to engage with many organizations that are moving the needle forward on lupus research and care. Recent partners include, but are not limited to, the Association for Behavioral Health and Wellness; the American College of Rheumatology; the Employers Health Coalition; the American Academy of Dermatology Association; Looms for Lupus; the National Association of Chronic Disease Directors; and the Lupus Research Alliance. This May and every month, these groups are doing incredible work.
Lupus Awareness Month occurs at an optimal time of year, following Minority Health Month in April and coinciding with Women’s Health Month in May. There has never been a more appropriate time to recommit ourselves to reversing lupus health disparities and supporting a healthier life for individuals living with lupus, no matter their age, location, gender, race, or ethnicity.
Do you have a lupus story to share, as an individual living with lupus or a lupus caregiver? Your story could help educate and inform other women who may be going through a similar experience. Share your health story with SWHR online here.
This Lupus Awareness Month, the Society for Women’s Health Research (SWHR) is reflecting on the need for urgent action to close the gender, race, and ethnic disparities in lupus outcomes. A review published in Rheumatology in April 2023 explores whether differences in lupus prevalence, severity, and treatment efficacy can be explained by genetics. Its conclusions sharply underscore the health disparities we already know to be true:
- The strongest risk factor for developing systemic lupus erythematosus (SLE) is being female. Data show 90% of lupus patients are women aged 15-44.
- Lupus is most common among people of African ancestry, followed by those of Hispanic or Asian ancestry, and is least common among Caucasians. Previous studies concluded 1 in 250 young African American women have lupus, which is nearly double its prevalence in white women.
- People of non-European ancestry experience more severe lupus symptoms and related health outcomes. Patient outcomes show that women of color tend to develop lupus at a younger age, experience more serious complications, and have higher mortality rates
Clearly, there is work to be done. While addressing health disparities is always easier said than done, by working with individuals at all corners of the health care ecosystem, meaningful change is possible. Central to these efforts are the following:
Funding Research
Closing gaps in disparities starts with knowledge and research – and research requires funding. Following a recommendation from the National Academies of Sciences, Engineering, and Medicine (NASEM), the Biden Administration recently allotted funding for a new Office of Autoimmune Disease Research (OADR) within the National Institutes of Health’s Office of Research on Women’s Health (ORWH). OADR has the potential to bring unprecedented funding and focus to research on autoimmune and immune-mediated diseases, such as lupus. Further, this research can build on current research that looks at the unique mechanisms and other factors, including the “why and how,” behind these conditions. SWHR supported the establishment of OADR as part of its 2022 Autoimmune Policy Agenda, and we are eager to collaborate with ORWH as OADR becomes a reality.
Advancing Treatments and Coverage
There is no cure for lupus, but everyday wellness is within reach with the proper care plan. SWHR called for the development of improved treatment options in its Lupus Call to Action last summer. Better lupus treatments – and access to treatments – are crucial to address barriers and health disparities among women living lupus. SWHR is excited by the ongoing diagnostic and treatment therapeutic advances in the field, from more informed maternal care for lupus patients to wider lupus clinical trials, and we are encouraged to see how greater funding will help foster ongoing innovation.
Building Awareness
SWHR is dedicated to greater lupus awareness and education and recently added lupus as a focus area of the Women’s Health Equity Initiative, which highlights lupus data and disparities for women in the United States, across race and ethnicity, geography, age, and their role as caregivers. Last year, SWHR worked with researchers, clinicians, patient advocates, and caregivers to publish the Living Well With Lupus Toolkit. “We need to normalize physicians recognizing and discussing lupus symptoms with their patients,” said SWHR Working Group member Dr. Irene Blanco. SWHR also hosted a three-part webinar series titled, “Closing the Loop for Lupus,” which shared personal reflections from women living with lupus. “As patients, we have to learn how to speak up for ourselves and ask for help when living with lupus; it’s your sole responsibility to take care of yourself,” said SWHR Working Group member and lupus advocate Ayanna Dookie during one such event. All of these materials are available at swhr.org and on social media at #SWHRtalksLupus.
SWHR is also proud to engage with many organizations that are moving the needle forward on lupus research and care. Recent partners include, but are not limited to, the Association for Behavioral Health and Wellness; the American College of Rheumatology; the Employers Health Coalition; the American Academy of Dermatology Association; Looms for Lupus; the National Association of Chronic Disease Directors; and the Lupus Research Alliance. This May and every month, these groups are doing incredible work.
Lupus Awareness Month occurs at an optimal time of year, following Minority Health Month in April and coinciding with Women’s Health Month in May. There has never been a more appropriate time to recommit ourselves to reversing lupus health disparities and supporting a healthier life for individuals living with lupus, no matter their age, location, gender, race, or ethnicity.
Do you have a lupus story to share, as an individual living with lupus or a lupus caregiver? Your story could help educate and inform other women who may be going through a similar experience. Share your health story with SWHR online here.