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The Struggles Behind An Invisible Disease

The Struggles Behind An Invisible Disease

The following comments from Liz Bodin, Vice President, US Respiratory & Immunology, AstraZeneca, have been lightly edited for clarity and length.

Lupus is a complex, chronic disease that impacts the body’s immune system.1,2 Each experience with lupus is completely unique, as symptoms can vary across the entire body and be unpredictable from person to person.2 Systemic lupus erythematosus (SLE), the most common form of lupus, affects up to 300,000 Americans—disproportionately impacting women of African American, Hispanic and Asian descent.1,2,3 The uniqueness of this disease makes it challenging to treat as there isn’t a one-size-fits-all type of disease management.2 People living with SLE experience burdens that severely affect their quality of life, especially when it comes to their physical, emotional and financial health.1 There is a continued and urgent unmet need in the lupus community. These patients deserve better–they deserve more. That’s why we’ve convened advocacy groups and professional societies from across the lupus community to discuss what more can be done to better serve patients. From this conversation, we uncovered the following insights that need to be prioritized and addressed in order to help people living with SLE experience the life they deserve.

No Need To Accept The Status Quo In SLE

We know from listening to people living with SLE that they experience a variety of emotional, physical and socioeconomic burdens that can affect their ability to perform day-to-day activities.1 In light of these daily challenges, the Lupus Foundation of America has found people living with SLE want to better manage their lupus and improve their quality of life but don’t always know where to start. “We recognized that people are looking for support and developed SELF (Strategies to Embrace Living with Lupus Fearlessly), a free online program designed to empower people with lupus to build and enhance skills in lupus self-management,” said Stevan W. Gibson, president and CEO of the Lupus Foundation of America. Programs like SELF help put people living with lupus in the driver’s seat of their disease, so they can live their best life.

Affordability, Access And Equity At The Core Of SLE Care

SLE patients often have trouble not only gaining access to care, but the right care due to issues within the larger healthcare ecosystem.4 Adult SLE patients are more likely to be publicly insured, like Medicare and Medicaid, have lower family incomes and lower employment rates compared to those not living with SLE. Many find it difficult to maintain their jobs due to constant pain, further contributing to their financial instability.5 In the field of rheumatology, Dr. Madelaine Feldman, president of the Coalition of State Rheumatology Organizations said, “As science progresses and we learn more about SLE, we need the whole patient experience to be considered. There are many other diseases that have substantial access to care–unlike SLE, which does not. There is an opportunity to apply our learnings from those disease states, through determined advocacy for our patients, in order to improve access to care and improve patient outcomes for SLE.”

The Side Of SLE You Might Not See

From our conversations with patients, professional societies and advocacy groups, we’ve learned that pain, fatigue and anxiety are often difficult for healthcare providers to measure, and for loved ones to understand. However, these are the “invisible symptoms” that define many people’s SLE experience. On top of what patients might be physically feeling, there are other factors that contribute to underlying stress and poor mental health, such as struggling to trust their physician, taking care of their family, working a job while in pain and experiencing cultural shame. Kathleen A. Arntsen, president and CEO of the Lupus and Allied Diseases Association, who knows firsthand the daily struggles and journey of living with lupus, noted, “Being diagnosed with lupus is a life-altering experience that steals our future hopes, dreams and aspirations. As we grieve our previous life, we are forced to reinvent ourselves as this invisible disease and its unpredictable symptoms take control of our lives.”

Risks Of Uncontrolled Lupus

Many patients have expressed that it can be a burden to get to a doctor’s office – this burden has been heightened during the pandemic for people who are immunocompromised, making the decision to see a provider much more difficult. Such a decision can cause people living with SLE to postpone care until it’s necessary, putting their long-term health at risk.1 In addition, comorbidities are significantly higher for adults living with SLE and may be caused by this delayed treatment, overuse of steroids and more.2 “With early and appropriate referral to a rheumatologist, a person’s treatment plan can be specifically tailored by pinpointing which therapies are most effective, saving money and valuable time on poorly applied, and possibly ineffective treatments reducing the financial burden on patients and their families,” said Starla Blanks, M.B.A, M.P.H, senior director, Collaborative Initiatives. “The American College of Rheumatology is addressing the need for early diagnosis and high-quality disease management through the educational campaigns led by our Lupus Initiative and RISE registry,” said Blanks, referring to the Rheumatology Informatics System for Effectiveness (RISE), which is a database rheumatology professionals and researchers use to improve the care of patients.

Bringing Diverse And Culturally Representative Care To SLE Patients

SLE patients need equitable and quality care that is culturally representative of their needs. To achieve this, shortfalls in the healthcare ecosystem such as the lack of SLE disease education and the diversity of clinical trial participants must be addressed. Providers can help by openly listening to patient needs, offering resources that many patients are unaware of and continuing to stay educated on the signs and symptoms of SLE. Ebony Scott, Director of Health Equity for the Lupus Research Alliance and its affiliate Lupus Therapeutics, noted that our goal is to increase the representation of underrepresented communities in clinical trials. “We established Project CHANGE to partner with our lupus community in developing multi-faceted, comprehensive action plans that increase meaningful, equitable and supported clinical trial awareness, and participation and retention among African Americans diagnosed with SLE in the U.S.,” continued Scott.


A call for change is not only needed but expected. The lupus advocacy community has already made progress around these key insights through many programs such as SELF, the RISE registry, and Project CHANGE, but more still needs to be done to address the health inequities that continue to burden patients. As partners to these advocacy groups, we are committed to understanding and elevating the needs of the patient community, and using these insights to drive innovation to accelerate the delivery of treatment options. People living with lupus deserve to focus on what truly matters–getting better, becoming well and confidently living their lives to the fullest.


1 Centers for Disease Control and Prevention. Systemic Lupus Erythematosus (SLE). Accessed June 2022. Available at: https://www.cdc.gov/lupus/facts/detailed.html.

2 Allen ME, Rus V, Szeto GL. Leveraging Heterogeneity in Systemic Lupus Erythematosus for New Therapies. Trends Mol Med. 2021;27(2):152-171.

3 Izmirly PM, Parton H, Wang L, et al. Prevalence of systemic lupus erythematosus in the United States: estimates from a meta-analysis of the Centers for Disease Control and Prevention National Lupus Registries. Arthritis Rheumatol. 2021;73,(6):991–996.

4 Murimi-Worstell IB, Lin DH, Kan H, et al. Healthcare utilization and costs of systemic lupus erythematosus by disease severity in the United States. J Rheumatol. 2021;48(3):385-393. doi:10.3899/jrheum.191187.

5 Lupus Foundation of America. Lupus facts and statistics. Available at: https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed June 13, 2022.

6 Kyttaris VC. Systemic lupus erythematosus: from genes to organ damage. Methods Mol Biol. 2010;662:265-283.

7 Apostolopoulos D, Morand EF. It hasn’t gone away: the problem of glucocorticoid use in lupus remains. Rheumatology (Oxford). 2017;56(suppl 1):i114-i122.

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