Rethinking Lupus Care: Empowering Underserved Communities

For decades, Biogen has been committed to providing meaningful solutions for those impacted by lupus – and more recently is focusing on addressing the unique health challenges faced by Black patients, such as delayed diagnosis and inequitable healthcare access. By engaging in impactful community-based events, such as the Bayou Classic, an annual, highly anticipated event and college football game between Grambling State and Southern University, two historically Black colleges and universities (HBCUs) – we aim to build authentic connections with the Black community to better understand their needs and increase participation in clinical trials to help improve healthcare outcomes.

Lupus: More than a Disease—A Complex Battle 

Lupus is not just a disease; it’s a complex and multifaceted battle that is difficult to diagnose and disproportionately impacts the Black community, causing significant healthcare challenges. Systemic lupus erythematosus (SLE), a chronic autoimmune disease, can cause the body’s immune system to attack its own tissues, leading to widespread inflammation and potential permanent damage to vital organs such as the skin, joints, heart, kidneys, lungs, blood cells and even the brain.¹

The Disproportionate Burden of Lupus on Black Communities

Although lupus affects people of all racial and ethnic backgrounds, it disproportionately impacts more women of Black, Hispanic, Asian/Pacific Islander, and American Indian and Alaska Native (AI/AN) backgrounds than White populations.² Black men have the highest incidence rate compared to males of other races.²  In fact, Black individuals face the most severe outcomes, enduring significantly higher mortality rates and encounter the challenges of the disease at a younger age compared to their White counterparts.³

The significant mortality gap between Black and non-Hispanic white lupus patients is startling. For example, according to the Georgia Lupus Registry (2000-2015) Black women with lupus died an average 13 years earlier than their non-Hispanic white counterparts.⁴ Moreover, Black individuals with lupus often experience a shorter survival time post diagnosis.⁵ For Black women, the impact of the condition is especially severe, as they are two to three times more likely to develop lupus than White women,² often facing more severe manifestations of the disease. This underscores the urgent need for true engagement – meeting communities where they are, fostering genuine connections, and building relationships and trust, even in non-healthcare settings to help improve overall quality of life. 

Innovative Collaborations to Address Inequities in Lupus Care

As part of our efforts to foster open discussions around lupus and increase diverse trial participation, we are committed to collaborating with organizations like the National Medical Association (NMA), the largest and oldest national organization representing Black physicians and their patients and at community events like the Bayou Classic. Through these partnerships we’ve had the opportunity to connect with Black doctors and facilitate conversations with community members about their experience within the healthcare system. 

“Learning from primary physicians on the ground in the Black community is so important as we shape Biogen’s health equity and community engagement strategy,” explained Lauren Powell, MPA, PhD, Head of Health Equity Drug Development at Biogen. “Their input and perspective can help bring us one step closer to delivering the care patients need.” This pilot activation serves as a foundation for Biogen to build on in 2025 as we look for new opportunities to engage the Black and Brown community and move our health equity goals forward. 

Paving the Path to Equitable Healthcare for All

At Biogen, we plan to address health inequities by meeting all communities where they are so that we can cultivate authentic connections through cultural humility and true community engagement. We work hand-in-hand with healthcare professionals and community leaders, understanding that collaborative efforts are key to driving meaningful change. By making clinical trials more accessible and co-creating culturally relevant resources, we continue to aim to dismantle systemic barriers and improve the quality of care and access to life-changing therapies.

Our mission is clear: all patients, regardless of their background, deserve access to the best care possible. By prioritizing diversity in clinical research, we strive to develop more effective and inclusive treatments and pave the way for a more equitable healthcare future for all.