In my experience as a rheumatologist, I’ve seen firsthand the barriers that prevent people living with lupus from receiving timely and comprehensive care. This is particularly true for lupus nephritis (LN), a serious and common complication of lupus, amongst the toughest challenges in autoimmune disease. This results in people living with LN frequently being overlooked, misunderstood, and left to wait.
I joined Aurinia because I was driven by the Company’s passion to help people with autoimmune diseases live better lives. This Lupus Awareness Month, we’re deepening our steadfast commitment to the LN community with LN in Focus, which will shine a light on the untold, unrecognized stories of people living with LN. Throughout this month and beyond, LN in Focus will uplift the voices of those impacted by LN, offer educational resources, and highlight key partnerships and advocacy initiatives that aim to improve health outcomes.
Why we’re putting LN in Focus
LN disproportionately impacts historically underserved and underrepresented communities, particularly women of color. In fact, it's four times more prevalent in Black and Asian women and two times higher in Hispanic and Native American women, compared to white women.1 People living with LN often face significant barriers to receiving optimal care and have high unmet needs — which can impact health outcomes.
Up to 45% of lupus patients may develop LN.2-5 Despite this high prevalence, only about 50% of lupus patients ever receive appropriate screening. Patients with LN are at risk of nephron loss, kidney failure, and premature death. Early diagnosis and treatment are essential to improving outcomes.6-10
By putting LN in Focus, we can help strengthen collaborative efforts across the healthcare ecosystem by elevating the powerful experiences of people living with LN and raising awareness and understanding.
How we’re putting LN in Focus
Throughout Lupus Awareness Month and beyond, we’re doubling down on our education and advocacy efforts. This includes impactful patient storytelling as well as the recent launch of our disease state education campaign for rheumatologists, Know the Signs, which aims to improve health outcomes for people living with LN by increasing awareness and education around the signs of LN and the importance of kidney health, including routine screening.
We also recently supported the National Minority Health Association’s Lupus Call to Action Day on May 1 in New York City. This event featured interviews and conversations with healthcare stakeholders and others in the lupus community to drive awareness and to discuss challenges and ways to improve health equity among people with lupus and lupus nephritis.
Lastly, Aurinia is a dedicated partner of the LN community and will continue to participate in events across the country throughout the year to promote awareness and uplift the people living with LN. In May alone, our teams are attending over 40 events across 16+ states, including the Lupus Research Alliance LuCIN Meeting in San Diego, CA and the Lupus Foundation of America Advocacy Day in Washington, D.C. We’re also proud to be hosting Representative Berny Jaques, Dr. Monica Shah, and Marisa, a person living with lupus, at our Legislative Townhall in Tampa, FL on May 18.
At Aurinia, we all have a deep-rooted passion to help raise awareness of the serious impacts of LN and hopefully help shift the treatment paradigm to ensure that people living with LN are receiving the care that’s right for them. I’m more motivated than ever to continue to raise the LN standard of care and helping everyone living with LN achieve better health outcomes.
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References
- Lupus Foundation of America. "Lupus Facts and Statistics." Lupus Foundation of America, https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed 15 September 2023.
- Lim SS, Bayakly AR, Helmick CG, Gordon C, Easley KA, Drenkard C. The incidence and prevalence of systemic lupus erythematosus, 2002-2014: the Georgia Lupus Registry. Arthritis Rheumatol. 2014;66(2):357-368. doi:10.1002/art.38239
- Somers EC, Marder W, Cagnoli P, et al. Population-based incidence and prevalence of systemic lupus erythematosus: the Michigan Lupus Epidemiology and Surveillance program. Arthritis Rheumatol. 2014;66(2):369-378. doi:10.1002/art.38238
- Izmirly PM, Wan I, Sahl S, et al. The incidence and prevalence of systemic lupus erythematosus in New York county (Manhattan), New York: the Manhattan Lupus Surveillance Program. Arthritis Rheumatol. 2017;69(10):2006-2017. doi:10.1002/art.40192
- Dall’Era M, Cisternas MG, Snipes K, Herrinton LJ, Gordon C, Helmick CG. The incidence and prevalence of systemic lupus erythematosus in San Francisco county, California: the California Lupus Surveillance Project. Arthritis Rheumatol. 2017;69(10):1996-2005. doi:10.1002/art.40191
- Hanly JG, O'Keeffe AG, Su L, et al. The frequency and outcome of lupus nephritis: results from an international inception cohort study. Rheumatology (Oxford). 2016;55(2):252-262. doi:10.1093/rheumatology/kev311
- Anders HJ, Saxena R, Zhao M-H, Parodis I, Salmon JE, Mohan C. Lupus nephritis. Nat Rev Dis Primers. 2020;6(1):7. doi:10.1038/s41572-019-0141-9
- Anders HJ, Rovin B. A pathophysiology-based approach to the diagnosis and treatment of lupus nephritis. Kidney Int. 2016;90(3):493-501. doi:10.1016/j.kint.2016.05.017
- Fanouriakis A, Kostopoulou M, Cheema K, et al. 2019 update of the Joint European League Against Rheumatism and European Renal Association-European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of lupus nephritis. Ann Rheum Dis. 2020;79(6):713-723. doi:10.1136/annrheumdis-2020-216924
- Fanouriakis A, Kostopoulou M, Alunno A, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78(6):736-745. doi:10.1136/annrheumdis-2019-215089