Lupus nephritis (LN) is one of the toughest challenges in autoimmune disease and most serious and common complications of systemic lupus erythematosus (SLE). LN is associated with a significantly elevated risk of kidney failure,1 and disproportionately affects people of color with a risk: four times higher for people of African and Asian descent and two times higher for Hispanic and native peoples.2
At Aurinia, we know that people living with LN have the best health outcomes when we help remove barriers to care. In my role as Executive Director of Government Affairs, I have the honor of working towards this goal each and every day through close engagement with key policymakers and patients with LN – a community who is often overlooked and misunderstood. I am passionate about closing the gap to accessing quality care and treatment, and work tirelessly with my team to educate and empower patients so that we can help improve health outcomes for all.
In honor of National Kidney Month, I recently had the opportunity to sit down with Gabrielle, a former news journalist turned lupus patient and advocate, to discuss improving outcomes in lupus nephritis, and to raise awareness about the importance of equitable access to care.
We’ve had the pleasure of working closely with you for the past 7 years, but can you share with us how and when you were diagnosed with lupus? And then subsequently with lupus nephritis?
Looking back, I believe that my lupus symptoms first began in college. I remember just being tired all the time and struggling with pain, but things really came into focus on Valentine's Day 2009. My husband and I were celebrating our first Valentine’s Day as a married couple and all day I had really bad joint pain. I was dehydrated and just incredibly fatigued. That night I went to the ER because I was in so much pain I could barely walk, and I ended up spending four days in the hospital. About five months later, I was officially diagnosed with systemic lupus erythematosus.
How long after your lupus nephritis diagnosis did you learn that your kidneys were in renal failure? What was that like for you?
In April 2009 I started exhibiting signs of kidney disease because of the lupus. We did a biopsy and they saw that there was already scarring. It was absolutely crushing. My heart sank further when I found out that my kidney function had diminished to the point that I needed dialysis. Being on dialysis for 9 hours every night added another layer of complexity that really uprooted my life. But at the end of the day, it was a lifestyle change, not a death sentence. I was fortunate enough to receive a kidney transplant in 2021.
You’ve drawn on your personal experience with lupus to raise awareness, particularly within underserved communities. Tell me about your advocacy efforts.
After my diagnosis, I founded Lupus Sistas to connect, educate, and support the lupus community—particularly Black women who are four times more likely to be diagnosed with lupus than White women.2 I also contribute to lupus education efforts locally and nationally by supporting the Lupus Foundation of America’s Southeast Region, serving as a patient leader within the healthcare industry, and writing about my life and my experiences for Lupus.net and ChronicKidneyDisease.net.
We have seen first-hand that people living with lupus nephritis often face significant barriers to accessing care. In your own experience and working with the lupus community, what are some of the biggest challenges?
It is a full-time job taking care of yourself. It can be mind-numbing sometimes. When you can't even get out of bed, but you have to force yourself because you know you have to make money, you have bills to pay, you know you have a household to keep up. And for many people, especially people from historically underrepresented groups, things like food insecurity, limited health literacy and support systems, and even something as simple as a lack of access to transit make things even more difficult.
We’re very grateful for the critical role you’ve played at some of Aurinia’s Legislative Town Halls, which were launched as part of our commitment to establishing a consistent and meaningful presence in communities with increased prevalence of LN. Why do you think it is so important to support local initiatives?
Support is essential for people living with LN. Aurinia’s Legislative Town Halls help raise awareness around LN in places most affected, like Atlanta, Austin and Orlando. I participate because it is vital that we facilitate powerful discussions about the challenges of living with LN and complications, like kidney disease. It’s been so impactful for me to connect with these communities and share my story so I can help empower others to stay strong and advocate for the care that’s right for them.
What advice would you share with someone who was just diagnosed with LN?
I’ve been through it. I’ve spent those long nights on dialysis. I’ve gone through a kidney transplant. It isn’t easy, but you just have to keep going. You must be your own advocate because only you know what you're feeling. Nobody can take your experiences away from you. Build your care team and ensure that you’re continuing to screen and regular follow up care to help manage symptoms. There's not a lot that we can control, but when you feel like you're doing the very best to take care of yourself, it gives you more hope to live a good life with this disease.
Stories like Gabrielle’s inspire our tireless work to expand access to educational materials, screenings and treatment options through close partnerships with patients and policymakers. We believe that the possibilities to improve the lives of people living with autoimmune diseases like LN are vast and will continue to help remove barriers to care so that every person living with LN can live a better, healthier life.
Authored by Engel Burns, Executive Director Government Affairs, Aurinia, and featuring Gabrielle Davis, lupus and lupus nephritis advocate
References
- Kelly, Robin. "2015 Kelly Report." Robin Kelly - Official Website, https://robinkelly.house.gov/sites/evo-subsites/robinkelly.house.gov/files/2015%20Kelly%20Report_0.pdf. Accessed 15 September 2023.
- 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.
