“Lupus is a long-term fight,” she said. “You’ll have to work at it every single day. So, celebrate what you’re able to do and understand that some days your body is not always going to respond the way you think it should. But it doesn’t take anything away from who you are individually. It takes nothing away from your power.”
Monique has found many “silver linings” along her journey. She works as an ambassador for the Lupus Foundation of America, and as a Diversity, Equity and Inclusion champion, and patient board and steering committee member, for the COVID Global Rheumatology Alliance, a division of the American College of Rheumatology, one of the leading institutions conducting research in rheumatic diseases. She works to provide access to information and research about COVID-19 and the vaccine to rheumatic patients.
Her advocacy work has allowed Monique to see more patients advocating for themselves, doing more research, and joining clinical trials, particularly patients from historically underrepresented communities. Her service can also take a deeply personal touch. Hair thinning or loss is an early symptom of lupus, and when Monique began losing hers, she discovered that natural-looking, stylish wigs were hard to find and quite expensive. Because there is not the same level of awareness of the link between lupus and hair loss that exists for conditions such as cancer, there are not as many “wig drives” and hair donations for those patients. So when Monique meets fellow lupus patients, she will often respond to any admiring inquiry about her own hair with an offer to make that patient a wig of her own. A gifted amateur hair stylist, Monique may make a dozen or so wigs a year, her time and energy permitting, so that those women can “decide how they feel like showing up in the world, how they present themselves.”
Elevating the patient is extremely important to Monique, and she hopes scientists and researchers are poised to listen to their voices. “The first thing you should do is ask the patient. The last thing you should do is ask the patient. The patient should be the primary focal point in everything that you do,” she said.
Strong researcher-patient relationships are a key part of advancing the science to find more treatments and one day a cure for lupus, Monique said.
Bristol Myers Squibb has ongoing trials in the lupus space and is committed to pursuing innovative approaches to offering personalized medicine options for lupus patients. Our researchers are exploring multiple targets for drug development in lupus that may lead to effective therapies for the lupus population. The exploration of disease pathways and novel biomarkers help further our understanding of the disease biology, advance potential treatment options, and provide hope of long-lasting relief for lupus patients like Monique.
